Diagnosis changed! Now HER2 positive.

I’ve spent the last 3 weeks believing that I am triple negative only to be told today that I am HER2 positive. As you may imagine I have spent loads of time researching triple negative and had loads of support and information from people on the forum. I have my first appointment with the oncologist tomorrow and all I know is that herceptin seems to be effective…what else do i need to know or ask?
Thanks
Fin

Hi Fin, I am Her2 +, I had herceptin with my chemo and am having it for forsseable future, it is called the new wonder drug, I have had very good results with it. I read a previous post of yours which said you have no node involved so maybe you won’t have chemo, your onc will give you the best treatment plan for your curcumstances.I have had 8 infussions of herceptin so far and have had very few problems or SEs with it.

Hi Tillybob
Thanks for info - glad you have found herceptin ok. I just feel it’s a much better diagnosis because at least there’s something that can be targeted.I was very worried before as I didn’t fit any of the groups for triple negative.
Fin

I think they generally advise that if you’re HER2+ you have chemo too, because Herceptin works best in conjunction with chemo. But triple negatives usually get chemo too (I think) so that’s not a big change for you.

Because I didn’t want my veins to be damaged I asked for a portacath because of having Herceptin for a year after chemo and didn’t want to have to mess about with a PICC line for a whole year, so you might want to enquire whether that’s possible (if it’s something you’d want). You might need to google, think if you look for “subcutaneous central line” or similar you might find info. I even found a video of one being fitted in surgery, watched it, and STILL went ahead and had it! Best thing for me, as it meant I could go and play in the sea over the summer and that I can get in a swimming pool too, which you can’t with an external line. And it protects your veins too.

You might also want to take a look at the NICE guidelines for HER2+ cancers.

Hi Fin
my understanding is that Herceptin is only licensed in the UK for primary BC if given in conjunction with chemo.
T

herceptin currently has to be given with or after chemo however there are research trials going on looking into using it without chemo.

also not everybody will get herceptin with a herceptin posistive tumour there are anumber of factors they take into account and wee algorythm they use… the higher the grade, the bigger the tumour, the more nodes involved, the younger your age and the less hormones your receptive to the more likely you are to have herceptin.

lulu x

Hi Lulu
Thanks for the info - it’s very helpful
Fin

Hi Lulu
Thanks for the info - it’s very helpful
Fin

Hi Chocciemuffin
Thanks for the info about the subcutaneous line - I swim every week so that is a must …as long as they decide to give me herceptin!
Fin

Hi Terri
Thanks for the info - some of the stuff that I read didn’t make it particularly clear that herceptin could only be given with chemo.
Fin

Went to the oncologist today - chemo and herceptin - that’s fine.

Went to the oncologist today - chemo and herceptin - that’s fine.

Fin, did you ask about a portacath? I had to really kick up stink to get mine, so be prepared for a battle. That said, others had theirs fitted almost as standard. Well worth investigating, and try to get it BEFORE your first chemo, to preserve your veins.

Yes - consultant said she would sort it I explained that I swam - the only comment was 'I don’t really expect you to be doing 10 lengths butterfly ’ I did respond no - and didn’t tell her that it would be 50 lengths breastroke in 35 minutes…Fin

Hi Fin

Just to let you know that I had FEC then Taxotere (chemos) and Herceptin started with 5th chemo. I have my chemo direct to vein without a poracath as it was my desire, if possible, to not have a portacath or pick line. I amd due to have my 12th Herceptin and so far I am managing ok. Veins have been damaged by chemo but have been gradually getting better. Just my preference really and can absolutely understand why folks might choose a line. Good luck with your treatment. J.

Hi can I just ask for your advice on herceptain how were the side effects I am wanting to go back to work straight after rads I am on fec at the moment and then rads tamoxifen with her herceptain how have you found it?

Hi

Remembering we are all different and herceptin is no where near as bad as Chemo can be, thought you might find this useful.

share.breastcancercare.org.uk/forum/herceptin-side-effects-quick-poll–t32818.html

Hope it works.

Debx

Thanks midge that was very helpful. Much appreciated.

HI all

this has been real help as im due for herceptin soon 18 cycles for a yera fter chemo finished and i really want my line out so i can swim to get fit and with my baby and have surgery but they keep saying its not advisable to have canual so a portacath lloks like it could be answer although in my area they only put them in for private patients i think but will ask!!!

thanks

Just noticed this and really pleased you have a plan, Fin. It is funny how things evolve in the course of diagnosis.
Are you called Fin because you swim like a fish??
Lavender
xx