BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Tag: options

  • Advocating for Oneself

    Advocating for Oneself

    Living in the US, I learned to advocate for my own healthcare. Support groups helped me know what questions to ask. They helped me when I had odd symptoms and couldn’t reach my doctor. They helped me know what was normal and what needed urgent attention. 

    In Canada, I don’t have the same level of contact with a support group, but I have found one. When I moved here, searched for one. I wanted to stay connected in some way in case I needed it. The group I found is focused on an annual retreat; however, it gives me a place to ask questions and find out what care is available in the city, as I now live in a small town.

    I’ve been having an issue with unexplained swelling, for a year now! We have ruled out cancer and heart problems. The only explanation I have is lymphedema. However, the only lymphedema care we have locally is for manual lymphatic drainage, a special type of massage. The challenge is that I have swelling in multiple places, so it is unclear where the massage therapist should be directing fluid for best effect. Also some kind of compression garment is needed to help prevent it from re-swelling after the treatment. The place where you go to buy the specialized compression needs specific directions (a prescription) on what is required. So, I need to see a specialist. That is where the challenge lies. 

    No amount of Google searching was helping me find the right specialist. I asked the support group. It didn’t take long. I had several people make suggestions. Within a couple of hours, I had a name and phone number. 

    I called, and the receptionist gave me the information I needed. She told me who I needed to be referred to and the fax number for the referral (yes we still use fax referrals here). My next step is to go to my family doctor (I’m lucky to have one, if I didn’t I’d need to access virtual care) and have him send in the referral. 

    I’m fortunate that I learned to advocate for myself. I am fortunate to have a family doctor, but he is not a panacea. He doesn’t know all the obscure ins-and-outs of cancer care in this province. Sometimes tapping in to the patient network is the fasted way to get care. 

  • Survivorship plans

    Survivorship plans

    There is a theory that at some point after active treatment you have an appointment to review a survivorship plan. That is, what do you need to know and do once active treatment is over? How do you manage your health issues post treatment?

    I went to that appointment, but didn’t get much out of it. In part, I pushed for the appointment too early. I think now, at two years, I’m finally ready to start thinking about survivorship. I am not so much in “active recovery”, as I am in trying to figure out how to be a healthy person again.

    One of the challenges I’m navigating now is that I get healthcare from two different organizations (Stanford and PAMF). My medical records are consolidated through Care Everywhere – this means that my medications lists are cross posted and any blood tests and such also get cross posted, but detailed notes of procedures are more challenging. I often need to tell the doctors about my recent medical history.

    I’m struggling with when I should be seeing primary care and when I should be seeing specialists. I have a bunch of specialists – both at Stanford and at PAMF. Some of them were temporary specialists, in that I only saw them once or twice and there is no plan for continuing care from them; however, they may have prescribed something, so I am coming up with needing renewals of prescriptions and have no clue which doctor I should be talking to. Fortunately, many of things my primary care doc is happy to take over management. So, I’m starting to consolidate, and I’m starting to reduce the number of specialists I’m seeing. I am also choosing to trust that my primary care doc will send me to the specialists when things are out of scope for her.

    Through all of this, I’ve learned to pass on the specialists I don’t like, and keep the ones I do. I’m still scared that I’ll miss something – that this symptom or that will mean more than it does – but I’m trying to find that trust in my body again. I’m trying to figure out how I can be ‘healthy’ again.

    I also want to highlight that because of my surgical choice, and the fact that I don’t have hereditary cancer, my follow up appointments with oncology don’t generally involve additional scans. If I don’t have symptoms, then I don’t have scans. All of the scans I’ve had post-treatment have been brought on by symptoms, and all have come out negative for cancer – but they took a toll on me mentally. Each time, I had to deal with fear. I’m getting better at not completely overreacting, but I’m still finding myself overly stressed until I can get the scan over with. I look back and think that I put myself through horrible scans (the latest being a colonoscopy), and they turned up negative. I am really just sick of scans and tests. I need to step back and work towards a reduction of medical appointments. I remember pledging to try to schedule embargos on doctors appointments, and yet I have failed to follow through with that. I do manage to avoid appointments over my two week holidays, but I haven’t managed to successfully book an appointment embargo for a time when I am in town. I need to get them back into my calendar, and I need to learn to stick to it!

    Feature image CC0 via Pixabay

  • 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!

  • 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.

  • Breast surgery

    I am coming to appreciate the roles of the different surgeons. I have not yet met with a plastic surgeon (PS), but will probably set that appointment up in the next few weeks just to get the conversation started. With breast cancer in the US, you are usually dealing with at least two surgeries. The first surgery is done by the breast surgeon (BS). This surgeon specializes in removing the cancer. You can have either a mastectomy (where they remove the entire breast) or a lumpectomy (where they just remove the cancer). That is an overly simplified explanation – as both surgeries depend on what you plan to do after – that is the reconstruction or no reconstruction. The two surgeons work together to help give you the look you want post-surgery. Some of the choices your breast surgeon makes depends directly on what you want the final outcome to be.

