Has anybody opted out of hormonal therapy?

Hi! I am relatively new to this site. Had mastectomy and axillary clearance a couple of weeks ago and fortunately my cancers were found to be very small and grade 1 and my lymph nodes all clear. I have been told the dangers of recurrence are minimal but still put on hormonal therapy.
They wanted me to do two years of Letrozole and three of Tamoxifen, The reason being that Tamoxifen entails a 1/1000 risk of provoking cancer of the lining of the womb. However, Letrozole is not an option because it deteriorates the calcium in your bones. I am post menopausal and have alredy low bone density bordering with osteoporosis. So tamoxifen it is.
However, I have not bought it and I feel quite reluctant to do so. Why should I change a small risk for another which also entails a lot of discomfort and side effects? I would like to hear from someone who’s had a similar experience of dilemma.
Thanks a lot in advance.

Dear Nikiya, I decided against tamoxifen after a month of severe symptoms including enlarged fibroids and womb. I had a small tumour with no lymph nodes or vascular spread. Had the rads and decided to take a chance.If you would like to send a private messaged I’d be happy to talk further. You will find some very unsupportive attitudes on this site especially if you go against the trend of not taking hormone treatment
Best wishes
Leadie

Nikiya

It sounds as though you have already been overtreated by having axillary clearance and NO lymph nodes involved - didn’t they do a sentinel node biopsy for goodness sake??? Mx for Grade 1 sounds drastic but maybe it was widespread?

Anyway, you are not alone in turning down hormone therapy and I was tols, when I asked about overy removal, that Tamoxifen increases the risk of uterine cancer by 10% not 1/1000. You have to wonder at the conflicting views amongst those who are supposed to be educated in these matters.

Plenty of ladies (not necessarily writing on here) decline hormone therapy because of the various risks and side effects and often the risks from the therapy outweigh the risks of recurrence but it is an individual thing.

Touch wood, I’ve had no side effects from Tamoxifen or Arimidex … as far as I know!

D

Hi,I dont think anyone on this site would be unsupportive. people ask for others help or advice and that is what is given.Nikiya,I had grade 2,ER+, vascular invasion and 1 positive node, and have been taking tamoxifen for over a year.I have really bad sweats and flushes but will continue taking it . I really dont know what I would do in your position, maybe I wouldn’t take it,it’s a really hard decision for you to make.Have you talked to your oncologist about your concerns.Sorry I’m not much help am I.I wish you luck with your decision and I am sure others will post soon with their thoughts.

best wishes Mel x

Nikiya, I would ask your onc for survial stats with and without tamoxifen. My cancer was 100% oestrogen receptive so it made sense for me to take something to block that effect,and I’m one of the “lucky” ones that to date have had no side effects what so ever. You have got to do what is right for you with the help and advice of your medical team.Good luck with your decision.

Sandra x

Hi

In Leadie’s defence, I have noticed that she has posted on other threads about her decision not to take Tamoxifen and she has been subjected to some abuse about this.

Nikiya, my experience is: I was diagnosed with DCIS after my first routine mammogram. I had a mastectomy, they found that a small grade 2 tumour had started to develop but there was no spread to my lymph nodes and I did not need radiotherapy. I was prescribed Tamoxifen to reduce the risk of developing bc in my other breast. I didn’t have to think about the risk to my uterus because I had a hysterectomy in 2002.

I had horrendous side effects. I had hot flushes which I could cope with but I had severe anxiety - so bad it was making my blood pressure rise - and I just couldn’t function day to day. In fact, my symptoms were the same as when I was going through the menopause a couple of years ago (but 10 times worse). I discussed coming off the Tamoxifen with my consultant. He said that the benefits I would get from it weren’t worth the severe side effects I was having so he told me to come off it.

That is just my experience, lots of women have different experiences and diagnoses so you should discuss it with your medical team. I am glad I tried the Tamoxifen though. It could be worth giving it a go because some people don’t have any side effects or problems and you can always stop taking it at any time.

Hope that helps a bit.

Maude xx

hi Maude, Thanks for your support, I appreciate it. I think that some ladies on here just can’t handle any other opinions because it threatens their beliefs and ideas and so it’s easier to lash out
Best wishes
Leadie

Nikiya - you may not have seen the thread I started about refusing tamoxifen - there were lots of different opinions but everyone was supportive I think…

breastcancercare.org.uk/forum/refusing-tamoxifen-t22825.html

I am due to start tamox. this coming week but still a bit ambivalent as my benefit is relatively small - whenever I read a post detailing side effects I find my resolve crumbles a bit.

