Anne Abate: Speaking Out for Breast Cancer Patients & Survivors

Anne Abate

I have learned many things in the last few years. These are things that I hope nobody else ever has to learn. While I am a strong proponent of continuing education for everyone, you will see why I don’t want anyone to follow my path.

In February of 2002, (February 14 to be exact) I was diagnosed with an aggressive disease known as Inflammatory Breast Cancer. This is not your regular “plain vanilla” breast cancer, and it is not treated in the same way. Within a week, I had undergone two surgeries—the first two surgeries of my life – one to do an extensive biopsy and the other to insert a port through which I would receive chemotherapy for the next six months. In August, I went under the knife again, this time for a bilateral mastectomy.

My medical team finished everything off with a few weeks of radiation. I am happy to say that after the surgery, I was declared cancer free. In just a few months after my active treatment ended, some of my strength started to return, and I was almost back to normal. In the last few years, I have had too many scans and tests and biopsies to count. I have experienced a couple of scares and flare-ups of my disease, but my medical team has been able to fight those back and keep active disease away from me.

Following my treatment, and even while I was in treatment, I became more active in advocacy groups and support organizations. I discovered the Inflammatory Breast Cancer Research Foundation and become active in their efforts to educate the world about this terrible form of cancer. I also became a volunteer in the Reach to Recovery Program of the American Cancer Society. Through this program, breast cancer survivors reach out to newly diagnosed patients to offer them support, an ear, and a path forward.

Five years ago, I started volunteering at my local breast center. Every week, I see literally hundreds of women sitting in the waiting room in little pink vests waiting for their mammograms. Each week, dozens of these women will be diagnosed with breast cancer. We need to work together to stop this nonsense.

Several years ago, I learned about the Department of Defense Breast Cancer Research Program and the role of the Consumer Reviewer. I jumped at the opportunity to use my academic abilities to read and think and write, combine those with my personal experiences with an awful disease and the side effects of treatment, and discover this tremendous way to really make a difference to the future of medical research. I was delighted when one of my staff partners at the American Cancer Society agreed to sponsor me as a Consumer Reviewer.

Recently, my wonderful oncologist recommended adding a brand new drug to the mix of things we are using to ward off any progression of my disease. In my research of this new drug, I discovered that it was just released to the market, having been pulled out of clinical trial early. I was thrilled to find out that some of the initial research on this drug had been supported under the Department of Defense Breast Cancer Research Program. What an amazing thing to know that I am helping advance research that could actually be helping me to stay alive. I now have even more reasons to be involved in this program.

My experiences have taught me some very important lessons.

First, life is too short. Simply that. Life is too short. It is important to do everything that you can in the time that you have.

Next, I have developed an astounding ability to say and do what needs to be said and done. I have always been pretty vocal. Now I realize how important that is and plan to speak up whenever necessary. I am no longer afraid to say anything. This has served me well in my role as a Consumer Reviewer. I am there to speak the words of the breast cancer patient and survivor in order to help improve treatment and reduce side effects, and some day stop this madness that is breast cancer.

Take care of yourself. I would encourage you to learn a little bit about Inflammatory Breast Cancer, for yourselves and women you know. The motto of the Inflammatory Breast Cancer Research Foundation is, “You don’t have to have a lump to have Breast Cancer”, and this is really true. The symptoms are entirely different. I encourage you to learn the symptoms.

Don’t learn things the hard way – the way I did. Continuing education is essential, but none of us need to know as much as I do about chemotherapy and surgical procedures and radiation treatments. Fortunately, within that education I have had over the last few years, I did learn the most important lesson— “life is short”— make sure you use it, every minute of it, wisely.

Ginny Mason: Lose a Breast and Loosen a Tongue

Ginny Mason

March 18, 1994…when I replay that day in my mind, it is in slow motion. It didn’t feel like it that day; it felt like a runaway snowball, out of control, barreling down a mountain. I hadn’t felt sick. My right breast had had some swelling, a lump, and “funky” skin, but I felt okay. However, the grave look on my surgeon’s face and the way he compassionately took my hand let me know it was serious.

What? Start chemotherapy today? You can’t be serious! That’s what they wanted me to do. How was I to call my husband and say, “Come get me; I’ve just had chemo and I can’t drive home?” I needed time to process this news, time to tell my family, time to pray. I returned to work and tried to keep my mind busy. It was a Friday. By late afternoon I got the courage to tell my boss that I would need Monday afternoon off to start chemotherapy. As I shared with him, he began to cry, and I realized immediately that part of this diagnosis entails taking care of those around us…helping them cope.

Over the weekend we called family and friends. We would need their help and support. I had my waist-length hair cut short and learned all I could about this deadly invader, inflammatory breast cancer. On Monday, when I returned to work, my colleagues were shocked to see my short hair. It was the perfect intro to tell them about my diagnosis. I wanted their help over the coming months, and they couldn’t help me if they didn’t know what was happening or what I needed.

I tolerated the chemo, surgery, radiation, and seemingly endless doctor appointments and tests without missing more than two weeks of work. It was therapeutic for me to continue working; it helped me cope and kept some normalcy to my life.

My husband was there for me every step of the way. What would I have done without him? In 1994, there wasn’t much to be found about IBC. The little bit I did find was not encouraging. My prognosis was not good. I reasoned that no one gets out of life alive anyway, so I would just have to change my expectations of living to “old age” and do a better job of living now.

A funny thing happened to me as a side effect of cancer treatment. When the surgeon removed my breast, he apparently loosened my tongue! I hadn’t learned in anatomy that they were connected! A change came over me. I began telling everyone about my cancer experience. People needed to know it could happen to THEM…that no one is immune to breast cancer. Since that time I have taken every opportunity to speak out, stressing that women need to take responsibility for their own health. I started a support group, made TV spots, did interviews, and tried to put a face to this breast cancer. There are all things I would not have done before IBC.

Following treatment, I decided to look to the future again. I had started my education in 1976 to become a Registered Nurse but was unable to complete the program. Later, I had become a Licensed Practical Nurse. But still I dreamed of being an R.N. So, in October 1996 (two years after my diagnosis), I completed an associate degree and became a Registered Nurse!! In 1998, since I was still alive and planned on staying that way, I entered school again … while working full time! Finally, August 1999, I walked across the stage and received my bachelor’s degree (BSN) in nursing!!

None of us knows how long we will live. Those of us who have faced this cancer have the advantage (Yes, I said advantage!) of being reminded of this fact daily. Hopefully I can continue to use this realization to make my life and the lives of those around me better than they would have otherwise been.

Wendy Oyler: My Experience With IBC

My Experience with Inflammatory Breast Cancer by Wendy Oyler

I was diagnosed with IBC at age 50 in 1998. I had been visiting a friend with many antiques, including old mirrors. I noticed I had a red circle area on my right breast I had not had before. It was hard to see since there were no mirrors in the house that were lower in height with a clear reflection.

I went home and upon arriving home found that my mother in the nursing home (she had a debilitating stroke) had some sort of flu. She was very sick and afraid so I stayed overnight with her a night or two. Then I came down with the flu so curled up on the couch to rest. I noticed my right breast was very itchy and had swollen to about 1 and ½ times its normal size.

I called my girlfriend who was an OR nurse (I am a nurse myself). She was working in the OR at Pennsylvania Hospital (a University of Pennsylvania affiliate). She called a surgeon friend and he told me to call him and I did. He suggested if I was upset he could meet me in an ER then (a Sunday) or come in Monday and he would see me at his office.

I went to see him the next day and he told me he was very sure I had inflammatory breast cancer but would need biopsy. The surgeon had 2 medical students come into the room to view my breast. He told them that they may never see it again in their future practices. He also felt a large lump in my right breast in a different area. He set up the biopsy right away. Side note: I had very lumpy breasts and no pain and several OB/Gyns had checked by breasts and said they were fine on previous exams.

