On Tamoxifen - get ovaries removed and hysterectomy

I wonder if there is anybody else with the same issue.  I’ve been on Tamoxifen for two years exactly and do actually very well on it, except that I had a very very painful period in March (the second bleed post chemo since taking Tam), so the Gynie had a look and my lining of the womb is so badly affected by the Tam, that they recommend a hysterectomy and since I have a 7 cm cyst on my left ovary they want to take them out too.  The doctor at the breast clinic said they change me afterwards to Letrozole for another three years.  

 

3N3 xx

Hi 3network3

I’m sorry you haven’t had any replies to your post yet.  I hope someone will notice it now and come along with a response.

I have attached a link to our publication on Letrozole which you may find helpful:

www2.breastcancercare.org.uk/sites/default/files/bcc64_letrozole_web_0.pdf

Take care

Very best wishes

Janet

BCC Moderator

I wish I had an answer for you. . . I’m wondering the same thing. . . I have endometriosis (Stage IV), and wonder if the Tamoxifen will create more problems with my internal organs and I’ll need to have a hysterectomy as well. - - - I’ll be watching this thread to see if someone replies who has a helpful answer both for you and for me.  - - -Good luck!

Hi all,

 

Can I join you as I’ve just been searching for similar threads and this is the only recent one?

 

I’ve now in my 6th year of Tamoxifen, so due to do the full 10 years.  I was 43 at diagnosis so definitely pre-men, now I’m 49 so who knows, especially as I had chemo.

 

I haven’t had periods as such since my chemo 5.5. years ago but did have 2 bleeds within the 1st 2 years which were investigated by hysteroscopy and nothing found.

 

All was well until this March when I developed what my GP thought was an infection which she tried to treat with antibiotics to no effect. She sent me for a scan which I had this Thursday, both ‘on the tummy’ type and TVU (internal). The radiographer told me my endometrium was much thicker than normal and within 24 hours (which is what’s worrying me) I’ve had a call from my GP to say they’re arranging another hysteroscopy with biopsy fast-tracked within the next 2 weeks.

 

I’m so worried, and this is unusual for me. After the full BC ‘experience’ 6 years ago (mx, chemo, rads then Tamox) I had convinced myself that I was fine and my life was my own again. I know the NHS guidelines follow a ‘belt and braces’ approach and they assume the worst until they find nothing but this isn’t helping me at all. I’m normally so calm and take everything in my stride but this has completely thrown me and I feel in shock. At work I lead a team of about 20 so have to keep the cool exterior and keep my feelings hidden, but deep down now i’m mentally planning how I’m going to hand over my work to the team if I need a possible hysterectomy.

 

Don’t worry about replying; I just needed somewhere safe to post my feelings and get it off my chest (ha ha!). Bless you, BCC, for proving me with the facility to air my worries

 

xx

Seems to me dreadful that a so called treatment, tamoxifen, is causing cancer in endometrium, resulting in major operation …however on checking aromatase apparently the risk is there too!! Do the professionals just want us to write off more internal organs till there’s nothing left? is this hormone treatment the best they can do? Or is it a question of cost? Wonder what’s available in the States? Or Switzerland, Sweden, Germany? Seems grim…awful side effects such as sweat, insomnia, depression and now this? They can stick men uselessly out in space stations costing billions…save the dough for cancer drugs that dont cause cancer. It’s a no brainer!

I’ve just been searching for links on this topic as I had BC, lumpectomy in August 2013 followed by radiotherapy and 5 maybe 10 years of tamoxifen. Just had surgery, laparoscopic bilateral salpingo oopherectomy which means both ovaries and Fallopian tubes removed due to a large cyst on one of my ovaries. Surgery was advised in order to prevent ovarian cancer as apparently there is a higher risk if you’ve already had breast cancer. On reading these threads I am worried now that there is still some risk due to not having a full hysterectomy (I was given the choice and decided that a hysterectomy was too drastic). Has anyone had same concerns? I am seeing gynae consultant on 20/3 for results of histology etc. any help before then would be appreciated.