BC Becky

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

Category: Surgery

  • Ya, no …

    Ya, no … That is pretty much what I thought when the resident on call suggested a catheter with a pee bag attached to my leg for the next week or so.

    I don’t think she really heard me right. I said I was having difficulty urinating, but I am still doing it! There is still pee coming out of me … perhaps not as much as should be.

    Over the phone she diagnosed me with post-operative urinary retention. It is not uncommon. Actually, a quick Google search shows that it is the most common side effect for anesthesia. I was hoping to be given some anti-spasm drugs (like you sometime get with a urinary track infection), no such luck. The problem is that the involuntary muscles aren’t working properly. The way the resident explained it, is that my bladder is still ‘asleep’  – it has not yet woken up from the anesthesia.

    Sensing my non-compliance, she asked if I was OK with the plan. I said no, how about we watch and wait – cause I am passing some urine, I’m not completely blocked – it is just taking time and not flowing properly. I don’t completely trust the resident’s opinion. I want to hear it from someone with more experience. I have an appointment with my surgeon (whom I trust) tomorrow at 10am. So, the resident and I negotiated a plan. I would watch and wait, but if I have a window of 6-8 hours where I don’t pass any urine or if I feel my bladder is full/distended, then I’m to go to urgent care and ask for a catheter and leg bag. I must give the resident credit for detecting by the sound of my voice that I had no intention of just going in and getting the catheter and bag. We spent a good few minutes discussing the watch and wait option, so I know what signs mean I need to go and get it deal with.

    Now that I’ve had a little more time to process the idea, I can deal with it. If my surgeon says I need it, I will get it tomorrow, and deal with it while travelling (oh joy). The resident said that it would stay in for a week, and then they would do some test to see if my bladder was working properly (voiding properly) such that it could be removed.

    On the pain front, I’ve started to wean off the pain meds. I’m on a lower dose, less frequently, and so far it is working out OK. I caught myself last night unconsciously doing my normal inspection/feel of my breasts, I accidentally squeezed one of them a little. Hurt like …

    … won’t be doing that again anytime too soon!

     

  • A photo shoot and getting ready for surgery

    Never in my life did I even imagine that I would be naked in a home photo studio in Berkeley California (well, maybe not actually Berkeley, rather Albany, which felt a lot like Berkeley) … anyways, it isn’t something I ever thought that I would do, and yet I did it. Cancer has certainly meant I’ve found myself doing a lot of those “never” things.

    I had been pondering the idea since I first learned about Camera’s Over Cancer – I had even booked a session with them – but was discouraged by it. I didn’t want to buy clothing just for a photo shoot, and I am not the type of person who has a closet full of boudoir appropriate outfits. I was also challenged with getting to their studio (which interestingly enough is out in Oakland, and actually closer than where I went today).

    At the BCC conference, there was an exhibit of photos on each table. The photos where really classy pictures that celebrated women’s breasts. The photos were taken as part of a project by Laura Turbow called For Luli (you can read about it here). Her photos really spoke to me, so I emailed her about a possible session. As I was unable to drive earlier, or get a ride, we ended up booking for today – the only possible time to take the photos before surgery. It was rather fortunate that her schedule and my schedule aligned. To be honest, I was much more nervous about my ability to drive then about having photos taken. It is the first time I’ve drive on my own up through Oakland to Berkeley. I was rather intimidated by the need to drive on that particular highway, which is often full of traffic. It turned out to not be so bad! So, today, I found myself in Laura’s studio, just north of Berkeley California, posing for a classy set of photos that celebrate my breasts. I really enjoyed the process, and I’m really looking forward to seeing the photos. When I get them, I’ll share a few of the ‘general public friendly’ photos here. I recommend the session for anyone who wants to capture their pre-surgery selves.

    And now I need to get back to my pre-surgery preparations. I’m getting some food ready for when I can eat when I get home, and I need to shower before trying to get a little bit of sleep. I will need to shower again in the morning before driving up to Stanford for a 6 am start. Surgery isn’t until 1:40 pm, but there are several pre-surgery procedures that need to be done first. Specifically, injection of some nuclear isotope into each breast that helps to identify the sentinel node, and the insertion of wires to guide the surgeon to the exact location of each of the tumors, neither of which sounds at all like fun. I do hope the plan to use the paravertebral nerve blocks is still in place. That will make my morning go a whole lot smoother!

    One of my concerns with surgery is that I’m highly sensitive to adhesives, even steri-strips cause my skin to blister. If any tape or adhesive based dressing is used, it will blister within a few hours – making me very uncomfortable but also hindering my body’s ability to heal. Fortunately, they don’t need to use adhesives, they just need to be reminded to not use them (they use special surgical glue to close the incision). My husband came up with the idea of adding a note in permanent marker on my belly (actually just under my breasts) … so I’ll have him write “no tape” as a reminder to not put anything sticky on my skin!