I got the results of my biopsy on Valentine’s Day of 1998. I had a 2cm intraductal breast cancer with 25% of my breast involved. I also had inflammatory breast cancer and was labeled as a 3C for inflammatory breast cancer on diagnosis. My surgeon referred me to a medical oncologist right away. The medical oncologist examined me and I asked my husband and daughter (a family practice resident at that time) to listen carefully to what he had to say. I remembered very little of what he said.The chemotherapy would start that week. I started with 3 week cycles of CAF (Cytoxin, Adriamycin and 5FU). I had CT scans to check for any other cancer progression in my body, luckily there were none.

My brother or daughter brought me to my chemotherapy sessions. I had my chemotherapy infusions in his old office in a large row home across from the hospital. My infusion nurse was great and always found a vein. (This was before ports were coming into vogue).

I went for a second opinion also at Penn. They had just finished a study where they found Stem Cell Transplants were no better than the high dose chemo I was getting. I was afraid of stem cell transplants. Two of my church friends had them at Penn. I talked to my oncologist about my fear of them and he told me the high dose therapy I was having had much higher mortality than the stem cell treatment.

At that time a Penn oncologist had started a radical treatment for inflammatory breast cancer. Chemo first, then the mastectomy and then radiation. Before that change in treatment, 98-99 patients out of 100 died with the mastectomy first, and then the chemo. I don’t think other hospitals in Philadelphia, even a cancer center there, had accepted the Penn treatment rationale, but I had faith in Penn and my oncology team.

I opted for a modified radical mastectomy with sentinel node biopsy after the 6th chemo cycle, hoping it would give the medicine more time to work. My friend, who had referred me to my surgeon at Penn, was given my pathology reports to read to me after surgery. “No cancer was found in my breast.” I was surprised and so very happy. After my surgery, I had 3 more cycles of chemo. In December 1999 I started radiation therapy. I asked my surgeon if I could go to any local hospital for radiation therapy and he said no. He told me I either had to come to Penn or go to a radiation oncologist he knew, not just any radiation oncologist. I went for radiation at a closer medical center. It was much easier than chemo, but after chemo and having radiation, I was very tired.

I found the Inflammatory Breast Cancer site in 1999. I was on their email list and still remember many. Ginny Mason is one who was on it with me. I remember Laney from England, another woman who went to Rochester NY for a new treatment on brain mets. Although those two are no longer with us, I will never forget their energy and determination to fight on.

I went to work for a friend who was working for an Independent Review Organization to fill in for the holidays as a nurse case manager. We reviewed treatment that was denied by insurers, and found a peer physician to review the records and make a determination as to the treatment involved. The first time I had a case for inflammatory breast cancer. I started to shake, and almost cried. I prayed for that woman. That was 20 years ago. I am now 72 and work part time mostly recruiting physicians. I still have connections with many oncologists, heart transplantation surgeons and many others.

I have the joy of a wonderful husband and 50 years of marriage,a wonderful daughter, son in law, and two beautiful granddaughters. They all give me joy every day and have supported me in every way. Every day I give thanks that I am alive to be with them. I enjoying quilting which is good therapy for the mind. Quilts are a good gift for anyone who has been or is in treatment.I follow the Inflammatory Breast Cancer Research Foundation’s Facebook page. Every day is a gift. Live it to your fullest.

Cindy C: From Surprise Diagnosis to Birthday Celebration

Cindy C

To my IBC friends, I hope you get some inspiration from my story. My course was tolerable and uneventful, compared to some stories I have heard. I hope this sends women with new symptoms running to the doctor and demanding IBC screening, as it may greatly affect your outcome. And, I give a huge shout out to the courageous women who did not get prompt diagnosis and are fighting with us today and winning!

November 4, 2017 – I went with my husband and some old friends to an oyster roast. I had not done this in years and it was thoroughly enjoyable. I think I shucked and ate four dozen oysters! A few weeks later my life changed drastically, and I told those same friends, “How I wish I could say it was from the oysters!”

November 7, 2017 – I noticed a round cherry spot the size of a quarter inside my left breast. It felt like there was a small piece of wood in the lower quadrant near my nipple. How on earth did I wake up to such a thing? By the end of the day, my breast was enlarged, veiny, and my nipple slightly inverted.

November 9, 2017 – I saw my gynecologist, who sent me to radiology the next day. It was quite obvious after mammogram and ultrasound that the radiologist was concerned. A punch biopsy was scheduled for the following week with guided ultrasound. It was a horrible experience with doctors talking over me as if I wasn’t there, never telling me anything.

November 16, 2017 – My original diagnosis was Infiltrative Ductal Carcinoma, hormone positive, HER2neu negative. It seemed very doable. I requested a referral to a major medical center and had to be persistent, as it was the week before Thanksgiving.

November 22, 2017 – I saw a highly respected oncology surgeon who I will refer to as Dr. A. My mammogram from nine months ago showed nothing suspicious. My cherry spot was a lighter pink but it was still there. Dr. A wanted to biopsy that spot to rule out Inflammatory Breast Cancer. He told me that, although this is a “no lump required” breast cancer, a percentage of patients have a lump.

November 27, 2017 – The Monday after Thanksgiving, Dr. A called toward the end of the day “to go over my treatment.” The rest was a blur because I learned I had Inflammatory Breast Cancer. I still cannot look out my work window at sunset without remembering that phone call. However, he told me his office would take care of everything I needed to do to start treatment, and they did. He told me he had two other IBC patients who were doing great.

Note: I ran into my gynecologist a few weeks later and he told me in his entire 40+ year career, he had never seen a case of Inflammatory Breast Cancer.

November 29, 2017 – The oncology visit felt surreal to be sure. My excellent oncologist, who I refer to as Dr. B, explained what my treatment would include over the next ten years. She told me with confidence that her patients did great on chemo. I walked out feeling more hopeful. I was fortunate within a short amount of time to meet some 10 – 17-year IBC survivors who made that hope seem even more real.

December 14, 2017 – Chemo started one month after diagnosis. Dr. B. was mostly right, that it was not as bad as I expected, but there were moments. Gastric pain, diarrhea, constipation, thrush, malaise, ridges in fingernails, shortness of breath. Have you ever had someone pray for your constipation to end? Well, I have. After my fourth chemo, Dr. A did a vascular ultrasound of my breast and axilla. The tumor was gone and nothing showed up in lymph nodes! I had two more rounds of chemo. I felt strongly about bilateral mastectomy due to my history of fibrocystic disease and many repeat mammograms.

May 11, 2018 – The mastectomy was not a bad experience. The pathology report came back a few days later, which revealed 5mm metastasis to one lymph node. The tumor was completely resolved. There was extensive involvement to the dermal lymphatics covering 11mm. Pathology reports scare me, but I finally accepted I had to trust my physicians’ interpretations and not get too caught up in pathology talk.

June 26, 2018 – I found radiation to be intimidating with all those pictures, holding my breath, and the staff calling out numbers to each other. My treatment included bolus for 15 sessions and booster at the end. They told me to relax, that they had to match the radiation within a hair of the mold that was provided for me. They became my friends, even gave me a cake on my birthday!

From the day I found that cherry spot, I am reaching three years cancer-free. I will probably never go to the Varnam Oyster Roast near Holden Beach, NC, again, but I encourage others to. Life is beautiful in many ways. I have more to tell but will stop for now.

Krysti and the Gamma Knife

What is Gamma Knife?
The National Cancer Institute defines Gamma Knife therapy as “a treatment using gamma rays, a type of high-energy radiation that can be tightly focused on small tumors or other lesions in the head or neck, so very little normal tissue receives radiation.”

Krysti commented: “I wish I had a photo of the machine itself, darn it! But a one or two time zap where you are in the machine for less than a half hour, and all you do is smell something like burnt crayons is amazing. Zapping the tumor DNA and killing it from the inside out is amazing too. Surprisingly, this is one of the easier things I’ve been through even though the photos, and the idea of screws in your skull, probably doesn’t sound so easy!”

First Step. After signing consent forms – awaiting Gamma to start – get this tumor gone!

