Endometrial hyperplasia-Tamoxifen.

Hi Ladies

It's been a while since I posted regarding my recent tests due to abdominal bloating/pressure, stabbing pain on left side. On the 1st of March I had a hysteroscopy (camera inserted into cervix) to take further samples of this thickening in my uterus that has been seen on ultrasound and MRI.

Today I had a follow up appointment with gynecologist to receive results and I have endometrial hyperplasia without atypia (this carries a very small chance of turning cancerous), with atypia carries a 40% chance. This for me has been caused by 2 years on tamoxifen.

The gynecologist has decided that I need a hysterectomy to remove my uterus and also left ovary as has a large cyst also due to tamoxifen. This decision has not been reached lightly as I am only 37 but due to my original BC being hormone fuelled I can not keep taking the tamoxifen for the next 8 years as he feels this poses a big risk for me.

I just want to make any ladies on tamoxifen to be really aware of any changes, I know there are many side effects on it, I've experienced a fair few!

I sometimes had an upset tummy, bloating on and off but then when I became bloated every single day I knew that wasn't right so I visited GP which started ball rolling. Most ladies on tamoxifen will never experience this, didn't think I would! but obviously it does happen. Make notes on anything new/different you experience and see if a pattern emerges.

Best wishes to all xx

[Nicola_04]

Thanks for this post, I’m 38 and really argued the case with my oncologist for taking tamoxifen. I felt that the side effects were a huge risk when I’d actually had the Oncotype DX test done and my score was 14. Sorry to hear you now have to go through a hysterectomy at such a young age but thank you for posting and pointing out symptoms to look out for x

[lizzyHZ]

I am going through the same and will be having my procedure next Friday ..I have been infirmed a hystorectomy could be needed depending on the results ..pffff

[Moirs1964]

Thank for letting us know and I’m sorry you’re going through this. I had many long discussions with my oncologist regarding tamoxifen and I did huge research on it’s long term effects. I did try it for a few months but luckily (or some might say unluckily) for me my body couldn’t manage it’s effects so I stopped and now 4 years later I’m still ok but let me stress that I do get monitored regularly!!!

Best of luck with your operation and wishing you a speedy recovery.

[Debster2016]

Hi Caz thank you very much for this. It’s really kind, thoughtful and generous hearted of you to share. I must admit I keep forgetting to mention to any one of my medical team that my sister had precancerous cells zapped. It’s good to be reminded.

Wishing you well for the surgery and recovery and sending love and hugs to you xx

[footprints]

Good luck with your operation x I had a full hysterectomy 6 months after my chemotherapy, I took tamoxiphen, for first 5 years well had a break here and there, they suggested I take it for another 5 years, but last June on my birthday I decided I'm not going to take it anymore as if done some research..? I still worry if done the right thing...but I feel my quality of daily life is better. It's a hard decision....x

[Hidden]

Thanks for all of your responses and good wishes. Now have a potential date for hysterectomy which is beginning of May, so not long to wait, not on tamoxifen at moment and haven't been since end of January so I'm feeling slightly vulnerable!

[Doyleee]

Thank you for your post, good luck with your surgery. Tamoxifen is a life changer, 1 year done not sure if I will complete the next 4

[squeezebox]

Hi Cazlav

Thank you for posting this.

I had to have endometrial ablation 6 months after commencing tamoxifen. Then ovaries removed a year after starting. The only reason I didn't have hysterectomy is coz my very unpleasant manager told me I had to take annual leave or unpaid leave as I'd had too much sick time. I was the only bread winner so had ovaries removed taking 2 weeks annual leave.

I was told that the ablation would prevent thickening of enfometrium but I'm sceptical of everything nowadays.

Tamoxifen had a horrible affect on me. I believe I'm still paying for it now.

Having had a second diagnosis just before Christmas I am off on treatment again from 11th April. Chemo, herceptin, radiotherapy and one of the hormone drugs. Not tamoxifen thankfully.

Best wishes for your surgery Cazlav.

Lots if live to everyone on here.

Xxxxxxxx💝💖