Opting out of chemptherapy

Diagnosed with breast cancer Recently diagnosed with breast cancer
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What Milly Molly meant when she mentioned travel insurance is this:

If you try and get travel insurance during or after diagnosis and treatment you must declare that you have/had breast cancer and there will be a series of questions you have to answer.
One of those questions is always “Have you ever refused surgery, chemotherapy or radiotherapy for your cancer?”. Having to stop after 1 session would most likely be considered as a refusal (even though totally out of your control). This means either they won’t insure you or, if they will, your premium will be much higher.
Interestingly, they don’t ask if you have refused/stopped hormone therapy (which I had to do because I couldn’t tolerate it).

So if you want to travel with insurance, not having the chemo might impact your ability to get cover (or afford cover).

Hope this helps.

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Hi, I was diagnosed with invasive ductal carcinoma last year and had surgery in November. 2 lymph nodes affected and 2 tumours in breast one over 5cm so I hit the stage 3 grade 3 level. Oestrogen positive. There was no oncotype testing done and not even sure if I can go back and ask for it now. Im 46 not sure if this is age relevant. I was told to have 6 rounds chemo, 21 rounds radiotherapy plus, hormone treatments. Anyway I reacted badly to first chemo, wound issues, so it was paused for 3 months to allow me to heal up again. I was told by my oncologist that it was not worth me having chemo as it would be minimal benefit. He didn’t explain why and his communication was very poor. I pushed to speak to other oncologist in team and they went through Predict with me. My benefit from chemo was 13% same as the 10 years of hormone treatments. So as im still relatively young I wanted to give myself all the chances I could. I have been able to restart chemo now and although it’s tough going through side effects im happy to be making the best decision for me. I wish I’d had oncotype or prosignia testing to have been able to make a more informed decision. I’ve also now changed oncologist because I couldn’t cope with the original one not listening to me or answering my questions and just being negative. It’s a tough road - good luck with everything and i hope you are able to make the best choice for you xxx

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I had breast cancer, hormone positive. Caught very early whilst looking for something else. Mastectomy and removal of sentinel lymph node followed which showed no cancer.

I was given Letrozole and was ok at first. Gradually felt worse and worse so I checked the Letrozole side effects. Bingo, they described my symptoms exactly!

Decided to take a break from the drug and my life was transformed.

What I had to decide was chances of getting the cancer again as against quality of my life. Quality of life won.

I used the predict tool also.

The computer gave a favourable answer so I’m staying off Letrozole and I’m looking forward to not being a jibbering, anxious wreck.

At my age quality of life is all :smiling_face_with_sunglasses:

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Exactly how I felt. It wasn’t the drug for me!

I’m just waiting for my hands to recover fully now.

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Hi. on 31 Oct 23 I was diagnosed with Grade 2 infiltrating lobular CIA, pleomorphic LCIS.
Tumour size 10MM
Nodes positive 7 out of 11
ER 8, PR 3, HER 2 Negative

I opted for surgery only via the NHS

Then I saw a qualified homeopathic in Richmond, London and followed her protocols.

I am happy to talk to anyone about what I chose to do, but I suspect this forum is not the place for it. If you want to contact me privately please feel free to do so.

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I know exactly how you feel. I opted out. I had a lumpectomy in 2023 with lymph node clearance. They found 5 cancerous. I changed my diet, juiced, took supplements, but it came back. 2025 i had a single mastectomy. Did radiation this time. Do i regret not doing the chemo. No. Because i read that chemo does not guarantee reoccurence. Look at Kylie Minogue as an example. She threw chemo and radiation first time as her treatment. Did it go away. No it came back. Second time she had to go through it all over again. There are no guarantees. I had 2 extra years as “normal”. I know some will berate me for using that word but now i have a new normal. This time i did radiation

Daily i feel the changes. I took letrozole for the first 2 years but OMG the joint pain so I switched to Extreseme (much better). I miss the old me but i am alive. At nearly 62 quality of life is more important to me.