Krysti and the Halo. The first thing the doc does is inject your head/scalp with lidocaine to numb it. It pinches a bit, but this about the most I felt. Then they screw in the halo frame with 4 screws – two in the front on your forehead and two in the back (no shaving of hair even). The frame feels heavy. You are then taken to MRI with the frame on to get exact tumor photos for precision stereotactic placement of the beam. Next it’s a “hurry up and wait” as the doctor and the computer are creating a treatment plan.

Krysti and the Space Helmet. The clear helmet gives you a space explorer look! It attaches to the frame and you wear it into the machine where the huge heavy beam directors (probably not the correct verbiage) are placed over it. As I mentioned, you smell something like burnt crayons while in the machine. My location (at IU Simon) let me bring my own CD to listen to while in the Gamma Knife machine.

Krysti Immediately Post Treatment. After Gamma they unscrew the frame from your head. There was just a bit of blood, but some pressure from the doc and nurse stopped that. I had to wear the gauze for a few hours and had band-aids on my forehead. I couldn’t wash my hair for a couple days, and healed in about a week or ten days.

Krysti Post Treatment. I felt good enough both times to meet a bunch of the family at a Mexican restaurant and have a beer. Although the gauze looks intimidating, I felt fine!

Editor’s note: this is our favorite photo! It shows Krysti talking on her cell phone while waiting for treatment. Can you see that smile behind the halo?

January 2019 Update
Krysti was diagnosed in March 2005 with stage 4 bilateral Inflammatory Breast Cancer and lived more than 10 years, thanks in part to her participation in multiple clinical trials. Nicknamed “Dr. K,” she was dedicated to research and helping many others diagnosed with breast cancer. Krysti passed away in July 2015. She is greatly missed for her wonderful smile and sense of humor. [Krysti’s Gamma Knife treatment was administered at the Indiana University Melvin and Bren Simon Cancer Center.]

Brenda Denzler: My IBC Diagnosis and Treatment Journey

Follow Brenda Denzler from her pre-IBC diagnosis in 2009 through chemotherapy, surgery, radiation and post-treatment in 2011. Here is her journey in her own words. Be sure to read her January 2019 update at the very end.

One day before my birthday in 2009, I asked a friend about my oddly red breast. The redness had persisted for two weeks and, in fact, it had gotten a bit worse during that time. She told me it sounded like inflammatory breast cancer and that I needed to get to the doctor on Monday. Ten days later, everything in my world came crashing down around me when I was definitively diagnosed with IBC.

I wanted to document this experience, so I took photos and I began a blog. Both were a way to keep people informed about what was going on, but, more importantly, they were a way for me to process everything that was happening to me. I’m pleased that now my pictures might help others who are going through, or about to go through, an encounter with IBC. The treatments are hard. The experience can be brutal. But it is doable. Here is how I did it, in pictures.

Pre-treatment. This is what my breast looked like before I began chemo, the first arm of the three-pronged treatment protocol for IBC. The symptoms that were obvious to me were the redness and the fact that my nipple was inverting. The doctors who examined me, however, also identified peau d’orange skin, a thickening of my skin in the area of the inflammation, a bit of swelling in that breast, a lump on my chest wall, and enlarged axillary (armpit) lymph nodes. Subsequent imaging identified five suspicious nodes.


Midway through chemotherapy. My doctors were very pleased at how the cancer responded to the chemo. This is what my breast looked like when I was about halfway through it. To me, it looked a little less red and a little less swollen, but other than that, I couldn’t tell a lot of difference. They were happy though. I think they could detect changes in the other features of the disease that were not readily apparent to me. (They never imaged me again, until I requested/demanded it at the end of chemo. Their assessments of how I was responding were based solely on their clinical examination of me.)


Mastectomy Day. This picture was taken about two months after the last one. It was the morning that I went in to have this breast surgically removed. As you can see, the breast looks flatter and less swollen. Perhaps a bit less red, though, once again, I wasn’t sure that I saw that much difference. My doctors were pleased with how I had responded to the chemo and insisted I was ready to go to surgery after my body had had a few weeks to recover from the last infusion. I, however, insisted on having a post-chemo ultrasound to verify in a more objective manner that the tumor on my chest wall and the axillary nodes had, in fact, shrunk and that I was ready to go to surgery. (They had, and I was.)


Post surgery. This photo was taken sometime during my second-week post-surgery. I can tell because I only have one drain in, but when I came out of surgery, I had two drains. By this point in time, the one in the front had been taken out. If you look carefully between my arm and my trunk, you’ll see a thick, light-colored “string” dangling against the dark background. That’s the second drainage tube. Some women have trouble looking at their surgical scar. I didn’t. I needed to see it when the nurse first changed the dressings and stripped and emptied the drains. It was, after all, my new body. And I needed not to be squeamish about the drains coming out of it, because somebody was going to have to tend to them, and that somebody had to be me. It all really wasn’t that bad. The pain wasn’t bad. I didn’t experience a huge sense of loss in losing my breast. Or did I? What I did notice in the weeks after my surgery was all the young hotties on TV, parading around in their low-cut tops and evening gowns. And I thought, “Will you be next? You seem so unaware of it all, so unaware of what you have and how quickly you could lose it.”


Marked for radiation therapy. Radiation came for me almost 8 weeks after my surgery, due to a scheduling snafu with my radiation oncologist. By that time I was pretty well healed up. I had three “ports” angles at which they shoot the rays into you. One went from the back and around the side. The other was the famous “hockey stick” area more toward the center of my chest, in the heart of where the breast had been. And the last was the area above my clavicle to try to hit the lymph nodes up there that had not been taken in surgery. (All three levels of my axillary nodes were removed.) The ink they use to mark the port fields does rub off quickly, and they often had to re-draw the lines on me. You’re best advised to buy some cheap T-shirts to wear under your clothing while you’re in rads. Psychologically, rads was the hardest for me. They line you up on the table, scurry out of the room, close a big, heavy door, and then zap you. All my life I’ve tried to avoid radiation exposure and now this! It was hard to feel good about it. I made a short CD to listen to while I had my treatments. It contained toe-tapping, sing-along songs about burning (“Burn, Baby, Burn,” “Ring of Fire,” “We Didn’t Start the Fire,” etc.) and, in honor of the daily repetition involved in radiation therapy, the Captain and Tennille’s “Do That To Me One More Time (Once Is Never Enough)”! But still, there were days when tears slid down my cheeks and into my ears as laid there and let them do to me what needed to be done.


Immediately after last radiation treatment. My skin stood up well to the treatments. You can see where the fields were, and where they ended. It’s like having a really bad sunburn where you didn’t have a shirt covering your skin. I was tender, but it was all bearable. And I was so thankful to be done with it.


16 days after last radiation treatment. Radiation, they say, is the gift that keeps on giving. After your treatments end, you continue to “cook” for a week or two, and your skin gets more and more unhappy. This is my skin at its unhappiest. Not pleasant, but it was doable. Actually it was about this time that I had to appear before a grievance panel at work to make my case for why the people who had taken over my department should not have laid me off in the middle of my chemotherapy (which is what had happened). Despite the nasty skin and how tender it was, I was able to dress in appropriately concealing ways and make my case. (I also won, by the way!)


This is what my mastectomy scar looked like almost two and a half years since I was diagnosed. All healed up and doing nicely. I think that, as mastectomy scars go, I have a very nice one. It’s not something I’m pleased to have. But it is what it is. It reminds me that I have faced something that was almost unimaginable, before it happened to me. It signifies that despite my overwhelming terror not just about the cancer but about the cancer treatments, I got my courage together and did what I had to do to try to save my life. It was a really bad time in my life. But I made it through. It was doable.


Foob into mastectomy bra. My foob (fake boob) being put into my mastectomy bra pocket. I must have had a really good fitter, because I have had no real problems with the weight of the foob or the bra riding up on me. It’s all worked well. I wear the foob when I’m out in public, but not at home, where I go braless. However, in the winter, when I wear lots of layers of clothes, on the weekends I won’t even bother with a foob in public. I just go out and run errands braless, with one flopping boob bouncing around in there! In the summers I wear tanks and T-shirts around my 4.5 acres. I’m braless then, too. If a neighbor comes by, they just have to live with the sight of me a little lop-sided on top. It’s my new body. Deal with it. It’s what I look like, now. It’s the price I have paid to live.


