Anyone decided not to take tamoxifen

Going through breast cancer treatment Hormone therapy
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Hello this is my first post, I had surgery 5 weeks ago - wide local excision , 4 nodes removed, clear margins and no node involvement so due to start radiotherapy next week, I have decided not to take tamoxifen as I think I will take the chance of cancer not returning although it was hormone receptive 8/8 , has anyone else taken this decision , my cancer was picked up at screening so I had no idea , the past two months have been awful as I was very fit and healthy , never taking any meds etc so the thought of being on tabs for 5 years I can’t handle, the looming radiotherapy is giving me sleepless nights, just wondered if anyone else declined treatments?

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Hi Ella,

Obviously we will decide what we feel we need to do, but I personally, would find it very difficult to deal with any recurrence if I decided not to, or at least try, the recommended treatment plan.

Dealing with any recurrence would involve further extensive & difficult treatments which I would prefer to prevent if at all possible.

Please don’t be put off by, or pre judge, tamoxifen, many women are fine on it, or at least find any side effects quite manageable.  Understandably, those with problems will report it. It certainly did not help my anxiety by continually googling it before starting it!

As it turned out, I’ve been fine on it, but I wouldn’t have known if I hadn’t tried it in the first place.

If you haven’t already, have you discussed this with your team? 

Good luck with your decision.

ann x

 

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Thanks for all your comments giving me something to think about, I have discussed with the surgeon who said to get second opinion from oncologist who agreed with the stats that there is a 5 percent risk of recurrence if I take tamoxifen as opposed to 7 percent risk if I don’t take it . Think I am just overwhelmed at the moment and everywhere I turn there seems to be something about cancer , I just can’t see how I will get to the point of accepting the diagnosis, but appreciate your advice , thankyou

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Hi Ella

I had a lumpectomy, no node involvement and haven’t had to go through chemo. I started Rads last week. 

So we sound like we are in similar positions with our treatment. I started taking tamoxifen on the 1st November and for me, so far it has been ok. I can’t say it’s been side effect free, but what there has been, has been ok. I’ve had one proper hot flush. I don’t seem to get cold anymore which is fine at this time of year! At the start I had a couple of mood swings and a few days of trapped wind, but now all that has stopped. 

I didn’t even contemplate not taking the pills. To be honest, there was never a discussion with the doctor about it, I was told that it was routine, a wonder drug, and here’s your prescription. May be I should have questioned more, but in my kind, I was being given something that COULD prevent it coming back. No matter what the chances are, big or small, I wasn’t going to risk not taking it, or at least trying. 

Only you can make the decision in the end, but do it with the support and guidance of the medical team. 

Good luck!!! X

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Hi ella again,
Just a comment about radiotherapy, as with all of this the prospect is often far worse than the reality, as I have said elsewhere, oddly I quite enjoyed radiotherapy as you get to know the team & others whose appointments are around the same time. The sessions are fairly quick, usually in & out in 10 minutes.
Going through treatment is also an anxious time, but you will get through this & move on. Like me, thankfully, screening did its job & caught it early.
ann x

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Hi Ella

I really feel for you, we’ve all been in your shoes at the beginning of this, it all sounds so daunting doesn’t it?

I made the decision that I would try and stick with all the things recommended for me, and if I had problems then to think about it again at that stage.

I’ve just had my first radiotherapy session to day, it was absolutely fine.

 

For me, it’s important to feel that I’m doing all the things that are under my control, to stop this coming back. At the moment this has taken a wrecking ball to the last six months, but in January my treatment will be finished and I can start to move on. But if this recurs, it could be a whole different scenario, and I’d hate to look back and think I wish I’d done xyz.

 

But we’re all different, you have to do what’s right for you. I hope you can find the support on here to help you with whatever treatment you decide on. Good luck!

 

 

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Thankyou ladies for advice and thoughts, think I am going to have my radiotherapy then re visit my decision on tamoxifen, I think I maybe trying to feel in control of my treatment rather than just going along with everything. It was so scary getting the diagnosis as I am sure you all understand and I am terrified of it coming back but I seem to have a mental block with taking meds for 5 years, I do have some counselling sessions lined up for January so hopefully that will help. Thanks again and hope you all keep well x

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Hi

i have been the same but on Letrozole. I have had horrible side effects on it and am currently taking a self imposed break. The drugs do. To stop recurrence but only lessen the risk. It is still possible to have a recurrence with the drugs.  You have to do your research, get a 2nd opinion if needed and base your decision on that. I have not had much success with my medical team despite leaving messages to discuss this no one has got back to me.