  • ‘For now, the chemo is done …

    Yesterday was my last scheduled chemotherapy – taxol. We went to the tree before my first appointment and took the requisite pictures. I had some fun with it.

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    Towards the end of my treatment, the chemo nurses sang the chemo song: http://vimeo.com/110530951

    A tear or two did drop from my eyes as they were singing and congratulating me. For the last four treatments, I had been anticipating the moment I finally got to say “this is my last chemo”. The problem is, I don’t feel like the chemo is done. Let’s start with the fact that this may have been my last infusion, but I still have to go through the side effects from the last infusion – so I still have a difficult week ahead of me before I start to recover from the chemo. But also, my treatment isn’t done. I don’t know what the results of the pathology will show. So, for now the chemo is done, but I just don’t know that it is really done. So instead of ‘hey now, the chemo is done’ … it feels more like ‘for now, the chemo is done’ …

    From the treatment perspective, focus is now shifting to surgery. It seems each time I see the surgeons things change a little. I wanted to know from my breast surgeon, where the incisions were going to be and what I could expect when I wake up from the first surgery. The thing is, they do the incisions on the first surgery based upon the second surgery – so they can use the same incision points. Fortunately, Thursday is the day that plastics are at the women’s center, so my breast surgeon brought in my plastic surgeon and the two of them discussed and decided where the best place would be for the incisions. The my surgeon drew on (in ballpoint pen) where the incision will be.

    We then talked about pain management. Prior to surgery I will see nuclear medicine to have an isotope injected to help identify the sentinel node(s) for the sentinel node biopsy. In my case, this will involve approximately 4 needles in each breast, each feeling like a bee sting. Then, I’ll go to mammography center where they will use a mammogram machine and place wires that the surgeons will use to identify where two of the tumors are (current plan is to only remove L1 and R1 – one tumor on each breast). Typically, a local anesthetic is used for wire placement (although it still not pleasant with the mammogram machine squeezing – which is extra not fun when you have port). They don’t usually use any anesthesia for the nuclear injections. Of course, in most cases, women are only doing this with one breast. My surgeon happens to be connected to the head person for pain management in anesthesia (the regional director). Given all the pre-surgery procedures, I’ve been referred to him to have paravertebral nerve blocks prior to the visit to nuclear medicine for the injections. This will mean (in theory) I won’t feel anything around the breast area.

    All my pre-op appointments are scheduled in the morning. Surgery is scheduled for 1:30pm and has been booked for three hours. Then I go to recovery for at least 2 hours (while I wake up). I’m booked for an overnight in the hospital. I’m happy to be in the hospital overnight, as that is when all the surgery related pain meds will wear off – so I’ll have ready access to doctors if needed to help with pain management. We will leave the hospital with written prescriptions for pain meds (actually, I’ll probably send Scott over to the Stanford pharmacy to get the filled – so we will leave with the drugs in hand).

    I continue to be impressed with the little bits of special treatment I’m getting. I’m definitely a squeaky wheel – in that I booked the extra appointment to see my surgeon because I didn’t know where she was placing the incisions – and I wanted to know. I’m so glad we had the appointment, as I have a much clearer picture of how things will work on the day of surgery, and being a special case for pain management will also mean my personal experience will be a little less painful.

     

     

  • Groundhog Day

    Last night I was reminded of Groundhog Day – if the groundhog sees his shadow, then 6-more weeks of chemo – if he doesn’t see his shadow, then we are done with chemo. Today is mostly cloudy (figuratively, not literally, its almost always sunny here).

    MRI results are rather encouraging (although I don’t completely understand them) – there is no sign of nodal involvement. The more encouraging line in the results relates to the large tumor on the left breast (L1), which the report says “there is near complete resolution of abnormal enhancement”.  The other two tumors, L2 and R1, have shrunk but are still there – as these were slower growing, it isn’t surprising that they are less responsive to the chemo. The general consensus is that I’ve had an excellent response to chemotherapy and that I can proceed to surgery at any time. Chemo is only needed to maintain until surgery – so if they cannot get the surgery scheduled soon enough then additional chemo is needed.

    The next new bit of information is relating to the surgery. The breast surgeon recommends a two-stage approach – the first being a lumpectomy, sentinel node biopsy (axillary lymph node dissection only if positive biopsy), and devascularization of the nipple and aerola complex. All the removed parts are then sent to pathology for full analysis. In essence, this is the cancer surgery plus devascularization of the nipple area. The devascularization increases the blood flow to the skin around the nipples, reducing the risk of issues with the reconstruction. It also includes a biopsy of the area under the nipple, which determines whether or not the nipple can can be spared. This is done approximately three weeks after the stop of chemo. I’m waiting to hear on dates for this.