This is my mastectomy scar line at 9.5 years out. I received a boost of radiation to the scar line, and have developed telangiectasias there due to the radiation. These red dots are not raised. They don’t itch. They don’t bother me in the least. They are a bit unsightly, but that isn’t an issue for me. (My scar line does itch mildly, from time to time, but there is never a raised “rash” there and we have never found suspicious evidence of the return of cancer there — so I think it’s just some nerve damage that acts up from time to time.) Not everyone develops telangiectasias, but many of us do, so I thought a picture might be useful here.


Last picture. My older son is into heavy metal music. He went to a show and came back with this T-shirt for me. On the back it says, “Who are you?” I am a cancer fighter. And so will you be, dear viewer. It’s not fun. It’s not what we would choose. But, having had it happen to us, we deal with it. It is doable. It sucks. But it’s doable. You will find a way through this.


As of early 2019, I am 9.5 years out from my diagnosis. As far as we know, I remain NED (No Evidence of Disease). There are some subtle indications that the cancer may be returning…but if it is, we can’t find where it is, yet. So we wait and watch. After all, those subtle indications truly may be nothing at all. Note: The waiting and uncertainty are not as hard now as they were years ago, right after my treatments had ended. But it’s not nothing, either. I think with time those of us who are fortunate enough to become NED learn to cope with the uncertainty, which probably never goes totally away.

My general health has been a problem since my treatment. I didn’t recover like I expected to — and was expected to! Long story short, we finally discovered that I have an autoimmune condition that has been killing off my thyroid gland. Now that we’re dealing with that, I’m feeling noticeably better. I understand that thyroid problems in the wake of breast cancer treatment is not uncommon. In my case, I suspect it was an inherited proclivity for it plus the cancer treatment that sent me over the edge.

In these survivorship years, I’ve retired, become a grandma three times, become a published writer with a monthly column in a local newspaper, grown my freelance editing business, and nearly completed a book manuscript. I volunteer with my local hospice, and I often eat out with old and new friends. I’ve lost friends to this blasted cancer, and lost beloved pets to cancer and (would you believe it) to bunnies. Death is hard to accept, but if you make friends as part of an IBC community you are bound to lose some of them at times. It humbles me, that I continue to live, and makes me determined to enjoy as much of my life as I can — life that those I have cared about have been denied.

My oldest grandson (age 7.5 years) asked me this weekend to try to stay alive long enough so that he can get old enough to move out of his parents’ houses and live with me! He doesn’t know a lot about the cancer, I think, but he sees me as “old” (I’m 65). I smiled and told him that by that time, I didn’t think he’d really want to be living with his grandma…but I sure planned to be around then.

Meg Senuta: Surviving IBC Through Community – And Stories

Meg Senuta

In March of 2011 I was diagnosed with Stage III (c) HER2-positive/HR-negative Inflammatory Breast Cancer (IBC). Like most people, I had never heard of IBC, let alone met anyone who had it.

The truth is, for a couple of months I had noticed that my right breast looked a little larger than the left. I thought it was hormones, weight gain, something benign that would resolve by itself. Nothing to worry about. I was fifty- seven then. Not young, but not old, either. When my breast turned a light pink, I called my primary care doctor to describe my symptoms. “When can you come in?” she asked me. I was finishing up a busy college admissions season at work so for the first time in months I had some flexibility in my schedule. “How about next week?” I asked her. “Next Tuesday?” “No,” she said. “I mean what time today.”

I was lucky. Not lucky to have IBC, obviously. But lucky to have Dr. Chang, who knew its symptoms. Who examined me immediately and set up scans and tests and biopsies over the course of the next couple of days.

I was shocked to learn about this subtype of breast cancer that appears without a lump. That is always at least Stage III when it’s diagnosed. I was not just shocked, I was indignant. What about the whole early detection campaign in the media? The whole “check for a lump” campaign? Now I know: Any change in your breast means you should get checked out.

I was also lucky that a treatment protocol exists for HER2-positive IBC. Not long before I was diagnosed, there was not a great treatment. Survival stats weren’t promising, to say the least. I’m lucky my IBC came after the advent of Herceptin. I’m also fortunate to live near Dana Farber in Boston, where I was treated by Dr. Beth Overmoyer, who acted as my IBC warrior when I didn’t have the confidence or strength. (I know, I’m not a fan of the “warrior” and “battle” metaphor for cancer, but sometimes, honestly, how else can you describe the campaign you have to mount to get through IBC treatment, let alone the disease itself?)

I’m surprised to be telling this story as what sounds like a series of lucky events. It’s not the way it felt in real time, but it’s the way it looks in hindsight.

More luck: I was not alone. I had a wretched time with chemotherapy. I was hospitalized with infections, with C.Diff. I needed blood transfusions, I was neutropenic, etc. But I had a caring husband, two wonderful kids, friends and family, my church, and my writing group for support and all kinds of help, from meals to rides to visits to gifts. I am not particularly deserving of all the love and support I received, but there it was, nevertheless.

What I did not have was people like me. People with IBC. I searched and discovered the online IBC Research support group community where I could get reliable information and connection. I discovered Anya Silver’s poetry, which has come to mean so much to me and I keep close at hand. I joined a local IBC support group and met other recently diagnosed women and even more importantly, met women who had been living with and after IBC for ten years. Ten years!

When my treatment ended after sixteen months, I was surprised to find that while treatment was over, cancer didn’t feel over. The check ups every three months, my low blood counts, and my own uni-breasted irradiated body reminded me of what I had just been through, and how it might return. Though my pathology report after surgery showed No Evidence of Disease, the reality is that there is no cure, no cancer-free. In fact, very recently I had a biopsy for possible skin metastasis. Fortunately, the biopsy showed no cancer.

When I go to an IBC support group meeting now, I am one of the old-timers. I hope that just by my presence I can steady the fears of someone newly diagnosed. I attend IBC conferences and meetings when they’re in Boston. It’s at one of these that I met Ginny Mason of the Inflammatory Breast Cancer Research Foundation. Though I’m not a trained advocate, I served as a patient advocate on a research grant by a major medical school. I’ve acted as patient/participant in a collaboration among a medical school, teaching hospital, and cancer support non-profit to do empathy training with first-year medical students. I make sure these students know about IBC and its symptoms.

I’ve come to think there are two kinds of people: those who put an experience like IBC in the rear view mirror and resume their lives, and those who ask themselves, What the heck just happened? I’m definitely in the latter camp. How do I live in this new place, this place of uncertainty? I feel an urgency to figure it out, and to write about it. I feel an urgency to read what other people have to say about their experiences. Science and medicine helped me survive IBC, but it’s stories, yours and mine, that help me live.

Kathy Milburn-Williams: Overcoming the Prognosis for Triple Negative IBC

Kathy and her daughter

Kathy Milburn-Williams’ Triple Negative IBC Story [Interview with Kathy Milburn-Williams by Phyllis Johnson]

“Don’t worry about it. It will probably be okay,” Kathy Milburn-Williams’ doctor told her when Kathy showed her a lump in late November 2007. After all, Kathy’s recent mammogram had been fine. Kathy remembers that day very well because she had a sense that she did need to worry, or at least take action.

So she made her own appointment to see an oncologist at CBCC (Comprehensive Blood and Cancer Centers) in Bakersfield, California. Because of delays around the Christmas holiday, her lump had grown to eight centimeters by the time the biopsy showed that she had triple negative inflammatory breast cancer. Her doctors immediately started her on chemotherapy as part of a clinical trial. She received the typical Adriamycin, Cytoxan, and Taxotere, but in a combined experimental dosage.

Her doctors gave her an 18-month life expectancy, but Kathy thought it was important to be optimistic for her two daughters. “I didn’t want to get emotional in front of my kids. One daughter wanted to come home from college to take care of me, but I told her that there was no point in her coming home to watch me sleep.”

