Deciding against chemotherapy

Going through breast cancer treatment
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Just wondering if there is anyone the forum who has decided not to go forward with chemo? Thought processes? My fear is dying from side effects when right now I feel great and have a lot of life in me, spending the rest of my life lying sick in a bed. Thanks.

Addendum: Received feedback from folks, uplifting. I have spoken with an associate whose feedback is somewhat scary. Hospitalized for fevers of 104, doubled over in bathroom with GI issues, cardiac issues, brain fog so bad she could not remember to turn a light in. She was unable to return to work which is a real issue for me. As with her, we are both older, we are nurses so all we see in the hospital are the folks who don’t do so well. This is round 2 for me, so I have in and did a double mastectomy this round. Any additional feedback is appreciated…

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Huh. Seems like you might have some old information on how chemo works. I had it and did fine. Not to say it wasn’t difficult. It sucked in fact but maybe for a month or so (the effects are cumulative so for my first three sessions I felt fine. By the time the fourth hit I felt like dog crap and it wasn’t until four weeks after the fourth that I started significantly improving) and the rest of time I felt pretty close to my normal self. The drugs to manage side effects are great. I also made a complete recovery and most of us do. At any rate I don’t know if they recommend chemo for you but if they do there have been enough studies now done to know who and who won’t benefit so they must be absolutely sure you will. And IMO you should think very hard about refusing to do something professionals say will benefit you. Breast cancer is a tricky SOB. You can go years and years and be okay and then 10 years after the fact you get a distant recurrence which isn’t curable. That’s not something you want to gamble with.

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Whilst having treatments is a very personal and individual decision there are many of us on here that were fortunate and had minimal side effects from chemo. In my case the thought of it was far worse than the reality.

Good luck in whatever decision you make x

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I remember a work colleague being diagnosed with bc 13 years ago. She had chemo. She said then that she feels fine but she knew she would be feeling rubbish with the treatment. Fast forward to now, she is still with us with several grand children and doing well.

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I’m going through chemo as we speak, was diagnosed in June, first cycle in July hoping last in November…they said 7 cycles for me.
The thought was really scary and worrying for me as I have friends who have gone through this.
But I had no symptoms, my tumour was picked up on the routine mammogram and when they explained what they thought should happen to get a good result for ME I didn’t hesitate.
I don’t want to die from this, I have grandchildren I want to see grow.
It’s been a shit journey so far I won’t lie and I’m just dealing with the side effects of number 5 but I will get through it each day, listening to my body and survive to tell the tail.
I take photos and keep a diary so my kids can read in the future…or
I can look back at in once I’m over it in many heads to come.
I wish you luck on what ever you decide…but my advise would be take the chemo.

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We’re all different and there are different types of chemo of course. For me it wasn’t that bad, and as somebody else said I felt it was more scary than it actually was. The first one was the worst (severe headache, and I didn’t know at the time I could take painkillers!) then it got slightly better and better. After 4 chemos (EC, every 3 weeks) I had another type (Paclitaxel, weekly) and that one was much better. I could even run the next day (I never stopped running in fact, which helped me physically and mentally, but with EC I could only manage two runs a month). I did lose my hair but wore beautiful scarves. And no more shaving your legs for a while! The thing is that if you can’t bare it, you can always stop before the end. So why not give it a go and maximise your chances? We’re so lucky in England as it’s offered for free. Bon courage.
Marie x

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I have to admit like you, I contemplated the same about initially declining chemo. I wanted surgery and be done with it.

I was so resentful of my diagnosis as I thought I looked after myself, was relatively healthy, enjoying life, no prior hospitalisations, health conditions and was not on any medication whatsoever.

I was afraid that whilst being well and with no symptoms aside from the diagnosis of BC why did I need neo-adjuvant chemotherapy?

Would I sacrifice quality of life for quantity ?

Why prolong my life with chemo if the side effects are going to rob me of quality.

These are all valid questions

There were also borne out of anxiety and fear initial back in May. FFWD —- to now, I have had 7 cycles of 2 different types of chemo. I completed it a week ago and ‘cautiously’ rang the chemo bell.

I am now waiting to have a lumpectomy. The cancer is not seen on MRI scan or lump felt on palpation.

Side effects varied throughout but not too bad at all. I am not under any illusion that side effects may come and go/ yet to develop and bother me sometimes but so far I am not experiencing lasting damage.

Of course this very much depends on your prior health and how many cycles you need. Everyone IS different in their response.

I choose to trust my body’s wisdom and my strength to deal with what comes/yet to come.

I would say do your research, speak to your doctors/oncologist/nurses etc and make an informed choice through knowledge empowerment and not borne out of fear (or worse still someone else’s fears) of what may or may not happen.

I am glad I gave myself a fighting chance.

All the best with whatever decision you make or journey you go on.

Your body, your choice as long as you are willing to live with the consequences.

