BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: opinions

  • Transitions matter

    Talking to my friend Stacey this morning, and reflecting on the BCC (Bay Area Women’s Cancer Connections) Young Women’s Group for those in treatment and post treatment, I see a need for some form of “graduation ceremony” or “bridging ceremony” .

    At the BCC Young Women’s group, what I noticed was a very large group, where many close connections had been made. But also, the group was too big for those of us who were new. It was a bit intimidating, but also in order to give each person the 10-15 minutes they needed the group ran over 2.5 hours – which if you are actively in chemo treatment, is just plain exhausting. I had to choose not to attend because I couldn’t bare the thought of being there that long right after treatment.

    I struggle with the group being both “in treatment” and “post treatment” because they have another group which is a survivorship group. But what I saw was that with young women the actual post treatment is a long time. Treatment isn’t just surgery, chemo, rads .. it can involve several more surgeries and lots of follow ups. It is almost like they need three groups, one for those of us “in treatment” – cancer warriors as I like to refer to us. But I also see the need for another group to help those who have moved beyond that “in treatment” stage who are still fighting the issues of reoccurrence and addition proactive surgeries. So I see the need for the group, but also I see the need for people to make the transition to other groups, post-treatment, and survivorship, but there is no mechanism that I see to encourage that transition. Without that gentle ‘kick’ to move from one group to the next, the initial group doesn’t provide the support it needs to provide to the young women who are newly navigating the experience.

    In my discussions with Stacey this morning, I heard her desire to not be seen as “cancer Stacey”, but rather some new “Stacey” who isn’t first and foremost someone surviving Cancer. Again, I see this as a huge transition. It is a graduation of sorts. Not all women make that transition at particular time, but at some point the transition usually happens. For me personally, I’m looking to the Avon Walk and next fall when I formally re-emerge in into my thesis process as that transition. In the spring, I will begin by attending academic conferences, where I’ll still clearly be Cancer-Becky – as I’ll be hairless, and I may even be presenting on topics relating to being a breast cancer blogger. But in the fall, I will be writing my dissertation, and reporting on my life before cancer. I won’t be writing as “cancer-Becky” I’ll be writing as Ed-Tech Rebecca.

    Similar to working through the PhD process, it is important to celebrate the transition we make. Some of them are easily identified (e.g. passing comprehensive exams, getting your proposal accepted, the last day of chemo!). Others are more mental transitions, that take time … but when we are ready to self-identify and make those transitions, it would be so much easier if there were a more formal way to make that declaration – to celebrate the change.

    So Stacey .. if you are ready to make the transition, how do you want to celebrate it?

  • Bilateral Mastectomies

    A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

    I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

    I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

    The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

    The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

    I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

    My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

    I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

    I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

    What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.

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