Her2 diagnosis.

Smellycrackle

Diagnosed in Sept 2016, mastectomy and 4 rounds of chemotherapy every 3 weeks, followed by a further chemo every week for 12 weeks.  This was a 'nicer/kinder' dose with fewer side effects.  Although every week was pretty full on.  Found it hard to see the 'light at the end of the tunnel" when I started this.  Amongst that was 17 doses of Herceptin - these were 3 weeks apart.  After about 13 months it was finally all done.  I am feeling back to my normal self physically - doing lots of walking/jogging with a friend several times a week and this has been amazing.  Mentally pretty good but I do worry that being diagnosed with Her2 might be the undoing.  Anyone else out there with a similar diagnosis.  I am also on Letrozole as I'm oestrogen positive.  Tiniest bit in one lymph node - so I tell myself I am lymph node clear...   Stage 3  - which I wonder is that because it was Her2  which makes the cells grow quickly?? I am 47.

Afraser

Hi there

I am almost 5 and a half years post diagnosis - very similar, mastectomy, 3 months of A/C, 12 weekly does of taxol, 12 months of Herceptin. Have been on femara ( letrozole) for 5 years. I hope to go off femara soon, but will depend on discussions with my oncologist. I would want some very convincing stats of the benefits of another 5 years though, to offset the side effects. I am well, living a normal life, working, travelling etc. I was HER2 positive in one lymph node only too, not in the original tumour - cancer cells are very shifty. HER2 positive is generally thought to be more aggressive, but what that means for individual cases can be streets apart. We'd all like a clear outline of what we can expect but different people go different ways.  So live as healthily as you can and want, try not to worry ( if it helped we would all be well in a trice!) and think positive. Best wishes.

Smellycrackle

That's interesting. I didn't realise it could be in nodes but not in tumour.. Mine was in the tumour. Yes , thanks for your advice - most days I am good and enjoy life - every now and then it creeps in. All the best to you too. Here's hoping for a long, happy & healthy future.

primek

I had same pathology but node clear. Staging is based on size and numbet of nodes. I had a very fast growing tumour that I was very fortunate to have found 5 weeks after a clear mammogram. I am 2 years from survery now.

My niece had 2 tumours so small they were less than 2mm each...but had 10 positive nodes out of 20. 14 years on she is cancer free. She was on the herceptin trials. 

We all worry it's not gone...it's hiding. It gets better over time . Any worries speak  to a Dr early though as worrying what might be sucks the joy out of life.

Congratulations on completing your chemo and surgery. It's a huge challenge to get through.  Kath x

Afraser

As I say cancer cells are shifty - technically it's metastasised but not in the grim way!  I think letrozole is worth doing but side effects can be an issue - my bone density was terrific for my age when I started but if I end with average for my age (72) I'll be lucky. I have vaginal atrophy - possibly partly age but the exact timing with Femara is deeply suspicious! Also cataracts - in the middle of getting those fixed. And while it can be a side effect, my mother had the same thing at the same age so possibly not. So keep your bone density checks up and yell for help if you have difficulties, no virtue in suffering in silence. Best wishes.

Smellycrackle

Thanks ladies for your comments and advice

Sunshine0206

Hi,
I’m her2 positive as well. Similar dx to you it sounds. I have just finished chemo though.

I like to think that herceptin is a miracle drug. Liquid gold. It’s targeted treatment. Immunotherapy - the future of cancer treatment. I remind myself that I’m blessed to have this option and that the research and data is extremely positive in relation to this treatment. 

I met met a lady last week who was on the original trial 15 years ago. She is cancer free and well.

All will be well
x

Smellycrackle

That is so good to hear that the lady you met has gone 15 years cancer free and well.  Certainly gives me hope..

I hope your treatment isn't knocking you around too much.  You sound very positive - good on you.

All the very best to you too and thanks for your email.

Crusty

Im also her2+ grade 3 stage 2 lymphnodes clear, currently doing chemo with masectomy with recon after as lumpectomy still had dcis cells on all margins im 41.

Smellycrackle

Hiya, thanks for sharing.  Hope the chemotherapy isn't too tough on you.  It seemed like an extremely long road when I was doing it but thankfully am now finished and its all behind me.  Good luck with the reconstruction. A lady I know had hers completed just recently and is absolutely wrapped with the outcome.  I feel like we are very young - me 46 when diagnosed and yourself only 41....

Sunshine0206

I was dx last year at 40. Yes too young. 

JoeyLiz

I’m 31, Stage 2b node positive, grade 3, her2+, finished my AC halfway through taxol but continuing with Herceptin for until next jan. I do worry about “not being around” for my 2.5year Old, my prognosis at 10 Years is 80%, but I know I’m doing everything possible to make sure I will be here so focussing on that

Smellycrackle

Hi. Thanks for sharing.  Yes, I too worry about 'not being around' and also think I am doing everything I can to 'be around' for a long, long time yet.  Once I had finished Taxol the Herceptin was a breeze - no side effects and things got back to a bit of normality.  Hope the same for you..