Hysteroscopy post menopause on tamoxifen

Going through breast cancer treatment Hormone therapy
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Hi lovelies;
Had an abdominal scan yesterday ( all fine) however she did a vaginal scan too and after 10 months on tamoxifen ( post menopause grade 1 stage 1 multifocal mastectomy) she said my endometrium was bulky and cysty and 14mm!! I nearly wept!! Well actually I did…
Being referred for hysteroscopy and biopsy.
Not seen an oncologist referred back to surgeon.
I have stopped the tamoxifen just now.
Sonographer thinks things looked benign so I am holding onto that.
Questions:

  1. Tamoxifen suited me with minimal side effects ( apart from flipping thick endometrium) will I have to change to letrozole?
  2. Anyone else have this and what was the treatment plan?
  3. Letrozole is it as awful as I’ve read?
  4. Will my endometrium reduce in thickness when I stop tamoxifen?
    Sorry for so many questions nothing is ever simple is it!
    Lots of love
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Hi @joyousjen

I’m sorry to hear what you’re experiencing and I hope another forum member will be able to share their experience with you.

In the meantime, you may find this recent thread on the forum about letrozole experiences interesting, with regard to your third question: Letrozole - is problem-free possible? - Going through breast cancer treatment / Hormone therapy - Breast Cancer Now forum.

Please also know that our nurses are here on the forum to answer any clinical questions on this board: Latest Ask our Nurses your questions topics - Breast Cancer Now forum.

Sending our warmest,
Lucy

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have anaesthetic for hysteroscopy as it can be very painful

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Noted! Thanks seagulls x

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Hi joyousjen, How are you doing?
I’m going through similar at the moment.

I’m 49, been on tamoxifen for 4 years post lumpectomy and radiotherapy. I’d been getting abdominal pain/bloating and onc referred me for abdo and transvaginal ultrasound to be on the safe side which found thickening of uterus wall and a cyst.

I had the hysteroscopy last week - gynae consultant said nothing seen of concern but has sent the biopsy off - i’m trying to reassure myself that it will be fine but think i need the results. I have been very stressed and weepy with it all, had my annual mammogram recently which came back clear but always get stressed around this time…

I took paracetamol and ibuprofen before the hysteroscopy, they offered me opportunity to come back and have the procedure under general anaesthetic but I got through it, didn’t feel like i wanted to go back again (they did say i could stop if it was too much, wasn’t like it was off the table). It was taking the biopsy that really hurt, i was asking if there was much longer to go… :sweat_smile:

We are all different, so do take the offer of the anaesthetic if you want to! I didn’t feel there was any pressure or judgement from them.

I’ve not had a period for 3 years now, tolerated Tamoxifen (in oncology speak, still struggled with the side effects!). Oncology told me to stop it when saw the scan results. i called the BCN as was having a melt down and she said they may leave me off it for 3 months and not be concerned re recurrence risk, also that the thickening is a well known side effect, inference was that it will reverse once you stop. They have to follow up but all the cases she had seen did not end up being anything sinister.

I’ve got an appt with oncology in December and she said they’ll think about plan then, will depend what happens with my hormones, if my periods come back (gynae said its likely to be a couple of months if my ovaries are still on)

I don’t have any experience of Letrozole, when i asked my BCN about other treatments, if i couldn’t go back on Tamoxifen, she said not everyone has awful experiences of the other options (which made me think that some people do…)

You’re so right - nothing is ever simple!

Have you heard anything yet about seeing gynae for your hysteroscopy?

Let us know how you’re doing,

Cathy x

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Thanks Cathy. I’ve got the scan and biopsy booked for the 5th November xxx

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Hi Cathy that was a lovely text. I’ve got the scan and biopsy booked for the 5th November xxx
I am the same! Due 1 year mammogram end November then this hits along with my 90 year old mum with dementia being admitted to hospital and my 91 year old dad on his own in a different city! I am buckling Cathy!
No idea what they will say trying to take 1 thing at a time but am so terribly weepy and down.
I am dreading moving onto aromatise inhibitors my mother has osteoporosis and I have a low bmi which isnt stacking up well! I have never been so negative in my life! Xx

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Glad to hear you’ve got a date for the gynae stuff - not long to wait. But so horrible with everything else that’s happening- no wonder you’re feeling negative and weepy. How is your mum doing?

I ended up being signed off work for a few weeks with stress/anxiety. Spoke to a gp who knows me and she was helpful, normalised the emotions in face of the uncertainty. I have depression/anxiety pre the BC and she described this a ‘wobble’ and just needing some time off.