I do not think anyone was being unsupportive or abusive.

Only if genuine people diagnosed with secondary breast cancer, whose lifespan maybe severely limited, telling people to take whatever is on offer, can be classed as narrow minded.

Examples of people that were saved by hormonals or died when they did not take them have to be relevant.

I am sorry if some people think that telling the truth is narrow minded.

Our secondary breast cancer stories are being glossed over. Secondary cancer happens, even to people with very early stage cancers with no lymph node involvement.Yes, surprising isnt it?

However, we can only tell our stories (just like the people that have been cured by yogic breathing)!! We all deserve a platform.

However the decision is yours alone.

Hi Juliet…thank you…your last posting says it all for me…x
And Good Luck to everyone…whatever you decide to do treatment wise, whatever is best for YOU I wish you well…x

Thank you girls for sharing your experiences. It is very useful to read them. Dahlia: I did have a SLNB. They took three nodes and they were all clear, so I was very happy because for me loosing the LNs was worse than loosing my breast. However, the surgeon said that because my cancer was very big and there was infiltration I should have them removed.
Now reading my pathology report I do not see that is the case. The lymph nodes taken then were also clear.
I had extensive DCIS, low and medium, and three small grade 1 tumors (altogether around 2 cm). That is another puzzle, since my breast biopsy had detected grade 2. I am pleased that was not the case, but how can that be??? The opposite might happen because they might have taken tissue that is less affected or not affected, but in this case I do not understand.
Anyway there is no going back and I take it as a bonus the fact that I am not undergoing more aggressive therapies. I will be living alone so that would have been a nightmare.
Now back to the HT: I had been taking HRT until my diagnosis, when I stopped. So I believe having stopped that already counts.
I was not given any figures, either for the chances of spreading (very small) or for the percentage of the estrogen receptiveness.
I did not feel I spent enough time with the oncologist or with anybody for that matter. I have not made any decisions yet but my gut feeling is that I need to heal and rest first. I suffer from CFS (which is the main reason why I took HRT) as well and I need to count my pros and cons very well and see if I give it a go. One of the useful things I learnt by reading messages is that there is no harm done by starting and stopping.
Chipper, I did see your thread but only after I had published mine, and I posted a message too.

Nikiya

I would always say ‘give it a go’ because you never know until you try something.

Tamoxifen is a tablet you decide to take/not to take every day, not a once only irrevocable commitment. So it can be stopped at any time if necessary.

It does have unpleasant side effects, but not everyone gets them, or gets them unbearably. It is possible to try different brands; I think Nolvadex D is a popular choice???

As far as side effects go, of all the treatment I have ever had - and some of it dates back over 16 years, the one that has done the most lasting and debilitating damage was the radiotherapy. Not the chemotherapy. Not the hormone therapy.

However, I do think it’s sometimes worth reflecting on how far bc treatment has come in recent years (and how much more badly our predecessors fared before the likes of Tamoxifen were introduced), as well as acknowledging how far it still has to go in terms of a cure.

X to you all

S

I think it’s always hard to hear that a drug needs to be used for a number of years - particularly a drug that might have some side effects. However, to make the judgement as to whether or not to take it, it’s useful to determine how ER+ you are. If you are very ER positive, then in my opinion it would be worthwhile to very seriously consider the benefits of the drug and how to manage potential side effects, which of course you might not get. In my case I’m 7/8 ER positive and believe I would be utterly foolish not to take the drug that will give me the best possible prevention. I have small breaks from it from time to time but I keep myself as protected as I can. I have acupuncture for the hot flushes which has helped and drink stacks of water to prevent fluid retention which works. In a year’s time I’ll be moving onto Arimidex which I dread but again, will seek out ways to alleviate side effects and of course might find none!

One of the many values of this site for me has been to understand the potential for this diabolical disease. I can’t tell you how much I’ve valued reading the comments from women who have been diagnosed with secondary or recurring but incurable cancer. It’s a wake up call - these women have taken the time and trouble to tell us how it is whilst raising so many important issues about bc. We all know the disease is unpredictable and reading their comments pushes me forward to do what I can to protect myself Personally I don’t want to regret doing less than I could have done when it’s clear that my body has produced too much oestrogen. Mind you, I’d love to know the cause of that which raises many questions as to why we’re seeing such an increase in hormone related cancers in both men and women.