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Hi everyone,
I remember having similar feelings about the prospect of chemotherapy, I asked the oncologist whether it was possible to have a half dose.
However, I went ahead with all the treatments (lumpectomy, chemo, radiotherapy, herceptin and hormone tablets) all for a 11mm tumour which hadn’t spread to the lymph nodes.
I have always felt I did the right thing, as one of the worst after- effects of a cancer diagnosis is the fear of it recurring, but I know that I’ve done everything to prevent that.
The chemo wasn’t too bad - the worst thing from the treatment was the lack of libido afterwards, but I think that was due to Anastrozole. I changed to tamoxifen so that I could use vagifem and that helped. Its now back to normal, I’m pleased to report!
Good luck with your treatment, the professionals know the statistics and wouldn’t recommend something if it wasn’t going to help.

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Hi Nika,

Just picking up on what you said about letrozole vs tamoxifen and how you can have vagifem with one and not the other. Did you find a piece of evidence to present to your oncologist to help persuade them to allow you to have vagifem? I haven’t asked my oncologist yet but the GP wouldn’t prescribe vaginal oestrogen unless I have the go ahead from the team. I do think I need it. Sex is a no go area atm sadly. Thank you!

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What is offered free in England? I live in Scotland and all my treatment was free

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Sorry, I should probably have said UK instead of England. I was referring to the NHS and how lucky we are to have all these treatments (chemo in particular) for free. It’s not necessarily the case in other countries (like the US for ex.)

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It’s not at all here. If you have good insurance the vast majority of your care is covered but you still have deductibles to reach every year which can total into the thousands. However, after reading this forum so much I will say that a major asset we have here in the states is much less wait times and much more choices in our care. For instance they don’t tell us what surgery we get. They give us options and we tell them what they are going to do. It’s why we have so many more double mastectomies here than you do. But the asset of that only outweighs the con of personal expense IF you have good insurance and access to a NCI hospital with it. If you don’t, then your care may only be what can be described as subpar.

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Hello @patsrn I spotted your question the other day and wanted to give it some thought before I answered.
The first thing to say is that it’s your body, and your decision. But if you are minded to give chemotherapy a pass I’d really advise looking into getting counselling to make sure you’re getting support from an objective sounding board. MacMillan offer six free counselling sessions to anyone undergoing treatment (you may already know this but thought I’d share just in case). I found this counselling really helpful.
For me, the idea of chemotherapy proved worse than the reality. I’m currently halfway through and am doing ok. I’m 45 with young kids. It’s not great but it’s doable and I’m still having a nice life, playing with my kids and seeing friends. Exercise (particularly walking) massively helps with my side effects and mental health.
Everyone is different, health wise and emotionally. For me I need the reassurance that I’m doing everything I can to stop it coming back. Your oncologist will provide you with a Predict score, showing a percentage of how much chemo will help reduce your risk.
The tricky part is knowing how you’ll cope with the drugs, but one thing I’m learning is you’ll hear more online of the sad stories of people who have had an awful time with it. Those who do fine are less likely to share as they have less need to. But I’m learning that many people get through chemo ok.
Not sure if my ramble helps, but it’s my perspective! Can’t recommend counselling enough, I found it so helpful xxxx

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Hi @patsrn, I remember my oncologist stating a risk of 1/100 to die from chemo, but that is only during a period of a few months while the risk of cancer recurrence is for life. He also advised me to keep working (I work from home) and keep active and which helped me a lot. Yes there are many unpleasant side effects, some of them well managed with the extra medication we are provided with (for example nausea) and yes there are difficult days in each cycles, more enduring in cycles 5 and 6. Nevertheless it is all manageable, even with the odd problem. I was admitted to hospital on day 7 of cycle 5 for 1 night because of a fever and it turned out my neutrophils count had dropped, so my oncologist decided to reduce the dose by 20% on the final cycle. And I contracted COVID from my husband on day 8 of the final cycle, which led to another night in hospital. After the final cycle, it took me a few weeks to feel better overall and, admittedly, months for some of the side effects to wear off. Nine months since the end of the final cycle I am feeling grateful to feel safe and for the chance to to spontaneously think long term about my life!

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Hi Andreag,
Sorry for the delayed response- I had to check what I did to change from Anastrozole to tamoxifen as it was 5 years ago. I first went to the GP who was very sympathetic and said vagifem will be fine with tamoxifen but my oncology team had to change my prescription. I was still under the team then so at the next appointment I just asked. She knew all about the latest evidence, and was happy to change it, but just said that for post menopausal women, Anastrozole was the first choice.
I must say changing also improved my joints, although hot flushes have always been there!

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Yes Marie we are extremely lucky to have our NHS

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Hi, Answer went to wrong person, hope she still sees it…

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Thank you for the open and honest feedback, for not making me feel crazy for exploring all my options . It is so much appreciated

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Thanks Nika, that’s great to know. I am 53 and was perimenopausal before starting treatment, so Tamoxifen may be the drug of choice, and I also have arthritis in my big toe joints so don’t like the idea of letrozole and the like anyway!

I will speak to my team next appointment.

Thank you again!
Xx

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Good luck! Let us know how you get on x