Seriously thinking of refusing chemo..

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Hi all, I have recently been diagnosed with grade 3 invasive ductal breast cancer. 

Stage 1,

23mm

ER positive

HER2 positive.

No lymph nodes involved. 

Had a reconstructive mastectomy 2 weeks ago. 

Clear margins, surgeons very positive everything is out. 

Radiotherapy therefore no longer recommended. 

 

However, they want me on chemotherapy, Herceptin and Tamoxifen. 

I understand Tamoxifen and was willing to give that a go.

However, today came to light the HER2 positive status (which was thought to be negative at first). Now they want me on the most aggressive chemo treatment possible with herceptin. 

I can totally understand where they’re coming from, from a doctors point of view, but I am seriously not convinced of the benefits of chemo, compared to the risks. As a matter of fact, I am really considering declining it… I realise it is a bit controversial, but I don’t want all that poison in my body!! 

However, I am a young mother (34) with 2 young children (1 & 4), and obviously want to be around as long as possible. But I am not sure how I will cope with chemo either, not even to mention the long term effects. It sounds so unreal to start a regime like that while right now I feel absolutely fine, and just want to enjoy my boys and be fit and healthy. 

I am doubting everything now, and wonder whether I am underestimating the cancer… ‘Theoretically’ I am cancer free at the moment… and strangely I am not that scared.

Chemo would just be an insurance for it not coming back… Which of course I don’t want to happen, but the statistics are so confusing! It seems like I might increase my odds by about 12% if I add chemo and herceptin. That doesnt sound like a lot, but I realise these are 12 real women in 100. However, it also means 88% of no recurrence risk! 

 

It just doesnt feel like this is happening to me… 

 

Has anybody here been in a similar situation, and refused chemo? 

Thank you,

Marije

 

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Hi Marije,welcome to the forum.Yes lots of ladies have had the same dilemma and it’s really not an easy decision .I haven’t been in that position myself but I’m sure some ladies who have will be along soon to offer some advice /support.Herceptin is a really effective treatment in preventing HER2 positive cancer recurring but I don’t think they can give it without chemo.They seem to recommend chemo routinely for anyone who would get more than a 4% gain from it .Have you got an appointment with Oncologist ,you will be able to talk through all the pros and cons with them before making a decision.Jill.

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If you search under the words "not to have chemo " on the site it will bring up a number of threads were this has been discussed.Apart from surgery all the treatment we have for primary breast cancer is to prevent reoccurrence rather than cure cancer ,it does feel very strange to put yourself such gruelling treatment when effectively you are “cured”, but none of us want to do this again with possibly worse outcome which is why we do.I only had radiotherapy but the long list of potential side effects they made me read through scared me ****less ,ditto Tamoxifen,however they are only possible side effects and everyone is different. Good luck with your decision.

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Hi marje,  always a difficult  one! Chemo was never in the plan for me so when this changed  and the surgeon  said i was borderline  for chemo and the oncologist wanted to have a chemo chat I was devastated. When I went for the appointment he was very clear that his recommendation  was for chemo although obviously  it was my choice whether I went ahead. I am older at 48, 30mm grade 2, er+, her- tumour with macrometastases to the sentinal node. For me the predict modelling (which is a guide to be used alongside clinical details) chemo gave me 8.7% increase in 10 yr survival. My children are 10 and the % along with the oncologists opinion was enough for me to say yes to chemo, I want to ensure I have done everthing possible to prevent it returning and see my children grow up. Obviously  there are no guarantees to anything and unfortunately for some women it does come back with or without chemo but at your age and her+ that % is quite substantial? 

However, that’s my opinion and I totally respect yours whatever the outcome :relaxed::relaxed:.

 

Sorry I probably haven’t helped at all, but whilst chemo is  not in my wish list if things to do it is doable.  Good luck with whatever descion you come to xxxx

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Hi. I was in exactly the same position as Helly and we were deciding at the same time. I have had problems with wound healing though and so have still not started chemo.
I felt I had to everything possible so if it did return I wouldn’t have the regret of “maybe it wouldn’t have come back if…” scenario. However having very nearly missed the window for chemo it made me realise I made the right decision. I have had so much more time to think about it than normal, I have an exceptional GP who has listened and answered questions and an equally supportive BCN who I’m sure I drive mad. I finally, fingers crossed, get to start on 20th may.
To me 4-5% was significant so 12% would be a no brained BUT that is me x

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Well, speaking only as someone newly diagnosed with bc I would take the professionals’ advice and follow their plan. After all they are the specialists and do this all the time. Best wishes, Hannah56

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Hi Marije,

 

First of all, I am sorry to hear you are in this position, and can understand wholeheartedly what you are going through.

 

I was in a similar situation - I had Stage 1, Grade 3 15mm HER+, no lymph node involvement, clear margins etc, and thought, as my medical team told me from the start, that I would just require radiotherapy.  I was 39 years old.

 

When I went for my post op results, however, I was informed that although the cancer was away, the results showed that I had lymphovascular invasion in the tumour site, and because of this, the Oncologist wanted to discuss chemo with me.  I fell apart when the chemo word was mentioned as it was my worst fear.  I actually took the news of the chemo worse that I took the news I had cancer, which is strange, but true.

 

When I met with my Oncologist she talked me through the chemo option and said it was ultimately my decision.  She said that my results had been so positive, and without chemo there was only a 5% chance of my cancer returning, however, she put the fear of death into me when discussing the LVI (lymphovascular invasion). She said that although it had been cut out, if one tiny cancer cell had managed to get out into the bloodstream, then it would result in a secondary cancer, to which there is no cure.

 

Given that I was still completely petrified, and given that they said there was only a 5% chance of it coming back without the chemo, I opted not to go with chemo, just with the radiotherapy.

 

I went home and played it over and over in my head.  I kept thinking about what she said 'if one tiny little cell had managed to escape …" and, the next again morning I made the hardest phonecall I have ever to had to make, and phoned my oncologist to tell her I wanted to go ahead with it.

 

For as scared as I was, I knew that if I didn’t do it, I wouldn’t be able to live with the decision … everytime I had a headache, or a stomach ache, I would just be convinced the cancer had come back.  I also wanted to throw everything I had at it.  If, god forbid, it did ever come back in the future, then I would feel assured that I did everything I possibly could have the first time.

 

Chemo is not easy by any means, but 4/5 months out of your life is nothing when you think of hopefully living the rest of your life cancer free.

 

Yes, chemotherapy does have long lasting side effects, but I would take those than the cancer any day.

 

Sending you loads of love.  At the end of the day, the only person who can make the decision is yourself, as you are the one going through it, but if you picture yourself a year from now, it will all be over and you would have absolutely no regrets.

 

Please keep us posted as you how you are getting on.

 

Xxx

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Great post. Thank you. I thought chemo was always strongly recommended for grade 3/HER2+ve because of the high risk of recurrence. I was very pleased to read you were quoted 5% as I thought it was more like 30%. Thanks again, you’ve made my day AS xx