Trying to get more information on on the percentage of women who have recurrence of cancer when taking tamoxifen as opposed to those who chose not to take it. I am in my sixties had a grade 2 tumour and widespread DCIS resulting in a mastectomy with reconstruction. I feel absolutely ghastly when taking this drug although side effects not as severe as the arimidex… I am generally a happy positive person who keeps fairly fit. My enthusiasm for day to day living is non existent and the mood swings make me difficult to live with. Having suffered with severe post natal depression in my twenties and having been so well for all these years I am worried. I stopped tasking tamoxifen 2 weeks ago and I feel like myself again so if anyone can help me with these statistics I would be grateful. Many thanks
Hi rosanne
You could try putting your details into an online calculator which will predict the different outcomes for you if undertake various types of treatment. Try CancerMath (link to www.cancermath.net) and see what it says. At least then you might be able to make a more informed judgement.
For what it’s worth (probably not much), in my opinion if you can possible stick with the Tamoxifen then do so. One major reason why the cancer survival rates have improved so much in recent years is thanks to the advent of Tamoxifen. Like you I found it awful at first, but things did improve with time.
Have you considered trying a different brand of Tamoxifen to see if that might be better? It took ages before I realised there might be a link between my side effects and the brand I was on. I now realise that for me Wockhardt is horrible (mood swings, hot flushes etc) but APS is much better. Not without side effects completely, but they’re manageable.
Deleted - posted twice by mistake.
Don’t you just love the new version of the forums!
Thank you so much for the advice. Will attempt to make some sense of statistics.
Hi,
I am 62 years old with stage 1A grade 2 invasive ductal cancer. 1cm lump, clear margins, no lymph involvement. Triple +++
Lumpectomy 2010, chemo, Hercepton and rads. Tried Femara and Arimidex but it so clouded my thinking not to mention joint pain. Now on Tamox for about 4 months and although I can string a thought together I am just so tired all the time (not to mention hot flushes, joint pain and stiffness and weight gain.) I also have bipolar disorder and have been on antidepressants and mood stabilisers for over 17 years. At present not feeling depressed but quite anxious. So over all this. Have now been on either Femara, Arimidex or Tamox for 18 months. I try to tell myself only 3 and a half years to go. My onc tells me taking oestrogen antagonists is as important as chemo. He told another friend of mine to take the Arimidex every second day!
I keep thinking the weight gain from these drugs puts me at risk for diabetes and heart disease. Having bipolar disorder is enough in itself without adding Tamox inspired mood swings. Am going to try the CancerMath formula and a different brand. (I am in Australia and have been taking Genox) Just so good to have this forum.
Hi Rosanne
After my first routine mammogram at the age of 51 I was diagnosed with widespread DCIS. I had a mastectomy and I was told they had also found a 10mm grade 2 tumour developing but this was far away from the chest wall and it was successfully removed. I had no lymph node involvement and I did not have radiotherapy. (I decided not to have a reconstruction) I was prescribed Tamoxifen because my cancer was oestrogen receptive and the surgeon said I had a slightly more chance than the average woman of getting another cancer in my remaining breast. I had really bad side effects and after four months my surgeon told me to come off the Tamoxifen because he said it wasn’t worth the bad side effects I was having for the protection I was getting, and I will be monitored closely too. I even asked him if I should have another mastectomy to remove the risk and the possible future need to take Tamoxifen. He said this was not necessary because the risk of me getting cancer in the other breast was not significantly high.
I know that everyone is different and for some women it is very important that they continue with the Tamoxifen but it might be a good idea for you to discuss this with your surgeon or bcn because you might find that in your case you can make a judgement whether it is worth you carrying on with it if it makes you feel so bad.
Good luck
Maude xx
Hi Maude,
My cancer sounds similar to yours I will make an appointment to discuss with My BCN. Thank you
Rosanne, let us know how you get on. Coming off Tamoxifen is a very emotional issue and I remember that even though I had the blessing of my surgeon I agonised about it for a long time. I answered your post because I thought we seem to have similar stories.
Good luck
Maude xx
08-08-2016 USA I had a unilateral mastectomy in March 2016 for Stage I, grade 2, no lymph node involvement. No chemo necessary, no radiation, as all tumors (3) had been removed with the breast. I opted for no reconstruction. I am 60 years old with grown children, husband of 30+ years, and mini farm to tend. Though concerned about Tamoxifen and side effects, I agreed to a trial run to see if I was lucky enough to have no side effects or tolerable side effects. It went reasonably well for three months, with Gabapentin at night to help sleep through rampant hot flashes. In the fourth month, I developed urinary incontinence, impotence, bladder infection, repeated eye infections, urethritis that felt like constant catheterization, difficulty retrieving words and ideas in the morning, and nearly daily suicidal ideation. I also had bloody vaginal discharge and dry vagina. My cancer was ER+ PR+ HER2- and Oncoptype “0.” I stopped taking Tamoxifen after four months and have begun the process of tapering off Gabapentin, from 600 mg per day gradually to zero, over a period of four weeks (with supervision of physician). While I have been in touch with my oncologist via online portal, I do not have an appointment with her until five weeks from now, our regularly scheduled check in. I understand that the decision to forego hormone blockers has potential consequences. I have read the research, the statistics, and the percentages. I also know that this course of treatment was debilitating for me on a daily basis and completely untenable. I will decline other alternative estrogen meds and continue with routine evaluations such as mammograms and MRI’s. I will mark March 2021 as a five year milestone, live each day to the fullest, and hope to have many uneventful years of health, comfort, and warm relationships.
