Breast Cancer - Further treatment - Tamoxifen or Ovary removal...

Hi,

The story so far: My Girlfriend found out back in February that she had Breast Cancer. Luckily she caught it early. It was Stage 1, Grade 2, less than 2 cm, they removed it, and some lymph nodes. The nodes were clear, as was a subsequent CT Scan. The lump also tested with top marks for hormone receptors, so Tamoxifen would be very effective. She was apparently a borderline case as far as Chemo was concerned, so having discussed it with her Oncologist and Surgeon she opted not to have Chemo. So she had a 3.5 week course of Radiotherapy, which she finished about 3 weeks ago, and then started Tamoxifen a few days later.

SO...... Within 2 weeks of starting Tamoxifen, she experienced severe pelvic pain, and ultimately stopped taking it. (She has had Endometriosis in the past, so wondered if it had enflamed this). According to her Gynecologist, this is because Tamoxifen doesn't stop estrogen production at all (contrary to what we thought!). It merely blocks it from the breast area in some way. So, your body then thinks you need to produce more and sends the Ovaries into overdrive producing it!

So, the Oncologist has now brought up the question of Ovary removal. - I have to say, the Oncologist seems to be quite gung-ho in wanting to do anything to attack the Cancer, and not particularly focusing on the side effects of any course of action. The Gynecologist is a bit more cautious though and is wanting to investigate whether it's really the best long term solution.

The other question is whether with persistance, the painful side effects of Tamoxifen would pass - if so, how soon (weeks/months if ever....) or whether Ovary removal is the better option.

She is also concerned about the prospect of weight gain following Ovary removal - so any experience of this or any other related issues please feel free to comment! I've also read some pretty scary statistics about Ovary removal in younger women (particularly below 38 / to an extent below 46) can increase chances of Dementia & cognitive function. Anyone have more info on this?

  • Just realised I hadn't mentioned her age, She's 41 - I know it's not usally polite to ask a ladies age, but probably relevant to treatment options!

  • Hi,

    There is another drug for people who cant take tamoxifen.

    It is called gosrelin (Zoladex).

    It is a monthly implant so if its not suitable the effects are temporary. It is often prescribed for endometriosis as well as breast cancer.

    It will cause the ovaries to stop producing estrogen and this will bring on an artificial menopause which should be reversed once you stop using it.

    You can look it up in wikipedia and ask your doctor about it. It will probably kill her libido, though.

  • Hi

    I was diagnosed at the same age but had to have chemo which sent me into an early menopause.

    I am taking tamoxofin its ok it took a while but i got used to the side effects. The night sweats are the worst. I have gained weight on the tamo so I'm not sure if either treatment makes a difference . Hope this was helpful

  • Hi I also started Tamoxifen January this year,I was totally wiped out and emotional wreck,normally very upbeat confident person,went back to see Oncologist she recommended I come off it while I was receiving my radiotherapy she seemed to think I was feeling this way because I had been diagnosed with Breast cancer,I started taking it again march 7th and after 8 weeks the same again depressed aching joints but the worst was my loss of memory and the feeling of sitting on the outside of a conversation when people were actually talking to me,back to see oncologist two weeks ago,I'm off the Tamoxifen for two months,then going to have blood tests to see if I'm still menopausal if so she has recommended ovary removal or new medication,three days off them I started to feel more like my old self,I know I'm taking a risk I'm 50 yrs old and had a stage 1 10 mm estrogen receptive tumour,but I am prepared to try anything except Tamoxifen I returned to work end of March and was seriously considering quitting my job as I just couldn't find the head space(child social care) to give the kids I work with what they needed from me,im glad to say 8 weeks later my passion for my job is back and I feel great .

  • So interested in your email. I had9mm grade 2 tumour at 52, had 3 weeks radio therapy and havebeen on Tamoxifen just under 3 years but feel i have to come off it. I have recently become bloated in my stomach so after investgation i have lots of cysts on my ovaries, womb thickening plus a fibroid and have started feeling pain in my ovaries. i have had two biopsies which were ok but my last scan was worse so i thought enough is enough!

    81% of women who were still having periods when staring Tamoxifen go on to develop cystsand no doctor will say come off because they are covering themselves but the link between ovarian cancer and this drug is proven. You are brave to come off it, i hope i have not taken too long to reach the same conclusion as i may now have to undergo a full hysterectomy but who knows, maybe my womb will recover now i am off this drug.

  • I have just been diagnosed with invasive lobular cancer (I'm 38 years old and have two children aged 9 and 11). I have been told that the tumor grows with oestrogen and progesterone and I will need hormone therapy following operation and radiotherapy. Have looked into this and now I'm scared stiff of this tamoxifen, it sounds terrible and I'm worried about the side effects. I obviously want to do what it takes to keep the cancer away but is there an alternative? Has anyone been on tamoxifen and felt ok?? Would removal of ovaries be better or the same or worse?

     

  • Hi, just wanted to pop in...

    Dont write off tamoxifen without giving it a go. Side effects vary so much from person to person. For example my mum ( over 30 years ago) was on tamoxifen and tolerated it very well. 

    Im on another hormone inhibitor ( anastrozole) which also comes with every side effect known to man kind, I'm relieved to say other than the manageable aches and pains I'm doing fine...

    good luck love, this forum is a good source of info with ladies who understand what your going through...keep popping in x

  • Thanks for taking the time to respond- it is so good to be able to chat to someone who ha been through this. 

    That is reasurring, I guess I will just have to try it to see what happens- living is more important after all.

    It is strange that I am more worried about this than the surgery. I have been feeling pretty ok about it all until today and I guess it is the fear of the unknown and the fear that taking it may lead to other health issues. I wonder if there are more complications if you are pre-menopausal.

     

     

  • Dear Lottielot,

    I know it's a while since you posted about your fears of taking Tamoxifen. I too am now in the same boat as a young 47, premenopausal case and more worried about taking this drug than the surgery which was successfully (I hope) done last week. I was looking through the posts, as you do and found yours and am just wondering how you're doing and whether the drug agreed with you or whether you did something different?

    Thanks for your post, and have a good bank holiday! X

     

  • Hello,

    Yes I've been taking the tamoxifen for about a year now and I have to say I didn't get any dramatic side effects like I was expecting. My periods haven't even stopped although they are a little more irregular than before. The only thing I have noticed is my hair has thinned a little on the sides and a little more dry down below. I take the tamoxifen just before bed and make sure to drink plenty of water during the day.

    I hope it goes well for you, some people have dramatically different side effects depending on which brand they have. My pharmacy gives me a different brand every time in spite of my requests but If you have bad side effects with one you could try a different make. 

    Hope that helps a bit xx