Health Advocate Update

A little over a month back, I blogged about a health scare and being your own best health advocate.  Fortunately I was able to update everyone that the initial biopsies came back cancer free.  That is still true today, however, after going forward with an additional biopsy at the recommendation of my doctor, I did get a final diagnosis of Atypical Ductal Hyperplasia (ADH), which is considered a pre-cancerous stage of abnormality.  I was very much overwhelmed with that diagnosis and kind of buried my head in the sand this past month.  My Dr. recommended that the lumps be excised (basically a lumpectomy) with the goal of making sure there was no cancer hidden within the lumps that the biopsies somehow missed.  I went ahead and scheduled the surgery but also kept my follow up appointment to give me a month to process the information and allow me an opportunity to discuss any follow up questions I had.  That appointment was yesterday and here is where I am at today:

ADH is not a cancer diagnosis, which I am so very Thankful for that.  However, this diagnosis has now increased my lifetime risk of developing breast cancer to 43%!  A statistic that my Dr. also gave me today and the reasoning for wanting to excise said lumps was scary - of 100 lumps initially diagnosed as ADH and removed, 23 of them come back with a final biopsy of being cancerous.  So again, while this is not a cancer diagnosis now, he is basically saying that there is still approximately a 23% chance that it very well could be.  The biopsies only take such a small tissue sample that until the lumps are removed and fully biopsied, there is that chance that the biopsies could have missed a cancerous portion of the lump.  I am dealing with two lumps, one is the size of a golf ball and the other is a size of an almond.  Until he actually performs the excision, he can not say for sure how much of the tissue he will actually have to remove, but at a minimum it will be at least the lump sizes.  He also cannot tell me what the final result will be aesthetically, but that is a significant amount of tissue that will be removed.  In addition, the excision does not reduce my lifetime risk at all, so I will still be looking at alternating mammograms and MRIs every six months, and that is best case scenario if no cancer is detected.  I'd also be looking at the possibility of going on an estrogen blocking pill, which comes with its own set of issues and side effects.  My Dr. was very upfront with me and told me that it's not an easy diagnosis - it's not as clear cut as if it did come back completely negative or on the other side positive for cancer.  This leaves me with having to make some tough decisions with potential regrets down the road.  I could opt to wait and see (which he stressed over and over was not a wise decision) and it ends up being cancer and then I'm looking at more aggressive treatment, etc.  I could move forward with the excision, it ends up not being cancerous, but then I'm left with regrets from a self-image stand point - which I hate to admit, but it is a consideration I am working through as well.  And at the end of the day, I'm still left with a high risk factor and a lifetime of monitoring, with a 43% chance I will get breast cancer at some point.

A third option that we discussed, which is a little more radical and not the typical solution for this diagnosis, is moving forward with a double mastectomy and reconstruction.  Not only would this significantly reduce my lifetime risk, but it would eliminate the need for mammograms and MRIs every 6 months too.  Obviously, that comes with it's own considerations, it's a major surgery with a longer recovery time than the lump excision, which will clearly be more painful.  But that whole lifetime risk factor and constant monitoring, which makes me feel like it's a matter of when not if I will develop breast cancer, has me really considering this as a viable option.

I can not stress enough how amazing my Dr. is, he spent 40 minutes with me today discussing my options, listening and taking my concerns very seriously, and giving me tissues as I bawled my eyes out.  There is a part of me that knows that this situation could be so much worse, I could have never asked for a referral, I could have never discovered these lumps until they were at a more serious cancer stage, and I could be looking at more aggressive treatment such as radiation and chemotherapy in addition to surgery.  For that I am very blessed, but it still doesn't make my decision any easier.  Luckily my Dr. wants me to get a 2nd opinion to help me process my situation, not something I even felt was necessary because of how thorough he is and how much I trust him, but I was very impressed that he basically put his foot down and said that I needed to do this for my own peace of mind.  I also will be meeting with the plastic surgeon to discuss the mastectomy route.  He was adamant that I take the next few months to collect as much information as possible so I can make the best long term decision for myself.  He is not pressuring me one way or the other, although the wait and see approach is definitely off the table and not something he wanted me to even consider, which I agree with 100%.  

I pray that I can find the courage to make the right decision for myself.  I pray that I can move forward without any regrets.  I pray that whatever decision I make and whichever surgery I opt for is made with the best possible information and knowledge available.  I pray for a strong support system as I weigh through the pros and cons of each option.  I pray for the very best outcome possible!  Thank you to each and every one of you who are praying right along with me and please do not hesitate to reach out if you or someone you know is experiencing or has experienced a similar situation, have gone through these same decisions, or just have any questions!  While this blog is a therapeutic outlet for myself, I also really hope it can help anyone out there who is struggling with this too!