Hi welcome to the site, you are certainly not alone in having this dilemma ,when do the side effects /impact on your quality of life outweigh the possible benefits from the meds .Its a very personal choice.Im presuming your Oncologist has given you percentage figures for the possible benefits to you of taking Tamoxifen ?For me it is only 2% benefit over 10 years which would make me feel a bit less guilty /anxious if I chose not to continue .Hard choices but sounds like your life is being so badly affected that you would need a pretty convincing argument to continue .Let us know how you get on .Jill.
Hi all,
I have been takingTamoxifen for 18mths now following removal of tumour and sentinal lymph node, followed 5 weeks of radiotherapy.
Initially the medication seemed ok, however over the last few months I have been experiencing the dreaded weight gain, dreadful pains in my legs - hips & knees and a kind of pulling down feeling in my lower tummy.
all of the above has really made me consider stopping the medication, feeling totally fed up with these effects.
I dont know what the risks of a return of the cancer are but really dont think I can go on much longer with the tamoxifen.
anyone with advice?
Effexor helps with hot flashes and depression. But my legs are so weak, and painful…I can not reduce the weight gain because it hurts to walk. I like to be alive. Still here after stage 3 (almost 4) estrogen positive. Radical modified mastectomy and lumpectomy. Still her 4 years later, cancer free, but gympy. Doc. Says 6 more years on tamoxifen. I tried another drug a few years back, with worse effects, so went back to tamoifin.
I stopped tamoxifen after 10 weeks as my quality of life had become so bad while on it. My surgeon said they will keep an extra eye on me. The oncologist was pushing me to continue but agreed he too agreed I could stop. I stopped 2016, my surgery, chemo, more surgery, radiotherapy finished December 14. Jan 15 I tried ananstrozole but managed only 15 days so had nothing until Feb 2016 as both surgeon and oncologist really wanted me to be on something so I tried the tamoxifen.
I can say I feel better in myself but now and again struggle with the “what ifs” like yesterday when I went for my annual mammogram I know I will be on pins until I see my surgeon on 27 Feb.
All I can say to anyone is please try the tamoxifen it may not be bad for you but if you struggle there are some of us who have made that hard decision to stop. Sometimes I do wonder was I brave or stupid to stop - only time will tell.
That’s great to hear, thank you. I’ve been off it for nearly 4 months, physically feeling better but the worry remains , still, I guess we all have to find what’s right for us.
Best wishes ?
I’m 8months post surgery right side Masectomy with flap surgery reconstruction. All nodes clear no chemo!! Took tamoxifen it was awful. Fatigue, body aches and the worst feeling of unbalanced. Not spinning like vertigo but quick thrust of feeling like I would pass out, as quick as it happened it ended. My oncologist said go off it so it’s been one month and I feel so much better. He honestly felt I will be better without it. My quality of life was almost non-existent because I was so tired all the time. The surgery was easier then taking the medication for me! Keep up the fight everyone, positive thoughts xo
I’m on Tamoxifen since March and the s/es seem to increase over time. Thinking of coming off it but will try for 3 months. I worry about my liver and kidney. I’m not sure the benefit is definite, there is no guarantee that BC won’t recur even if on Tamoxifen …
hi Mary,
Sorry to hear the back pain is still a problem.
Seeing as loads of us have had breast mri’s to detect any cancerous changes, I would have thought that the MS changes seen on the mri, are just that & nothing else sinister was seen. But, it might be an idea to double check with your team or maybe ‘ask our nurses’ on here.
ann x
I have been on Tamoxifen for five years in May with a year on Anastrazole which was dreadful. However, the last five years have generally been awful in respect of my quality of life and my once has agreed for me to come off Tamoxifen when I see him next month because of the list of side effects I have been enduring for all these years. I was expected to go on for 10 years but asked to push onto five and we settled on this to give myself the best chance. I think there is always that ‘something’ in the back of your mind about the cancer returning, but I like to think I’ve done what I’ve can for five years and would like to try and live my life a little now… only a few more weeks now - counting them down … fingers crossed for the future
Hi I’m considering coming off of Tamoxifen too, Ive been researching more natural ways to heal. Im going to take it for one more week and then try a more natural method, I will let you know how I get on x
Essiac Tea is supposed to be very good and completely cleanses and rejuvenates the system