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HER2 positive and hormone negative cancer

5 REPLIES 5
blueash
Community Champion

Re: HER2 positive and hormone negative cancer

Hello,

 

I had the same type as you. So I had surgery, chemo, Herceptin and radiotherapy. The treatments started in June 2016 (diagnosed in May) and my final Herceptin was August 2017 so it is a long hard slog but I am still here!

 

I used a cold cap and kept lots of hair, I fasted before chemo and my symptoms were minimised. The medication made me gain weight and made me develop aches and pains in my joints. You can get relief from that if you take a couple of claritin hay fever tablets one morning and one evening here's why:

http://myangrycancer.blogspot.com/2013/02/claritin-is-worth-its-weight-in-gold.html

 

Please ask if you want to know anything xxx

 

Simmi1
Member

Re: HER2 positive and hormone negative cancer

Thank you Jo and Ruth for your kind replies xx
PeggyCat
Community Champion

Re: HER2 positive and hormone negative cancer

Hi Simmi. Very good advice from Jo. I would only add that much of the research available for free online is likely to be a number of years old and there are new developments in treatments all the time so it's likely you are not accessing the most up to date data.

I am now almost three years out of treatment and although didn't have your diagnosis I did go through chemo with several people who did. They are all still well and thriving. I met a woman last year who was one of the very first in the UK to have Herceptin and 11 years later was the life and soul of the event I was at.

It's a scary time but sounds like your team have put a great treatment plan in place for you.

Ruth xx
Jobey68
Member

Re: HER2 positive and hormone negative cancer

Hi Simmi,

I didn't have the same type of cancer as you but there are many ladies here who have and regardless of type, stage,size etc the one thing we all have in common is the fear of recurrence and spread so we all understand how frightening this is for you. The best advice is not to google, almost impossible I know but it just feeds your anxiety, there will be success stories out there they are just not as widely published and our brains will always latch on to the negative we read! 

We have ladies here many years on from a HER2+ diagnosis and still doing fine and I personally know one who is heading in to her 4th year cancer free, yes it tends to be more aggresive but they treat it accordingly.

 

You have had a great response with shrinkage from your first Chemo so see that as a huge positive and a sign that your cancer is being knocked on the head! That is the bonus of having Chemo first so you know from the off that it's working. 

 

It all gets a little easier as you plough on, just try not to think too far ahead and just deal with what's in front of you now, speculation will get your nowhere and it just drags you down as you fill in the missing bits and you end up writing yourself off. 

 

Xx Jo 

Simmi1
Member

Re: HER2 positive and hormone negative cancer

Sorry the cancer will spread anyway
Simmi1
Member

HER2 positive and hormone negative cancer

Hi all, I’ve recently been diagnosed with Stage 3, grade 3 HER2 positive and hormone negative breast cancer. I have a large tumour (8cm) with at least one lymph node affected. My treatment plan is 6 months of chemo to shrink the tumour (currently inoperable) then radiotherapy then mastectomy with immediate reconstruction. I can’t have lumpectomy as I also have DCIS. They are doing surgery last so the radiotherapy doesn’t damage the new breast.

While my medical team seem to think I have a reasonably good prognosis thanks to herceptin and the fact that the tumour has shrunk in response to the first round of chemo, everything I read on internet shows that I have a really bad type of cancer which is more likely to come back and spread within 2 years. . Does anyone else have any experience with this kind of cancer? I’m really panicked - I’m only 42 with two small children. I’ve started chemo but am terrified the chemo will spread anyway 🙁