BC Becky

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

Tag: reconstruction

  • Rethinking reconstruction

    I had a couple of doctors updates yesterday. One with the breast surgeon and another with the oncologist. On the good news front, my oncologist said that my left breast felt like ‘a normal lumpy breast’ rather than a breast with a large cancerous tumor! This is a sign that the chemo is working. He also commented that this point we are on ‘auto-pilot’, finishing off the chemo regime with switch to weekly Paclitaxol (T-chemo) starting Labour Day for 12 weeks. It also means I have about 12 weeks to figure out surgery.

    I was so confident in my decision for no reconstruction, but that confidence was built upon assumptions that are proving to be incorrect. The surgeon re-enforced my concerns about lumps and bumps. The reality is, that I’m not a skinny girl. There is only so much a breast surgeon can do – their priority it to remove the cancer and with a mastectomy to also remove all breast tissue. Even with no reconstruction, I’m looking at two surgeries – the first to remove the cancer, and the second to clean up lumps and bumps – in part because they cannot predict how you will heal. The surgeon strongly recommended a consult with plastic surgery and radiation oncology before I make a decision. So now I’m reconsidering my options.

    If radiation is not necessary – then I’ll be a strong candidate for immediate reconstruction. This would mean, during the same surgery I would have my breasts removed and a procedure done to replace my breasts with something. The something is either an implant or some fat from another part of my body (usually the stomach). Breastcancer.org provides a good high level description of the different reconstruction options.  Personally, I’d rather go flat then have implants – in part because my body tends to react negatively to foreign objects, but also because they need to be replaced every 10-20 years. There are a couple of options that use stomach fat (not muscle) that may actually work out for me (Diep Flap and Siea Flap). I despise how they advertise it on the comparison chart as getting a bonus “tummy tuck”, but in essence that is what happens. They move excess fat from your tummy and replant it in your breast – replacing the breast tissue with the tummy fat. If it works well, it gives a more natural look and feel as compared to implants – but the surgery time and healing time is greater.

    The surgeon did a good job of encouraging me to think beyond the immediate time – think one year, five years, beyond. One of my realities is that I’m not suddenly going to become a skinny girl. That isn’t in the cards for me. So, my body will inevitably have various rolls and folds. Previously, I wrote a bit about my concern for Buddha Belly. So I need to consider, what option is going to leave me with the better self-image of my body? Since being diagnosed, I’ve enjoyed a positive self-image (more so than before diagnosis), but I don’t know if that would still be the case after surgery.

    The other thing that is often pointed out is that you do not know how you will react post-surgery. You may not think of your breasts as an important part of who you are now, but that might very well change when you wake up and they are gone. This is one of the more frightening aspects of whole process. You could be ‘certain’ and wake up to discover that you were wrong. One of the common approaches is to leave as many doors open for surgery. So, rather than doing double-mastectomy with no reconstruction, they do a double-mastectomy with skin sparing techniques. The surgery takes longer, but it leaves you with more of your skin, making reconstruction easier. You can then decide later if you want reconstruction. Using this approach keeps the door open for options but also draws out the number of surgeries and the length of time you are being treated. If you make the reconstruction decision before the mastectomy and you are a good candidate, they can do the first two surgeries at once (reducing the number of surgeries and overall healing time, but increasing the healing time as compared to mastectomy alone).

    So now I shall wait again, for the next set of consults, to see what my options actually are. And then, maybe I’ll make a decision, but maybe not …

  • 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.

  • TV Breast Cancer

    Now, I don’t watch a lot of TV, so my perceptions may be off a bit, but I’m still a little mad. When someone on a TV show gets breast cancer, they don’t portray it right at all. They don’t show you the decisions that need to be made. They seem to always show you someone going through chemo – which many women with breast cancer don’t do – and they don’t show you surgery – which pretty much all women with breast cancer do. By dramatizing the whole experience they do nothing to prepare you for the reality of it. This makes me rather mad!

    Specifically, I remember last year one of the lead characters on Parenthood had breast cancer. She lost her hair, she got sick, she ended up in the hospital at one point because she ignored an infection – but they never dealt with the surgical implications of breast cancer – the dealing with what it means to have a part of your body cut off – and what it means in our society to not have a breasts. So yes, I’m expressing anger again, so perhaps that is the phase I’m beginning to enter in ernest.

    I’m also annoyed at our society. The entire concept of reconstruction is so much more emphasized here in the US. I recall one of the women in my PhD class commenting that this was “silicone valley” as in the land of fake boobs (she was mixing up LA and San Fran) – but from a breast cancer perspective, it certainly is the land of fake boobs (although from what I understand many people choose techniques that use their own body fat rather than silicone implants). It is like people will think I am weird if I do not opt for reconstruction – and yet I see all these non-essential surgeries and the extra pains that women go through – and I question it. Why would I want to subject myself to that (yes, there is some irony here, in that I had PRK eye surgery, but there was a defined quality of life benefit for that – I just don’t see that defined quality of life benefit for reconstruction). Many of the women I know going through reconstruction did not have chemo – so they had one less toxic experience with breast cancer – but still.

