Choosing cancer risk over medication risks

Deciding what treatment to have or refuse is a complete nightmare😩
I was diagnosed with triple positive IDC Grade 1 breast cancer in November & the consultant said I would need chemo, radiotherapy, Herceptin and tamoxifen; she repeated this at my post op appointment in January. The Oncologist then shocked me at the end of January saying she was not recommending chemo. It really sent me into turmoil after 9wks mentally preparing for chemo and the consultant being adamant it was required. In further discussion, the oncologist said I could opt for chemo if I want it but she feels the 0.8-1.2% higher chance of survival didn’t warrant the risks - prognosis is so good just with radiotherapy and immunotherapy. I’ve agreed to follow her advice and not have chemo but know I’ll hate myself for not “throwing everything at it” if the cancer comes back.
I only started Tamoxifen yesterday and have my first Herceptin injection 16th. Worried about the side effects, especially potential heart damage and blood clots, but I don’t feel I can refuse anything else after saying no to chemo - the fear of regret if I did and it comes back. I’m 50 and no sign of menopause but hard to know as I was on contraception until November which meant no periods for years. Unsure if they’ll check for menopause when I get bloods taken at the pre assessment appointment for herceptin :woman_shrugging: I know the oncologist said I may be swapped from Tamoxifen to something else depending on whether periods return. So anxious over side effects but feel I need to trust the Oncologist

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Can you say no to treatment, i was given 2 options 1. Surgery again and radiotherapy 2. Radiotherapy and hormone therapy…i have a 10 month old baby and really don’t want surgery again but i also dont really want all the side affects that comes with hormone therapy. Im 39 and 3 weeks post op if they got all the cancer why do i need more

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Dear isla_rose, welcome to the forum where you will find lots of love, help and support. I’m sorry to hear of your predicament. The very important question that you posed at the end of your post is the one to ask your treatment team. Macmillan also have an excellent booklet, available to download from their website, called Making Treatment Decisions. Yes, you can refuse treatment. No treatment can be given without your consent but you need to understand the risks and benefits of doing so. All treatments carry risks and benefits and all may have side effects. If only there was a way of knowing in advance how a treatment is going to affect us but there isn’t. A call to the breast cancer now helpline and/ or a chat with someone at your local Maggies centre or local cancer support centre may also help to clarify your thoughts. You will know instinctively when you have made the right decision for YOU. Sending love from Tulip x

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If they have got it all then it’s hard to understand why more surgery would be needed are you sure they said that they got it all ? .Sometimes it’s hard to take everything in when they’re talking . Get a paper and pen and write down all your questions . If you ring the helpline here and talk it through with the Nurses they may be able to clarify it for you and help you make an informed decision . Otherwise try contacting your BCN.

They can’t make you have treatment they can only strongly recommend what they think will be the most effective treatment to give you the best outcome . You have been given 2 options but they will be keener on one than the other and you need to know why that is.

Any treatment has potential consequences . I had radiotherapy but abandoned hormone therapy because I was struggling with the side effects and my risk of recurrence and spread was very low due to the type of cancer I had . Many women don’t have severe side effects with it - but you don’t get to hear about that because they aren’t talking about it .

Firstly you need to find out why they’re recommending more surgery and what kind of surgery . Can you get them to give you best treatment option as a percentage ? There is a scoring system called PREDICT which can help to work out how much benefit / likelihood of survival is up to 15 years and how much that can be increased with radiotherapy and hormone therapy . They should also give you a score with the extra surgery factored in .

Wishing you all the best
Joanne x

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Thank you for replying, they haven’t taken enough of the marin around it, I’ve just spoken to my BCN and she explained the surgery would be nothing like ive already had they just need to take that other little bit so i think i’m going to go with that, im very sensitive to any hormone related medication anyway and dont fancy taking a tablet for 5 years xx

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I see - if I was you that’s what I would go for though I understand when you’re only 3 weeks post- op that’s it’s daunting . Glad you got it sorted out xx

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Most of us fear death more than side effects there’s no happy ending if cancer recurs elsewhere which is way more likely in the long-term if you don’t follow the course of meds . It’s pretty simple . In my case I have had aching joints sciatica and other aches and pains but still here 5 years on and hopefully many more . I have 5 more years on Letrozole and never miss a tablet also take Vitamin D as prescribed and checked out by GP regularly for adverse effects . Way more sensible than ditching the drugs which help us survive

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Hi I’m honestly thinking of stopping letrozole for a while the night sweats and all the other side effects have drove me to breaking point I also take sertraline for depression and anxiety does anyone have views on natural remedies xx

Hi Jayney! There isn’t any natural remedies that show statistical evidence of lowering estrogen. And of course everyone needs to weigh risks versus rewards but there are some medications that can help with side effects especially hot flashes. Perhaps a frank talk with your doctor is in order?

Hi, I had a lumpectomy in August 23 and radiotherapy finished at end of October. I started Anastrozole in October.
My 11mm cancer was found through routine mammogram and was hormone receptive but luckily only one lymph node was taken. I was informed that margin of lumpectomy and sentinel lymph node were clear of cancer.

I am 66 and having a telephone consultation with my oncologist next week. I plan to ask some questions about the benefits of Hormone Therapy and my age as I am having menopausal symptoms.

I hope that everything goes well for your future.

Thanks @donutf I hope you get the answers you need to go confidently on to the next steps, whatever you decide they will be.

Thank you for your kind words.

I know this is an older post, but I have just rejoined this forum after 5 years. I have been taking Anastrozole for 10 years now. I am due to stop in March but I have requested that I continue taking it as my cancer was strongly ER+. Although I was discharged from Oncology, my gp said I had to ask them to re prescribe. Well, they have said no. Apparently, I have done the treatment and they have discharged me and that is that. I am pushing this because the anxiety I suffered throughout my treatment and afterwards was crippling. The fear of a recurrence is making me very depressed and I at least could go about my daily life knowing I am doing all I can to try and stop it coming back. I cannot understand why I cannot continue. I have taken it for 10 years with no one checking me, so why the reluctance to let me continue?

Sorry to hear that you are not being helped with your request.

Reading other messages seem to agree that 10 years is the maximum time for the medication.

I would like to think either your GP or oncology team would be willing to have a discussion with you to explain the reason for you not to continue.

Sending best wishes that someone will help you.

Spoke with oncology nurse today and I have agreed to stay on Anastrozole for another two months and then make contact if I want to another tablet.

I am 66 and am anxious about recurrence because of my age that is why I’m taking the medication.

I hear you @donutf, I’m 68 and also very worried about recurrence which is why I persevere with Letrozole. At least you have a plan now and a dialogue with the oncology. Good luck with it.

Hi Tigress,

Thanks for your message.

I hope we both have a long and healthy future.

Best wishes
DonutF

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Hi Misty
I refused chemo treatment after my lumpectomy
Two years later, breast cancer moved to bone
So Stage 4
I’m now on Verzenio and a monthly bone strengthening monthly injection
Make of it what you will

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Thank you, jelly12.

Quite significant differences in our circumstances, I guess. I had double mastectomy and axillary clearance at first, relatively early, diagnosis, wasn’t prescribed chemo, did have radiotherapy, so just the hormone therapy declined (after trying for 10 months). Nevertheless, everyone’s experience feeds into the picture, so I thank you very much for your contribution and I wish you as well as you can be for a long time yet.

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Just acknowledging the post directed to me from you, hettie 123. Thank you. As others have picked up the baton with this conversation (and as I have nothing relevant to add), I’ll just send my very best wishes with either achieving your aim of continuing the medication, or alternatively finding the right reassurance to allay your fears. Good luck.

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