Hi. Im coming up to my 1year anniversary of completing the treatments. Dcis, chemo herceptin and rads. But…the tamoxifen!! Im a slim tall 50yr old who began this process at 9.5 stone…fine. Im now 11 stone with a horrid wobbly belly that’s very uncomfortable. My oncologist didnt seem to listen to my concerns and said…we’ll review it after another year…we may change it then seeing as your periods have stopped. I really cant go another year…its getting me down…im sick of being tired too…that must be the tamoxifen. Im considering just not taking it…bit scared though. Advice??
Hi Tina,
Sorry to hear you’re feeling like this.
Well, you’ve had the full works of treatment so to speak & so it could be a combination of things, as well being at the menopausal age anyway, on top of everything else.
I did not need chemo & was older than you at diagnosis, but being peri-menopausal, I had already realised I was more prone to weight gain & simply could not eat like I had done when younger.
As you say, it is a scary decision to make, I tend to remind myself of the job tamox is doing in protecting me from recurrance & how I would feel of I did stop it & it came back. I know I would find that harder to deal with.
Wishing you well with it.
ann x
Hi Tina! I am so glad that I am not the only one suffering weight gain! I am 48, peri-menopausal, and also was thinking of stopping tamoxifen. I hate the side effects, but I am hoping that the benefits outweigh the downside. I don’t want to go through the trauma of having cancer again, so if a bit more weight etc are the way forward, then so be it! I am still trying to come to terms with things 6 months later, and it is tough…the thought of me stopping the tamoxifen and having another diagnosis is a few years time is uncomprehensable! Stick with it, and we can be “fat” together! xxx
Hi ladies
Thanks for the replies. Looking on the nice predict website it only makes .3 of a difference though…x
Hi Ladies, I’ve been on a break from Tamoxifen for the past two months, mainly as I was suffering so much with painful knees, i now know I have arthritis which was likely accelerated due to the Tamoxifen, I do feel so much better in myself, less sluggish and less tired but the one thing it hasn’t had any affect on is my weight! I’m considering going back in it now as I’m getting the jitters about not having that comfort blanket of protection Xx
Hi
Thats it isn’t it…were told its what we must take so were too scared not to. Im sick of thinking of cancer…every time I take 1 it floods back. I want to put it behind me. X
Hi All
I am a G3 node negative (vascular) er+ 16mm tumour. I finished chemo in Jun, rads at end of July and started Tamoxifen 4th September. On 28th Sept I threw them in the bin.
My left shoulder and hip joints just seized up. I put on 8kgs. I had the most awful “dusty mouth” that just felt like I was covered in cob webs, I had to drink cold fizzy diet coke to give myself some relief. But the worse was my mood and sex drive - just plumeted!!
I had to stop taking to see if the SE’s left and after 3 weeks, I was back to normalish, but had to have private physio to get my shoulder and hip working again. Still not lost weight and this is of great importance from someone who has struggled with weight for years. I need to be able to exercise!! I am now able to swim 3 times a week.
Seeing oncologist in 2 weeks to thrash out what to do next as I wont take AI’s without a bmd scan.
It is worth noting that although Tamoxifen reduces reacurance of BC, it significantly increases your risk of uterine cancer!! So “Sophies choice” .
A
xx
Does it??? It really increases risk of uterine cancer?? Why dont i know that? X
… & I love my? too Jo ?
Tina, the way I look at it is, that Predict looks at survival over 5 & 10 years, but not recurrence. Fortunately, statistically the vast majority of us will be ok, but what I’ve read recently puts the risk of recurrence from around 10-40% overall, depending on grade, stage etc. Tamox substantially reduces this risk.
I was told by my onc about the uterine cancer risk, but this is very small & well below the risk of a bc recurrence. She also went onto to say that this was easily treated. This is why we should be advised to report any unusual uterine symptoms, such as bleeding.
Apologies for the speil, but the whole thing is such a minefield ? !!!
ann x
Thanks both…i spose i was secretly hoping for evidence to say that its fine to come off it if i want. And the bloody awful tyre ive gained will immediately disappear! Along with the moods, tiredness etc. Oh well : (
Hi
Thankyou. I feel and sound petty though compared to your side effects. Xx big hugs
Charys, I was in the same place as you when on tamoxifen. My life was so miserable, the low mood scary on top of horrendous sweats (flushes is far too mild a word!)