 

Good luck with what ever you decide x

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I was the same I was first diagnosed in 2016 went on tomxifen for a few months and took my self off it. I was 29 and couldn’t cope with the symptoms… I had a double mastectomy along side… well nearly 11 months after I found another lump and in 2017 the cancer was back and again I decided against hormone treatment and opted for a lumpsectomy and Radiothreapy… I thought that was it it’s gone and iv my best… we’ll hear I am in 2018 and have just been diagnosed for the 3ed time iv had another lumpsectony and now must have hormone therapy…
Iv opted to have the injection as I found for me taking a tablet everyday was a reminder of the cancer… I think personally blocking any chance of not having a reacurrence our weighs the risk o treatment… I couldn’t cope mentally taking tablets but by stopping u feel is why for me it has come back each time… at 31 now I still worry and stress about what it’s going to be like going threw hormone treatment again and not been able to relate to people my age … but we need to give ourselves he best chance… you do what you feel is right by geyvas much information and have time to let it sink before making any decisions:) all the best xx

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Hi All,
This is my first post and may ramble at times. I was diagnosed with breast cancer in 2011 I found a very small pea sized lump after my breast had dipped ( which I ignored for months) had chemo in July and radiotherapy started in December (Elle it really is not that bad, it will make you tired and is draining having to go every day. Be mindful of you burn so try to wash very gently in the place where they blast) and have been 7 years cancer free ( mammogram was clear in June) I was prescribed tamoxifen and have taken it for the last 7 years, however in 2016 I had to have a full hysterectomy as I started bleeding ( periods had stopped during chemo) due to lining of the womb being 23mm thick ( tamoxifen causes the womb to thicken as a side effect but they expect it to get to about 5mm). To cut a very long story short for the last 2 years I have had a constant battle within my head, I have been in setraline since 2014 (a car jacking started that off). The mood swings have been horrendous to the point where my marriage is on the line because I cannot talk without getting extremely frustrated and angry. I went to my GP a few months ago and u saw our amazing nurse who referred me to the menopause doctor ( chemo causes most women to go into the menopause). I went to see the doctor and was explaining how I was feeling, angry, frustrated, unable to communicate, suicidal and all of those horrible emotions and I explained that I had had breast cancer and he asked what medication I was on, I told him Tamoxifen and he said there is your issue!!! I was taken aback as this is a medicine making me better and yet it was causing me so much pain. Anyway he explained that with the menopause and all of its symptoms and the lack of estrogen ( as now I have none) and the fact that the tamoxifen attaches itself as a receptor ( it now has nothing to do) the two are constantly fighting a battle within my body and that my brain and body cannot cope with this war!!!. After talking some more and getting a better understanding I felt so much relief. Hesaid he would contact my consultant and suggest that they change my medication from tamoxifen to Letrozole pending a normal DEXA scan ( as this one weakens your bones considerably). I have stopped taking my tamoxifen and am awaiting a GP appointment to get my prescription for my new medication. Anyway just wanted to throw my experience out there especially the effect it has and continues to have on my marriage. Thanks for reading Tracy

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Icklemisspink - That makes a lot of sense, especially as I presume you’d also had your ovaries removed.

 

I tried Tamoxifen for two months after my 2nd mastectomy 2007, but found it exacerbated my existing depression, which then later also seemed to worsen at my natural menopause anyway at 50, 2009  (probably also due to the cessation of oestrogen!). I’m 10 yrs following without any BC recurrence/secondaries. But, not wishing to be a doom-monger, or neither condone not taking anything, I’d also lost a friend to widespread secondaries, who’d been taking Tamoxifen, which also affected my own decision.

As so many others have said, It’s all a personal thing really. Some feel happy and glad to have it as possible extra armourment.

Lots of love to everyone xxxxxx 

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This is my first post here.  IM very thankful to have found this thread.

 

Medically, the basic gist is I completed a dobule mastectomy and the pathology report showed that in my “healthy” breast I had a DCIS of 2mm. Noone had known about that, and my doing the double mastectomy I avoided a biopsy and finding in that other breast.

 

It also turns out there were diffuse small tumors in the bad breast that had the 3cm tumor (which they thought was a 2cm tumor) and I had chosen not to biopsy those because I wasnt going for breast conserving surgery. So it turns out my decision to get the double (which was not pushed on me at all) was the right choice. The surgeon was happy and impressed. “Sometimes the patient is right”. 

