Anyone else decided not to take HT Tamoxifen or other drugs?

I had lumpectomy end of Feb 2020 (left breast invasive lobular carcinoma 7mm; Grade 2/Stage 1; lymph nodes clear. Post menopause). Completed radiotherapy two weeks ago and given Tamoxifen, but have not taken any as I am paranoid of the horrifying side effects that I read many have experienced.  Hats off to many of you who are bearing with the side effects so bravely.  Of course, there are also many who sail through taking them without any s effects (like a lucky friend of mine, who took it for 10 years!). 

Have been told by oncologist that the benefit in my case is 1% (I know that this is the case for some of you too) - am I ready to compromise 1% benefit for may 10% side effects?   The dilemma is the fear of side effects vs cancer reccurrence...  It would be appreciated to hear anyone who have decided not to take hormone therapy.

Also, has anyone been on a lower dosage of tamoxifen besides 20 mg - e.g. taking it alternate day or cutting it into half?

I hope to hear from some of you. 

 

My thoughts and best wishes go to those who have recently been diagnosed; we know and understand what you are going through...  This is the right platform where people are willing to share their experiences and give their support.

Many thanks.

  • Hi
    I was Grade 2 DCIS 5mm with cancer in 2 lymph nodes. I had right breast masectomy, chemo and radiotherapy and am now on Anastrazole and Calcium tablets.  I was told that it could prevent my cancer returning by 10% , so decided to take it, even though I don't like taking medication. A little achy in joints at first and a few hot flushes but seems to have settled now. If it was 1% I might not have taken it. I have just had a Zoledronic infusion to protect my bones 

    Silver 

  • Hello Silver!

    Good to see your name pop up!!! 
     

    Well my entry on this topic was 2 years ago and I now don't take any hormone treatment. I know as I age it would help protect me but I hate them and on top of making me ache all the time I was also getting in low mood. So I just stopped. 

    I had a zoledronic infusion this morning!! It's my third one so I can't have any more. I will have a bone density scan in 2 years to check out if my bones have improved. I had a dexa scan last year and I went from having osteoporosis to osteopenia. So my bones were responding well to treatment!!! Very pleased about that. 
     

    Overall life is treating me well, as I hope it is you. I feel well and stil swim and walk regularly. I DO occasionally have a 'wobble' about a recurrence etc. Try hard to just 'get on' and enjoy life but sometimes it can get to me. Life is precious abd somehow cancer has rather highlighted that to me!! Not a bad thing really but I could have done without the cancer!!

    I was 70 last month and had a big bash to celebrate. It was lovely. So lucky. 
     

    Anyway go well Silver and may you have many happy healthy days ahead!!! 
    Kebbs x x 
     

  • Hi Kebbs

    i had my last Zoledronic treatment this week too! I haven't had any scans though. I am taking Anastrazole,my Consultant said I have 10% chance of it not returning on the medication. So even though I would rather not. Cancer was in 2 of my lymph nodes. I am seeing a plastic surgeon at a different hospital in September with a view to having Diep surgery, it's major but it's that or live with prothesis for ever. So my journey is not over yet but keeping busy and getting on with life. I am 70 in November and hoping for a celebration! Glad you are well...

    Silver

  • I spoke to the breast nurses at the hospital about fatigue side effects of Anastrazole and they put me in touch with my consultant surgeon who suggested I could try Tamoxifen. With Anastrazole I take 2 calcium tablets a day so it does affect bones so maybe Tamoxifen is better for you. I would say its an Oncologist or Consultant that you need to talk to. It's so controversial this medication and a personal decision. In staying on the Anastrazole for now and look at it again in 5 years, I'm now 2years taking it....but I have a friend who has decided not to take anything . It seems these meds are best they can offer for breast cancer recurrence 

    All the best

    Silver

  • Hi Gabby, I hope you are doing really well now. I am 46, seemed to have started the menopause last August, had mammogram in November which was supposedl hiy clear. I was diagnosed with BC on 10th July after a puckering in my left breast in May of this year (oestrogen & progesterone positive, HER negative) Just had lumpectomy, Stage 1, grade 2, no spread, wide margins and lymph & vascular clear. I have yet to see my oncologist as he is on holidays but my surgeon told me I would most likely be offered radiation and oestrogen blockers. I am becoming increasingly worried about the side effects of the oestrogen blockers. I had a mirena coil in for the past 20 years (changed every 5 or 6 years) and recently got it removed. I have cut my alcohol way back to 1 -2 drinks per week and the more I read I am inclined to become teetotal. I am eating a diet of fruit, vegetables, green tea, fatty fish, filtered water,  85% coco dark chocolate, reduced my coffee to 1cup per day from 3 or 4. No red meat, processed food or sugar. How are you gettingbon now? It's such a trying time, having to decide about taking those tablets. 

    Much strength and good health to you.

  • Hi Close and everyone out there 

    I am also 46, stage 1, grade 2, 6mm lump removed, locally, lymnode clear, radiotherapy in August  for 5 regular sessions and 4 booster  . I am prescribed with tamoxifen and extremely anxious to take it as I am afraid to get aging side effect and sex life taking away. I am have been postponing taking it since operation in June. When latest  do we have to take  this? Any side effect you experienced with aging and intimacy life? Anything we can do to mimimise this ? (Diet /supplements, etc...)? 

     

     Thanks, Mlane

  • Hi Close, do you take the "little tablets" or tamoxifen ? I am so afraid of its side effect to age me so I am considering  not to take it or only take it in a certain time period. Pls kindly  share your experience and thought. Thanks 

  • I was talking Anastrozole for 2months and had awful leg cramps, back pain and terrible heartburn so I stopped taking it in September now my ongolist has given me Tamoxifen which I got from the chemist today and on reading the side effects I'm afraid to even start them. I am suffering from scatica on my left buttuck for months  and osteoarthritis in left hip and knee,

    I just can't face anymore problems that can occur taking Tamoxifen, I am so anxious right now who do I tell of my decision my Dr or Ongolist. Fearful! 

  • I'm feeling so anxious today since reading the side effects of Tamoxifen which I have been prescribed after lumpectomy and radiotherapy, I was taking Anastrozole and the side effects were pains in my back, awful heartburn,leg cramps, and insomnia so I stopped them Now given Tamoxifen and I don't want to take them I'm 70years old and suffering from sciatica osteoarthritis in left hip and knee pain and vertigo and can't face any other of the side effects of this drug. I could cry I'm so depressed about this but I have to say no to this drug.!!!
  • Hi Duchess,

    Well I did reply to this thread a while back. At that time I s 'half taking' Letrozole. Since then I have stopped altogether. I too am 70 and just don't want to end my days depressed and struggling to move/live!! 
     

    So no, I don't take anything now. It IS a risk I am sure but I can't face the downside to these drugs. I admire those who just 'get on' with it and manage the joint pain/low mood etc. etc. I think some people bypass the side affects of course but there doesn't seem to be that many of them. 
     

    I have come across a few women who don't take the tablets. The oncologist told me I wasn't really risking that much as the protection they offered my situation wasn't that great. That's an individual thing though. It's worth talking through it all with a BC nurse or an oncologist. 
     

    Since my treatment ended nearly 3 years ago I have tried hard to swim and walk 4/5 times a week. Exercise helps as does a balanced healthy diet. 
     

    I completely get how you are feeling. Talk to the medics again and if you feel it's a 'no' from you then finding a way to feel at peace with that decision is likely the key. It isn't easy but gradually you will find your way. I wish you welll. 
    Kebbs