Meanwhile there is a drug called Tamoxifen and I can take it and it should do something to help. If the cancer I had were not hormone receptive I would not have that available to me so I take it night after night after night!

It’s tough knowing what to do and my comments are just my perspective. Everyone has to make the decisions that are right for them.

All the best

Gill x

Gillian - really good post -thank you xx

Thanks Gillian. As I said before in this thread, all circumstances are different and I am quite angry I was not given accurate information (I do not know how receptive my cancer was or what are the chances of it coming back). Again, as I said, I was on HRT, and dropping it means I have already cut off oestrogen supply. My appointment with the oncologist, after waiting nearly three hours, was not long enough to talk about these things. She did not volunteer any information. Whatever little info I had came from my previous (and also brief) appointment with my surgeon, which came 10 days after my surgery. I did not know at the time you could get a figure for receptiveness (only learnt that reading this site). As a matter of fact, I was not even told my cancer was ER, only that I would undergo such therapy. In short, I still have a lot to learn before deciding and I do not know who to ask these questions. My BCN is hard to find and not very forthcoming, to say the least. The breast team do not like to be “bothered” with doubts or independent thinking. I am afraid I am a thinking person and do not like to be treated like a number.
I hope I am not boring you, but I’d like tell you something: I detected something was wrong with my breast last September and immediately made an appointment with a breast specialist at the London Bridge Hospital (private). I had mammograms and sonograms (interpreted buy a second consultant). The bills were high and the diagnosis was “inflamed ducts”. The technician who did the mammograms even told me off for having scans too often and told me “the Dr says that if these ones are OK you should only come back in 18 months”. I had another scan when I was abroad and again it was “clear”. I saw the GPs TWICE and they did not find anything wrong with my breast, until I managed to get referred to the breast unit.
Again, this time I could not believe the situation was THAT bad, and I was right again. So, I am not recommending anything to anybody, but I do trust my instincts.

And of course I would also like to know WHY cancer is so much on the increase… I can’t believe the scientific community are completely in the dark as to the reason.
As far as I know, I am the first female in both sides of my family to get cancer (with the exception of a cousin but she was related through her father and anyway I think only ascendants and siblings count). I have never drunk, or smoked, or taken drugs, have always eaten a health diet, with lots of fruit and vegetables, and never been overweight…so much for healthy living!!
Of course I do not underestimate secondary cancer, or ANY cancer for that matter, and I feel terribly sorry for anybody who gets it and scared of getting it myself. But things work differently for different people. How can you weigh the benefits and risks of a drug with serious side effects when your situation is not (thankfully) bad enough to jump?

Hi Nikiya,

You’ve got a hard decision to make and without much support from your medical team. I am sorry they are not supporting you in making your decision. After all, it is your body and your future - so it is important to have ALL the information currently available.

When I had my surgery, I requested a copy of my pathology report. I keep it and refer back to it - particularly as I learn more about the drugs / disease. I was 80% hormone responsive.

If you expect problems from you medical team - do you have a friend / family member who can come with you to the appointment and advocate for you on your behalf? It’s a lot harder for medical staff to brush you off if you have an advocate with you.

I take Arimidex - and for me the side effects have been very, very difficult. Now, I am 14 months away from completing my 5 years and I am glad I took it and am very committed to completing the course - despite the side effects. On another forum, one woman said “treat the side effect - they are easier to treat than cancer”. That really resonated with me.

I didn’t make the decision to take Arimidex, my oncologist recommended it - so blindly, I took it. But now down the road, I am happy with my non-decision.

Only you can decide what is best for you - and it is the sort of thing you can delay a bit.

Gilliam G - I found an American study on AI’s - it was based on approximately 1,000 women completing a questionnaire. What they noticed is that women who took Tamoxifen first before Arimidex had less self reported side effects. If this is true, you might not experience a lot of side effects.

All the best,

Thank you Snow. I do have my pathology report… requested it immediately at the time and now read it again after receiving your message. Not a word of hormone reception… just measures, margins, location, etc.

Didnt think to request a copy of my pathology report when I got my diagnosis last week. Will be attending planning meeting next week for RT , do you think they will have a copy of the path report and could I request it there?

For what it’s worth, I’ve been on Tamoxifen for a week and havent really had any SE yet, apart from moodiness/tearfullness first few days.

gocat - I asked my onc for copy of my pathology report when I went to rads planning - she photocopied it for me xxx

Thanks Chipper. Would love to see my path report after learning bits and pieces here :slight_smile: