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Refusing chemo and herceptin

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Re: Refusing chemo and herceptin

I have just completed Herceptin, further to chemo (3FEC and 3Taxotere) Radiotherapy (20) following WLE for 1.9 tumour HER2 positive and Hormone Positive, I remain on Letrozole. I have also just had an Oncology apt. with an 'all clear' so far. I was strongly encouraged and advised to take all this treatment and after weighing up all the pros and cons I agreed wtih this course of action. My survival at 10 years was increased from 82 to 92 out of a 100. No brainer for me - I wanted that extra 10 chance.

I do appreciate that this is an individual decision, however I felt the decision to 'throw everything at it' knowing the aggressiveness of the HER2 componenet was the right one. You have to have all the information to make this informed choice. Your oncologist will be a big part of that.

The NHS spend a great deal on this treatment and do not part with budgets lightly. I know, I work for them! The evidence for me is within that reality too. They wouldn't fund it if they didn't believe it was the 'right thing to do.

Good luck with your decision and future health.

PS I was 49 at diagnosis.

Re: Refusing chemo and herceptin

Hi

Thank you all so much for your contributions.

This afternoon I have spoken with a girlfriend, she is a senior radiographer working in the field of BC. I told her my path and asked her what she would do.

She said that because there is no node involvement, is strongly Er+ she would go for the rads and the letrozole but say no to chemo. She also told me that if i do have a recurrence, because the nodes are clear, it is almost certain it would be a local recurrence and thats when she would submit to the chemo.

Spoken to the Penny Brohn Centre and my nutritionist,,, the onc is going to have to come up with some very persuasive arguments for me to say 'yes'.

Goodness, I don't know whether I feel empowered or if I am going loopy!! So grateful for this forum and the support of those who walk before me.

Smiles.

Re: Refusing chemo and herceptin

Hi,

I was in a slightly different position, grade 2 RE+ve, one node involved but also had to make this decision.

I looked at another tool (Adjuvent) which turned out to be the same one my oncologist uses. this takes all features into account including your age. One thing I would say is that you should only use a tool like this if you are sure you can cope with the results (it will give you an average 10 year survival rate.....remember it is only an average as well).

For me the potential improvement with Chemo was 1-2% over WLE, rads and Tamoxifen. My oncologist said it was totally up to me as it was so borderline. I was also influenced by the fact that I am type 2 diabetic and I was concerned that the chemo might affect my diabetic control, but in the end I think I would have made the same decision anyway. My decision was not to have Chemo.

Having said that as other ladies have already said if that is your decision I think you then have to be comfortable with it, and whatever the eventual outcome try not to think "what if". I have had moments in the 2 months since wherre I wonder if I should have had the chemo, but each time I rethink the stats I am happy I made the right decision for me at this time.

Good luck with your decision,

Lynda

Re: Refusing chemo and herceptin

I would echo what has been said, whatever decision you make you have to be happy with it. It doesn't matter in the slightest what anyone else says.

For me it wasn't a choice - I had to have chemo - massive tumour but the result was excellent. From a definite need for a mastectomy I ended up have a WLE, no nodes involved so only an overnight keyhole surgery.

I also had rads and 12 months of Herceptin.

But all that is personal to me. As we have said, what you have to ask is, at the end of all this if you have a recurrence will you be able to say "oh well, these things happen". If you can then you know the answer. If you can't then you also know the answer.

Its actually harder sometimes making the decision compared to having the treatment.

I am not taking Tamoxifen at the moment due to horrendous side effects, but if I have a recurrence before I try it again I know I can say to myself it might have happened anyway, as I am comfortable with my decision. And that is where you need to get to, somewhere where you are comfortable.

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Re: Refusing chemo and herceptin

Pesteringpixie,

Whist normally there is strength in numbers this is such a personal decision - and even if they don't respond, statistically there will be ladies out there who had chemo and herceptin and had a recurrence and plenty more who didn't have a recurrence - and there will be ladies who opted not to have chemo and had a recurrence and plenty more who didn't! So nobody will be able to give you an answer of what to do.

YOU have to make the decision for YOU as YOU are the one who has to live with that decision. The best way to do this is to understand the risks (ie if there's only a minimal effect on your prognosis then you might weigh up the additional prognosis with going through the treatment). What was your onc's opinion? Maybe you should get a second opinion (we are all entitled to it) to see what their views are. Are you the type of person who will be worrying if you feel as though you haven't thrown everything at it? Or will you be able to move on, content with your decision and get on with your life?

It's a horrible position to be in. I didn't have to make a decision regarding chemo - but have had other hard decisions regarding my treatment along the way and it's SOOOOOOO hard!!! I, personally, have embraced the attitude of doing everything I can to minimise my risks of recurrence and spread as I just couldn't bear the regret if anything happened in the future.

