What happens if you stop Hormone therapy??

[ValGJ]

This is really interesting, thank you for this information. I didn’t realise the combination of Taxere and AI was what is causing the knee and foot pain, I’m not overweight and I do walk a lot but I will start taking vitamin D. I’m sure a bone strengthening infusion next week, I was a bit worried about it as you sign away your life before you have it but it sounds like it might help. Best wishes

Val

[Jill1998]

Krizzy - discuss how you are feeling with your BC nurse /GP and weigh up

the pros and cons for you - some get far more benefit than others from taking hormone therapy .I had to stop taking Tamoxifen  because of complications - I had no withdrawal issues . If you lower the dose I don't think it is effective ,so maybe not much point in continuing .Are you on AIs or Tamoxifen ?

[Agate]

I’ve refused Letrozole because I found stopping HRT so miserable and the idea of increasing those effects too much. But I’m 66, an early tumour, with a low incidence of recurrence. I’m sure I’d think differently if I were 20 years younger, with a longer life expectancy, cancer or not. For me, stopping HRT meant ageing 10 years in 10 weeks, and I prefer to run a small risk of recurrence rather than accept the certainty of poor quality of life throughout the years that remain to me, with the increased risk of dying from the diseases I’ve always thought would appear on my death certificate.

[Chick1]

Hello again Whatisdharmakaya,

Maybe I have misunderstood but I am not clear what it is that is not making sense. Are you looking for people who have refused or stopped hormone treatment to be shouting out how much they now regret their actions? 

It does make sense that some women who declined or halted hormone treatment ,eg.due to Side effects, and then have a recurrence,   will feel the need to encourage others to continue with treatment if possible for the longest recommended time. They may conclude that their recurrence could have been prevented if they had taken or continued to take.  However,  stopping or not starting treatment will not be the reason for recurrence in all cases.

Because the treatment was not taken or continued,  then this will always be a niggle for people who are inclined to think this way.   You have to live with not really knowing for certain and this can be difficult as some women have indicated whether on this forum or elsewhere.  I have an acquaintance  who strongly believes that her current secondary cancer is due to declining Tamoxifen  years ago.  But she will never know for certain.   It will not be conclusive in all cases  because recurrence can still occur even if you take hormone treatment as instructed and without fail. 

Unfortunately,  even though research has marched on,  all the different cancer nuances and subtypes haven't been identified.  There may be recurrence of a type with characteristics  similar to the original tumour. However,  some recurrence may occur where the new tumour is different, for example,  a new primary that is not hormone sensitive.  In that case oestrogen treatment is not going to prevent it.  A new recurrence does not need to be of the secondary type,  for example,  as in the case of JWD below. 

 What is known is that people who take hormone treatment for hormone sensitive breast cancer tend to have less recurrence, less breast cancer in the opposite breast and less death from breast cancer.  That is good enough for me to give it a go and also because I would be one of the people who will have a constant niggle if I don't give it my best shot. 

The way I look at it is that for some women with oestrogen positive breast cancer,  hormone treatment will prevent recurrence either  a local, new  primary or secondary or will assist positively in the treatment of secondaries. But it is not 100% guaranteed so some women will get recurrence for a number of reasons  even if on hormone treatment.  Some of these recurrences will relate to the original tumour and the characteristics of that and some will relate to reasons unknown. Hence it is still a bit of a lottery at the moment. 

However,  I feel prevention by treatment is better if possible so for myself I will do what I can to prevent for the time being as long as the risks do not outweigh the benefits.  If the side effects of taking hormone therapy were causing me unbearable misery then I would have a discussion with Oncology,  look to having a short break to see how I felt,  work my way through alternatives if able.   I would give it my best shot and only after that would I feel comfortable in my decision to decline it. 

We do not need to accept the recommended treatments but we need to make informed decisions.   In my opinion,   it is important that we get the right support in making and are comfortable with the decisions we make for ourselves  in life's lottery. 