    The second surgery is bilateral mastectomy sparing the skin and nipples (only if they are cancer free) with immediate flap reconstruction.  This happens about three weeks after the first surgery (this is tentatively set for December 16th but will likely be earlier).

    What I like about this approach is that we get the cancer out quickly – so it is gone before it gets a chance to grow again. We will also have pathology before reconstruction. It doesn’t necessarily change the surgeries, but it is a consideration (we will have confirmation that radiation isn’t required). It makes the breast surgeon’s part of the second surgery a little easier, but that isn’t the big part of the second surgery. The bigger part is the reconstruction – so the second surgery is still a long surgery (8-10 hours).

    After the second surgery I start anti-hormone therapy (tamoxifen) for 10-years.

    There is also a third surgery that takes place no sooner than 3-months after the reconstruction. This is the “revision” surgery. Once everything has healed from the cancer surgery and primary reconstruction, the plastic surgeon goes back in and cleans up any scar tissue and lyposuctions any extraneous fat pockets.

    So where does this leave me? After all the surgery discussions today, my oncologist still wants me to do one more chemo treatment. I wasn’t willing to do it today (I have mouths sores and I want to give them a little more time to heal). So I have chemo scheduled for Thursday. Depending on when the first surgery date is, this will likely be my last chemo.

  • Flexibility … and some good news …

    One thing I can say for certain, the cancer journey is anything but predictable. I had all of these plans made based upon when my chemo dates would finish … and now things are going to get crazy again.

    My first appointment this morning was with radiation oncology. I saw a resident who was clearly new and needs a fair be more practice at taking histories and listening to patients. He also needs some work on empathy. I am left thinking, how do you teach those skills? I don’t know, but this resident – although clinically wasn’t bad – certainly needed to work on the skills of engaging the patient – but also on things to say and not say to someone on the first consult to radiation oncology!

    When the attending oncologist came in, she began by asking us where we were from and a little bit about us. She introduced herself not just to me but also to my husband. I found myself thinking that the resident really needs to watch the oncologist (perhaps some role modelling) to show how to developed a rapport with me before starting to talk about the cancer. Her synopsis was, given the information they have from my pre-chemo MRIs, and the fact that I’m planning on a bilateral mastectomy, that I most likely will not require radiation. There is the obvious caveat that if the post-surgical pathology finds something, then that assessment might change – in particular if the pathology shows lots of cancer or a specific type of tumor/tumor remnant, then radiation might be warranted. But at this point, the MRI is not indicating that. Yay.

    I should also mention that the resident also did a thorough exam (clearly he was pretty new to this as well – still getting his feet wet) – anyways, he examined my breasts both in the seated and laying down positions – and couldn’t feel anything in either breast, and nothing on the lymph nodes. So, he confirmed that I have no clinical signs of cancer. Again yay.

    Then I saw my oncologist. My blood levels are still declining, but they aren’t low enough to stop chemo or transfuse. With Taxol, I’m experiencing annoying side effects. Again, not bad enough to stop chemo, but enough to be a concern. However, given the lack of clinical signs of cancer (my oncologist also confirmed that he isn’t feeling anything), that we COULD stop chemo and ‘pull the trigger’ on surgery. That it is my choice.

    Part of me has a knee-jerk reaction – I have everything planned out. I have a trip to Ontario booked to see family, I have a trip to Hawaii booked for my breast memorial. All this is based upon finishing 12-weeks of Taxol and have surgery after that.

    Now, if we stop chemo, then we still wait 4-6 weeks for surgery. My body needs time to heal from the chemo (and honestly, I could really use a break right now). My blood counts needs to recover before I can contemplate surgery. But I am encouraged also to have surgery as soon as feasible, because the cancer might not be completely dead. So if it isn’t, we don’t want to allow too much time … surgery needs to happen as soon as it is safe to do so (4-6 weeks after chemo).

    Part of me is feels OK with this. I don’t like the idea of stopping chemo because of side-effects, but stopping chemo because we think the cancer is dead and there is no reason to continue the chemo – that is a good reason to stop it.

    I don’t want to just stop though – I cannot have today be my last chemo day – I need a schedule that says it is my last chemo day – I need to hear the chemo nurses sing the chemo song (they sing to you during your last treatment). I need that in order to feel that it is done.