There are no guarantees in life. My advice. You do you. You have to live in your body. No one else does. Good luck whatever you decide. :grin: btw Dani Trops on Instagram is awesome. Follow her. She gets it. She is one of us. Mastectomy in her late 20’s

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You’re going to find all sorts of combos. I had micromets in 2 lymph nodes. My Oncotype was 26. The doctors back then wanted to blast me with ACT x 6. I said no. I researched and decided TC x 4 and my doctor said okay. Micromets were up in the air if they were positive or not back then. I ended up with chemo, 33 zaps and tamoxifen. I couldn’t handle the side effects of tamoxifen and called it a day. I had a recurrence anyway 13 years later. I did feel like I gave it my best and who knows if the chemo kept me from developing Stage IV this time. Now I take Arimidex and no side effects. This time had a DMX with DIEP. It’s been almost 2 years and life goes on.

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I will be honest and you may not like it, but ER+ PR+ HER2- has a greater chance of recurrence and that number will actually increase each year. I was at 2-3% when treatment was done, but each year that ticked away brought me up to 20% when it came back. My MO says he sees it a lot.

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@bobcat1 - so sorry you had to stop chemo. Was it that the chemo spilled outside the vein? I wasn’t sure what you meant by wound issues?

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Hello @rockym,

This is an interesting thread. We thought it might be helpful for us to contribute.

The risk of recurrence goes down as time goes on. The longer time passes the less likely the cancer is to return. Survival rates for early breast cancer, might be of interest to some. Most people treated for early breast cancer do not have a recurrence; however we do know that some people can have a recurrence many years or even decades after their original diagnosis.

There are many factors that can influence recurrence. This is mainly the stage, type and grade of cancer.

@bluetit11 pointed out the tool Predict to help with working out statistical benefit of treatment. This can be really helpful. Version 3 is not yet validated so version 2 is the one to use. It’s also best to use ii alongside a conversation with your treatment team,

If anyone would like to ask us question or talk anything through do feel free to call our helpline. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

If you would prefer one of our nurses to call you. Please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturdays.

We are closed on English bank holidays.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes,

Jane

Breast Care Nurse

Please read the disclaimer Full details on how we collect and use your data can be found in our Privacy Policy

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i have just looked at this predict (version 2) and there i sno mention of radiotherapy as a treatment?

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Hi awesome1,

Thanks for your post about Predict V2.

Predict uses individual information about the person and their breast cancer alongside data from large research studies. However, as you mention, this version of Predict doesn’t include variables such as radiotherapy treatment and the impact these may have on prognosis. There is a newer version of Predict (version 3), which does include other factors, however this newer tool hasn’t been externally validated yet through large studies, and the UK Breast Cancer Group (UKBCG) is currently not endorsing this version it until it has been validated against international data.

Just so you’re aware, the nurses don’t monitor these posts, so you may wish to post any future questions you may have on the Ask Our Nurses section of our forum where we’ll aim to reply to you within 1 working day.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

If you would prefer one of our nurses to call you. Please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturdays.

We are closed on English bank holidays.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes,

Tiggy

Breast Care Nurse

Please read the disclaimer Full details on how we collect and use your data can be found in our Privacy Policy

As we are unable to monitor for further replies, the nurses will not see any further responses. If you have any additional questions or would like to provide feedback, please put a message on the ask our nurses section of the forum, call our helpline, email us or request a call back.

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Hi yes please some extra advice for me please. I dont know if on here it’s private?

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Jumping in on this older post because I think it’s so important to discuss. Has anyone else had experience with opting out of chemotherapy, especially recently? With all the treatment options out there, I’m curious about how decisions have evolved. If you’re considering alternatives like hormone therapy or radiotherapy, it might be helpful to consult with your oncologist and maybe eveJumping in on this older post because I think it’s so important to discuss. Has anyone else had experience with opting out of chemotherapy, especially recently? With all the treatment options out there, I’m curious about how decisions have evolved. If you’re considering alternatives like hormone therapy or radiotherapy, it might be helpful to consult with your oncologist and maybe even get a second opinion.

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