As many of you know we went back to Hamilton on Friday to follow-up with the surgeon and receive results of the pathology from my surgery. Overall, I am happy to say that we received mostly positive news...there was however one surprise that we weren’t really expecting or prepared for.
Based upon the lumpectomy we found out that the invasive cancer was small and measured 8mm, it is estrogen and progesterone receptor positive and Her-2 negative. With regards to the sentinel node biopsy I had 7 lymph nodes removed and thankfully all of them were free of any indication that the invasive cancer had spread beyond my breast. The invasive cancer was deemed to be a stage 1, grade 2 tumour. Overall, all of this information really could not have been more positive.
Now...onto the surprise. There was a little concern prior to my surgery that this was the only ‘nodule’ I had. I owe a huge credit to my surgeon who recognized that there was some tissue that was a slightly different ‘texture’ around the invasive cancer and as a result she removed all of this to be sure. It turns out that this tissue was ductal carcinoma in situ (also known as DCIS, and some people refer to this as a pre-cancer). The DCIS was large measuring 6.5cm – I suppose this is what we are most shocked about.
There are 2 different types of DCIS, some will remain in situ for years and may never progress to invasive disease. The second type has slightly different pathological features which make it more likely to progress to invasive disease...it would seem that the DCIS removed from my breast was the latter. Based upon this and several other factors (namely my age, the size of the DCIS removed and the fact that the surgeon didn’t get adequate ‘clear margins’ around the DCIS) there is a very high probability that I would experience a local recurrence of cancer (either DCIS or invasive cancer) in my breasts at some point in the future. It has therefore been recommended that I have further (and fairly drastic) surgery in order to prevent this. At some point in the coming months it is likely that I will be having a prophylactic bilateral mastectomy with immediate reconstructive surgery. This may come as a shock to many but I can tell you that this is already something that I had been considering. It is also something that would be recommended anyway if the genetic screening that I had done a few weeks ago indicates that I am a carrier of the BRCA1 or BRCA2 gene mutation.
Some of you also may know that over the past year and a half, I have had a nagging feeling that something wasn’t right, clearly it turns out that my gut instinct was right. Over this time, I saw 4 or 5 different doctors at various times and was repeatedly told that 'I worry too much', 'there is nothing to be worried about' and 'there is nothing worrisome about this' etc etc – sadly, I could go on! While I know that this isn’t the time look back or worry about what could have been done differently, (and as a health professional I hate to admit this) but this whole experience has really reminded me that we know our bodies better than anyone and that in today’s health care climate we really need to be our own best advocate when it comes to our health - even if this means asking for second opinions or not taking no for an answer.
So...moving forward from here. We are awaiting an appointment with a medical oncologist to discuss further adjunctive treatments. Both of the doctors we saw yesterday felt that at this point it is not likely that chemotherapy would be a strong recommendation for me but it is definitely not off of the table at this point. We will also have an appointment with a plastic surgeon and the surgical oncologist to discuss my further surgery. The exact timing of my next surgery will depend in part on whether or not I end up needing to have chemotherapy.
This has been one crazy journey so far and I am learning that with every answer many more questions arise. I am also not ruling out that there won’t be other ‘surprises’ waiting for me down the road. In the meantime, we are just taking each day as it comes and trying to focus on the positive. We are also trying to remember how important it is not to take each day, our health or each other for granted – life as we know it sure can change quickly!
Over the past 6 weeks I am pretty sure that I have experienced every emotion imaginable and I cannot tell you how much I appreciate all of the support that I have received from all of you. Despite not necessarily having been able to connect with all of you directly, knowing that I have such amazing family and friends fighting this fight alongside me has made it so much easier to face each day and all of the uncertainty that we are dealing with. I really cannot thank you all enough for everything.
We will definitely keep in touch regarding next steps.
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