“My husband shaved my head, and my daughter said later, his hands were shaking so bad. I’m glad I couldn’t see that!” Kathy also found out a Milburn family joke was literally true. “My dad always said we had a large Milburn head, and when I went to buy a wig, none would fit me. I had to special order one.” In hot California, however, she ended up mainly wearing scarves and hats.

Kathy was a pediatric nurse at the time and found immense support from her nurse friends. When she went back to work, she transferred to the neonatal intensive care unit where there would be less chance of getting an infection. Gentle teasing from the other nurses convinced her that she didn’t need a hat to take care of babies.

“I kept a diary, so I knew I would be okay for about five days after a treatment to go to work, and then nausea would keep me home for a few days until I started feeling good for about a week before starting the cycle again.”

Following four chemotherapy treatments, she had surgery, then four more chemotherapy treatments, and finally radiation. “Other people said their hair came back thicker and wavy, but mine came back all colors in a thin patchwork like a calico cat. So I dyed it,” she said laughing.

Kathy’s response to treatment was so good that her doctors revised her life expectancy to at least five years. Her doctors presented the results of the clinical trial at an oncology conference in Boston. This is where her doctors got excited about the new treatment, the combination treatment instead of the individual treatment.

“I get checked out every four months. I do still have some chemobrain that can make it hard for me to find the right word. But I don’t have any major side effects from treatment. When that first five years passed, they gave me five more years. I’ve learned to adjust every five years. I tend to be a procrastinator, but this keeps me focused on doing things now,” she said.

“Cancer makes you really pay attention to your body. We had no prior history of breast cancer in our family although my mother had a lot of cysts. My father had prostate cancer, which I’ve learned can be connected to breast cancer in a family. After my sister died, we learned that she had undiagnosed triple negative lobular breast cancer too.”

Kathy used a sense of humor and positive attitude to get her through the difficult times. “Cancer can be exasperating at times, but you just need to get through it. I didn’t want to go down deep. I need to be positive. As a nurse, I saw that people with negative attitudes had a harder time.”

Kathy’s late father had a hard time watching his daughter deal with cancer and started the Milburn Foundation in 2007 to fund research into inflammatory and triple negative breast cancer. Today, Kathy is on the board of the foundation, which works closely with the Inflammatory Breast Cancer Research Foundation and Susan G. Komen. She used her training as a nurse and her instinct to get a quick diagnosis, and despite a scary prognosis is thriving today.

Lee Smith: Fighting to Bring a New Standard of Care to Canada

Part 1 of Lee Smith’s story about her struggle for the approval of Herceptin in Canada.

In March of 1999, I could see a pink area of skin just below my mastectomy scar and my ribs felt like the invisible man had punched me.

The skin just felt weird and sometimes there were stinging sensations but no itching. Scans and tests were done and all came back clear. The end of April little white nodules the size of the letter “o” began to appear above and below my scar line. This was confirmed as skin metastasis. Immediately, chemotherapy using Taxotere was begun.

It had been ascertained previously that I was an overexpressor of the Her2/Neu oncogene so my oncologist applied through a compassionate use program to obtain Herceptin to add to my treatment. Herceptin was in use in the United States but had not been approved yet for use in Canada. I was assured that I was a good candidate and fit all of the criteria for access to the drug.

Early June brought the news that the drug company had closed its compassionate use program on May 31, 1999. The consensus of opinion was that they had done this to force desperate patients, their doctors and caregivers to put political pressure on Health Canada to speed up the approval process. Health Canada had this drug on what they call “fast track” for approval and were over their projected date for completion. My oncologist began to try to find a way to obtain Provincial funding to send me to the USA for treatment.

I called Health Canada and was put through to the Drug Directorate where I left a message on their voicemail. Three hours later the doctor who was in charge of the approval process for Herceptin called me and spoke to me for nearly an hour. In a caring and compassionate way he explained the problems with staffing and priorities of approvals which had begun prior to Herceptin coming in for review. “Soon” was the answer as to when the drug would be OK’d. I explained that “soon” was not an option for me.

Devastated, and envisioning the cancer cells sending out for travel brochures to figure out how to get to the Riviera on my liver, I searched the internet for the drug company Hoffman La Roche Canada and sent them the following e-mail:

June 15th, 1999 Herceptin:
I understand the compassionate use program was ended by your company. I have contacted Health Canada. They say approval soon. Soon is not an option for me. Can your company help me? This is my life. I have a recurrence of Inflammatory Breast Cancer (rare and aggressive). Strong overproducer of HER2/neu onco gene.. I have also contacted my Member of Parliament and the Federal Health Minister. My type of cancer moves QUICKLY. Pretend I’m your mom or wife or sister. Please, someone help me. Lee Humble…

That same day I e-mailed the Federal Minister of Health, called my Member of Parliament and posted my despair to the IBC Research Foundation of which I had been a member since early June. Immediately hope reared its head as Owen Johnson and a group of twenty or so members launched themselves into battle mode for me. I was a cyber stranger but we were all struggling in a common cause.

June 16th Owen Johnson wrote to the National Breast Cancer Coalition in Washington D.C. asking for help. I had been unsuccessful in locating a similar organization in Canada.

June 17th there began a steady flow of offers of help and encouragement from members of the IBC online support list.

June 18th I received the following from the drug company:

This is in response to your e-mail letter of June 15th concerning the availability of ‘Herceptin’ in Canada and the current status of our Special Access Program.

The drug trastuzumab, known under the tradesman Herceptin, is not yet commercially available in Canada. A New Drug Submission has been submitted to Health Canada to obtain approval to market this drug in Canada. Health Canada has granted priority review for this medication, and regulatory approval is pending.

Compassionate programs or special access programs fall under a special regulation from Health Canada and provide a means of access to medications not yet approved for use.

The choice to release product through a special access program rests entirely with the manufacturer of licensee of that drug. Not all drugs are released through special access programs prior to their approval. Products can be made available to patients provided that adequate supply is available and that Health Canada has approved the release. Access to products prior to their approval is always determined on a patient by patient basis. All special access programs have strict eligibility criteria to ensure that the right patients receive the medication. Usually, this includes the stipulation that the patient must have failed all other current therapies.

‘Roche’ Canada was provided with a limited supply of clinical trial stock from Genentech (the manufacturers of Herceptin) in late December 1998. With this limited supply of clinical trial stock, ‘Roche’ Canada chose to implement a Special Access Program for Herceptin in January 1999. This program was initiated to provide a necessary drug treatment to metastatic
breast cancer patients who met> the eligibility criteria and were without options. The Special Access Program was implemented with the strong belief that our limited supply of stock would be sufficient to last through the review process until the time of approval. Unfortunately, Health Canada has missed its priority review target, and it appears that approval will be delayed. Due to this delay by Health Canada, and the fact that demand for the SAP has been high, our limited supply of clinical trial stock is depleting. To ensure that there is sufficient supply to treat those patients currently enrolled in the program, the Special Access Program will be closed to all new applicants effective May 31, 1999. This measure has been taken to ensure that treatment for those patients currently enrolled is not compromised prior to receiving approval.

We cannot make any recommendations regarding your treatment or make suggestions that would influence your health care. Only your physician should do so because he/she was involved in your diagnosis and decisions on your treatment course. Because of the relationship between physician and patient, which we respect, it is our policy to recommend you direct your questions to your physician or perhaps your pharmacist who is aware of your medication history.

Thank you for your interest in this product.

Yours very truly,


By the end of the day, there were over 30 emails to my inbox giving hard-hitting advice as to what my next steps should be. Owen Johnson and the research group had located an email address for Genentech in San Francisco. They had also ascertained that both Genentech and Roche Canada were controlled by Roche Switzerland. The hunt was on to locate activists who had waged the fight to get the FDA to approve Herceptin in the USA a year or so before. Through “computerland” I met Barb, Blaze and Anne who advised and encouraged me to an unbelievable degree. In a fit of anger, I send off the following email to the drug company on June 21, 1999:

Dear Sirs,

Thank you for your response of June 18.

(A) I understand that in December 1998 Health Canada put the approval of Herceptin on “fast track” to target approval by May 1999.

(B) I understand that Genentech in the USA manufactures and supplies the drug to you for Canada.

(C) I understand that the choice to release the drug under the compassionate programs “rests entirely with the manufacturer of licensee”.

What I do not understand is the following and I request your response as soon as possible.

(A) Since your company knew that Health Canada was trying to approve by May 1999, was there not a process in place to have an adequate supply of Herceptin ready for this promised release date? If not, why not? Bad planning on the part of marketing department? If a supply was pending for the proposed release date, why can not this supply be used temporarily to extend the compassionate use program?

(B) Roche Switzerland appearing to be the controlling parent, is not Genentech your sister company? Your letter to me seemed to hint strongly that the manufacturer was a completely different entity. It appears that they are churning out Herceptin just fine at their US plant and I see no reason for “limited supply” especially if under good business practice your company had foreseen to order supplies for the assumed release date.

(C) Health Canada assures me that the approval will be “soon”. Your letter to me shows that your company does understand that demand is high for Herceptin and that the people needing it are those for whom all other options have failed. The 30% of breast cancer patients who can benefit from Herceptin being those who are overexpressors of the Her2/neu oncogene are those who have very aggressive fast moving cancer. This leads me to assume that your company or your parent company made the decision to cancel the compassionate use program as a tactic to get the patient and their caregivers to pressure the Canadian Government about the approval process because people like me have such fast growing cancer that we can not wait another month or two. What, if any, plan does your company have in place to be in a position to provide the drug in a timely fashion if, say, approval happens in the next weeks or month? I dislike the idea that I and others with their lives at stake
are perhaps being used as pawns in a game or being held hostage in a bid to pressure government.

(D) All the above provided true, it remains that your company is to be commended for ensuring that those currently in the programme are adequately provided for. This shows compassion. What still bothers me however is that your company chose to be compassionate when you thought the 180 day fast track approval would go through from Health Canada but abruptly lost compassion for metastatic breast cancer patients such as myself on May 31 1999 when the target approval date was not met.

I need this drug. I do not have time to play games. I want to live to see my new grandchild at least to kindergarten age. I am prepared to be reasonable or unreasonable about my quest for life.

Please respond ASAP. Inflammatory Breast Cancer waits for no one. If I have to travel to the USA and incur great financial burden to get this drug I will do so but the world will know about it. If I die before I can obtain this drug the world will know about it. So will your god.

Yours sincerely,
Lee Humble

This same day I called the local TV affiliate of the Canadian Broadcasting Corporation (CBC) and left a message for the Health Beat Reporter telling her that I wanted to talk about a new angle on a story she had done about a young woman who was selected in the Herceptin lottery held in the USA the year before. The following morning a TV crew was at my home! The story was aired June 24th on the local 6 o’clock news. I believe this all came about due to the media tips compiled and sent to me by Barb B. of the ibc Research Foundation who is a broadcast columnist in her “other life”. Barb had also contacted 36 major radio and TV stations across Canada to alert them of the Herceptin story.

Part 2 of Lee Smith’s story about her struggle for the approval of Herceptin in Canada.

What follows are some of the e-mail messages sent over the next few days.

June 18th Owen sent the following e-mail to the research group:

How many of you have read Robert Bazell’s book, “Her 2, The Making of Herceptin, an evolutionary Treatment for Breast Cancer”? Robert Bazell is the chief science correspondent for NBC news. He lives in New York (city? I don’t know if that means the City, that’s just what the back flyleaf says).

page 54: “Soon after that, Genentech lost its innocence. On February 2, 1990, Roche Holding, Ltd., a Swiss company that owns Hoffmann-La Roche, agreed to pay $2.1 billion for 60 percent of Genentech’s stock and picked up an option to buy the remainder over several years. Economic necessity had forced the move. Like other biotechnology companies, Genentech was constantly starved for cash.

So the plot thickens: Roche CONTROLS Genentech. It won’t do any good to write to Genentech and copy Roche!!

There are some activist names in the book who arranged fax and phone zaps to Genentech and Roche, and at one time, led a funeral procession to and past Genentech to embarrass them.

Here are two names we have to locate. B– E—-, Chapter 8 of the book. He started a company in San Francisco called ******************; I don’t know if it is still there, but let’s locate —–. His wife died of breast cancer.

The second name is E—— P—, founder of San Francisco’s Breast Cancer Action in 1990
Finally, let’s get a phone number and e-mail and fax for Robert Bazell.

Would someone take on this effort to locate these three people? The first one to respond wins a gold star.


Barbara, media person in WI, would you tell us how to get an investigative news reporter (paper and/or TV) involved in this Herceptin mess in Canada. Simply, here is the story as I see it now.

1. Roche-Switzerland controls Genentech
2. Roche-Canada had Herceptin supply and allowed compassionate use until May 31st
3. Roche-Canada said “we’ve run our of supply” so no more compassionate use

Since Roche-Switzerland owns Genentech, and Roche-Switzerland owns Hoffman-La Roche Ltd (what I’ve called Roche-Canada), then for Roche-Canada to point the finger at Genetech is like pointing their index finger at their sibling (Genentech) and their middle finger at the people of Canada who need Herceptin.

Barbara, can you help us get some media attention?


June 19th 1999
Let’s get active!! Can this small group of about 20 people make a difference? We wanted to do something, so let’s “do it”.

Well, Owen certainly did something! He wrote the following also on June 19th.

Dear Mr. Bazell,


I represent a group of inflammatory breast cancer patients and their caregivers, several of whom are in Canada. Inflammatory breast cancer is a very aggressive, rare (1-4% of breast cancers) breast cancer.

Having read your book, we are aware of your knowledge and network of contacts in Genentech, Roche, and others involved in Herceptin development and marketing.

Based on that involvement you are certainly aware that Roche-Switzerland owns a controlling interest in Genentech. And Hoffmann-La Roche Limited (Canada) is a wholly-owned subsidiary of Roche-Switzerland.

Are you aware of what has happened in Canada? Here is a copy of an e-mail written today, June 18th, by Lee Humble in Ottawa, Ontario, Canada to a member of her government.

The Honourable Mr. Allan Rock (written June 18th 1999)

I have a very rare form of cancer called Inflammatory Breast Cancer which occurs in only in 1% to 4% of breast cancer patients. Presently I am coping with a recurrence to the chest wall. There is a drug called Herceptin which is not yet approved for use by Health Canada but was available through a compassionate program offered by Hoffman La Roche Canada. Health Canada was to have approved this drug by May 1999. They have not done so yet. Roche Canada has discontinued the compassionate use program (in my opinion) to use the patient as a pawn in it’s bid to get the gov’t under pressure to speed up the release. I believe that Roche Canada is playing with the lives of the 30% of breast cancer patients who are over expressors of the Her2/neu oncogene for which this Herceptin drug has been shown to increase the efficacy of standard chemotherapy by up to 65%. My type of cancer is very aggressive and fast moving. I have had every treatment possible since Jan 1998. All have failed me so far. The knowledge that this drug exists and is available in the USA, most of Europe and even some third world countries but not
in Canada is distressing to me. Health Canada assures me that the drug will approved soon. I spoke to Dr. Anthony Ridgeway of the Bio Theraputic’s division of Health Canada. I do not have the option for “soon”. Even after approval I am concerned that OHIP will not have this drug on it’s books for coverage for another period of time. Neither will my private health plan. What about initial supply problems via the drug
company? All this will mean more delay for me. I state again, I and others do not have time on our sides. Normal types of breast cancer move much more slowly than IBC (inflammatory Breast Cancer) but still these patients are deserving of access to the medication they need to live a bit longer.

Please help me. If your government can do anything, however small, please take action ASAP.

I request a reply.

Thank you for your speedy response.
Lee (Lillian) Humble

Owen also included a copy of the drug company response written on June 18th. Refer to that letter in the part of the story you have already read.

For Hoffmann-La Roche Limited (Roche-Canada) to blame Genentech for the lack of supply of Herceptin smacks of a con job, and “how dumb do they think we are?”. The only conclusion we can draw is that Roche-Switzerland wants to put the pressure on Health Canada to approve Herceptin, and has decided to halt the compassionate use program that was available until May 31st through Roche-Canada. Roche-Switzerland could just as easily have directed Genentech to send additional supply to Roche-Canada (if we believe that Roche-Canada was short of supply of Herceptin, which we don’t).

I am writing this message to you from Anchorage, Alaska. Our Canadian friends need our help.


PLEASE present a story on this on TV in the US and we hope it will play in Canada. We can put you in telephone contact with Lee Humble in Ottawa if you wish.

So Who’s in Control? Certainly not Genentech. Certainly not Roche-Canada. Is Roche-Switzerland? WE have to exert a voice and make it happen such that our friends in Canada are not pawns in this new “game”.

Please call me ASAP and I will get the message to our group. Call or e-mail anytime, but please make it SOON.

Owen Johnson

After seeing all this activity I was prompted to write the following to the Research Group:

I’m still new at this cancer stuff but am sure learning rapidly! Thank you all for caring. I hope this isn’t taking time and energy away from other pursuits. I didn’t join this group to become a focus of any kind … only to help out and I sort of feel bad to be the cause of such hard work. However, I feel good that maybe we can expose unfair practices and raise awareness of IBC in the process.

June 21st 1999

Dear Blaze and Owen

I really don’t mind being the centre of a cause if you want me to. Hell, I’ve always loved being the centre of attention ever since I figured out how to talk and say “Look Mommy! Look at me!”. I’m more than willing to shed a tear or two and be interviewed etc. I just want to be sure not to overstate the facts as they apply to me and I’m not on the verge of death like some are. I do have a contact in British Columbia who tried to get Herceptin for his wife (IBC patient) before the compassionate use programme even started … he was told by Health Canada about the special access program for drugs and the herceptin compassionate use thing in Dec 98 when it started up… by that time it was too late. She died Jan 99. Remember that all this time it was available next door in USA. There are two Canadian IBC list members presently on Herceptin that I know about and Joan in Alberta who’s onc says she’s a candidate at some future point. I’m sure we could scare up a really big list of people who need this drug ( maybe by asking the Cdn Oncology Assn .. if there is one … or asking Health Canada how many have been turned away). Sorry I’m saying too much again. I feel deep inside that my situation IS desperate but I am not yet out of options and am not at death’s door. I’m living a reasonably normal life. I intend to live to see my new grandchild at least get to kindergarten!

June 22nd
By this time many friends and supporters across Canada had taken the ball and begun to send letters to politicians. An example follows of a letter written by a friend (who is a well known figure in the business community) to the Federal Minister of Trade and Commerce.


Nice to see you briefly at the picnic yesterday. I’m not sure I mentioned what a fine job I think you are doing. Keep up the good work.

This message concerns an urgent threat to the life of a dear friend of mine where I believe your office may be able to help.

When I opened my email this morning I found the following message from a long-standing, very dear friend of mine (I am godfather to one of her daughters). Lee Humble has a rare and very lethal form of breast cancer.

She is trying to obtain a new drug which, as I understand it, is a last resort but which has not yet been approved for use in Canada (“soon” according to Health Canada officials). The compassionate use program for this drug has been terminated on request of the drug company for reasons which, as the following message indicates, do not seem to be entirely reasonable if one is faced with a fast-moving threat to life.

This message has already been sent to Minister Rock and the media, among others. If there is anything you can do to intervene either with the Minister of Health or with the Drug company, I for one will be extremely appreciative, not to mention Lee, her family and many friends.

June 27th … we had been trying to locate an e-mail address for Genentech but could only find one for their investors. Owen sent off the following


Hoffman-LaRoche Ltd in Canada is blaming Genentech for insufficient supply of Herceptin to continue their Compassionate Use program prior to Health Canada’s approval of Herceptin. Please tell me, “what is the REAL” story.

That same day this suggestion was posted from Barbara.

Before everyone blasts off letters to Genentech I suggest we organize a stock purchase program so we can get a word in at the next shareholder’s meeting. As well, we can find out who is on the board of directors and bang on them.

The power with big business is NOT in compassion, it is in SHAREHOLDERS and making money for them … as such, a nice little block of stock would assure a platform for the meeting and a better sounding board. AND, of course, as shareholders, (even with only ONE share) they have to let us come to the meeting and we can make a HELL OF A LOT OF NOISE at that meeting..

Civil disobedience, through legal and shareholder channels might prove to be the fastest and easiest way to the top … who wants a bunch of us marching around with pictures of our loved ones and graphic posters of what IBC looks like during the shareholder meetings … or at the shareholder’s dinner for that matter .. Heck, we could sponsor a hole at the company golf outing … imagine the glorious HUGE posters we could put up to make them THINK about what this disease LOOKS like and FEELS like. All we need to do is buy ONE share each all of us and we have the right to be there and get someone to speak for us from the floor…

Anyone know what Genentech closed at on Friday? This could be FUN.


June 29th Owen had located the Genentech Corporate list of Directors and sent off this:

Dear Mr. Cohen,

My name is Owen Johnson and I am a member of the inflammatory breast cancer support list and the inflammatory breast cancer research list. One of our list members in Ottawa, Canada who has inflammatory breast cancer, and medically qualifies for Herceptin is not able to receive it.

A review of the facts, as we know them now, are in the accompanying copy of a letter from Lee Humble to Hoffmann-LaRoche Ltd. in response to her first letter to them, and followed by their disingenuous response to her first message.

Our question to Genentech is simply, “Is Genentech purposely withholding supply from Hoffmann-LaRoche Ltd. for any reason or reasons which may include trying to put pressure on Health Canada to approve the use of Herceptin?”

We look forward to your response. A copy of this e-mail is being sent to the inflammatory breast cancer research group.

June 29th

Dear All,
I have been having trouble with high blood pressure these last few days and am very dizzy and weak. My onc called here last night to ck on me and we talked a bit about my fight to get Herceptin here in Canada. He is approaching OHIP (my provincial health provider) to get them to fully fund sending me to the USA for Treatment with Herceptin.In his opinion I am a prime candidate and he is worried that I will not be able to get the drug here until after I am finished taking the Taxotere. Of course the whole object here is to get the two drugs together so they work synergistically. OHIP has funded out of country care often for cases where time is of the essence and the recommended treatment is not available in Canada. He also will pressure his contact in the drug company to ask what happens with their reserved drugs for present members of the compassionate use program who die. Like … can his patient now get that supply? If not why not? If that works then I would not have to leave home for treatment and no cost would be incurred. I was taking Taxotere every three weeks but we noticed that 10 days after each chemo the skin mets started reddening and swelling in the skin appeared. We had a talk and the result is that starting last Thursday I am having Chemo every week. Instead of reducing the dose load to 33% which would be indicated by the change from three weeks to one, he is giving it at 40%. So we hope to accomplish two things here … zap the fast growing cells more often and with a slightly higher dose.

My daughter and granddaughter (3 months old yesterday) are visiting. It’s so great!!!

Lee in Ottawa Canada

Genentech responded to Owen’s e-mail and assured us that there was an adequate supply of Herceptin but that Roche Canada had not asked for extra supplies. They also gave us the name of the person to contact at the parent company in Switzerland.

Owen and Anne sent her about a zillion messages on this saga. She replied that the parent company did not control Compassionate Use programmes in individual countries but thanked us for making them aware of the Canadian situation. Somewhere in the messages that were sent was a suggestion I had made of the possibility of organizing a North American boycott of the non prescription products of this company. I said that no self respecting woman would ever again buy these products once they knew how Canadian breast cancer patients were being used. I like to believe that this hit a nerve. We were becoming a public relations nightmare for arms of the drug company in three countries.

Friday June 30th 1999
Owen sent me mail saying “thanks for faxing the letter from the drug company.” I told him I had no idea what he was talking about. He faxed me the following letter addressed to me but sent to him by fax.

Dear Ms. Humble:

Thank you for your letter/e-mail dated June 21, 1999 regarding Hoffman-La Roche’s decision to no longer accept new patients into the Herceptin Special Access Program. Your concerns are noted and are being acted upon.

Let me assure you that Roche Canada takes the concerns of patients and physicians very seriously. The decision to no longer accept new patients into the Herceptin Special Access Program was made to ensure that treatment for those patients currently enrolled would not be compromised, given the quantities of Herceptin 150 mg in our Special Access Program inventory.

We are pleased to inform you that Herceptin has been made available for new Patients starting July 1st, 1999. Herceptin will be provided free of charge to all new patients enrolled in the program prior to Friday, August 13th, 1999. Please note, that all patients enrolled prior to August 13th, 1999 will continue to receive Herceptin free of charge until Notice of Compliance (NOC). As of NOC, the Herceptin Special Access Program will be discontinued, as patients will have access to commercial product.

As of August 16th, 1999 Herceptin will be made available to new patients by sale through a separate Special Access Program. These timelines are intended to satisfy the urgent needs of patients, and allow agencies sufficient time to set aside funding for Herceptin.

It is important to note that the responsibility of providing new therapies to patients is a shared one. There are three critical sectors, each with definitive accountabilities, responsible for bringing new therapies to Canadian patients.

* The pharmaceutical industry develops and manufactures new products
* Health Canada reviews the scientific evidence in support of new products and gives the manufacturer the authority to distribute new products in Canada.
* Provincial and other funding agencies ensure that adequate funds are set aside to cover the costs of new products introduced into the health care system.

Each of these sectors should be held accountable for delivering on their responsibilities. The pharmaceutical industry cannot make up for the deficiencies in Health Canada or the Provincial funding agencies.

At this time, we have received no formal indication from Health Canada as to when the review of Herceptin will be complete. It is important to know that as of July, Herceptin will be in it’s 10th month of review. In the US, Herceptin was approved in 5 months. Health Canada’s own performance target, which they aim to achieve 90% of the time is 6 months. In a recent communication from Health Canada we were informed that the department was satisfied with the progress of the Herceptin review. We believe the progress of the review has taken longer than necessary.

Should you wish to be treated with Herceptin, please contact your physician and ask him/her to contact Dr. N____ G____ (telephone ______). When we receive authorization from Health Canada to release Herceptin to your physician, we will expedite its shipment.

With this program we believe we are doing our part in ensuring that Canadian breast cancer patients are not denied this important new treatment.

Once again, thank you for your letter and best of luck with your continuing therapy.

Hoffman-La Roche Limited

and then signed by the medical director

We figure that the lady in Switzerland made a heated call to the Canadian company something to the effect of saying “WHAT ARE YOU GUYS DOING!!! Get these people off our backs!” Why else would they fax this letter to Owen? (I got the original delivered to my door by special courier on Monday morning.)

As soon as I read this letter on Friday I had my oncologist paged. He was amazed and phoned the Toronto number right away and then called me back to come into the clinic to sign papers that Toronto had faxed to him. I rushed over because it was closing time at the clinic. I had to read and sign 10 pages of consent forms which were then faxed back to the drug company doctor in Toronto.

My oncologist kept shaking my hand and hugging me. I wanted to scream my relief to the world. I don’t even remember the drive home.

With confidence that the Herceptin would prolong my life expectancy, I decided to get married! After thirteen years of togetherness Charles Smith and I got married in our backyard on July 4th, 1999. The bride wore a bandana over her baldness and carried flowers picked from the garden two minutes before the ceremony. The groom wore a clean golf shirt and a pair of walking shorts that he ironed himself. Our friends Peter and Judy were witnesses. There were no guests except for a few neighbours who peeked out their kitchen doors. We told our families about it after the fact. This is the reason you see me referred to as Lee Humble and then Lee Smith in this story!

July 13th 1999

I had my first Herceptin treatment.

Thank you Owen and all those of the IBC Research Foundation who helped me and numerous other Canadian metastatic breast cancer patients. I may owe my life to you.

In fact many others thank you as well. I received this comment in a letter from a fellow IBC Warrior in Canada on October 7th 1999:

“Health wise I’m on Herceptin weekly, thanks to you and the window that was opened from July 1st to Aug. 13th.”

I do believe that I will stop my story here. Perhaps another volume could be written on the push to get the Provincial Health Ministers to approve funding in a timely fashion. Suffice it to say that political mumbo jumbo and bungling is the same the world over! Interim funding was supplied so that no patient was left in limbo land without the drug.

October 8th 1999

I am considered NED (no evidence of disease) but continue to receive Herceptin each Tuesday. This will be my weekly routine until such time as the disease is seen to progress.

I am slowly recovering from the side effects of the Taxotere and the Decadron which were stopped September 7th. I still think I look like “Pig Woman from the planet Zenon” but am getting some definition back in my face and can actually see that I do have a neck again! I am hopeful.

Someone told me that NED should stand for “no expiry date”.

Part 3 of Lee Smith’s story about her struggle for the approval of Herceptin in Canada.

February 24, 2000

Is it at all possible that we have made a difference? Could it be that the fight for approval of Herceptin in the summer of 1999 had anything to do with the Science Advisory Board having recently “conducted a special ‘mini-inquiry’ into the branch’s drug-review process”? Might this have been prompted by the opposition party health critic enquiring as to why the Feds were being so slow?

Maybe our mini-war last summer was a tiny straw on the camel’s back.

Drug approval system under fire
Process needs overhaul to give Canadians more input, health minister told

Monday Feb 21, 2000
Mark Kennedy
The Ottawa Citizen

The federal government should dramatically overhaul its drug regulatory system so that Canadians have more say in whether proposed products are approved for sale, says a report prepared for Health Minister Allan Rock.

It notes the reforms could even include a provision to require pharmaceutical companies seeking regulatory approval for their drugs to defend the products as safe and effective at public hearings. Currently, drug companies submit their applications to the federal Health Protection Branch (HPB) in confidence and their request is reviewed privately by regulators.

That process has led to controversy and a decline in public confidence over whether the approved drugs are safe. Critics have complained consumers have no say in the process. Even some of the regulators have publicly claimed that they faced surreptitious industry pressure to approve drugs without sufficient scientific review.

Now, Mr. Rock is being urged by the Science Advisory Board to shine a light on the approval process. The board, led by astronaut Roberta Bondar, is a special committee of independent experts Mr. Rock created more than two years ago to review the operations of the beleaguered health-protection branch. In the last few months, the board conducted a special “mini-inquiry” into the branch’s drug-review process.

The thrust of the board’s observations are contained in an interim report completed four months ago and obtained by the Citizen. The document concludes the “transparency” of the drug approval process is responsible for much of the “friction and controversy surrounding the work of the HPB, and the consequent decline in public confidence.”

“Unless the scientific work of the HPB can be seen to be comprehensive, rigorous, adequately funded, and free from external influences, the current low level of confidence might dip even lower.”

The board is completing its final report, which will be presented to Mr. Rock.

In addition to calling for more openness, the board will urge the government to revisit its contentious “cost-recovery” policy in which pharmaceutical companies pay user fees every time they submit a new drug for approval. Critics have alleged this policy has prompted the drug companies to assume they should get faster service from regulators, even if it means a less rigorous review of safety considerations. Drug firms deny that charge.

Still, the firms complain it often takes too long to get their products approved, and some patients awaiting new drugs already sold in other countries have similar complaints. Thus, the board has concluded Mr. Rock’s department should increase government funds for the regulatory branch, so it can clear its backlog and review drug applications more quickly.

The board examined how the U.S. approves drug applications and discovered the Food and Drug Administration adopts a much more transparent process. There, each new drug application is potentially subject to a review in public. “In Canada, in contrast, the review process is internal to HPB, with high levels of confidentiality attached to the information supplied in support of the application.”

The board notes that in Canada, while the industry has indicated it is open to making the process more transparent, it also “seeks to protect its commercial intellectual property rights.”

“No observer can fail to be struck by the fact that the same companies that insist on secrecy when it comes to their applications in Canada are perfectly prepared to send senior scientific and management representatives to public hearings in Washington … to present details of their research and to answer detailed questions on the science supporting their applications to the FDA.”