Bilateral / Prophylactic Mastectomy in Public System

I really appreciate you taking the time to contact me and share your insight. The BCNA site has been my "go-to" since being diagnosed (which happened via a phone call from the Cairns Breast Screen Doctor on a Friday -with a very loooong weekend of many questions and no answers following) .. and I have scoured it's pages and blogs many times over. In fact, I had already read the "Five things I wish someone had told me about a double mastectomy" only yesterday - and appreciated the candid responses.

I am most grateful for your sharing of the fact that "the decision is not determined by the system, but by the patient and the surgeon" .... this is what I had very much hoped would be the case ... that there would not be a catagorical "no" served to me - but that my reasoning, understanding, evaluating and personal circumstances would all play a role in the selection of the best option.

Before my diagnosis was officially confirmed (by core biopsy) I spent hours and days being tested; going from mammogram to ultrasound and back to mammogram again because my dense breast tissue just could not visualise the tumour in its entirely via ultrasound, for the biopsy to be done. There was never any ducking into the clinic to have this or that done, to save my family from unnecessary worry ... no, I would have to close my business (and the farm gate) and organise someone to attend to my children's school pick up and drop off (no public transport up here) and travel down to the "city" for each and every procedure - only to return at day's end with a cloud of uncertainty looming overhead. Yes, it was all very necessary AND it was all felt by each member of my family - we were all aware, right from the outset, that "something was wrong with mum". 

It was at this time, that it was gently implied to me that the outcome was "concerning" and the "c" word spoken for the very first time. So, we (my husband and I) have had a good deal of time to "visit" each surgical and medical option - and this is why we feel so very strongly that the bilateral mastectomy is the right surgery for me, for us as a couple, and for our family.

As for reconstruction - that is something I do not feel the need to rush into .... instead I would willingly grace the healing with time and adjustment ... and peace of mind.

Thank you again Louise xx

Hi Sue,

You are making some difficult decisions. I went with a bilateral for reasons similar to what you have said. It is a harsh reality though willingly removing a breast and forever losing the natural sensation. I have found that a huge loss, not regretting what I have done, but more a deep sadness. We are all different but I thought it was worth mentioning. I also wanted the whole ordeal over quickly as possible, I had my mast/recon April 2013 and am still not quite finished. So it can be a long process depending what you do.

I went public, you can read my story by clicking my name and scroll down to earlier stories. The decision really is made not determined by the system, but by you and your surgeon.

You might also find this blog topic useful where members are discussing prophylactic options, there is a fair bit of talk in the recon group about this topic so if you need more directions just ask.

 http://www.bcna.org.au/node/61026/blog/tag/prophylactic%20mastectomy

Like you I also had large breasts so was very happy to go with immediate reconstruction. If you are interested in recon you might be a candidate too (if yes this may impact your decision to do one or both breasts) but you might need to ask for this if it isnt offered at your appointment. There are lots of considerations, there is a list of 'questions to ask' also in the recon group that might be helpful.

If you are thinking to go with reconstruction and public, if you choose a delayed procedure (not at the time of mastectomy) you may be without 1 or both breasts for a few years waiting for recon. So that might also contribute to your decision. Some people are fine with that, I wasnt.

I hope I havent confused you, just shout if I can help further.

All the best, Louise XXX

Many thanks for your support with understanding my 'plan of attack'. How are you feeling - 4 weeks post-op ? Do you have much mobility in your arms at this point ? Did you have your surgery publicly or privately ?

Hi Sue

I had a very similar diagnosis to yours. I knew straight up that I wanted both off. I know you understand the low chance of the other breast getting cancer and I did too but I still wanted both off to avoid future worry of mammograms but also simply for symmetry in reconstruction. I had my bilateral mastectomy 4 weeks ago.Have started the recon process. I'm really pleased with my decision. Still, everyone really needs to make their own decisions. You have the added issue of distance to consider too of course. Anyway, please feel free to ask me any questions if you go down a similar path to me. I know that I found it really helpful coming here and seeking out people who were a few steps ahead of me.

All the best.

Sonya

Thanks Robyn and Michelle for your insight, comments and support. Yes, I have always understood that the cancer cannot spread to the other breast, however, the focal areas of LCIS that I have, is indicative of an increase risk of developing breast cancer in BOTH breasts. I am hopeful of not needing Chemo, as I am Oestrogen and Progestrone Hormone Receptor Positive.

As we know, every diagnosis is different, as each patient has varying circumstances that must be considered (since we are not just dealing with treating the condition, but also the patient).... for us- it is the fact that we have a young family + live such a distance from the hospital (travelling 1.5 hours each way for frequent follow up appts) + my husband works away (so getting time off work once for recovery would be easier) + we have a farm and run 2 businesses (so the impact there is considerable, as I am self-employed) + we have no family support up here in FNQ (closest family live in SEQ and overseas).  We will most definitely discuss all options with the surgeon with the aim to find the best one that "fits" my diagnosis, our family and the psychological impacts for all.

Many thanks again for taking the time to share your thoughts.