Best Wishes, 

Chick 🐣 X

[ann-m]

There certainly are posts here posting that warning, W.
Just off the top of my head, one of the CCs Moijan, has posted about this.
ann x

[whatisdharmakaya]

This is what Im finding difficult. The doctors are saying thatthe women coming off it get recurrance so it doesnt make sense that these women are expressing or even shouting from the rooftops urging the other women to not stop. Maybe its because its secondary cancer and I havent looked at that forum. What words in search bring up the stories of warning and regret?

[JWD]

Thank you chick🤗
Will be glad when ive got though radiotherapy and then hopefully get back to normal lol whatever that is🤷‍♀️😅
You take care Jo xxx

[Chick1]

Hello JWD,

Sorry to hear about your recurrence. However so glad to hear about the successful treatment.

Try not to beat yourself up. We are so good at doing that aren't we? Recurrence could have happened anyway and could be unrelated to the hormone treatment.

Hopefully you can now concentrate on the here and now and your successful treatment.

I hope the side effects from the anastrazole and menapause reduce for you and hope that the radiotherapy treatment passes quickly and without issue.

All the very best to you, Chick 🐥 X

[JWD]

Hello thought I'd jump on this chat. I had grade 1 eostrogen positive cancer 9 years ago when i was 41 i had the choice between Lumpectomy or mastectomy. I chose to have a mastectomy followed by 2 years zoladex injections alongside with tamoxafin. I had senitol node biopsy and it hadnt gone in any lymph nodes.After 5 years my bcn said I had the choice to stay on tamoxafin for a further 5 years however my consultant said I wouldn't benefit either way by coming off it or to carry on taking it. I decided to stop taking it. I was diagnosed in June this year with a reoccurrance along the mastectomy scar grade 1 eostrogen positive like before. Thankfully ct scan and bone scan showed no spread. I had a blood test which showed i was post menopause and I was put on anastrazole and had a lumpectomy 4 weeks ago. My oncologist started me on adcal and I had a dexa scan last week and due to have radiotherapy in about 3 weeks. I've been having joint pains and hot flushes and brain fog and tiredness but not sure if this is real menopause or side effects or a bit of both. I can't help beating myself up thinking I should of stopped on tamoxafin extra 5 years as I had the choice. I'm not sure how long I will be on anastrazole for but I think if I have the choice to stay on for 10 years as opposed to 5 i will be to scared to stop but then it depends on how bad side effects get. Its a hard choice but just feel so lucky that although the cancer returned it hadn't spread and was very treatable. On paper and looking at Statistics my oncologist said I had a 1% chance of it returning after the first time. Take care everyone😊xx

[Chick1]

Hello Whatisdharmakaya, 

That must be so difficult managing the ME on top of everything else.  You have obviously been through quite a lot of distress.   I am glad the pains and discomfort have lessened for you and things have returned to normal.  It can be such a lottery with theses treatments.

Have you decided to try another type of aromatase inhibitor or tamoxifen  treatment, or are you just going to leave things as they are?  

Whichever option you chose,  I hope things work out well for you. 

Are you into Buddhism by the way?  Just wondering because of the "dharmakaya" name. 

Best Wishes to you, 

🐣 Chick X

[whatisdharmakaya]

I went from age 40 to age 90 in terms of movement ability on week 4 of the AI. All the pains faded within 3 days of stopping. The bone clickings and crackings were all over my body. They have stopped now too.

[Chick1]

Hello BizzyLizzy,

I am so sorry to hear about what you have been through.  What an absolute nightmare and everything on top of the ME.  I am so glad that you got help with your low mood and glad that you are feeling more like your normal self.

It seems to be such a game of chance how these hormone treatments can affect us. I am on Anastrazole and have some effects but nothing unmanageable for the moment.

For what it is worth, I still think it will be useful for you  to meet with  your Oncologist and discuss matters in detail.  It may be worth finding out if your tumour was strongly hormone positive or not, looking at the Predict scores of hormone treatmnet versus no hormone treatment, and looking at trying one of the other treatments with an agreement of regular reviews/contact to discuss issues in a timely manner.  It may even be useful to suggest taking half a tablet per day for a while to see if this may have a gradual introduction effect on your body.

It makes you wonder with these hormone treatments does n't it?  I think they have quite a quick effect in diminishing hormone levels and it can hit some people pretty traumatically.  Maybe they will look at gradual decline for some people so the body can get more use to the lack of oestrogen over a period of time.  Surely better trying that then people just being whacked over the head with them so to speak and then suffering badly and giving up on a potential life saver.

Take care BizzyLizzy, Best Wishes, Chick1

[Chick1]

Hello Appletree,

Good point about the chemo - especially the taxane ones.  OMG - the leg/bone pains from the tax treatment.  And even after finishing - the pain in my thighs and not being able to bend my legs due to it for a while afterwards.  Grrr.....At least my Anasty tablets started months after chemo finished (as had chemo first).

Regards, Chick X

[Appletree]

Dear Whatisdharmakaya

In addition to Chick's excellent and measured post, I would like to add my own note of caution before you give up Anastrozole.

You don't say why you want to give up on AIs, but I am presuming you are experiencing side effects which might include muscle and joint pain.

You have had 18 weeks of chemo which have included Docetaxel, which is a Taxane. You have taken Anastrozole for only about 3 weeks and it has coincided with the radiotherapy. You started the AI only about 4 weeks after chemo finished. Three different treatments have come very closely together.

I take the following information from

https://academic.oup.com/annonc/article/24/6/1443/180703

Aromatase inhibitor-induced arthralgia: a review

by Dr. P Niravath, Medicine Department, Lester and Sue Smith Breast Center, Baylor College of Medicine, Houston, USA

Published by Oxford University Press on behalf of the European Society for Medical Oncology

This review focuses on the arthralgia related to aromatase inhibitor (AI) therapy, as this is an extremely common problem among breast cancer patients which negatively impacts on day-to-day well-being.

Arthralgia is referred to as Aromatase Inhibitor-induced Arthralgia (AIA).

Extract:

Risk Factors and Associations
Many factors have been shown to be associated with higher risk of developing AIA, though the underlying mechanism is still not understood.

Obesity has been consistently linked to higher incidence of AIA. According to a retrospective analysis of ATAC data, obese women with a BMI of >30 have higher incidence of AIA than normal-weight women with a BMI of <25 and overweight women with BMI 25–30 [35].

Other factors that have been associated with higher incidence of AIA include prior hormone replacement therapy [8, 35] and previous chemotherapy before beginning an AI [35]. A history of having specifically received a taxane was associated with a higher rate of AIA, with 62% of such women developing this problem when compared with 37% who had never received chemotherapy [6].

The retrospective IES analysis showed that women with a history of baseline arthralgia or osteoarthritis at the start of AI therapy have a higher chance of developing AIA as well [8].

Whatisdharmakaya, before giving up completely on Anastrozole or on the other AIs, you might like to discuss with your Oncologist the possibility that HRT and chemo might have added to your prolems with Anastrozole, and what interventions might alleviate your problems now.

The paper I refer to above presents evidence that weight reduction, increased exercise, vitamin D and bisphosphonate therapy might all be advantagous in management of AIA.

[whatisdharmakaya]

I have ME too. Had to use electric wheelchairs for 20 years. Treatments gone really well for me apart from estrogen suppression.

[BizzyLizzy]

I have stopped Letrozole after 10weeks.

i had constant migraines two were so bad I was taken to A&E as lost use of left leg and arm on two occasions.

the Bones in my feet became so painful I couldn't walk and I had vertigo which left me unstable on my feet.

i lost my appetite and felt sick except for the last thing at night when I was able to eat a little. 

Have lost 10kg.

But the most worrying and dangerous SE was my low mood - so very low I considered I would end my life and had a plan I  got help and was admitted to hospital for a week.

i got out three days ago.

it has been two weeks now since I stopped and I can feel the SE going and feel more like my old self.

i am not as,tired - I already have ME so tired a great deal of the time.

i was always worried about taking an AI drug with my other health issues.

i have looked into alternatives- changed my diet,and know that my life expectancy may well be less if I don't take the drug but I would rather have quality of life than quantity.

i know my oncologist will suggest I try another drug and I am terrified the same will happen again.

[Chick1]

Hello whatisdharmakaya, 

It's  a difficult decision to make.  Did you stop anastrazole for particular reasons in the short time you took it?   Did you get medical support with the side effects or alternatives? Have you discussed your thoughts with Oncology as that may be the best place.   I was just wondering why you think the cancer was only in you for 4 weeks as this seems unlikely. 

