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.
Update:
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.
