Thanks Lemongrove - good to get the mechanism and language correct (I nearly typed ‘agonist’ but wasn’t sure that was the right word).
Thanks Mary Grace, what you say about the mirena coil pretty much echoes what I feel… I know it is local not systemic but even so…
Salonen, so sorry you have had to join our club, but thank you so much for sharing your experience. I hope you are recovering OK after that double whammy of surgery - take care of yourself and let someone else do the running around. I worked all through my radiotherapy (and all my chemo for that matter - I am one of those annoying so-and-sos you read about!) so it can be done… just pace yourself and rest if you need to.
Obviously it will be several weeks yet until I reach a decision making stage, but everything here is REALLY helpful to my thinking process.
Sorry you are going through this and possibly facing more surgery. I can’t offer any words of wisdom as my BC is hormone negative so I am not having all this hormone/tamoxifen etc malarky, but sending hugs to you, and thanks for all your support for the rest of us in Benchland and all the other places.
Thank you Squeakymouse, that’s really kind of you to take the time to post… hugs gratefully received. There are so many lovely people who post on these forums, and it’s a great source of mutual support.
Poor Revcat . What a wide variety of side effects all these pills have. Yes, as you so rightly say tamoxifen can cause this problem. Everything dependeds upon the typical or atypical diagnosis. Your usual thorough research has given you the probable options. It would obviously mean a lot to you to talk things over with your Oncologist. I am sure if you request this they will make you an appointment or if you ring the secretary the oncologist can ring you back and chat things over with you.
Biggest of hugs
God bless
Cackles
Thank you Cackles… I am in receipt of so many lovely hugs, I am feeling quite spoiled! It will be a while before I know what’s what (still not been given a date for the investigative porcedure but told ‘about six weeks’) but it is good to be as well-prepared as I can be with my questions! I’m sure my medical files all have ‘oh no, not her, the one who reads research papers’ written on them!
Hey RC, just seen your thread and sorry you’re going through more decision-making questions. I can’t add anything constructive, so I’d like to add to the pile of hugs, and good luck in making a decision you’re happy with.
Ha ha ha , just had to LOL at Lemongroves comment. Count me in the misbehaving endometrium club, I have been only on tamoxifen for 3 years, pre menopausal with periods getting heavier then missing for a couple of cycles and generally being a pain, I had the mirena coil pre diagnosis and loved it but as strongly ER and PR + had to have it out.
Had pelvic and trans vaginal scans and now referred to gynaecologist, three and a half hour round trip to the hospital so am hoping for some answers and not just a wee chat ! Good to share our experiences here, I am very much an advocate of knowledge is power…or maybe I am just a control freak ! Hugs to all xxxx
Oh Lemongrove, I am rotfl having read your comment… so funny!
Choccie and Katy, thank so much for the messages and hugs, much appreciated.
Sandra so sorry to read you have this to face too. It is helpful to read of your experience, and it confirms some of my hunches about how they might approach treatment, thank you for posting. Hope your lot get things underway quickly for you… it could easily be November before I get the hysteroscopy and biopsies. Sending you a cyber hug too - cos they are useful, and can be saved for days when they are needed.
Thank you FF. I am feeling very hugged! Daft as it sounds, this timescale is actually half what it might have been, had I not switched hospitals! Hopefully it will less than six weeks - I have ‘pre-op’ appt. next week and think they are only ‘valid’ for two after that…
Thank you Jay… with all these hugs and all this support I should fly up that mountain! I will have you all in my heart as I slog upwards with the Tamoxifen induced flushing red glow about my face!
Hi I’m waiting now for results too but my gyno told me I had a poylp that needed to come out urgently this was 19th Sept. He couldnt do it then as day surgery because I have Angjina and other problems … anyhow when theAnaesthetists saw me he said I was too high a risk for him to do it in Day Surgery. So I waited & waited rang a couple of times. GOt a date 11th Oct I said yes… then another phone call “Can you come in two days earlier” Yes I said but my gyno couldnt do it, well I thought it#ll be okay they know what they are doing! Anyhow all done and dusted this young girl (DOctor) came to tell me my results. No Polyp Was Found. What I said so the senior Gyno found a polyp and the understudy said there wasnt one!! Can you imagine how I felt!
Well I rang his Secretary up and she was surprised, she said she d get him to ring me. So I cant wait for tomorrow now to speak with him. I mean have I gone through this for nothing, will I have to have it done again to remove it? I m so upset over it all. If it was urgent and its still there what the heck???
So fed up I cancelled my Op for reconstruction due 2 Oct for this Op cause he said it was imporrtant!
That sounds very cross-making, as my mother would say. I hope you get some answers when you phone them tomorrow. Let’s hope you can get you recon rescheduled soon too.
I now have a date for my hysteroscopy and biopsies - 14th Nov which is still ages off, so they obviously aren’t too concerned. I’m not too perturbed either, just feel it’s a very long wait and I’ll be glad when it finally happens.
Thanks for keeping us posted Revcat, will be interested to hear how you get on. I have had what I was told was only a consultation only to find that they actually wanted to try and get a sample of my womb through my cervix ! Ouchey, as hadn’t expected it so hadn’t taken any painkillers pre poking and my cervix wasn’t really too keen getting prodded. Doc then didn’t think she had got a sample after all so I am getting booked in for a hysteroscopy and biopsies under general too, should be in the next 6 weeks. Only other info I gleamed was my endometrium was measuring in at 19mm, but I am pre menopausal with periods all over the show, heavy and now spotting inbetween periods so glad that it is all getting checked out. Just a case of wait and see what they find in there. Not getting too worried about it until I know what I’m dealing with.
Hi Sandra, hope by now you have recovered from all that youchy-ness… honestly they should know better! Do you have a date yet for your hysteroscopy? Still nearly two weeks until mine - will be VERY glad to get it done and hopefully get some answers about how to manage whatever they discover along the way. I haven’t had any more bleeding, but I have now had three months of continuous low grade uterine pain…
Like you I’m not too worried, because they clearly aren’t, but it will be nice to have some answers.
Three weeks post poking and still haven’t heard a peep from the hospital, so no date as yet for hysteroscopy, cutting it a bit fine to fit into their 6 week urgent schedule, hate things being arranged last minute too, jeez I have got a life to arrange around these things.
Sorry to hear of your pain, i don’t have that but am spotting off and on through my mad cycle, just wondering how many days it is going to be this month/two months or however long it decides to be… I find that a total pain as I have always been as regular as clockwork and having my body going all erratic on me just isn’t how it should be behaving. Though I am hoping that the reason behind all this is just an age thing being egged on by tamoxifen. Hopefully will soon find out for both of us .
Im offski to “feed” Christmas cakes, might get overcome with the brandy fumes…mmm way to go ! Have a nice weekend xxx
