Choosing cancer risk over medication risks

Life after a breast cancer diagnosis Coping with fear and anxiety
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Wow! What a lot to catch up on in this thread! Thank you ladies for sharing all your views and personal experiences.

Thank you too @Kay0987 , @MistyK and @destiny3355 for your kind words of support.

So yesterday I had my appointment for the biopsy results and it turns out the cancer is slightly different to the previous one, in the fact that it is HER2+ this time, but still hormone receptive, so it could well be that the original cancer has mutated as it is close to original lump site, or it might be a new one.
It may have come across in my last post that my consultant wasn’t personable/ empathetic to my concerns, but this was not the case at all. I do feel that the doctors in the different departments tell us and push us to choose treatments because they genuinely believe they are the best course of action in most cases, but as a few of you have mentioned, sometimes for whatever reasons, one doesn’t feel it’s the best choice for oneself. But they have to have their say and express what they feel you SHOULD do - it’s just I am terrible for feeing pressure and assuming guilt for not wanting to follow their recommendations to the letter.

Anyhow in yesterday’s appointment, I was given 2 options: the recommended one was another lumpectomy (as lump is small at 9mm) with SLNB followed by RT. The 2nd option: mastectomy if I wish not to have the RT. Both of these would be followed with some form of HT to be ‘debated’ as the consultant put it, at a later date.
Of course it is only possible to have the RT as I didn’t have it last time. With timings in my treatment journey RT would have only started in January anyway, and I had found the new lump mid Dec.
Anyway, I have opted for the lumpectomy followed by RT. I will look into this Respire link that was posted as it sounds very helpful and important to try to minimise possible negative impact on the lungs. I have recently started looking into doing a breathwork class as I know I don’t breathe properly (forgetting to breathe when I’m concentrating etc) and deeper breathing is so important.
My operation date is set for the 20th - the day before my birthday - well I guess I won’t be working on my birthday this year!
The RT will probably start a month after the op, once everything has healed. Fingers crossed for no lymph node involvement.
Wishing everyone well with the difficult decision making and respective journeys.
X

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barca541

Did you mean to post on this thread? You seem a little peeved as if someone had insulted your intelligence, which I don’t think anyone above has. You seemed to address a comment to an Ana (no one on this thread by that name).
Thought I’d alert you in case you wanted to redirect this post to a differently intended thread/topic.
All the best.

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Hi and thank you for your wide-ranging post, isitreallyme.

This cautionary tale does highlight what can happen even with adjuvant therapy, or possibly because of it (Tamoxifen) in the case of your mum, and without it as in the case of your sister-in-law.

I don’t know enough detail about my family cases to use that as data from which to make choices. The older generation were always very private about such things and they weren’t discussed openly.

My paternal aunt had breast cancer aged 21 (around 1941) and had a brutal single mastectomy (presumably lymph node removal as she developed lymphoedema, as I have) but no idea about other treatment.

My eldest sister was completely phobic about dentists, doctors and hospitals - never went, not even for the births of her 2 children. She was ‘suddenly’ (we all thought) taken ill, aged 65. It was 36 hours between admission to hospital and her death; that’s how long we knew she’d developed breast cancer (over the past how ever many years - we don’t know) which had spread everywhere. No treatment, obviously. Also, no idea about symptoms or the biology of her cancer. Nothing to go on, or learn from.

My other sister has had breast cancer 3 times now, from her mid-40s, all on her right side (I believe), possibly with spread to her brain. I’m vague because we have been estranged for 10 years now. However, we weren’t so during her first and second incidences. But I didn’t probe for minutae at the time because I didn’t know it would become that relevant. She took the BRCA1 and 2 test- negative so no need to test me. At that time, I didn’t even realise there were different breast cancers; she didn’t elaborate /may not have known herself. She had single mx with reconstruction and was put on Tamoxifen (before AIs were developed). Don’t know current situation.

At the time of her 2nd diagnosis, I sought advice from consultant re prophylactic double mastectomy who was open to discussion. Only attended one psychotherapy meeting with a nurse(?) - so patronising. Was still sitting on the fence when a chance remark from a cousin about “why have surgery before you need it” stuck in my mind. In the event, I chose not to. Oh, how I regret that decision so much now. I wouldn’t have developed either breast cancer OR needed the axillary surgery that resulted in the lymphoedema OR be living the rest of my life with the inevitable concern about recurrence. Hey ho.

So 
 DMX (ILC in one, invasive mucinous cancer in the other), axillary clearance left side, (chemo not considered beneficial with Oncotype DX scores of 9 and 7), left chest wall radiotherapy, 10 months of Anastrozole and 2 x bisphosphonate infusions later, I have now decided to come off the drugs.

The whole business is a minefield. I’m not 100% sure that I’m doing the right thing even now. I get why some of you want to do everything you can to perhaps make a difference, in spite of grim side effects.

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Thanks for this further info, jetr.
I will have a read out of interest, but with caution :wink:

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Hi blitzen52

I totally, utterly get it. If I was told ‘recurrence’ or ‘metastatic’, I’d be looking at things from a whole new perspective. At the moment, it’s an ardent hope that I will be lucky.

I hope you will keep well and live with the bastard for a very long time. xx

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Hi again

Well, I guess you were as prepared as you could have been for this new development, having found a lump, but it’s still a better outlook than it might have been. I’m sorry it wasn’t the best, but now you’ll crack on, knuckle down and deal with the practicalities. You just do. It’s remarkable how we cope once we know what we’re dealing with and when there’s a plan. Keep on trucking, girl. Sending big hugs for the times you’ll wobble.
GOOD LUCK. Keep in touch.

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Hi there - new to the forum but absolutely fascinated to see the candour with which people are discussing the issues. I am about to turn 60 which is scary enough in itself
 was prescribed letrozole but with a history of joint pain (now I think related largely to peri- and menopause - undiagnosed) and a discussion with the oncologist, I have agreed to try tamoxifen instead. Slightly concerned by your ‘worst of all worlds for someone in their 60s’ comment - can you give me a bit more info on what you think. I haven’t started the tablets yet (radio finished November) as I’m terrified of SE!!! So any info would be amazing. I plan to start (once I get over a cold) but not continue if SE affect my quality of life. Thanks!

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Hi there - my second response on this thread!!! I’m sorry your oncologist was unsympathetic. Although my cancer was different to yours (no chemo) my oncologist could not have offered more empathy. She instantly said we should try tamoxifen bearing in mind my history of joint pain (now much better post-menopause) and was equally supportive that should the SE be intolerable and negatively affect my quality of life that she would support me stopping the HT. I believe that once we’re in the 3rd act of this fabulous thing called life then quality far outweighs quantity. I have an 87 year old mother who is chair bound with dementia so in my view make the most of the best of it while you can! Good luck!

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Thanks misty
It’s such a complex disease and one which can completely throw you off balance. So many combinations of drugs/ therapies/ surgeries etc and when in a state of panic, you try to do what you think is right, based on the guidance given by the relevant medics.

Your elder sister; oh my!! How she must have suffered? It is scary beyond belief!

I do indeed to live with the imposter, whom I could even name as “ the beast” which has decided to reside ( uninvited) in my lung.

Xxx

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Hi @ktnbi I most certainly don’t want to put you off taking Tamoxifen particularly as it IS better for bone health than the AIs so probably better not to go into the side effects. All I’ll say is there are some SE which are the same between the two and some which are very different. Tam works in a different way to AIs and is an older technology. I’m on Letrozole and it does one simple thing which is block the enzyme aromatase which converts fat cells into oestrogen (you probably know this). That’s all it does. It is the reduction/obliteration of oestrogen that causes the side effects although some people feel that the coating on the tablet can add to them. I like the simplicity of it. I admit that I’m not a very good patient in that, if the creaky knees get too much, I stop taking it for 6 weeks and the joint pain goes. In the 16 months I’ve been taking it, I have had 3 such breaks. The first was with the agreement of the oncologist and the other two off my own bat. I take it because my histology was Er+8/8 Pr+ 6/8 HER2- so very receptive to endocrine treatment. I have a very good friend who has metastatic TNBC and is in a very bad way. I look at her and think “that could have been me” so I take the damned thing. I’m on it for 5 years although I know I won’t finish the course.

The truth is you may get some SE, although many do not, and they may be manageable or they may not. You won’t know if you don’t try them. Without knowing your tumour’s histology, it sounds as if you are in a reasonable place if the oncologist would be amenable to you not taking any. I guess it comes down to how risk averse you are. To be absolutely clear, I would never urge another individual to take the drugs nor urge them not to take the drugs! It has to be a personal decision based on conversations with your medical team, your family and friends but mostly with yourself.

With regard to your mother, it breaks my heart that she is living with that bloody horrendous disease. I gave up work to care for my mother when I was about your age (you Spring Chicken!) as she lived with vascular dementia. The fact that I may develop dementia plays a big part in my personal plan for accepting current and, potentially, future cancer treatments so I do understand your carpe diem approach. I haven’t answered any of your questions so apologies for that but I wish you the very best on the road to a cancer-free future.

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Hi - yes I was replying & posting on this thread? Sorry I don’t understand why it’s been misunderstood. The reply was to your very first opening (scroll back to top). Starts with “ Why is there so little conversation around rejecting treatments (particularly AIs / Tamoxifen) ??“ and finishes with “ I would be interested in anyone’s opinion on the matter.“. I have done precisely that. I chose not to reply to your question as to why there weren’t more of us saying no. I was simply saying that having done our own research we have come to the conclusion to say yes. I did not intent to offend or denigrate, and accept that we are all capable of reaching our own conclusions and possibly we should all be happy with that. No peevishness, an attempt to explain. Oh and I am Ana - happy to lift part of the veil - I was signing off, not addressing Ana. xx Ana

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Hi all, first time I have commented on this site as I felt bad saying I refused radiation, and hormonal therapy ( tamoxifen) after Lumpectomy last June. Reading some of your stories on this site, just killed me, and for me to say I refused treatment, when I know most of you have young families to look after and be there as long as you can for them. I am 75, fit as fiddle, and felt the next few years I want the same quality of life I have now. After surgery, I went back to my normal life, as I have no one to look out for. I didn’t mention to anyone I had breast cancer, and as far as I am concerned life goes on as it did before. I have put it out my mind completely, cancer was cut out, I’ll have mammograms yearly and take what comes. I do wish you young mothers all the very best, and if I had been young, I would have taken all the treatment that was out there. love Dolly 75

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Good on you @dolly75, never apologise for your decision or feel guilty about it. I was 66 at diagnosis and treatment. Had I been 10 years older, I wouldn’t have bothered either but I have a target of 80 in my head and 14 years seemed a stretch without having some treatment. I have never been more convinced of anything than the belief in quality over quantity when you get older. Have a good life, Dolly.

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Yep, there’s been lots of discussions around this just not necessarily under headings specifically like yours. I had a high grade breast cancer in 2010, followed by chemo and radiotherapy. I was put on hormone inhibitors but just didn’t get on with them and for the 4% gain in it not returning wasn’t enough so I stopped. 2023 and breast cancer returned, grade 2 reoccurance :person_shrugging: really not so bad, had a mastectomy was offered tamoxifen which I tried, didn’t get on with that either so for the meagre 1% it offered as no return I stopped it. I am very happy with my decisions each time, have maintained a pretty good quality of life now 68 going on 69. If I get another 10-13 years I’ll be happy :blush:

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Tigress, thank you so much for your reply. Brought a tear to my eye, as your the only one outside doctor and hospital that know I have had breast cancer/ surgery. You made my day. I wish you all the luck in the world. love Dolly75

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This is a question for those ladies here who have previously taken a 6 week AI medication (letrozole or other) break. How long was it before you noticed a tangible difference in side-effects, i.e. reduced joint stiffness etc
 Was it close to the 6 week mark or much earlier?

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For me it was towards the end of the six weeks but early enough to know that the joint pain does go when I stop the drug. I know women who have done 5 years on an AI and it took on average 9 weeks for the joint pain to go. This is very much anecdotal though.

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Blimey @dolly75 I know you’re fit but how on earth did you get away with looking after yourself following surgery? I thought I wouldn’t need anyone but my brother and sister-in-law insisted on picking me up and having me at their house for 5 nights. Just as well as I didn’t stop vomiting for 36 hours due to the anaesthetic and liquid morphine :face_vomiting:. Big respect to you.

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Some of my pain and stiffness ( lower back , fingers on right hand ) improved after only 48 hours some improved gradually over a period of weeks . I’m not convinced that my knees have ever been quite the same though.

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Hi Misty K I had a G3, HER2+, ER+ 8/8 tumour in 2015. I initially took tamoxifen but it made my hair fall out & I had just had enough by then after 18 months of chemo, Herceptin, radio etc etc. I read some research suggesting that a reduced dose of 2-5mg still offered some protection without the side effects & moved onto that. My oncologist said all the research was based on 20mg but conceded that she does sometimes prescribe 10mg doses. My joints were aching as well as the hair issue & I decided to opt for quality of life, potentially over quantity. I’m not advocating that approach for others, just sharing mine. I did a lot of research on natural approaches & also take DIM, eats loads of cruciferous veg & generally adopted a much healthier approach to life. If you are considering coming off your hormone meds I would recommend looking at canceractive.com & searching DIM. The other issue, mentioned by others, is understanding relative risk vs absolute risk. If you are told your tamoxifen reduces recurrence by 1/3 or 33% & your risk of recurrence was 3% in the first place taking the drug will reduce the chance of recurrence from 3% to 2%, i.e. by a 3rd. 33% sounds huge & any right minded person would feel that they would be insane not to take the drug. However the absolute figure is only 1%. Some might say any reduction is worth having & others might feel that being bald with really painful joints isn’t a great trade off for that benefit. We are all different & we will all have to live with the consequences of our decisions so it’s important to do your research & make your own mind up. Good luck everyone. Xxx ps for any HER2+ ladies canceractive also suggests natural substances that reduce HER2 expression & production.

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