 

Anyway they got it all out and all areas tested were clear of cancer- she made sure she got EVERYthing tested to make sure she didnt leave me with any cells. There was no spread to the sentinel nodes. So thats reassuring.

 

Im waiting now for the genomic testing of the tumor. That will determin if they recommend chemo, which I will decline.

 

But nothing has disturbed me more than the issue of tamoxifen which I too have pre-determined I will decline, and have already encountered pushback when I havent even met with a medical oncologist yet. My surgical oncologist  said she doesnt hear complaints about sexual side effects but vaginal side effects are a known common side effect and one I consider completely unacceptable. I also have a past history with a vaginal condition that has been in remission for a long time now but I suffered with for over 8 years. Even increased vaginal discharge could flare that up, and thats going to kill my spirit.

 

So for that and other reasons Ive kind of made a decision, but on the other hand I have realized I may be freaking myself out unncessarily by dreading the ramifications of a decision I have not even made. I will certainly revisit after I am done with my surgery, which will be getting the final implants before the end of the year.

 

Also still ahead is the genetic testing. My mother developed breast cancer at a much younger age (diagnosed around age 35 but she had that tumor for years before that) and long story short she died at 50, dealing with two recurrences. With a history like that you can see how I might feel doomed, and I did, for 24 years, and then I got the diagnosis I did  Its like I had a stalker all these years and noone believed me, he got into my house and I called the cops and they got him, and then found in his car the rope and the bags and the map to my place. GRIM! But, didnt I also kind of get lucky?

 

BTW the ONLY reason they found it is because I insisted on an ultrasound after they wanted to send me home with a clear mammogram. I said “Nah, I want that ultrasound that I came for”. Talk about the air getting sucked out of a room when she found “a mass”.

 

So my dense breast tissue is gone and maybe it sounds crazy but I want to live whatever years I have a with a healthy non altered body. Im already a health weight, now within 10 lbs of my medically ideal weight (an absurd 115 lbs because of my small stature and frame) but I want to exercise and will gladly exercise 5 hours a week instead of taking hormone suppressants. I also already eat the diet that is recommended- I can always make improvements of course. And I have drastically reduced alcohol from the less than two glasses a day to under a glass a week.

 

I’ll do anything but kill whats actually healthy in my body when by all available evidence I am currently cancer free.

 

Ive gotten a bit depressed here and there, thinking Im just kidding myself, my goose is cooked! What if I make the “wrong” choice? Its not like “take tamoxifen or die” ISNT that standard of care attitude at least here in the US. On the other hand I do know several people who declined treatment outside of surgery and are alive 10 years later. I also hear of people who do all the medically advised things and die. :frowning:

 

Anyway, I dont know how often I can handle posting, but I just wanted to chime in and add to the thread about this tamoxifen issue which I completely and utterly empathise with. 

 

It seems we are all put in the impossible position of making “choices” between a few crappy options.

 

Hugs to all of you. I try to be grateful for each day and build a dream for a better future. It seems a good idea. Its not easy. 

 

 

 

 

 

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@Ella54   I hear you!  I am currently waiting for radiotherapy post 2 surgeries (they didn’t get clear margins first time) my oncotype score was very low. Currently looking at 7-8% reoccurrence risk.  The thought of medicating and messing with my body for 5 years is deeply troubling for me too. I’m not rushing anything and am thinking about asking for another oncologist appointment.  What did you decide and how did it work out for you? ?

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Hi, this is my first post. I am stage one papillary lesion so it is a ductal cancer. I have had a lumpectomy and have had my first consultation with an oncologist. He is definitely recommending radiation and a prescription. I try to do everything holistically and this is very trying on me because I work so hard to keep a healthy body. My doctor recommended tamoxifen but I’m researching all the different types of medication and seeing all of the horrible side affects. Has anyone out there opted not to do any treatments and just get rid of sugar and just eat aromatase inhibiting foods etc?  I’m very torn on this. 

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I took it for about two months from April 2004 to June 2004 when I had grade 1 cancer and a 9 mm tumour. I had a new primary breast cancer grade 2 NoS in 2022 in the same breast. So I decided not to take tamoxifen and I had a recurrence. But I might have had this anyway. They only do stats for 5 years as far as I can see. But maybe there are some long term studies that are looking at this. I joined the generations study in 2005 or so and I have scrupulously updated them.

Seagulls

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Hello I am in struggling w/ taking tamoxifen as well it’s truly daunting :worried: