HER2+ borderline....

Hi KitcalNL I am so sorry to hear that the dragon you slayed 8.5 years ago has decided to resurrect itself!!!! I can't answer your query but someone will be along soon who can help but please remember this whilst the news is awful for you you have slain this dragon before and you will do it again keep strong and please keep in touch and let us know how you are getting on sending huge big hugs for you xxxx

Hey  

Sorry you've had to deal with this again. Welcome - you'll find we're pretty friendly, and sometimes a bit bonkers!!

Borderline HER2+

First question - have they retested?

Second question - are they saying borderline, or low amplification?

Mine was low amplification, and a bit weird because the initial biopsy results came back triple neg. Then the FNA on a lymph node was HER2+. I had chemo and Herceptin. However, my own research showed that low amplification does not respond well to Herceptin. My lovely oncologist listened, discussed and agreed I was correct. However, he said it was too risky not to have it. So, we agreed I would continue with the proviso that if I had any heart failure symptoms H would stop. I made 12 of the 18, and am now under a cardiologist. She thinks it's chemo related, not H, but all are agreed I had enough H.

I would not have escaped chemo anyway - 4cm in the breast and 1cm in the node, so even TN would have meant chemo.

So, the above 2 questions, as well as the size of the tumour and ER/PR status are all going to be factors in what treatment they decide on for you.

The "borderline HER2" ------ NICE I think says it needs a retest with a different test.

There's also the new wonder biological - pertuzumab to throw into the equation. Only offered before surgery. So the HER2 result needs to be clarified before that decision is made.

Now that I've probably made your head spin more than you wanted...................

A big hug?

xx

Hi toxophilite.

Thanks for your reply.

The biopsie was sent away to 2 labs and both came back with borderline HER2+. The first time i had cancer is was HER2+ positive and as cancer was in lymph nodes as well, i got the works.

This time, there are no nodes involved, cancer has not spread and seems to be pretty much contained - although it is grade 2 :-)

Thank for mentioning pertuzumab - i will look it up and see what i is being used for and mentioning low amplification. Hadn’t heard that before!

Good luck and thanks for the hugs. 

KitCat_NL

The HER2+ regime if chemo given before surgery is TCHP - Docetaxol, Carboplatin, Herceptin, Pertuzumab. The results being achieved are nothing short of astounding. Unfortunately I was 2 months too early to get it!!

You would most likely get TC chemo in any case, as I don't think they can give you Epirubicin or Cyclophosphamide again due to lifetime toxicity. 

Please keep us posted, so we can support you better. (And because I'm nosy, and want to add to my knowledge to help others!!)

Take care xx

Hi Karen

I was told incorrectly - the results of the HER2 tests from the second lab have not come back :-(.

I had docetaxol the last 4 times i had chemo (out of 8 sessions) to start with Herceptine.

I can only hope that my case is not a clear cut yes or no case and no chemo or herceptin is needed.

I m booked in for an operation next week - mastectomy (and later reconstruction) and breast reduction of non affected breast!! See, every cloud has a silver lining!!

Hope you’re well and healthy again.

Take care

Cat  

Hi Granny59

Thanks for your kind and lovely words.

The way I look at my cancer (first time round) is that it gave me the strength to do something i should have done a long time ago (but was too scared to do) and a new set of eyes!!!

No, it wasn’t brilliant, especially now that my veins are no good for needles anymore, but i took the good things with me and not the bad ones.

However, you are right - thanks for your words - i know i can get through this and support my body to overcome cancer and learn from it too.

I hope you have been able to take something positive from the treatment with you that could benefit the rest of your long and wonderful life.

Big hugs to you too

Cat

Hi Cat indeed I did take a lot of positives from.my journey but the biggest one is the decision to retire this year I had thought and thought about it and breast cancer helped me make the decision and now I can't wait xxxx

Hi Gail

Wonderful news!

Enjoy planning your retirement and all the things you want to do and see with the people you love!

Take care

Cat 

Dear KitCat,

I’m sorry to hear about your recent diagnosis and I wish you all the best with your forthcoming results. I was diagnosed with Stage two, IDC (October 2017) ER/PR positive and HER 2 positive over-expressed in 20% of BC (20% is low level amplification and the rest is non-amplified or borderline amplification according to FISH)

I had a lumpectomy in November to remove 23 mm tumour , margins clear and no nodes.

My treatment plan is EC- Docetaxel 6 cycles with Trastuzumab (Herceotin) for last three cycles and injections for a year after. Plus adjuvant Zometa 

I’ve already had three cycles of Chemo and am due to start my Docetaxel/ Trastuzumab cycles next Friday. 

So was really interested to read what you and others are talking about concerning low amplification HER2 positive. 

The only recent study I’ve found (haven’t had much time yet to research) is a trial NSABP B47 by Dr Charles E Geyer Jr, Proff of Medicine in the US in Virginia and associate director at Massey Cancer Center in Richmond Virginia.  An article/video interview on Medscape.com he talks about his B47 trial.  The title is headed, “ For Low level HER2 Trastuzumab is a No go - there is just no benefit.

I’m meeting with my Oncologist on Monday and I’m going to be asking questions about this and finding out if Trastuzumab is going to be of any real benefit to me and if the potential side effects outweigh the benefits.  I don’t have any heart problems and am in my early 50’s.  I want to know what exactly constitutes low level HER2, what is the most recent thinking etc.

Does anyone else have any information on this or similar experience? It would be great to hear from more ladies! 

All the very best!

This is something I discussed with my oncologist. There was a major kerfuffle when my surgeon said I was ineligible for a trial I was interested in because I was TN. I asked why the hell I was getting Herceptin in that case - one VERY red faced surgeon and me on the line to BCN demanding an appointment with oncologist. I did loads of reading before that, with pathology report in hand.

He agreed with me that the stuff I had read was indeed correct, but that more study was still needed and therefore it was too risky for me to not have Herceptin. We compromised - I would continue until if/when I ran into heart issues. Which I did after 12 cycles. Oncology, cardiology and myself were in agreement that I would stop Herceptin, the feeling being that actually 9 was probably sufficient so I had done enough.

I guess also, I was ER/PR0. Not even low. Zero. Nada. So there was no other treatment available to me and therefore we had to give the Herceptin a shot.

There are several different tests for HER2, and they all report the results differently. Which is why they always do 2. 

I'll see what else I can dig out over the weekend.

xx