Tamoxifen better for 10 years?

Oh Lucy, I wish I could give you a hug.  I feel exactly like you described.  Diagnosed at age 39, My mastectomy, lymph clearance, chemo and radiotherapy done and dusted and I just got back to work trying to find a new normal but feeling totally different, insesecure, worried, tired of side effects of horomone therapy etc .  Then about after 3 weeks back at work I was diagnosed with BRCA2 gene mutation.  Its been 3 weeks now since my hysterectomy and I have full blown menoupause, sleepless nights, infection in my wound and bladder, new painful cording under my arm from radiotherapy scarring....  I just can't seem to get off this roller coaster ride called breast cancer!  So when people 'are happy for me that it is all over' i just look at them blankly and smile. They really have no clue.....I am so happy I am alive and survived this year, but it does get me down that with ongoing hormone treatment, early menoupause and side effects from this means that we will be on this road for quite some time where initially we all looked forward to 'finish' with breast cancer.  We'll have to find joy in life again, with little things and dig deep to find positives on days when we are overwhelmed.  I just turned 40, I love my husband and children and my life in general.  I really want to find my new normal soon.  Hugs to you and all the best with your treatments.  Trusting that we both get back on the 'horse' soon and cope better as time passes xxx

Yes, Breast Cancer does change you, things can never be the same as I have found after 3 months since my left breast mastectomy...not just physically but mentally so much re-adjustment.  I feel like I am a different person. Now dealing with the side effects of tamoxifen which I have been on for 2 months and wish my aching joints and bones would just go away. This including the mood swings, the hot flushes, decreased libido, feeling itchy and irritable not fun. loss of cognition and feeling vague..and when I raise them with my breast care specialist and oncologist...their reaction is...yes that will be the tamoxifen...like you know there are side effects stop complaining and suck it up...do you want to get Breast Cancer again or not?  My Aunt had Breast Cancer, took Tamoxifen and ended up dying of Uterine Cancer, I am concerned this could happen to me too, again told not to worry...the chances are low and if I am still concerned (I have uterine fibroids also) they can do a hysterectomy and I wont need to worry anymore! aagghh! I am 48 and pre-menopausal. I was lucky I dodged the chemo and radiation - but lost my breast instead. Now it is tablets for the next 5 years. One day at a time..and trying to find some semblance of normal again. I wish everyone well and thank you for sharing your stories as I quite often feel very alone in this breast cancer journey. 

It seems sometimes it is too much and not many get that it doesn't really finish.  And you are correct about coming back - I felt like I was dragged away from the life I was living and then put on a parallel pathway, and then when all the treatment had finished I was expected to get back on the original pathway.  But I had changed, things had changed.  It wasn't easy, but with the support of my amazing beautiful friends, counsellor and the bcna network I have managed.  Some days, not very well others better than expected.  Going back to work and getting back on the water through dragon boating all helped and still do. Do what is right for you and great advice from one of my friends is to take one day at a time.

I have been on Tamoxifen for a month. I have pure Micropapillary breast cancer so the chance of it coming back is quite high, originally 50%, now around 30%. I had a lumpectomy then a week later a mastectomy, followed by 6 months of chemo and radiotherapy. I had 5 cancerous lymph nodes, stage 2B, grade 3 tumour. I'm 43. 

I have trouble sleeping and get so hot at night time. It's quite distressing. Yesterday I decided to give it up, panicked and started taking it again. It's just too much sometimes. People at work think I should be fine now that I've finished chemo and radiotherapy. They keep saying how happy I must be but I feel like I've come back from a war zone. I'm just emotionally exhausted. Is anyone else feeling this way? Does it get better? 

It is interesting hearing about all the side effects, l also have prickly heat very bad on my arms & shoulders, l scratch until l bleed, l find that an ice pack numbs it & l am able to stop scratching for a while. I thought the lose of memory was due to my age also, then l read about chemo brain, but l finished chemo last Oct. The more l read l am beginning to think that it is the Tamoxifen. Lets hope that we don't have a really hot summer this/next year for us girls on tamoxifen :)

Keep cool Sharon

I have been on tamoxifen for about 20 months and have had very minimal if any side effects from it.  I was 46 when I had chemo, had one period between finishing chemo and starting tamoxifen and none since then so am menopausal now (don't really know if that's caused by chemo or  tamoxifen or combination of both.)

I had mild hot flushes several times a day to start with but they barely trouble me now. Only very occasional. And I do sometimes wake up at 5am too but I used to do that before my BC diagnosis so may not be related. I guess my libido has dropped off a bit too, sadly, but I put that down to menopause itself rather than tamoxifen. 

I suspect the key thing to avoiding/minimising side effects in my case is exercise. I ususally do an aerobics or weight class or a run at least 5 times a week. It can be a drag sometimes but it does make me feel good, it reduces the risk of recurrance and it has helped me avoid gaining any weight. 

My oncologist wanted to swap me to an aromatase inhibitor once it became clear I was definitely menopausal but I hate the sound of the side effects they cause so I opted to stay on tamoxifen. She didn't seem to think it mattered much.  At this stage she has only suggested taking hormone suppressing drugs for 5 years. Wouldn't want to take it for 10 unless absolutely necessary. I do worrry sometimes about the risk of uterine/endometrial cancers. Good luck , Janet.