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Refusing treatment!

12 REPLIES 12
angelrainbow
Member

Re: Refusing treatment!

Hi Cherry,

Thanks for your reply. I'm glad you found that Radiotherapy suited you. I have decided to go with the Anastrozole instead of the Tamoxifen for now and see how I get on with it. It's very early days with it yet so nothing much happening in the way of side effects - my old bones tend to ache a lot of the time anyway! 

Jane xx

CherryH
Member

Re: Refusing treatment!

Thanks for this thread - it's relevant to my queries. Personally found radiotherapy fine and never had side effects after 4 years. And anastrozole is sometimes considered the favoured AI though it can make bones ache. This is my problem now after 4 years they ache too much. I also have osteopenia but take calcium and vit D for that. love Cherry
angelrainbow
Member

Re: Refusing treatment!

 Hi June.

 

Thank you for your reply. I still haven't decided finally what to do about the radiotherapy treatement yet and I have an appointment tomorrow to see a different Oncologist. I have found a number of academic studies that seem to support what I would like to do - i.e. not have radiotherapy because of my type of cancer - not for everybody, I understand.

 

I had an interesting conversation with my lovely surgeon. I told her that I would prefer to have Anastrozole rather than Tamoxifen, she kindly agreed to this, then she told me that a recent study has shown 'up to 60 per cent of ... people stop taking the drug [Tamoxifen] before the end of five years'

http://breastcancernow.org/breast-cancer-research/our-research-projects/understanding-why-people-tre...

I have read on some of these boards that some people felt they were not supported when they had difficulties with their medication, however I am so impressed with with my Surgeon as she seemed really bothered by those statistics and I wonder if that is why she agreed for me to start on Anastrozole instead of Tamoxifen.

 

I'm so glad your treatment has been successful June and that you are continuing well.

Jane

catchpole
Member

Re: Refusing treatment!

HI Jane,

 

Im in my 60s too and i didnt have chemo, my lump was stage 2 but as oestregon related fast growing, upgraded to 3 for that reason only i was on HRT for a long time  due to like you a high r isk of osteoporosis.My oncologist said he felt as my general health so good for "a women of my age" lol and all my nodes apart from !1st one were clear and margins clear,it would do me more harm than good and i just didnt need it, radio therapy and hormone treatment would be enough,  I was put on tamoxifen as others affect bones too, Had a few teething problems with it, some flushes, but had bloating too, quite badly but now take 2 10mg tablets at different times of day and seems fine.  I had intended not to have chemo as was originally borderline anyway, but when he said i didnt need it was overjoyed.  But i too felt happier having the radio therapy, which i thought was a doddle, and tamoxifen. does reassure me feeling i have thrown as much as needed at it, It was nearly 2 years ago when i discovered lump so had my first follow up mammogram in March and all well, I feel very well but as i said i was pretty fit to begin with so guess that helps.  My oncologist was very insistent that HRT i had early menopause and had been on it for 25 years, caused my BC, so guess the test results they get must tell them.  I dont regret taking HRT for so long as my mum had osteoporois very badly, she basically crumbled away with it,it was awful to see, and i though i have thin bones as im very petite, i dont actually have it.  and the cancer was caught early so feel very fortunate. .  Hearing what ones hears re chemo, sometimes i do feel incredibly lucky not have to have had it,

 

June

 

angelrainbow
Member

Re: Refusing treatment!

Hi Flint. Yes I have osteoporosis and do indeed take a bisphosphonat as well as calcium supplements. I am making a list of medications to ask my surgeon about when I see her this week so I will certainly add Letrozole to the list. Thank you for your reply. Jane x

Flint
Member

Re: Refusing treatment!

Do you have osteoporosis? Letrozole is sometimes prescribed to women withe stablished osteoporosis along with a bishosphonate and calcium supplements to limit/halt fuirther bone damage but I imagine you are already on these treatments for your bones if you have osteoporosis.

 

Anyway, another avenue for discussion with your team.

 

 

angelrainbow
Member

Re: Refusing treatment!

Thanks Stacey. Thanks for your reply. I will ask my surgeon about the letrozole. When I was first diagnosed my surgeon mentioned Anastrozole, however, I think because of my bone problems she must have changed her mind. I will have a talk again with her and try and explore if I have any other options. Jane x

Stacey
Member

Re: Refusing treatment!

"When my surgeon put my details in to NHS Predict (I am 65), the advantages of tamoxifen was 3.5% less chance of reoccurring compared with 7% without tamoxifen, therefore a benefit of 3.5% overall with tamoxifen."