    In some ways, I think dealing with an inside cancer is harder and in other ways it is easier. With a lymphoma, it is much more serious because you cannot simply “cut it out”, but then you also don’t have to deal the surgical implications of cutting off a body part. I also feel for those who have slow growing cancers, who cannot actually feel their tumors. If you don’t have the physical evidence of the cancer, the doubt creeps in – do I really have cancer? Worse is that until treatment, you don’t feel sick – so there is also the perception that it is the treatment that makes you sick. I’m not quite in that case, as I have a large mass in my left breast. There is no mistaking it. It is there. But I do feel it regularly, and I question, “it is getting smaller on its own”, “it is spontaneously curing itself”, “maybe I don’t have to do this chemo thing after all”. I can only imagine how much worse those doubts would be with an invisible cancer that you cannot feel.

    Right now, I’m feeling strong. With each passing day the wound associated with the port is healing. I’m hoping for a longer bike ride today – might even try riding one of my upright bikes. I should be able to swim by next week, depending on when the third biopsy occurs. By not have surgery first, I’m loosing some certainty in the cancer – as they cannot fully stage it until it is removed and full pathology is done. I’m finding that the imaging doesn’t provide enough detail – to go from one larger tumor to two smaller ones under MRI which was not seen on ultrasound (although they are double checking on Monday) and mammogram, demonstrates the lack of accuracy in imaging.

     

  • Double-mastectomy and chemo

    If I’m repeating myself, I apologize. One thing that I’ve noticed over the last two or three days is that my short-term memory sucks. I cannot seem to hold thoughts for that long, and I am very often walking into a room having completely forgotten why I was there. Worse, is that I sit in front of the computer intent on doing something, then have no clue what that was, and am easily drawn in many different directions.

    Today we had a meeting with the surgeon and then oncologist at PAMF. I also had a phone call from the social worker, but I didn’t get a chance to talk to her because I was driving at the time.

    There isn’t exactly a plan for treatment yet, just some general recommendations based upon the known pathology. There is a key test (the HER2) that is expected early next week. The preliminary HER2 was inconclusive, and we need to know if it is positive or negative, so they send samples off to a different lab for further testing. To simplify the discussion with the oncologist, we only went over options that made sense for HER2 negative (which is 80% likely).

    The surgeons recommendation is a double-mastectomy. I had concluded this as well when the right came back positive, as I have two separate cancers in both breasts. What is interesting here is that prior to having cancer, I always thought that if this happened to me, I’d want it out immediately. Now that it has happened, I’m not as certain. Yes, I want it out, but the decision over chemo or surgery first is an interesting one. I have decided that I will not do reconstruction. This makes the surgery much simpler. Reconstruction brings with it a lot of risks, and frankly, I’d be happy to never have to wear a bra again! My nipples have never been a source of pride, and with reconstruction, I’d likely look all or most feeling, so if they are not a source of sexual pleasure, then there isn’t a lot of point to keeping them. Especially when nipple sparing surgery is both more complex and can potential increase the chance of re-occurance. So, it is logical. I like logical. And in some ways it is a relief to have the decision made.

    So far, both cancers (left and right) have the same characteristics (HR-positive and PR-positive). Given the growth rate of the left, chemotherapy is recommended. The chemo would be the ACT type (assuming HER2 negative). Don’t know too much about that yet, since we just learned it today, I haven’t looked it up yet. The chemo could happen before or after surgery, so this is the big question right now.

    Now if I am HER2 positive, that means that chemo will happen first, as there are some HER2 blockers that can only be given before chemo. There are complexities with HER2 – including an increase mortality rate – so if you are inclined to pray, pray for HER2 negative on both sides.

    One thing that I’ve learned is that statistics only mean something before you get a diagnosis. They provide hope (e.g. 80% of breast cancers are HER2 negative), but they mean nothing once you have received the diagnosis. It is no longer relevant what the statistics are about HR-positive and PR-positive. Both cancers are positive, so for me it is 100%. Statistics only matter for the unknown future, not the known present.

    Having two cancers is not so common, but it certainly made the double-mastectomy question easier. If I only had one cancer, keeping the second breast would have been expected (unless I’m BRCA positive – but that information won’t be available for a couple of weeks – we are hoping for negative here too). I would have then had a harder decision regarding reconstruction. I would have always wondered if keeping the right breast would mean an increased risk of occurrence, and it would mean mammograms every 6-months on the right breast, and constant worry. Plus it would have been harder to figure out clothing and all those complexities. Yes women do it, but I would have found it difficult – a constant reminder. So, the double-mastectomy was perhaps one of the easier decisions.

    Tomorrow we go for a second opinion at Stanford. It is also a chance to see the Stanford Cancer Center and decide if it is a better option for treatment. The folks at PAMF saw no reason that I would get any different treatment at Stanford given what we know now. The only thing that might matter is if there is a clinical trial that I qualify for at Stanford that isn’t available at PAMF (the PAMF oncologist didn’t know of any). Stanford in some ways, Stanford has the coolness factor – I could say “I went to Stanford” and I’d wear the sweatshirt with pride. But it is also further away from where we live. At least 20 minutes further, and parking costs $12 (parking is free at PAMF and most of the locations are within 5-10 drive from Scott’s office and 20 minute drive from home). This all adds up. And so far the care at PAMF has been superb. So, although I might have been leaning towards Stanford late last week, I’m now leaning the other direction. But, tomorrow will tell. I may get to Stanford and feel that everything is right there … I am happy to know that I have choices, as choice means that I have some sense of control (I’m a control freak) … and with so much of this, I don’t have any control. So, I’ll take what I can get!

    And now, it is definitely time for a good nights sleep …

     

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