Emotional Impact of a Second Bilateral Primary Breast Cancer

bgirl

Find I am really struggling at the moment with anxiety and feeling overwhelmed.

Just shortly after I had an appointment with my Gyn at the end of January I found a lump under my left arm. This was on the opposite side to my original BC and I had a breast exam at this apt and a mammogram and breast exam in September. I thought it was maybe a cyst. It seemed to disappear when I raised my arm and thought maybe I was imagining it at first (or maybe it was denial). A month later I realized it was getting bigger and could feel it clearly with my arm down. Took a week to get into my family Dr. office as she was in the process of retiring and had a locum in. Got a referral for an US next day. Took another week to pry results out, must come in, obviously not good. Thankfully secretaries who know me knew I had seen my surgeon in September and called her office for guidance and got me in at the Breast assessment centre for another US on the Monday there and a mammogram. On the way out they handed me a copy of the first US results "highly suspicious for metastatic lymphadenopathy" Definitely a WTF moment. Mets from other side, new BC, wild card like lymphoma. Thus started almost 2 months of ruling out mets and trying to find the tumour after a biopsy of the node revealed it was IDC although the mammo was negative. Finally found a 6mm tumour in other breast close to nipple. As soon as confirmation of biopsy, I was in surgery in six days. Lumpectomy and full ALND. By then the node had grown from 2.5 cm to 3 cm with extra-capsular extension. Only one other node had stray cells, but surgeon said texture and size were not normal with any of them. Cancer looked aggressive.

First time I was diagnosed was October of 2011. Premenopausal, 5mm tumour in right breast. Grade 2, ER+ PR+ HER2- Oncotype Score of 18. So no chemo, radiation and 5 years of tamoxifen should be good. 11% chance of recurrence. Finished tamoxifen in January of 2016, have a nice life, get yearly mammos and exams. SO, how did I get here!!!

After recovery from surgery started DD AC-T and Herceptin. It hasn't been easy, some heart issues with the A chemo which have resolved somewhat on the Taxol thankfully. But feel like I have just been trying to survive and get through to the other side. As I've been getting closer to the end I think my brain is starting to go from survival mode to having more time to think. Added to the anniversary of my first diagnosis 7 years ago October 27th and questions about what it means to be a "survivor" who has breast cancer. The joy of Pinktober as a constant reminder. Questions about bilateral BC and the possibility of some genetic component related to that and what it means for my 3 daughters. Having a much more aggressive pathology this time. Not really being given any real ideas about survivorship this time as more complicated diagnosis - although pretty conflicted about statistics a the moment anyway. Having a hard time buying into the "everything will be fine".

Everyone thinks the 2nd time is easier. "You know what to expect" - Not this! and not really. Much more aggressive and complex treatment this time. I think those that offered empty platitudes of help the first time are very absent this time. Has been even more isolating than the first time. I could go to the newly diagnosed support group at our local cancer support centre, but I would only be expected to talk about my current cancer/treatment. Watching everything I said sounded exhausting and I'm not in the same mental place and I genuinely don't want to freak out the newbies, so it really didn't seem like an option.

Finishing last week of chemo so onward to 30 radiation and Herceptin every 3 weeks until August 2019. Feeling alone, overwhelmed and exhausted mentally and physically right now. Know there aren't that many in the same circumstances (only about 3% get metachronous bilateral BC), but thanks to anyone who has listened to my story/rant.

5graces

Yes, I too found my second bc diagnosis to be much harder emotionally. Everyone thinks it should be better second time around.....but not so. My bc treatment was harder, too, but I attribute a lot of that to my age...I'm 71. But you are strong and it does get better. It sounds like you have a wonderful bc team to help you and that is worth so much. I didn't have that as all of the mo's at my clinic got fired and they had to move out of the building and change hospitals and all that just added to my stress level, but that's another story. I don't know what I would have done without these boards! The ladies here are wonderful!! You are not alone! So very sorry you have to go through this all again....but you can do it!

bgirl

5graces

Thank you. Really feel like I needed to vent somewhere. Was 46 the first time and 53 this time (although still pre-meno). So sorry about the MO thing. I was lucky to get my previous MO and RO back. Although I do understand the stress even a small change can make, some things with my treatment and getting bumped at chemo and having 2 do 2 weeklies 5 days apart, etc. in the last couple of weeks has made me feel way less in control. I can only imagine having everything shaken up in what is shocking circumstances. Hoping as I feel better physically that I can make some peace with the future. My RO has scheduled my planning apt. for next week, so hopefully I can have the 3 weeks between my Herceptin infusions as a break before starting radiation. Have been there at least 2 days a week right now and maybe the break will do me good.

5graces

bgirl, I found my radiation treatments much more tolerable than the rest of my treatment was. I had a much better RO than I had MO! In fact, looking back I think I should have switched mo's right at the first when all the problems were beginning. In fact...I KNOW I should have. There were several instances of mo forgetting to schedule my appts. And even chemo appt.! All of this stress has been terrible......as if a second bc diagnosis wasn't enough!!

KBeee

The second time around is much, much more challenging emotionally. Once the "other shoe has dropped", you know it can come back, and it makes it much more challenging. One day at a time is my mantra.