Why such an excessive way to get tissue and what now?

Imagine

I had my VATS on the 6th of December and am now home recovering. This surgery seems so extreme just to get tissue for pathology. I am so disappointed I am crying and cannot stop. My surgeon said the largest mass that was on the right side outside of the epicardium, they said it was on the epicardium fat pad and there was nerves too close to remove safely. The surgeon did say she got the pleura nodules and some areas on chest wall. They send tissue intrasurgical to the lab and it is confirmed to be cancer. Do not have all the genomic and subtypes back yet from pathology. This surgery is the worst I have every had, I wish they could have gotten this tissue another way less invasive. I am ill having a pity party today, I have gone thru all of this and still am stage 4 and my life is cut short. Have no idea of treatments, if they will be effective and what side effects I will have. So now I'm also left with just where are the mets, it seems it is in chest wall area when i asked my surgeon she just said it is a thorastic Metastases all on the right side. I can not find anything on these forums that talks about what i have. Feeling very alone and depressedabout what i have.

exbrnxgrl

Hi imagine,

I am so sorry to hear of your progression. I don't remember, offhand, if other members have had similar type mets as those you describe. Hopefully, someone in a similar situation will see this. Until then, please keep us posted as you learn more and know that someone is always here. Take care

ETA: Here is a link to a thread on cardiac mets. You may find some similar experiences there.

https://community.breastcancer.org/forum/8/topics/863373?page=1#post_5468340

Imagine

I asked my surgeon about heart mets and that is not what I have it is below the pericardium in a fat pad, she said she sees it all the time with chest mets and lung and pleura mets. She assured me it would not effect my heart. So I see my ONC on Tuesday to see what the treatments will be, I am still high ER+ greater than 90% but only weakly PR+ 2%, HER2 - negative.

Anonymous

Hi Imagine, I am so sorry that you had to have such a painful surgical biopsy. I have recently discovered mets in lymph nodes under and above my left clavicle and in the mediastinal nodes which are under my breast bone. I had 2 biopsies on the nodes near my clavicle - first biopsy didn't get enough tissue. They did not biopsy the nodes in my mediastinal area because she said it's too hard to reach. Those nodes opened and there is tissue under them but not attached to anything that took up petscan tracer so it might be like the tissue pad you are describing. I am also 95% estrogen positive, progesterone positive (not sure of the progesterone percentage) and her2 negative. My original dx is like yours but 11/08 and i had a low risk of recurrence after my sugery, cmf chemo, radiation and 7 years of femara per my original onc who is retired. I am devastated.

I started Fulvestrant about a month ago and had almost immediate relief from the pressure the mediastinal nodes were putting on my windpipe (for months i have been telling my doctors I couldnt breathe deeply and struggled to breathe normally when lying down/sleeping).. I was told I had a virus. For months and I kept going in telling them it was not a virus (but sadly didn't think it was cancer!).

Hang in there - once I started treatment I felt so much better so I hope you do as well. Waiting on the biopsies, pet scans and the realities of what if are soo overwhelming. I was started on Fulvestrant and Ibrance and am almost a month in (get my 3rd fulvestrant injection this friday) and take my last Ibrance pill today with a week off starting tomorrow.

We are here for you!

Imagine

Thanks for the input. My ONC has prescribed exactly your regimen. I get my first fulestant injection on the 26th of Dec and I start the Ibrance pill that evening. So here goes....

Imagine

aprigirl1

I know how devastated you feel. I feel the same way. So many years out of our original DX and doing all the treatments etc and here it comes back to us years later. Sounds like your treatments will work well you! I’m glad I found you on this forum to give each other support! Take care!

Anonymous

Karen, I know how you feel. So far, I feel fine (haven't had a lot of side effects from either medication). I did fall and break my wrist which was just soooo disappointing. I am slowly finding my "new normal" and not thinking about this 24/7. I won't go on and on but so many of my future plans I am now rethinking.....Let's stay in touch as we are on the same regimen and I'm only a month ahead. Hang in there!