Been diagnosed with Secondaries while on Chemo

Mandamoo

I posted last week about radiation decisions as I was considered low risk, in the grey zone for recurrence.  I had decided to go ahead.  My situation has changed dramatically in that time frame.

I had a pre chemo appointment with my onc and showed her yet again the "red" spot on my L breast that had popped up since my first FEC.  Put down by her and my breast surgeon as a skin reaction or dodgy post op skin - it had started to grow.  She looked and agreed it needed a biopsy - surgeon still thought it benign.  ON Thursday night we have my surgeon in our living room telling us it is the cancer - the same Her2 positive cancer taken out of my breast. He booked me for a PET scan on Friday and the results have shown spots in my lungs and in my neck.  This has all grown while I have been on chemo!  (FEC*3 and Taxotere and Herceptin) - I have only had 2 of the herceptin so far but the FEC has obviously failed to arrest the disease.

My oncologist is trying to work out a treatment plan with colleagues.  I am being sent for genetic testing and there are some trials here (I'm in Australia).  We meet her Tuesday to work out an plan to arrest this thing.  I am so frightened for the first time on this journey.  I was so sure I had this beaten and all along it was still growing.

Can anyone offer any advice or information about treatment for Her2positive secondary cancer?

I will look more around the site - personal experiences would help too.  

I am 38, my children are 4,6 and 9 - they no nothing different yet - Mummy is sad because the Dr says she has to have more medicine and it make her a bit sick.  Away from them I can't stop crying and thinking.

Any words of advice would be greatly appreciated.

Amanda x 

CoolBreeze

I'm sorry.  I don't have any words for you.  I was diagnosed with mets only five months past my last herceptin.  It just grows fast in some of us, I guess.

My mets are in the liver, and my new treatment is navelbine, herceptin and zometa.  I'll get rescanned in two months to see the efficacy of that treatment.  I hope it shrinks it.

I hope you find a good treatment too.  I have a 14 year old and it's very hard to keep it away from him.  I am doing the best I can to make it normal.  I would suggest that you find an outlet to release emotions. I write my blog, but some people do art, some exercise.  Whatever you can do to release your nerves for your children's sake.

I have been reading here a long time and I do see lots of women who have lived many years with mets so I plan to be one of them and I hope you are too.