looking for help and guidance on next step

Laura · 11-20-2006, 03:02 PM

I am hoping you all will not only offer some help but also give me some hope. I was diagnosed 03/06 with stage iv er-/pr- her2+++ mets to the bone (about 5 locations). I went through 4 cycles (each cycle being 3 weeks on/1 week off) of Taxol/Carbo/Herceptin. After the first month, the breast mass was no longer palpable. At my 4 month follow up scan in August, all of my bone lesions were healed, there was no further disease. I was told that I had a complete response. Such great news. I was so happy. In September, I noticed some breast changes. My breast continued to get harder and although I knew in my heart that the cancer had returned, I denied it and assumed it was post chemo changes. We watched it with MRIs and ultrasounds, there was not a specific mass to biopsy but a large diffused area. I had another CT scan on Nov 4. It showed the bone lesions still only healed, no progression, some skin thickening in the breast and a small 2 mm nodule on my lung (another thing that I am freaked out about). My oncologists and I agreed that bilateral mastectomies would at least help me emotionally, by not having to continue the huge number of tests. The pathology came back today. There was a large approx 9 cm tumor removed, clear margins. I am devastated. I had so hoped that it was fibroids or something else benign. How could it come back so fast and so big? What do I do now? What are my options? Has Herceptin already failed? I am so sad and scared. I need more time with my children and husband and family. Any advice would be greatly appreciated.

Laura
diagnosed stage iv 3/06
mets to bone
T/C/H 4/06-8/06
complete remission
continue Herceptin every 3 weeks
11/06 bilateral mastecomy
?????

Sheila · 11-20-2006, 03:49 PM

Laura
It sounds like bilateral mastectomy is in order...there are many of us Stage IV women here...you will get many answers, love and support...there is always someone who is in the same boat, or has taken the ride!. I have been stage IV for 3 1/2 years,,,still looking forward!

doh2pa · 11-20-2006, 05:17 PM

Hi Laura,

First of all, you are at the beginning of your fight, not anywhere near the end. I know it's scary - I had liver mets that responded well to the carbo/tax/herc combo and I had a complete remission. However, my mets came back within 4 months. So it's aggressive - I get it - but we can be too.
I also thought that I would have been considered "failed" on herceptin, but my onc kept me on it and added a different chemo because it is felt that the herceptin has synergestic effects with many different chemos. And so it begins again. Try to think of it as a chronic disease, we will try different regimens, some will work, others won't but there are LOTS of treatment options out there and better therapies are on the way.

So try to breathe! Hug your kids, kiss your husband, have your pity party (you deserve it) then pick yourself up and start the fight again, sister! You know you can do it!

Sending good thoughts your way,
Donna

jhandley · 11-21-2006, 04:58 AM

Hi Laura
I would bet a lot of money that your tumour was there for a long time but not detected by mammo/ultrasound etc. My second tumour in the breast I am sure was there all along just small and not detected at the time of removing the first 2 cm lump. Despite scans and ultrasounds my second tumour was only detected by core biopsy and it was 4 cm x 2 cm...I asked "how can I grow something this big and it not show up?" silence from onc..
real Answer= dense breasts/fibrocystic disease = scans can't tell what is going on..
I wish I had had the breast off the first time..which is what I wanted! Then just maybe I wouldnt have had a liver spot 2nd time and become stage IV.

Anyway we live and learn..keep fighting.
Jackie

rinaina · 11-21-2006, 12:04 PM

Of course you are scared and who wouldn't be but keep reading on here. There are so many Stage IV women who are doing okay and you will too. Just don't give up the fight. I know it is easy for me to say but heaven forbid this should happen to me, and we all know it can, I will battle it with everything I have and then some. You must make sure the onc is doing everything he should and so that means research and network with everyone here. Good luck.