Cramping on Exemestane?

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I had a breast cancer diagnosis Jan 2021 at age 52, mastectomy March 2021, EC-T chemo May-Sept 21 with chemical menopause, Herceptin July 21-August 22. I was started on Letrozole Oct 21, changed to Anastrazole in July 22 then Exemestane Sept 22 until now.

April 22 I had a small bleed and a week of cramping off and on. A trans-vaginal ultrasound found a small 1cm intramural fibroid in the uterus fundus but nothing to explain the symptoms, womb lining nice and thin at 1mm.

A year later in April 23 the same thing happened, but it has continued and the cramping is pretty continuous now with spotting. Another t/v u/s showed I now have thickening of the womb lining to 9mm on the fundus only. The fibroid is unchanged.

I'm expecting a date for a hysteroscopy in the next 3 weeks. The lovely MacMillan nurse here told me that that Exemestane can cause thickening of the womb lining, but I don't know if that would be the whole womb lining rather than just a patch. The nurse also said if this is uterine cancer, it would be unrelated to the original breast cancer, but possibly related to the treatment for it.

I suppose where I'm going with this is to ask whether anyone else has had thickening of the womb lining and cramping/spotting while on Exemestane. I'm clutching at straws while I wait for the hysteroscopy and then for the results. It's going to be a looooong month ahead.

Thank you.

  • Hi I put this up for you to see if anyone can help - I really hope you are ok - when do you get results?  I had a mammogram last night and it was all clear (other breast), so that’s another ticked off.  Xx

  • Aw that's fab news. It's always a worry, isn't it?

    I guess I'll get the results a couple of weeks after the hysteroscopy. I'll be honest, I'm feeling worse and worse. Abdominal discomfort and distension, nauseated, cramping, slight spotting, just yuck. No fever though, so that's good. I'm going to call the hospital in the morning and see if I can get through to make sure I haven't missed an appointment. We've only been getting post once a week since Christmas.

    1. Hi, I’m a great believer in chasing things up.  You never know you might be able to get your results sooner!  I’m so sorry you are feeling this way - sounds absolutely awful.  Maybe you could call the practice manager at your gp and tell him/her to chase it up as well?  No one should be left in pain.  I’m going to my first Pilates class today since surgery.  I’m actually dreading it as I’m so unfit and completely inflexible hahaha - hang in there xxx. It’s 5 am been awake since 4 
  • I think I must have had a mild tummy bug of some kind because the nausea and bloating has subsided. The cramping is still there but it's just a background niggle now. I'm feeling better. I also rang the hospital and they confirmed I'm on the list, and will text me as well as sending the letter. So that's good.

    How did you get on at the Pilates class? I've been doing Yoga and I'm really enjoying it. It definitely helps with flexibility.

  • Oh that’s good you are getting better.  The Pilates went well I thought I would be rubbish but I managed.  4 months rehab still have aches n pains but hey ho!

  • Hi there,

    I thought you might like an update. I had a hysteroscopy which didn't show anything obvious but they took a biopsy anyway, and it came back on Tuesday (27/6) showing "unexpected" grade 3 endometrial adenocarcinoma. I had a CT scan on Thursday (29/6) and if the report is back in time for this Wednesday's MDT, I'll be having a laparoscopic radical hysterectomy on Thursday (6/7).

    They say it's unrelated to the breast cancer, which is both a relief that it isn't a met, and confusing, because why? Just bad luck I suppose.

    Thank you for your advice and support. Just heading off to the Womb cancer forum now, but I'll still be here too...