Her2 triple positive - refusing treatment

Hi Mercy,

My BC was HER2+, grade 3, stage 1. I’ve completed surgery, chemo, radiotherapy - still on Herceptin and Zoledronic Acid.

Everyone comes to their own conclusion about how they want to proceed, but this is how I thought about it. 

First of all - you’ve been told your cancer is curable. They wouldn’t say that if it wasn’t true. And sadly it’s not true for lots of the ladies who join this forum.

Secondly, I like to think i can understand most of what is being proposed. But I am not an oncologist. I am not an expert in the treatment of cancer. But the people who are looking after us are  

I work on the basis that all the nurses and doctors I meet have my best interests at heart . So if they propose a treatment, and they tell me it increases my chances of getting rid of the cancer and it not coming back - then I believe them. If the treatments didn’t work, then nobody would be paying for them to be done. Treating cancer is not exactly cheap!

There was nothing I’ve had in my treatment so far that was so awful that i didn’t think it was worth doing. The chemo wasn’t fun but neither was it atrocious. I don’t have neuropathy from the paclitaxel, I didn’t get lymphodaema from the surgery. So far my Echocardiograms show that my heart hasn’t been affected by the Herceptin.

The doctors have to tell you about potential side effects, but it doesn’t mean you will definitely get them  You might get some but nearly all of them go away post treatment

I’m 62 and I have every intention of fully returning to my previously active and outgoing life.

You are so much younger than me - you have so much life ahead of you once you get past your treatment. Being diagnosed doesn’t mean that you will spend your remaining life undergoing treatment  

My advice would be to take any and every treatment that can help you get rid of the cancer

Best wishes with whatever you decide

Hello Mercy202572f694 

I am sorry you have found yourself on this site and with such a dilemma. 

I'm not sure about your diagnosis but I think I have seen other people.....who took treatment and made good recovery.....with similar. Mine was very different but I had TNBC, which is also considered an aggressive cancer to tame.

When I was first diagnosed I remember a lady on here posting that she didn't think treatment was worth pursuing for all the side effects. She was sure life style and homeopathy would work as well. Naturally everyone can choose and has a right to their own decisions. I took the treatment ... lumpectomy, chemo, radiotherapy . I reacted badly to the taxoteres and have permanent nerve damage in my feet and legs. I also needed an operation on my spine but.....I am alive. I am living a good life now.... travelling, socialising, caring for friends and family.....The lady who chose no treatment died after five years. My cancer was 10 years ago.

So my advice to you.....go and talk through all your concerns for life expectancy and reoccurring cancers with an oncologist. Ask them why they are proposing what they have. From reading many posts on Macmillan, I feel that today's chemo has been adapted so that side effects are less harsh. Ten years ago oncologists were delighted with the success rate against cancer of the chemo drugs but hadn't had a chance to consider long term reaction. I can't blame them. They were just pleased that they had found successful treatments and once they recognised the difficulties caused to some people, they have worked hard to adjust them whilst still getting good results.

Of course you will hear about people who took treatment but still died but I suspect few of them had an early diagnosis. The significant part of your diagnosis is Stage 1 and the fact you have been told me 'curable'. These are the things you must discuss with your doctors who will have all the relevant information about you in determining their decisions. Only then can you make an informed decision about the right way forward for yourself.

I wish you well. If I knew you personally I think I would say not to be discouraged by statistics and fears of unknown problems. When you decide consider how many people have had treatment for BC and for whom it hasn't returned.

Try asking your questions again on the Awake thread. People with all experiences post there and whilst some can advise you about secondaries and recurrence others like myself have been free of cancer for many years.

Take care. Thinking of you.

Hi there

I am sorry you are going through a really hard time just now. I didn't have the exact type of BC you have but I (stupidly) had a lump for a good number of years which got larger and painful over the years until I  couldn't take the pain it was giving me in both my breast and my arm. 

I was diagnosed pretty quickly after going to the doctor at the end of February and my tumour, as you can imagine, was very large and it had attached onto my muscle. I had to have chemotherapy (8 cycles) to shrink the tumour and lift it off the muscle. Chemo is certainly not something I would like to have to do again but it was nowhere near as bad as I had been expecting. Strange to say that I enjoyed my treatment days when I got to put my feet up and get spoiled and well looked after by the staff. I also loved my chats and laughs with the other patients.

Fast forward to yesterday when I was told that the chemo and my lumpectomy that I had last Monday meant that I was now cancer free. Yes, I still have radiotherapy to go and will be on tablets for a good number of years but the worst is over and it only took 6 months.

I am a positive person and they told me at the start that it was curable I couldn't wait to get started on the treatment. The consultants, doctors and nurses have all had an immense amount of training and most of them have years of experience so I trusted them to look after me. I took all the treatments they advised and just got on with the job in hand. Apart from a rough couple of weeks, it wasn't too bad at all and I am excited to be able to say that I am recovering from cancer and not 'I have cancer'.

My advice would be to try everything you can to get better. You are still young (I am 51) and I think it's worth the fight.

Good luck in making your decision and I wish you all the very best xx