BC Becky

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

Tag: treatment

  • 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.

  • Chemo day in pictures …

    Photo Jul 07, 7 28 10 AM

    Step one was to have the access placed into my port. This allows the nurse to draw blood for blood tests, but is also used for the infusion of chemo itself.

    Photo Jul 07, 7 53 15 AM

    Since they need to wait for the blood test results, we had about a half hour between the blood draw and the appointment with the oncologist, so we went over for the standard tree picture. This one indicates how I was feeling.

    Photo Jul 07, 7 53 09 AM

    And here is the more typical me with a smile on!

    Photo Jul 07, 10 33 47 AM

    My first reaction came at all the pre-chemo drugs. I’m still not certain what they all were. Three of them were anti-nausea drugs and one is a steroid. I thought we had the print out of what they all were but I cannot find it.

    This is the Doxorbicin (or the A in the AC regime). It is administered directly by the nurse. It was followed by Cyclophaphouride (C) which was a 1 hour IV drip. Although the appointment was for five hours, it didn’t take that long. I totally broke down when she brought the tubes of red stuff – but not nearly as much as I expected I would. The emotional breakdowns are inevitable.
     Photo Jul 07, 10 15 01 AMThis one was actually taken at the beginning while we were waiting for the nurse (notice the IV isn’t hooked up yet). Afterwards I was looking a little on the green side – but not feeling too bad. The steroids wore off at about 3-4 pm and the nausea started to kick in. Hope that ends today!

  • Significance of dates and getting ready for chemo

    It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

    Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

    On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

    We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

    Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

    I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

    I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

    Chemo calendar:
    July 7 – AC
    July 21 – AC
    Aug 4 – AC
    Aug 18 – AC
    Sep 1 through Nov 17 – weekly T

  • The calm and then the storm

    Yesterday was one of those calm then stormy days. It began with a breakfast meeting with a new friend, whom I met through the social network myBCTeam.com.  It turns out that we have a lot in common, and I think we would find ourselves as friend regardless of the cancer connection. She has a wealth of knowledge around breast cancer and resources available, which I’m sure will prove to be very helpful. I never thought that having breast cancer would be the thing that made it easier for us to meet people in California.

    I had not heard anything from Stanford until the afternoon. Then I got a call from interventional radiology. These are the folks that place the port. I now have that booked for Thursday. They use twilight sedation, similar to what they do with cataract surgery. They use a small incision (exactly what small means is definitely relative) to place a port directly into the vein. The port lives under the skin, so once the incision is healed I can swim and shower/bath without worry.

    Shortly thereafter I had a call from my oncologist (MO). He suggested that I could start chemo as early as Thursday – right after the port is placed. His call had woken me up from a pretty sound nap, so I was not even sure how to answer. I had to first answer the question of ‘which chemo’. I decided on AC-T. I had a gut feel about that one from the beginning. The MO said it was the one that about 80% of women who need chemo for hormone positive breast cancer get (this means they understand the side effects and how to treat them). Also, shortly after making that decision, my second oncologist confirmed that is the one she would recommend. So, I’ve heard from multiple sources that it is the right choice – and it feels like the right choice. So, both quantitative me and qualitative me agree on this one.

    I decided that I will not start chemo on Thursday even if it is an option (it still needs to clear insurance). It is all too fast, and I need to be mentally and physically prepared. Mostly, I need to ensure I’m well hydrated for a couple of days before and the placing of the port with twilight sedation means fasting prior to – so pretty the opposite of what my body needs.

    So, if I start on Monday it will go something like this (assuming there are no issues that cause breaks):

    June 30 – AC
    July 14 – AC (on this regime, hair typically falls out after second treatment, grows back during T)
    July 28 – AC
    Aug 11 – AC
    Aug 25 – T weekly for 12 weeks (until November 10)

    Some people are completely tired/fatigued during chemo. Others continue to work throughout. Apparently getting regular exercise helps to reduce the side effects, so I shall be trying to get out for walks and regular bike rides although perhaps not climbing too many mountains. Fortunately the paths near here are pretty flat. If my balance goes, we’ll look into renting or buying a used trike … we’ll make this happen!

    After that, there is a break for recovery before surgery. We are thinking a week or two on the big island in Hawaii! Last time we went to the Big Island (in 2006) we wanted to rent a VW camper van, but couldn’t because our Canadian car insurance would only cover continental US and we couldn’t find anyplace to buy insurance. Now that we have US car insurance, we’ll look into that option again.

     

  • Slash, Burn, Poison, and Starve

    A new friend commented to me that the treatments for cancer were to slash, burn, and/or poison. It bugs me that the most effective treatment and first choice is always to ‘cut it out’. I’ve added starve to the list for breast cancer, as that is one of the more effective treatments if you have positive receptors.

    Slash refers to surgery. It is often the first line of defense – just cut it out. For many women with small slow growing tumors, this is the only treatment required.

    Burn refers to radiation. Radiation is another localized treatment. If there is a risk of the cancer spreading locally (usually goes with the lumpectomy choice of surgery rather than mastectomy, where the surgeon cannot alway tell whether they ‘got it all’) then radiation is used to burn away any cancer cells that might remain.

    Poison refers to chemo. Chemo is a systemic treatment and affects your entire body. The reason you do chemo is to try to make sure that all cancer cells in your body are killed. If there are any cells floating around, you want to make sure they have been killed.

    Starve refers to hormone therapy. I’ve added this one to the list. If your cancer is hormone positive (80% of breast cancer is), then what is known is that the cancer feeds on Estrogen or Progesterone or both. So, once the slash/burn/poison treatments are complete you move on to starvation treatment that suppresses your bodies ability to produce the hormones that the cancer feeds on.

    One challenge many women face is with the starvation therapies. People often see the ‘treatment’ as finished after slash/burn/poison, and don’t realize longer duration effects of the hormone therapy. The duration of the hormone therapy keeps changing. They are back up to recommending 10-years of tamoxifin for pre-menopausal women (this had been reduced to 5 years at one point). Treatment doesn’t end just because you are not visiting the hospital once a week for an infusion. It becomes a silent pill that you take every day for 10-years, all along praying that the cancer doesn’t return.

    I’m not ready to contemplate the 10 years of treatment. I’m not ready to think beyond the first cycle – which for me will be poison. I’m too afraid of the spread. Doing surgery first would have meant a 4-6 week delay in the start of chemo – that is a 4-6 week opportunity for the cancer to spread.

  • How do you prepare to lose a body part?

    When the surgeon told me that most likely I would need a mastectomy I did not really internalize what that meant. When a new friend mentioned that it was like an amputation, that in some ways helped me see the scope of the surgery.

    It becomes even more real when I think that this could happen soon. It will likely happen soon – like, within the next 2-3 weeks. By July, I will likely not have my left breast.

    One of the things I need to think about is reconstruction. The state law says that insurance companies must provide coverage for reconstructive surgery after a cancer surgery. So, I have the option. The decision needs to be made before the mastectomy as it affects how the surgery is done.

    One of my first thoughts when I heard mastectomy was that I did not want to be lopsided. I didn’t like the idea of having one breast – of course, this was before I found out that there might be another malignant tumor in my other breast. So, with that, I might actually end up with bilateral surgery. One thing that plays into my decision is that I HATE bras. So, wearing a prosthetic to make me look even doesn’t at all sound appealing to me.

    So, I can logically think about what I want, and how this might play out, but I cannot emotionally prepare. I have no idea even where to begin with the emotional side of this decision. How does one even begin to prepare to lose a body part?

    [Correction: The law pertaining to insurance companies covering the cost of breast reconstruction post breast cancer is actually a federal law – The Women’s Health and Cancer Rights Act of 1998]

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