Sending big hugs xx

Cathy

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Hi Cathy - couldn’t see your post. Heading for biopsy on 5th x

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Hope you can see it now, originally got blocked (not sure why!) Cx

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Hi Cathy; had major meltdown today but did an exercise class which helped as did cake and coffee after….
Just spinning so many plates, biopsy/ 1 year mammogram and a mother with dementia in hospital in a different city trying to get my 91 year old dad transport to see her. Trying to compartmentalise it but it’s hard xxx

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Had scan yesterday but a failed biopsy too painful and cervix not playing ball, so going for Hysteroscopy under GA. Consultant really nice and said he wasn’t overly worried but needed to see it with his own eyes and dot the i’s and cross the t’s. He said i had a little fluid but again felt reassured because my cervix is closed and wouldn’t open so he thinks the fluid just can’t get out and what he saw was in keeping with tamoxifen. Not relishing another GA in under a year since mastectomy but he said the procedure only take 20-30 mins so I guess it’s a light GA. Really weepy just now but again I think it’s good it’s been picked up early. Mammogram number 1 near end of November and fingers crossed I can tick it off then Hysteroscopy in a few weeks I think xxx

Really really don’t want to change to an Aromatase inhibitor am beginning to think the risks are outweighing the benefits now.

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So sorry to hear this, with all the stress in the build up and handling the situations with your parents - not surprising you’re a bit weepy - sending a big hug.

Hopefully you’ll get the GA appt through soon.

I finally got my results today and got the all clear on the biopsy. So relieved. Even though they say it’s low risk, hard not to go to the bad place in your head.

Now it see how things settle being off tamoxifen… and I’ve still got the abdo bloating and discomfort that led to all this. Not sure if I should be pushing for other investigations.

Cathy xx

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I know how it is when you’re trying to support elderly unwell parents from a distance whilst managing your own health problems - sending love xx

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Appointment through for 22nd which is great and preop coming soon. Fabulous news sweetie about your results! I had a great meeting with the surgeon today who was very reassuring and wants me to stay on tamoxifen says he would be over treating me changing to an Aromatase inhibitor and the thickening will plateau out . Having a break till after the hysteroscopy so another 2 weeks then back in the saddle with Tamo!

Joanne it’s a nightmare spinning plates! I’ve simply told my son to smother me so he doesn’t have to do all this when I get to 90 which I intend to do! My folks don’t live near me so it’s a juggling act for sure and I’m trying to protect my dad from what’s going on with me as he’s 91 and worries. Mum with dementia is different but we have to sort her out at home and make sure we have a package in place… nightmare

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@Cath9090 and @joyousjen I hope you are both well. Thank goodness you have the all clear Cath.

Your posts caught my eye because I’m in a similar position. The difference for me is that I was diagnosed with breast cancer in May and have just finished the chemotherapy I started in June. Surgery is on 18th November. A prechemo CT scan showed a large fibroid. A follow up ultrasound showed thickened endometrium and fluid. The gynaecologist wants a hysteroscopy and biopsy - failed to do it in clinic. I’m postmenopausal by years and will start Letrazole next year apparently. She also suggested putting in a Mirena coil to give progesterone but I’m worried about this as my BC is oestrogen and progesterone positive.

I just can’t believe this is happening when I haven’t even got through my first lot of treatment yet!! I have learned from you that I need to ask more questions about the hormone treatments they’re suggesting :roll_eyes:

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well done finishing your chemo pat go girl!!! I know it’s one thing after another isn’t it! the stress and anxiety can be unbearable. I am slowly but surely learning to live with uncertainties that arise otherwise I think I will never live my life as nothing in life is ever certain. hang in there sweetie and good luck with the Op/hysteroscopy. Are you getting a general for the hysteroscopy? I am thankfully although im a little triggered by it thinking back to my mastectomy last November x

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@joyousjen thanks very much. I need a general as it failed in the clinic :roll_eyes: The gynaecologist was going to try and negotiate with the surgeon to do it at the same time as the breast surgery so I need only one general, though she wasn’t hopeful. I’ve not heard anything yet so I’ll phone next week.

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I am in the same sinking boat except I only have my mother now aged 97 and in a nursing home 15 miles away. I have looked after her care since Dad died in 2014.

At the same time I was looking after my Dad’s unmarried sister who had Alzheimer’s and I had a deputyship for her.

I ended up having to move her to a home when my husband went back to drinking. She died in February 2016 on an easily remembered date as it was a leap year.

Luckily my husband has not touched alcohol for eight years now but he has been making suicide attempts. I just do what Einston Churchill said - if you are going through hell, just keep going.

I also try to help my brother but he has a drink problem too and hoards things. Also he is IT illiterate. His carer has broken her shoulder so he now needs help to get food!

So I have to ignore other people’s needs and make sure I have my mental oxygen mask on as I fly round from crisis to crisis

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Hi everyone, hope you are all doing ok.
Thank you for replying to this thread, we are all going through so much, helps to know we’re not alone.

I’m back at work on phased return but work are talking about putting me on formal sickness management route which is stressing me out. I have spent time reading the policies, looking at macmillan and acas, and am pushing back, last thing I need at the moment!
I’ve still got the abdominal symptoms that started this whole thing off, will see what the onc says in Dec.

@pat how are you doing after your surgery?
@joyousjen looks like your procedure is Friday, is your mammogram around now? thinking of you!

@Seagulls how are you doing? you have so much on your plate, hoping you get to look after yourself as well.

Sending lots of love
xxx