You ask the question is anyone still alive who had grade 3 and stopped?  However,  the prognosis is not dependent just on grade but a whole host of factors.  Someone could reply that yes they were grade 3 and hormone positive but stopped hormone treatment and are now 10 years after diagnosis.  However maybe their their tumour was 2cm with no node involvement and an ER score of 2 etc. 

I am grade 3. still alive and on Anastrazole.  I have been on it for about a year now. I have had some problems with leg cramps etc but not where I have considered stopping. I am having one sided mobility issues at tthe moment. This is being investigated and I am not willing to blame this on the Anasty without specific evidence.  I have also had the complete works of chemo, surgery, radio, herceptin and anasty.  Yep - throwing the flipping arsenal at it.  If it comes back,  well at least I can say with treatment and lifestyle I did the best for myself. 

Charts,  tools and statistics can give us guidance only.  Even people who have an excellent predictive prognosis may end up with recurrence.  It is not a definitive tool. Decisions of treatment are personal and up to ourselves to accept or decline.  I hope you give yourself the best chance of quality and quantity. 

All the best 🐣 chick X

[Treeze]

Really interested in your post..I've never been given statistics like this, just the 2% 5% thingy about hormone blockers and not used the nhs predict as I dont know the size my tumours were.I must have been told but on the chemo everything was a blur.I know statistics arent everything but for myself I'd rather know or have an idea.I'm going to take anastrozole for the 5 years and then see.My joints are bad now and so is fatigue and mind fog.Not taking a bone strengthener infusion as ongoing treatment for a gum abscess of over a year.I had stage 3 breast cancer which I found as a lump and was seen quickly.The following month a scan showed another primary cancer in my kidney..very unusual!.. which had been there probably many months and had twisted the kidney.Got away with only 4 chemos then lumpectomy, 18 nodes removed but only 1 cancerous and removal of kidney followed 2 months later by 20 rounds of radiotherapy finished in Feb 2017.Consequent scans clear.Sounds morbid but would like to have an indication of survival rates.I was the talk of the cancer dept having two primaries apparently!

[whatisdharmakaya]

Is anyone still alive who had grade 3 and stopped?

I had grade 3, 9.5cm tumour which grew over 4 weeks. 14 of 23 lymph nodes affected
1cm lump found 27/12/17
Mastectomy 26/01/18

18 weeks chemo started 5 weeks after mastectomy (3 EC at 80% 3 docetaxel at 75%)

15 sessions radiotherapy started 13/08/17 (6 weeks after last chemo dose)

1mg anastrazole started 01/08/17

1mg anstrazole stopped 25/08/17
radiotherapy finishing 03/09/17

NHS predict says if I take anastrazole & bisphosphates I have a 39% chance of death by secondary breast cancer in 5 years, a 83% chance of having died of secondary breast cancer within 10 years.

If I DONT do the hormone treatment I have a 60% chance of having died of secondary within 5 years and a 93% chance within 10 years according to NHS predict.

But the stats dont take radiotherapy into consideration. I contacted them and they are working on adding radiotherapy into to the tool now which is wonderful.

I need to decide if to destroy my bones & joints to delay the secondary, as those who do the hormone treatment in my situation 93% of them are still dead within 15 years from secondary breast cancer.

I believe my chances are a bit better because of the following reasons:

1.The year leading up to the lump forming I had signs of death, I felt very fragile & weak for no reason even though I was only 42. Death was coming to mind a lot. I felt like I was on my last legs deep inside even though on the outside everything seemed fine. I know these signs and they are not currently present.

2. I only had cancer in my body for 4 weeks. It was removed after the 4 weeks. Then I got a ct scan that gave me an all clear.

3. I was using a HRT patch that was putting estrogen in my body when the ER+ lump formed. That is not affecting my body now. (I know I have estrone instead of estrodiol now)

4. When the lump formed I was taking curcumin, garlic oil, ginger, echinacea and oregano oil. I will not be putting my body under that kind of stress again.

5. I have removed my mercury fillings