Hi,
I was diagnosed with BC in June this year and have had lumpectomy and sentinal node biopsy.
I am Grade 2, Stage 1, HER2- and ER +. Nodes clear.
I have been taking Tamoxifen for a month now and the side effects i am experiencing are getting to be almost unbearable. The list is endless. I honestly do not know if i can deal with this for 5+ years.
I had a dreadful reaction to Venlafaxine which was prescribed to try and help with the hot flushes, this almost resulted in my husband rushing me into hospital, as there was a risk of me developing Serotonin Syndrome and am now too scared to try anything else.
I had a long telephone conversation with my Oncologist and he has now said that the only option available if i feel i cannot carry on with the Tamoxifen is Chemotherapy.
The Decapeptyl injection along with another tablet (which i cannot remember the name of )is not an option for me as i experienced a nightmare time with that injection a couple of years ago when i was given it for ovarian cysts.
I have had the oncotype DX test done and it came back as a low recurrence score.
I have had my CT scan for radio and that is due to start on 4th September, and i need to make my decision before then so it can be postponed
So I am now in a bit of a quandry, do i rely on the oncotype results of being a low recurrence and stop taking the Tamoxifen and have chemo? I honeslty do not know what to do…
Thank you for taking the time to read this :-)
EDITED TO ADD:
Just thought i would add in that the side effects i am experiencing are not just the hot flushes and night sweats, list below
Tired all the time, whether i sleep well or not
Feeling sick
Get out of breath really easily
Piling on weight, one from a size 8 to a 10/12 in a month
Skin has broken out in horrid acne
More ache and pains than normal
Insomnia
Depressed
Moody
Tearful
Headaches
Dizziness/Light Headed
Constipation
Heartburn
Indegestion
More allergies appearing
Sore throat
Feelings of slight confusion at times
My husband has also noticed a change in me and he is also concerned as to how i can go on like this
Hi so!ivoo, so sorry your having bad side effects, i no side effects can be tough, ive not any experiance on tamoxefin yet, i am due to start taking it soon and im not looking forward to it, i am due to start radio also, i did suffer side effects with letrozole and zoledex which i was on for 3 months, and i do feel the longer i took them it got easier body adapted abit better, think it was not such a shock to the system. I think you have to do what is best for you, for me i think i would give tamoxofen alittle longer as it is early days, the chemo would be my very last resort.
Hopefully some ladies who are experinced in tamoxofen will be here to advice you, i have read on the forum lady magnet helps with side effects.
I have a very similar cancer to you, had clear nodes etc. 15 radio and then I started the Tamoxifen. After a month I saw the oncologist. I find the hot flushes bearable, and mostly it seems ok. I was also told it was up to me whether I took the Tamoxifen, but I looked at the stats and decided for the sake of my son (I am an unsupported single mum) I would do everything I could to prevent a recurrence. If you can’t bear it, there are other options I think. I do hope you find a path you can follow and best of luck.
I was diagnosed June - stage 1, no nodes, clear margins. I’m 48. Started Tamoxifen beginning July. Now done 12 out of 19 rads. I am very depressed and cry all the time. I feel my life has been destroyed and will never be the same. I have seriously considered not continuing with rads and have moments where I genuinely believe that I have never had cancer and that it has all been a mistake. My tamoxifen has been in the bin several times but retrieved when I feel a bit better. My husband just wants to hear me say ‘I’m fine’ and does not cope otherwise. I don’t know whether the Tamoxifen is to blame or not but I cannot continue like this for much longer and no one really seems to want to know about my emotional state. I have considered driving away and not coming back but I have three children who I would not leave.
Can I ask if anybody thinks the tamoxifen causes vaginal atrophy. I’m 66 years old and went through the menopause 14 years ago. Now I have my hot flushes back as well and on oestrogen pessaries and cream etc. I have never had these problems before and none of the meds are helping. Seriously thinking about stopping Tamoxifen as I can’t put up with this any longer X