    So, now I go through reasons why I should stop the chemo – one reason really – side effects. The neuropathy and cognitive disassociation (chemo brain) I’m feeling. The longer I’m on taxol the higher chance these effects can become permanent. In most people, the side effects end within a month or two of the chemo ending, but for some people it is permanent. So the longer I’m on, the more likely there would be long-term damage. That isn’t good. It is a good reason to stop the chemo, even if the cancer wasn’t responding … but given the cancer is responding, it is a pretty compelling reason to decide that I’ve had enough of the Taxol.

    But then part of me says, but you had a plan … Another part of me says, you always knew the plan might need to change … part of me is jumping up and down with joy – this really is the best outcome we could expect.

    And so this week and next, things will get really busy. I will begin with an MRI which will help to confirm what is happening with the tumors. The MRI is the best evidence the surgeons will have, and will be the best evidence I will have. I’ll also push to get the CT of my belly ordered, as that information is needed for plastics. Once the MRI and CT results are in, I’ll meet with both surgeons (breast surgeon who does the mastectomy and plastic surgeon who does the reconstruction) to go through the surgery and dates will get set! I expect lots of appointments in the next few weeks!

     

  • Reconstruction update

    Saw the plastic surgeon yesterday. I really liked her. This is good.

    We walked through the different surgeries and options. She validated that I’m a good candidate for DIEP/SIEP reconstruction based on physical exam. There is another test that she will order – a CT of the belly – to see whether or not I have big enough veins/vessels/something. The idea is that the CT will tell her if my vessels are big enough to allow for the surgery. So, this is good. Now I wait for news from the schedulers. I hope that December 17th still works – it is a challenge to schedule this surgery as it is an all day event for the plastic surgeon (8-10 hour surgery).

    The go/no-go on this surgery will be determined by scans done at the end of November – before the next surgery consult. At that point, scans are done to see just how well the chemo has worked. This will be the best information we have prior to surgery. Decisions will be made based upon these results.

    What was good was that she helped me to better understand the recovery and helped me feel more comfortable with both the surgery itself and the recovery from the surgery. She helped me to understand that regardless of whether radiation is required, the option that is likely to have the best outcome (both aesthetically and recovery wise) is to do the reconstruction immediately (so with the BMX). From her perspective, I am healthy. I have no comorbidities (that is, I don’t have other illnesses that would increase my risk of complications).

    I’m amused at how she looks at my body and wants to sculpt it – to reshape it – and casually mentions a revision surgery that involves lyposuctioning various extra fat bits to allow for a better cosmetic outcome. She comments that you don’t realize the fat is there until after the first surgery – you become more aware of different fat pouches after they remove the belly fold. I cannot help but feel pleased about this potential sculpting, but I’m also cautious about it. It is not surgery that I would choose to do in and of itself.

    Somehow, I am feeling a lot calmer about the surgery – a lot less anxious than I was before. It seems more like something that I can handle – I can get over it – I can recover from it.

    I feel a little calmer at the idea of looking down after the surgery and seeing myself – if they are able to spare the skin and nipples (they only do this if the various in-surgery biopsies are clear) – then when I look down it will look like me. My outside will be the same, the inside will be different – but it will still all be me. With less belly my hips will look huge .. instead of difficulty fitting shirts, I’ll have difficulty fitting pants … and yet, this doesn’t bother me. I can imagine myself looking sleeker – feeling good about my body.

    For the last week I’ve been replaying the diagnosis … I don’t know why, but my mind seems to be on replay. I keep going through the day in my head – the day everything changed. Today I’m able to see beyond chemo and even beyond surgery – and that is good.

    This decision feels right …

  • Pathological Complete Response and Comments on Reconstruction

    I’ve been reading up a bit on the expected pathology reports for post-mastecotomy after neoadjuvant chemotherapy (that is, what should I be hoping for in the pathology after chemo – and what does that mean?).

    To start with my new term for the day is “pathological complete response” or pCR – this indicates the degree to which the chemotherapy treatment has killed the cancer. According to Cortazer et al (2014), you are considered to have a pathological complete response if:

    • absense of invasive cancer or in-situ cancer in breast or the axillary nodes (ypT0 ypN0)
    • absence of invasive cancer in breast or axillary notes but in-situ is present (ypT0/is ypN0)
    • absence of invasive cancer in breast but in-situ and nodal involvement (ypT0/is)

    Note that definitions for pCR are not consistent – so each study defines it for their own analysis. For those in the analysis with the same type of tumor I have (based upon my most aggressive tumor which is IDC ER/PR+ HER2- grade 3) the pathological complete response rate is 16.2 % (95% Confidence interval – so 13-4-19.3). This means that I can expect about a 16% chance of having a complete pathological complete response. This takes into account everyone with the same type of cancer, but doesn’t separate out those who had clinical indications of node involvement prior to surgery/chemo. Of those who had no clinical indication of nodal involvement regardless of cancer type the numbers are 18.8 % (95% CI 17.9-19.8). So I’m hoping for the higher number, since I don’t have any indicators of node involvement.

