Hi lovelies this is a long one straddling breast cancer and gynaecology issues!
Had a mastectomy last year grade 1 stage 1 no nodes 4 small under 1 cm tumours.
I’m post menopausal but was put on tamoxifen.
Things ok for a year then it went pear-shaped…
Had a scan which showed endometrial thickening, booked in for hysteroscopy under GA… they couldn’t do it as my cervix wouldn’t open… I sobbed when they told me.
Option mri. Went for mri told no thickening but I had a large polyp probably due to tamoxifen. The issue is they can’t get to it to take it out… they said likely to be benign everything else ok but can I live with that??? Option another mri in 3 months or hysterectomy. I am not wanting any more surgery I just don’t know what to do. Then to add to my misery they want me to start on letrozole and stop tamoxifen which I tolerated okay.
I’m at my wits end and thoroughly fed up any uplifting thoughts? Any ideas/ advice?
My risk on predict is 0.2, 0.5 and 0.8 over 5 10 and 15 years and the way I’m feeling I don’t want to take it x
Double mastectomy here for bilateral breast cancer, grade 2, nodes clear, estrogen positive Her2 negative, age 53.
I was put on letrozole in September for five years to be followed by five years of tamoxifen. I plan to not go onto tamoxifen, my worry is swapping one cancer for potentially another, and I already have a history of ovarian cysts and slightly thickening endometrium (resolved now), so plan to stay on letrozole all being well with bones etc.
I asked consultant why the swap at five years and he said simply to spread out side effects etc so I will decline that in five years, and I can’t imagine him being bothered.
I have been fine on letrozole, slight nausea occasionally, slight joint pain (acupuncture helping with that). I even lost two stones in the months since started!
Sorry you have to face the thought of hysterectomy due to Tamoxifen! I get really annoyed that Oncologist was so blasé about possible side effects like this! I’ve just been prescribed Tamoxifen although I’m post menopausal and expected to be given Letrozol. Not sure one is better than the other although was assured Tamoxifen better for bone health etc. I honestly can’t bear the thought of ending up with your choice a year down the line. Like you seriously considering not taking anything! I feel so well just now and dread the thought of becoming ill due to medication. Take care, I hope you find the right path for you x
I have no words I take a drug prescribed to prevent breast cancer and unfortunately it produced a polyp! I’m so upset at my bloody cervix for being stenosed otherwise it would have been snipped out… I’m going for repeat mri rather than surgery and will think about it if anything changes. Maybe it will shrink because it’s not being fed oestrogen from the tamoxifen!
@joyousjen I am in a similar but different position to you! Breast cancer diagnosed last May - chemo, lumpectomy and axillary clearance in November, awaiting radiotherapy soon. My post diagnosis CT scan showed a large fibroid. Gynaecologist suggested vaginal ultrasound after chemo which showed endometrial thickening. Like you I had to have a general to do a hysteroscopy when they did biopsies- awaiting results now. I am post menopausal.
Oncologist prescribed 10 years of Letrazole. I queried it’s use in view of the endometrial hyperplasia and he said that there is some evidence that it can improve hyperplasia, or at least doesn’t make it worse, or cause it, as Tamoxifen may do. There is no evidence of Letrazole increasing the risk of uterine cancer. I discussed it with the Gynaecologist as well and he agreed and had no worries with me having Letrazole.
I am wondering what will happen if the biopsy confirms hyperplasia as i certainly dont want to keep having an anaesthetic to check it’s not becoming malignant, however unlikely that is. Part of me thinks just do a hysterectomy and then I dont have to think about it again but, like you, can’t face being fiddled with any more Got to get the biopsy results first as there may be no choice.
Sorry, I’ve got off track - I’ve been told not to worry about Letrazole!!
Thanks for that pat good news letrozole won’t feed my polyp. Just wish they could have got through my cervix to snip the polyp off but they couldn’t. Gynaecology thinks it’s likely to be benign but can’t be 100% sure. Asked if I could live with that . I was asymptomatic it was found incidentally.
I just don’t want more surgery so will repeat mri and see what happens xxx
Reassuring about letrozole though albeit starting a different tablet has made me anxious
@joyousjen I was annoyed they couldn’t get through the cervix to biopsy the endometrium!! No polyp for me though! I was also asymptomatic and was also told by the gynaecologist that it was most likely to be benign but that they had to check. I think it’s totally reasonable to go for the MRI and see how things go.
If you are waiting on results did they manage to get something to biopsy? I think mine tried everything but just couldn’t get my cervix to open so no biopsy taken which is why it’s mri or hysterectomy ( harsh I think)
@joyousjen they got something but warned me that it may come back as an ‘insufficient sample’ so then I’d be in the same situation you’re in. Basically the uterus was all wizened up - a bit like I feel at the moment!
Weirdly, as you asked this today, I got a letter this morning.
It said they were unable to obtain endometrial sample as the whole uterus is full of scar tissue. No evidence of anything nasty from the little they could see. No follow up unless there’s a problem ’ it seems that these findings, plus no symptoms and no vaginal bleeding, means they’re happy to discharge me. It says to go back immediately if there’s any bleeding
I wasn’t very happy with not getting a definite answer of no cancer but i am presuming/hoping that what they saw on ultrasound was probably the dense web of scarring and not endometrium at all.
Pat you took the words out my mouth - I have a repeat MRI in 3 months and likelihood no change (as I have stopped tamoxifen) so am putting it out my mind too - no bleeding no symptoms on my part too. xxx
It seems that if there’s no symptoms, particularly no bleeding, then the chances of it being nasty are infinitessimally small so they don’t worry. I guess we just have to trust.
Got to get the biopsy results first as there may be no choice.
which is why it’s mri or hysterectomy ( harsh I think)