I came off it for a few weeks then went back on to test the SEs and same again. Onc moved me onto anastrozole and zoladex but the sweats, though fewer, were even more drenching like I’d been caught in the rain, hair dripping!
Oncologist agreed with me that I stop hormone treatment as quality of life was so poor. It’s a personal choice and one which must be considered very carefully.
I’m waiting to see what my third annual review will bring. ?
Interesting Riverside Dawn, one size doesn’t always fit all does it. Nice to hear from someone else who has needed to go do the ‘no hormone treatment’ route. I say ‘needed’ as that’s how it felt, there didn’t feel like much of a choice when quality of life was so affected.
Can I ask please…
Those of you now not taking Tamoxifen, did you have lymph involvement? My tumour was node negative but did have an area which was vascular - I can not get my Onc to tell me how this effects my risk status.
I am seeing my oncologist this coming week to tell him I will not be taking hormone therapy. It has taken me nearly 6 weeks to get back to some sort of normality, my GP has me on prozac to help with my mood which very nearly saw me sink into depression (have had two previous times of medication for PND) so am at higher risk of depression.
I am also going to ask him to “think outside of the box” and what tests I can do to help myself, happy to do this privately Ie blood tests, ultrasound scans etc. For er+ has anyone heard of “DIM”?
I have lost 4 Kgs - think this is because I can now exercise easier and get walking more. Am having a fitbit type thing for xmas so I can monitor.
I wonder if there is a thread somewhere for support for those not taking the hormone therapy.
A
x
Hi agarside, yes I was node positive, 26/27 of the little blighters! Also 2 relatively large tumours at 7cm and 2cm (yes, cm not mm) and ER+ so am a high risk of recurrence or mets, but I had to make my decision for the here and now, not the what if.
I’ve also had previous bouts of depression and pnd, counselling and medication.
I am worried about some changes to my spine which were picked up following a ct scan to check my lungs after DIEP surgery and also show on ct and bone scans last week. Awaiting MRI to confirm what it is. But I stand by my decision to stop hormone treatment as I do not know what state I’d be in if I had continued.
hi ladies can anyone give me any advice ,been on tamoxifen since sept and im getting alot of pressure pain in my lower tummy happens every month but for about 3 to 4 days not period though ,but this time it got very painful so i went to the doctors it was very tender on left side so he is sending me for a scan which i feel like it wasting everyones time all i wanted him to say was oh tamoxifen does that and that would of been o.k with me,i know on the leaflet says report any pressure pain in tummy to doctors etc i just wondered if any one else has had this im 44 years old and what the outcome was xxx little fairy
Hi littlefairy
Tomaxifen has lots of side effects and because of the risk of uterine cancer, you should always get any symptoms similar to periods checked out especially if any bleeding is involved. I know that oncologists tell us that the risk is low, depending on which research you read it is as low as 3% but as high as 19%.
hi ladies haveing bladder problems on tamoxifen has any had this i have had no children so they cant put it down to that one im 44 and peeing myself how embarrasing it is im seriously thinking of comeing off it again im to young to be wearing incontinence pads xx
Yes I did, it was very firmly on my list of problems when seeing the oncologist !!! That was one of my side effects, I was becoming incontinent! (48) Oestrogen deficiency and continence are certainly linked.
Hello Everyone,
I could really use some reassuring right now.
I have been on Tamoxifen for 3months. I began having SE’s immediately. The first tablet was nausea, but was gone by the second tablet. Within the first week my lower back was uncomfortable, but not agony. I told the oncologist and he ordered an x-ray which came back clear. Back ache persisted. He then ordered a whole body bone scan which was also clear. I pray that you all can share with me your experiences. I do experience the other pain and joint aches as well, but they seem less persistent and not as annoying. I saw oncologist today to request a ct scan. He agreed and now I wait for approval from insurance and then the scan. My question is how likely are two test to have missed something ? I know an X-ray may not be very informative, but I think the bone scan should offer the doctor enough insight. I could really use the answers and support of you ladies. Thank you all for any advice and support that you all will share.
I also just completed all active treatment 1/29/18 and I’m 54 years old.