 

Another way of looking at the above is that Tamoxifen halves your chances of the cancer coming back. 🙂   Some women try a few different meds before finding one that is okay. 

 

Letrozole is supposed to have an impact on bones, I am not sure about the rest of the lot.  However, there is a an injection that can be given every 6 months to protect them.  Wish I could remember, but I've seen it in a few posts here.

angelrainbow
Member

Re: Refusing treatment!

Hi Stacey,
My surgeon said she wanted to put me on Tamoxifen as it was kinder to bones and I have osteoporosis in my back, however, she was surprised at how low the percentage of benefit was when she put it in to the NHS Predict tool - 3.5% overall. I will be seeing my surgeon this week and see if I have any alternative to Tamoxifen, and I will ask her about the Letrozole as well. And as you say Stacey, age is indeed a factor in our decisions. Jane xx

Stacey
Member

Re: Refusing treatment!

HI Jane,

 

I'm surprised that your surgeon suggested Tamoxifen because it's given to pre-menopausal women. Unfortunately, my cancer is more advanced and I am still awaiting surgery.  However, my surgeon started me on Letrozole and I've had none of the difficult side effects that some women get from Tamoxifen.  Saying that, some women don't get any side effects with Tamoxifen either ...  in a nutshell, you can always try and if you find that whatever tablet is prescribed negatively effects your quality of life you can stop. 

 

It's always a personal choice and as I am only a couple of weeks away from 65 too I understand the dilemna.  The choices you would make at 45 are a bit different when you are 65.   Because of the stage of my cancer I plan to accept whatever treatment is offered, however if I was in your position I might well opt out of chemo or radiation too.  

 

 

angelrainbow
Member

Re: Refusing treatment!

Hi Anita - thanks for your reply and your kind wishes. It’s always good to hear others’ experiences even though we are all different. My surgeon told me the benefits of Tamoxifen would, overall, be about 3.5% which considering some of the side affects seems a bit on the low side. It seems to me to be a balancing act between the advantages and disadvantages and the difficulty is which side to come down on! It certainly helps hearing how other people have made their decisions. Jane xx

Anita
Member

Re: Refusing treatment!

Hi Jane - it really is a difficult one. I chose not to have chemotherapy because it would only be a 4% benefit & I thought it wasn't worth the possible side effects but I wasn't given any statistics re radiotherapy or the hormone treatment. As I'd 'refused' chemotherapy I never actually thought about refusing radiotherapy & felt happier with it as it was a more targeted treatment. And I didn't refuse the hormone treatment as my cancer was 8/8 receptive to oestrogen. But as you say we are all different. I had to get my head around how I would feel if the cancer came back & I hadn't had chemotherapy but then I knew I could have had it & it still could have come back. Give yourself time - I presume you are being given time to decide - but at the end of the day it has to be your decision one you feel comfortable with. I certainly would never tell anyone what to do. I know this probably hasn't helped, I hope you get a lot of opinions that might help you with your decision. Wishing you all the best with whatever you decide xx

angelrainbow
Member

Refusing treatment!

Not wishing to upset anyone, but I could really do with some advice as I'm in a real quandry as to what to do. I realise we are all different as are the cancers.

Has anyone decided to forego either radiotherapy or tamoxifen - or even both of them?
My lovely surgeon has recommended tamoxifen and radiotherapy. So here is my dilemma…. When my surgeon put my details in to NHS Predict (I am 65), the advantages of tamoxifen was 3.5% less chance of reoccurring compared with 7% without tamoxifen, therefore a benefit of 3.5% overall with tamoxifen.

Similarly the advantages of radiotherapy was 1% chance of reoccurring compared with 4% without radiotherapy, and therefore a benefit of 3% overall with radiotherapy

My 8mm cancer was found in a scan of my left breast. After biopsy it was found to be stage 1, grade 1, slow growing, ER positive and HER2 negative. I had a lumpectomy and SNB. My margins were found to be clear and also the nodes were clear, so cause for big relief.

If the cancer had been higher grade, larger and faster growing and spread then it would be a different story, I wouldn't need to ask about this as the percentages would likely be higher for having tamoxifen and radiotherapy.

My worries are about all the long term side affects, particularly surrounding radiotherapy, compared with the fairly low reoccurrence percentage decrease that I would receive from radiotherapy with tamoxifen. I'm not sure the risks outweigh the benefits, in my particular case is it a case of a sledgehammer to crack a nut!

I would love to hear if anyone else has had this dilema with low percetages?

Also posted this in the Radiotherapy thread. Thanks everyone.

Jane