    The research says that for the type of tumor that I have, if I have a pathological complete response then it is a good indicator of my overall survival.  The studies don’t say anything about survival if you don’t achieve pathological complete response. The purpose of the two studies I looked at was to determine when/if pathological complete response was a good indicator of disease free survival. The answer for my type of cancer is yes – if the pathology comes back with pCR then that is a good indicator of disease free survival.

    Note that it takes along time for a study to be published – so this study published in 2014 is based upon patients that were treated between 1990 – 2011.

    The second study that uses more categorization and is more detailed. It gives me a higher likelihood of achieving pCR (11.2 % ypT0 ypN0, 15.4% ypT0/is ypN0, 17.6% ypT0/is ypN0/+). The one quote which is interesting is “subgroups with highly proliferating tumors, pCR can discriminate between patients with good and poor prognosis accurately” (von Minckwitz et al., 2012, p.1802).

    So, I now know what I should be hoping for when the pathology comes back after my bilateral mastectomy surgery.

    The one thing this exercise is telling me is that I really want to know the pathology from my bilateral mastectomy before I commit to the DIEP flap surgery. This has me leaning towards a skin sparing mastectomy with immediate reconstruction with tissue expanders. This means that if I want the DIEP surgery later, I can have it. Or I can have the expanders removed and skin cleaned up if I don’t want it. It leaves the doors open for reconstruction or not – and the decision will likely depend on prognosis. If I’m going to live a long healthy life post breast cancer, then the DIEP surgery is a worth-while investment in my time and physical energy. If the prognosis is not so great, then I’d rather be done with the surgeries and get on with living.

    Reference

    Cortazar, P., Zhang, L., Untch, M., Mehta, K., Costantino, J. P., Wolmark, N., . . . Valagussa, P. (2014). Pathological complete response and long-term clinical benefit in breast cancer: the CTNeoBC pooled analysis. The Lancet. Retrieved from http://www.rits.onc.jhmi.edu/dbb/custom/A1/files/12/pCR_Cortazar.pdf

    von Minckwitz, G., Untch, M., Blohmer, J. U., Costa, S. D., Eidtmann, H., Fasching, P. A., . . . Loibl, S. (2012). Definition and impact of pathologic complete response on prognosis after neoadjuvant chemotherapy in various intrinsic breast cancer subtypes. J Clin Oncol, 30(15), 1796-1804. doi:10.1200/JCO.2011.38.8595

     

  • Breast reconstruction (academic analysis)

    In preparation for my consult with plastic surgery this week, I’ve been doing some reading on patient satisfaction after breast reconstruction. I began by asking the medical information officers at Bay Area Cancer Connections for a link to a few articles. From there, the academic in me took over, and I search and read a variety of articles regarding post reconstruction patient satisfaction.

    First off, I should start by pointing out an important blog post written by Nancy on why post-cancer breast reconstruction is not a boob job. When looking at patient satisfaction, I focused on post-cancer reconstruction which is a lot more complex than cosmetic reconstruction.

    I should also point out the my literature review focused on autologous reconstruction, in particular on DIEP flat reconstruction – as this is what I currently believe I’m most interested in. I’ll have a better sense after the consult, as I don’t yet know that I’m a candidate (although I think I am).

    Important terms:

    • Autologous reconstruction is reconstruction that involves the patients own tissue (e.g. DIEP flap, TRAM flap).
    • Prophylactic mastectomy (PMX) is the removal of the healthy breast to reduce the likelihood of re-occurrence of breast cancer. PMX is also performed on women who after unilateral mastectomy dislike the lack of symmetry.

    In my literature review, some interesting things emerged:

    • In a great general article on breast reconstruction Serletti et al (2011) indicate that “studies suggest that generic counseling increases the likelihood of choosing prophylactic mastectomy, despite the fact that BRCA accounts for only 5 to 10 percent of all breast cancers” (Serletti et al, 2011, p.124e). In other words, seeing a generic counsellor likely increases prophylactic mastectomy. Now, given that you typically are referred to a genetic counsellor if you have a family history and/or are diagnosed under 45 years of age, I’m not completely surprised by this.
    • The biggest factor in determining timing for reconstruction should be whether or not radiation therapy is required, as “several studies have identified postreconstruction radiation therapy as an independent risk factor for volume loss, fat necrosis, and poor cosmetics”  (Serletti et al, 2011, p.129e). That being said, women are generally happier (sooner) with immediate reconstruction. That is, Zhong et al, 2012 highlight that post-surgery happiness is the same, however, the time post-mastectomy pre-reconstruction women are less happy. However, the reason for delayed reconstruction is usually cancer treatment, so I’m not surprised they would be less happy!
    • The rates of implant-based surgeries in the US has dramatically increased (as compared to autologous reconstructions option) (Albornoz et al, 2013) despite literature that indicates that patients longer term satisfaction is greater with autologous reconstruction (Yuch et al, 2010). This in part may be attributed to the increased surgeon compensation rates, but also the availability of operating room time. Autologous surgeries take significantly more time to perform and the hourly rate of compensation by insurance companies in the US is lower than for implant-based surgeries (Albornoz et al, 2013) . One of the studies I read said that university hospitals did not show this same increase in implant surgeries – highlighting the economic reason for the increase (I can’t find the reference now).
    • “The strongest predictors of implant reconstruction were procedures performed after 2002, Medicare recipients, bilateral mastectomy defects, and patients operated on in the West and Midwest regions” (Albornoz et al, 2013, p.21).
    • “It is now mandatory for partitioners caring for women with breast cancer to inform them about reconstruction” (Albornoz et al, 2013, p.20).
    • “Studies suggest the increase in bilateral mastectomies is attributable not to the changing incidence of bilateral breast cancer but rather to the growing use of contralateral prophylactic mastectomy” (Albornoz et al, 2013, p.21-22).
    • In a Canadian study that looked at patient outcomes after autologous reconstruction patients scores on breast, sexual well being, and psychosocial well being improved after surgery (measured at 3-weeks and 3-months). The only negative finding was that at 3-months patients scored lower on abdominal well-being – that is, even after 3-months patients felt a decrease in their abdominal health. Note that the surgeries in question were predominantly DIEP flap which did not involve muscle from the donor site (Zhong et al, 2012).
    • Both Zhong et al (2012) and Yueh et al (2010) indicate that women undergoing DIEP surgery travelled further for treatment. This is likely because it requires specially trained surgeons (surgeons trained in microsurgery) and as a result the surgery is only available in major centers (more commonly offered in academic settings – in part also because surgeons are not compensates as much for autologous surgery as they are for implant surgery).
    • Institutions that do more flap surgery have better flap surgery outcomes (significantly). Specifically, “in centers with a high volume of microsurgical procedures and experienced surgeons, the number of total flap losses tends to be low, an dis consistent with our flap loss rate of 1.8% in the DIEP flap group” (Momoh et al, 2012, p.22). I’ve seen numbers as high at 10% for flap loss rate.
    • Patients who have reconstruction have increased body image afterwards (Gopie et el, 2014) – not a comparative study – so doesn’t say anything about body image of patients who don’t have reconstruction – does breast cancer create a more positive body image regardless of type of post mastectomy surgery choice?
    • In Canada the barriers to immediate reconstruction for flap surgeries include availability of operating rooms and experienced surgeons. Socioeconomics play a role in whether Canadians get access to immediate flap reconstruction. Women travel to special centers to access immediate flap reconstruction (Zhong et al, 2014).
    • With abdominal flap reconstruction, patients are not necessarily satisfied with the abdominal outcomes. This highlights the need to better set patient expectations regarding not just the breast outcomes but also the abdominal surgery outcomes (Niddam et al, 2014).
    • In looking at a large insurance claims database, Jagsi et al (2014) note that 76% of patients who underwent bilateral mastectomy opted for reconstruction. They also note that those who underwent radio therapy were less likely to undergo reconstruction. That being said, I wonder if the radiotherapy numbers include lumpectomies (which they would), such that reconstruction is less likely to be necessary.
    • In a study looking at risk factors associated with blood transfusions and DIEP surgery, Fischer et al (2014) looked at neo-adjuvant chemotherapy but did not indicate that it was a risk factor. Those who have blood transfusions are more likely to have complications (no mention of causality in the study – so it could also be said that those who have complications are more likely to have blood transfusions). One thing that is useful to look at if you are having the longer bilateral mastectomy with reconstruction surgery is giving your own blood in advance of the surgery, so that you can have it available for transfusion. I’m not sure if this is even possible when you have neo-adjuvant chemo.
    • Lundberg et al (2014) reviewed the literature and provided a view that DIEP surgery is only cost effective in patients who have been treated with radiotherapy (and are therefore not candidates for implants). They point out that the studies done so far use “bad science” (I don’t agree – this article reads as somewhat biased itself). They do say that if you are a smoker, you should stop smoking 4-weeks before DIEP flat surgery in order to significantly reduce complications. They also point out the BMI over 30 is a risk factor. What is interesting here is that you need to have enough body fat to have enough fat at the donor site, but too much fat reduces the likelihood of successful outcome. It will be interesting to see what the plastics folks say for me.
    • Lundberg et al (2014) recommend “angiography … preoperatively to find out if the flap has perforators and can provide the anatomical prerequisites for the operation to be successful” (p. 108)
    • Those undergoing nipple sparing surgeries are more likely (>88%) to have immediate reconstruction (Albornoz et al, 2013).
    • Serletti et al (2011) highlight that many patients “begin by saying they do not want implant reconstruction” (p.125e).

    One of the challenges with using literature to help inform your decision is that it is all based upon the past. As was highlighted by Lundbert et al. (2014), the techniques and tools (e.g. implants) used today are not the same as those used 5 and 10 years ago. As a result, the studies involving longer term outcomes are not truly representative. In many ways the surgery will be a gamble – the decision may be based upon the best information available at the time, but there is always the random chance variable that we just don’t know. In many ways, my surgery choice needs to be in part based upon my gut feel – the same as my decision for neo-adjuvant chemotherapy. I have to choose based upon what ‘feels’ right for me, after collecting all the evidence I can.

    In looking at the literature I am most concerned about studies regarding the cost/benefit analysis of the different reconstruction types. There is a significant trend towards implant based reconstruction. This can be attributed to the change in technology being used (a new type of silicon implant was approved in 2006), but also because it requires less time in surgery, and it therefore easier to schedule. In addition, the autologous surgeries require specially trained plastic surgeons – which means women need to travel to major centers in order to have this type of surgery (makes me glad that I’m being treated at Stanford!). My concern is that the cost/benefit studies will be used by insurance companies to deny women specific types of surgery. Although the Women’s Health and Cancer Right Act of 1998 requires that insurance companies cover reconstruction, I’m not sure how comprehensive that coverage is and whether insurance companies can limit it to types of reconstruction?

    OK, I have a few more articles to read, but I’m not getting much new information – which means I’m reaching saturation on this particular literature review.

    If you want a copy of a particular article and don’t have access, send me an email.

    References

    Albornoz, C. R., Bach, P. B., Mehrara, B. J., Disa, J. J., Pusic, A. L., McCarthy, C. M., . . . Matros, E. (2013). A paradigm shift in U.S. Breast reconstruction: increasing implant rates. Plast Reconstr Surg, 131(1), 15-23. doi:10.1097/PRS.0b013e3182729cde

    Gopie, J. P., ter Kuile, M. M., Timman, R., Mureau, M. A., & Tibben, A. (2014). Impact of delayed implant and DIEP flap breast reconstruction on body image and sexual satisfaction: a prospective follow-up study. Psychooncology, 23(1), 100-107. doi:10.1002/pon.3377

    Jagsi, R., Jiang, J., Momoh, A. O., Alderman, A., Giordano, S. H., Buchholz, T. A., . . . Smith, B. D. (2014). Trends and variation in use of breast reconstruction in patients with breast cancer undergoing mastectomy in the United States. J Clin Oncol, 32(9), 919-926. doi:10.1200/JCO.2013.52.2284

    Lundberg, J., Thorarinsson, A., Karlsson, P., Ringberg, A., Frisell, J., Hatschek, T., . . . Elander, A. (2014). When is the deep inferior epigastric artery flap indicated for breast reconstruction in patients not treated with radiotherapy? Ann Plast Surg, 73(1), 105-113. doi:10.1097/SAP.0b013e31826cafd0

    Momoh, A. O., Colakoglu, S., Westvik, T. S., Curtis, M. S., Yueh, J. H., de Blacam, C., . . . Lee, B. T. (2012). Analysis of complications and patient satisfaction in pedicled transverse rectus abdominis myocutaneous and deep inferior epigastric perforator flap breast reconstruction. Ann Plast Surg, 69(1), 19-23. doi:10.1097/SAP.0b013e318221b578

    Niddam, J., Bosc, R., Lange, F., Chader, H., Hersant, B., Bigorie, V., . . . Meningaud, J. P. (2014). DIEP flap for breast reconstruction: retrospective evaluation of patient satisfaction on abdominal results. J Plast Reconstr Aesthet Surg, 67(6), 789-796. doi:10.1016/j.bjps.2014.02.008

    Serletti, J. M., Fosnot, J., Nelson, J. A., Disa, J. J., & Bucky, L. P. (2011). Breast reconstruction after breast cancer. Plast Reconstr Surg, 127(6), 124e-135e. doi:10.1097/PRS.0b013e318213a2e6