There were some ladies on here who did a less aggressive chemo regime (can't remember which one - but it doesn't make you lose your hair) in order to still be able to have Herceptin. Maybe that's another route to look into?

I really really hope you are able to come to a decision with which you are content and at peace with.

x

Guest user
Not applicable

Re: Refusing chemo and herceptin

Hi, there is another online prediction tool you could look at, http://lifemath.net/cancer/breastcancer/therapy/index.php
Also, on the American Forums Breastcancer.org there are threads on this topic and many ladies who have opted out of chemo. For myself, I was advised chemo would bring a definitive survival benefit and although reluctant I made the decision to go ahead.

Re: Refusing chemo and herceptin

Hello

Thank you to everyone who has responded. Just had a phone call from hospital and have been booked in to see Lead Onc next week....

NHSPredict shows minimal increase in prognosis by having chemo/herceptin - thanks xwelcomex for that.

Need to find other BC ladies who have said 'No'.

have a wonderful day everyone xx

Re: Refusing chemo and herceptin

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Re: Refusing chemo and herceptin

Hi PesteringPixie
2.5 yrs ago I had an MX for grade 3 stage 2 er and HER+ no lymph nodes involved and was 51. The oncologist at the time said it was my decision whether to have the chemo followed by Herceptin (I was put on arimdex but later changed to tamoxifen due to side effects).

I chose not to have the chemo and had a good 2.5 years but am now on chemo and will have rads and 17 herceptin for a recurrence.

I do not regret the decision I made, at that time it was right for me. It is a difficult decision to make and you have to go with what feels right for you. If it recurs there is nothing to say it would not have come back even after chemo and herceptin. I have read too many threads where this has happened to think that any treatment has a 100% guarantee of working. BC is a fickle beast and has its own agenda.

Good luck with your decision. As ChoccieMuffin says, only you can decide. Whatever you do decide, do not beat yourself up about the 'what ifs'.

Re: Refusing chemo and herceptin

Pixie, whatever decision you come to in the end, it has to be YOUR decision and one that you are happy you can live with. There are people who refuse chemo, and others who beg for it, but only YOU can know what's right for you.

How would you feel if you decide not to accept chemo and Herceptin and you find out in a couple of years that you've got secondaries or a recurrence? How will you feel if you go through chemo and Herceptin and don't get a recurrence or secondaries, will you feel as if you've been overtreated? Those are the questions that only you can answer.

To help you find what you're comfortable with, give the helpline a ring to bounce your thoughts around with. They know what they're talking about and talk to loads of ladies in your position, whereas we only have our own personal experiences on which to base suggestions and advice. You might also want to speak to your onc and get the relative risks, and a good explanation of what those figures mean FOR YOU. HER2+ cancers are more aggressive and more likely to recur or spread than HER2-, but Herceptin brings your risk back to HER2- tumours, or even better.

Personally, even if I'd been given the choice I would have asked for chemo, with my initial diagnosis being Grade 2. But after WLE I was upgraded to Grade 3 and HER2+, so for me it was a no-brainer, chemo and Herceptin were the recommended treatment for me.

And one year on from the start of chemo, I've got my hair and my life back. I'm still on Herceptin and doing ok (it's the non-cancer stuff in my life that's giving me problems at the mo) as for me there are not many side-effects from Herceptin, and I'm happy that the docs are keeping an eye on me and how I'm doing. Herceptin's a doddle compared to chemo, for me anyhow, and I am glad I did it, even though it was tough to do. But like I say, that's just my own experience.

Re: Refusing chemo and herceptin

Hello pesteringpixie

Welcome to the forums, I’m sorry to hear that you are having a tough time at the moment. I’m sure the users of this site will be along to support you soon.

Maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

best wishes
June, moderator

Refusing chemo and herceptin

Hello

I have Stage 1, IDC, Grade 2, Node negative, highly Er+ and also HER2+. I am 52.

WLE gave me clear margins and no node involvement - whoppeee!

My recommended adjuvant is firstly chemo, Herceptin, 2 weeks radiotherapy and then Letrozole.

However, with such a low stage/grade and node clear, I am reluctant to do the chemo but can't have herceptin without it.

I am self-employed and in great health (up to the cancer) eat a macrobiotic diet, exercise and a healthy BMI, no alcohol or tobacco. Family history of osteoporosis - but no signs in me as yet. My guts tell me to focus on nutrition and healthy living to heal my immune system and accept radiotherapy and the Letrozole.

Has anyone else said 'no thank you' to chemo?

Seeing my consultant oncologist next week to give him my decision.

Need some help to bounce this one around.

Smiles 🙂