    So, it occurs to me after looking at several pictures of not too nice results post mastectomy/lumpectomy surgery, that I want a plastic surgeon that has experience doing trans female-male top surgery. You see, if the plastic surgeon knows how to do trans surgery well, then they would appreciate the importance of appearance. And if they have experience with female-male trans surgery then they would get what it means to be flat. I’m surprise to realize that appearance matters to me. I want to look good naked … I’m OK with being flat – not having breasts – so I don’t think reconstruction makes sense for me (at least that is my current thinking) – but I do want to look good naked. I want to be able to look at myself in the mirror and be proud of what I see (rather than sad). I’ve been warned never to look down … the downward view of your breasts is the view the only you see, and it will never be the same … everyone else sees the outward view!

    One thing that I find very interesting in this process is that I have a greatly improved body image. I would not have expected that result. I’m a lot less vain now – and a lot less worried about my other lumps and bumps – but I do want to be able to go topless. I don’t want to have to feel like I need to cover up because I have odd disfigured lumps and bumps where my breasts used to be.

    I’m reminded of my early days when one breast started growing before the other (midway through grade six if I recall correctly). I found myself wearing training bras because I did not want to look lopsided – I always used one of the stalls to change in PE class, cause I didn’t want the other girls to notice that I was lopsided. Now, I find myself wanting to be the poster child for women with mastectomy who choose not to reconstruct – I want to model swim suits for real women. A few months ago, I supported a Kickstarter campaign for Nettle’s Tale swimwear. I bought a swimsuit but never got around to sending them my sizing information (couldn’t find the measuring tape in my Ottawa apartment). After diagnose I reached out to the folks at Nettles Tale as I cannot give measurements now and I’m also not sure whether the suit I picked will work!  I threw out the idea to the folks at Nettle’s Tale swimwear of modeling for them as they are hoping to come out with a new line of swimsuits that support prosthetic boobs. They were excited about the idea, but of course nothing is planned yet (I don’t live in Vancouver, which poses a challenge, but also it will be a year before I’d be ready anyways) – but I thought I’d share that I am serious when I say that I want to be a swimsuit model when this is all done!

    I learned a new word the other day – foobs – which is short for fake boobs. I had heard falsies before, but foobs was new to me. Today I learned that the best place to buy a variety of foobs is eBay. Buying new can be rather expensive (eventually I’ll need to see what my insurance will cover). Since both the breast cancer and the trans community use them, there is a market for lightly used foobs. You learn something new every day!

  • 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.

     

  • 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.

  • Knowing what to expect

    “In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

    As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

    Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

    The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

    Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

    After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

    Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

    The two options look something like this:

    • option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
    • option 2:  docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC

    They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

    After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.

    Photo Jun 23, 12 39 23 PM Photo Jun 23, 12 36 07 PM Photo Jun 23, 12 36 49 PM

     

  • “Wow! I hope you get it out of you soon!”

    A friend said to me “Wow! I hope you get it out of you soon!”

    Honestly, before I had breast cancer, I always thought that if I had cancer, that would be my reaction – just get it out of me. I find it very interesting that it is very much NOT my reaction. The decision to ‘just get it out’ is so much more complicated then I ever thought it was. There are options, and with each option comes different treatments and side effects – and I’m still waiting. If the HER2 FISH test comes in positive for HER2/neu then the decision become easier. There is a drug that has been proven to be quite effective for HER2/neu cancers that can only be given pre-surgery – so neoadjuvant (http://www.perjeta.com/patient/neoadjuvant), which just means ‘before in addition’.

    One of the hopes of any neoadjuvant treatment is that it also causes the tumor to shrink. If the tumor shrinks then the surgery can be less invasive.  The other advantage to chemo first is that I would know my genetic test results before going into surgery. If it turns out that I do have the breast cancer gene (or one of them), then the decision for a double mastectomy makes more sense than doing a lumpectomy and having to do additional screening/tests every 6 months (reoccurrence rates goes to like 80% if you have gene).

    So the feeling isn’t so much ‘get it out soon’, it is more about how am I going to get it out, and  just who scary the surgery itself is. How will I feel when I wake up.

    Man I’m looking forward to experiencing some good drugs during this process. There must be a positive side to things, and good pain meds might be it! Today, I’m hoping to get a total non-medication high – sailing upwind at high speeds on a giant sailboat. When you see it sailing in the harbour it sticks out because it is on such a different scale than the other sloops in the harbour. If we are dry, we shall take lots of photos!

     

     

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