    Yueh, J. H., Slavin, S. A., Adesiyun, T., Nyame, T. T., Gautam, S., Morris, D. J., . . . Lee, B. T. (2010). Patient satisfaction in postmastectomy breast reconstruction: a comparative evaluation of DIEP, TRAM, latissimus flap, and implant techniques. Plast Reconstr Surg, 125(6), 1585-1595. doi:10.1097/PRS.0b013e3181cb6351

    Zhong, T., Fernandes, K. A., Saskin, R., Sutradhar, R., Platt, J., Beber, B. A., . . . Baxter, N. N. (2014). Barriers to immediate breast reconstruction in the Canadian universal health care system. J Clin Oncol, 32(20), 2133-2141. doi:10.1200/JCO.2013.53.0774

    Zhong, T., McCarthy, C., Min, S., Zhang, J., Beber, B., Pusic, A. L., & Hofer, S. O. (2012). Patient satisfaction and health-related quality of life after autologous tissue breast reconstruction: a prospective analysis of early postoperative outcomes. Cancer, 118(6), 1701-1709. doi:10.1002/cncr.26417

  • 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 …

  • My Buddha Belly

    It may sound dumb but one of my biggest worries about not getting reconstruction is that I’ll look funny. I’ll have a flat chest but a buddha belly. I’m more scared about the buddha belly than I am about the flat chest.

    I know my choice for surgery. I know I ‘want’ a double-mastectomy. Want is such an odd word here – need might be more appropriate. I know I do NOT want to be hacked up and left oddly deformed, which is what a breast sparing lumpectomy would do. I also know that I do not want radiation. My skin is so very sensitive, that the idea of radiation burns freaks me out. So, for me, the best option is the double-mastectomy.

    I also know that I do not want to go through 2-3 years of additional surgeries. When you are first diagnosed with breast cancer, the surgeon presents you with one bit of “good news”. That “good news” is that insurance is required to cover reconstruction. What they don’t tell you is that reconstruction is not easy. You are not reconstructing healthy breasts. It isn’t a simple “boob job”. Reconstruction happens after they remove parts (or all) of your breasts, and then use radiation treatments to make sure that the cancer is gone. So they begin reconstruction with less than ideal material – you are not starting with healthy breasts, you are starting with damaged breasts. The reconstruction process can (and usually does) involve several additional surgeries, all done under general anesthetic. Each brings in new risks of infection and complications.

    Maybe, if I had a small mass in one breast, I might opt for a simple cosmetic surgery that in essence evens out my breasts – maybe. But I don’t have that option. I have two areas of cancer in my left breast, one rather large … which doesn’t leave much to work with. Plus I have cancer in the right breast. So radiation would mean radiation on both sides – a double whammy.

    So, for me, the best possible outcome is a single surgery – double-mastectomy with nice clean matching / symmetric scars. No extra lumps and bumps, but nice and flat.

    That much I know. But what scares me is the buddha belly. I have a great body image right now. I’m happy with how I look. I’m pretty sure I’ll still be happy without breasts (they are trying to kill me after all). But the belly … now that might be the challenge. I will need a new identity – perhaps after BCBecky  (Breast Cancer Becky) I will become BBBecky (Buddha Belly Becky).  Maybe if I can find some pride in that identity, I can be happy with my new body image. [i’m laughing through my tears as i write this].

    What also scars me is metastasis. So far, all signs are that I do not have node involvement. We won’t know until after surgery. The first line of treatment for node involvement is chemo – which I’m already doing. The second line is radiation. So, if surgery finds node involvement, I may need radiation (ugh). Once that is determine, we then start to look beyond the breasts for spread. Women can live for years with metastatic disease (like 10 years). Metastatic disease is often treated with chemo that is designed to slow the spread of the disease, but the quality of life with sustaining chemo scars me. Chemo is hard. I can do it now, because I have hope that it means that when I’m done with chemo and surgery that the disease will be gone. I watch other women live with metastatic disease and go through chemo so that they can live a little longer, mostly to watch their children grow up. For them, the pain, the yuckiness of chemo is worth it. I don’t think I could do that. For the first time in my life, I truly appreciate what quality of life means. I cannot see making myself feel awful (chemo) just to live longer feeling awful the whole time. I do not have kids, I do not have a reason to want to hold on. And I could not bare to have Scott see me suffer for years just to live an unhappy life. Now, this isn’t something I need to worry about now. My prognosis doesn’t look like that … from all signs I do not have metastatic disease, but these are thoughts that I do have … and I promised myself when I started this blog that I would write these thoughts and share them, regardless of how difficult they might be read or write.

    So, here is to living a long healthy life as Buddha Belly Becky … whoever that may be!

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