Hope they go ahead Mary Grace, it IS only a short procedure. Yes, it is a pain isn't it when you are single and have to get someone to take you home etc. I had a friend's husband picking me up as she had to be at a meeting and could not get out of it. He rang to see if I was ready to go and they came over to me and said "that's hubby on the phone..." ER, nope. Nurse's face was a picture!!!!!!
Excellent news Revcat, I've been wondering how you are getting on. Phew!! Enjoy NED and hoping that we all join you xx
Sandra, sorry I have just seen this. My pre-op (and I have had several of them as this is the 5th surgery in 20 months (WLE, re-ex, 2xlipofill recon and now this... Do hospitals do nectar points I wonder...) usually consists of height, weight, blood pressure, a form full of "have you ever suffered from" various ailments, to which my answer is usually no, stick a swab inside your nose to test for MRSA, a bit of "what previous surgery have you had and are you allergic to anything."
Sometimes, they do a blood test, but not always. Don't even know what that is for... Not aware of seeing any results ever, so whether it is blood group testing or discounting something I'm not sure.
Quick update. Hysteroscopy scheduled for this afternoon surgery surgery. Arrangements to get home are made. This is when being single sucks. Sod's law says I have a cold. Wasn't sure if this counts as a "respiratory infection" It is only a head cold but no chance of them not noticing. Rang the day surgery and they said go in anyway, it will be the anaesthetists call whether or not he thinks I am well enough. I am thinking "short op and I am usually fine" so would be keen to go ahead but there is a chance they won't let me 😞 xx
FINALLY! After five and a half weeks, three continuous days of phone calls and being passed round different hospitals and secretaries, I got a call to say the results from my hysteroscopy were 'normal', so that's excellent news. They will send me a letter "when they get around to it" (direct quote). Nothing was said about follow up so I will speak to my GP in the not too distant future to see what she thinks... from what I can gather this quite often recurs once it's happened, which would prompt me to consider more radical options.
Anyway, for now I will enjoy being NEDdy at both ends!
Good luck with your op Mary Grace, we will have to compare notes. I do wish the medics would all read the same books though.... my consultant said the opposite to yours ! That being on tamoxifen gives rise to a significant amount of women having endometrial thickening. I am ER and PR 8/8 and as a result as soon as I had my diagnosis I was told to get my mirena coil out asap. I also asked about coming off tamoxifen as having a general but was told to stay on it.
What did you have done at your pre op ? Mine is meant to be next Friday but if I have to drive two and a half hours just to get weighed and blood pressure taken I won't be too happy...that and the possibilty of picking up a dose of winter vomiting disease which is rife at that hospital ! Eeeek !
PS: Glad you have a date too Sandra, I think we will be doing this and waiting around for results the around the same time by the sounds of it. I was told results are usually 7 days but could be 2 or 3 weeks with it being Christmas. Does sound like ou are waiting a long time Revcat, hope they get a move on xx
Hi Revcat, I am making progress. I had a consultation and, as expected, they said they would have to a hysteroscopy and biopsy to find out what is going on. Ultrasound shows some thickening though he did say that is "quite usual" with tamoxifen and it would be rare for it to be anything serious. He said either a) it will need no treatment, or b) would be something that they would usually use a Mirena coil on (which my onc would need to debate as I am p+ 8/8) or c) if sinister it would be hysterectomy and ovaries removed (yikes!! Don't need them and can even see pluses, but sounds like major surgery).
I've been taken off tamoxifen for the duration (boo... I would take it forever if possible) but will probably be put back on it if either a) or b) are the case. I used this to say "pretty please do this quickly) and it obviously worked as he has scheduled it for 20th Dec (two weeks from consultation) and they did the pre op there and then. So progress, and at least sort of a plan.
Just want it done now.
That sounds like an awfully long time to wait for results. Hopefully no news means good news, but it would be good for you to get the all clear so that you can breathe more easily xx
Glad you finally got a date Sandra - they don't exactly shift themselves do they? Hope your daughter has a lovely birthday and you are able to enjoy Chrismas withut being distracted by thoughts of hysteroscopies.
Mary Grace are you still waiting?
Still no reuslts - left a stern message on gynae man's secretary's phone today... I'm not concerned - surely they'd have got back to me PDQ if anything was wrong - but mildly irritated that it's taking so long to put a letter in the post. Will get my naggy head on!!
Hi all, well I was phoned by the hospital today re comimg in for hysteroscopy, could I make it on the 24th December ? !!!!! Eh....noooo, don't think that is ideal, the hospital is two and half hours away, I am usually rubbish with general anaesthetic, it is my daughter's 16th birthday the day before and Christmas day the day after......so luckily managed to wangle the 27th to go in. Will keep you posted.
Hope you are all doing well and you get your results soon Revcat.
Glad to hear you are back home and that you feel reassured by the surgeons comments.
Seems I will be following in your footsteps. Actually our experiences sound eerily similar - I am also 49 now, 47 at dx and have taken tamoxifen for around 18 or 19 months. All was fine, and not too many SEs until a couple of months back when some breakthrough bleeding and a bit of womb discomfort like when you have a period. GP referred me for a pelvic ultrasound - and I only went along because of your experiences so thank you for that, didn't even think to mentio. It at first - which shows some pelvIc thickening. Been referred to gynae consultant this morning and likelihood is that I will also need a hysteroscopy and biopsies so that they can check what it's going on.
I will also end up being nursed by my cats - although my teenage sons may turn out to be better at making cups of tea.
Getting a little fed up with the general anaesthetics, with a couple of recon ops this year that will take it to three this year and five in the past 20 months since dx. I think they take it out of you in themselves, but nor am I terribly keen on having a hysterectomy. Not that I need my womb, ovaries etc these days and it might well be medically safer post dx to have them gone, but it is more surgery and more scars, so it feels like a big decision. That's if I have a choice. I guess that if there is anything sinister, it will be taken out of my hands.
Hope you are recoverIng well Xx
Hi Sandra, I had to be there at 8 a.m. but did not go in for anaesthetic until nearly 11 a.m, I was back in the unit just after midday and left about half past one. The procedure takes about 30 mins. They seem to like you to stay in bed for an hour back in the unit, during which time you have to eat and drink; they like you to visit the loo beofre you leave to amke sure everything is working with your bladder!!
Glad all went as well as it could RevCat and fingers crossed for everything being all right when you get the results through. I got my bc results back in ten days post op I wonder why these take four weeks....but that sounds like the same as what goes on here . (I'm in North Wales). How long were you in the hospital for? I was told that I would be in for the morning, procedure in the afternoon and home in the evening, will be a long day as we live nearly two hours away !
Take it easy and hope you not rushing to the loo too much with all that fluid intake.
Marygrace I am not sure what they do if there is just a thickening and nothing sinister, I guess it is just something that they would monitor but possibly give you the option of coming off tamoxifen perhaps, but I think I would be happier to stay on it for the allocated time. I'm pre menopausal too but my cycle length anything from 31 to 66 days and just hoping that all this has got a lot to do with menopausal madness kicking in.
Thank you everyone for your kind wishes - very much appreciated and I carried them in my heart as I went off to sleep!
I am back home and in the comfort of my own living room, with my gorgeous cat acting as nurse (and phone with speed dial to friend in case of need). All went well, and apart from some cramping (fixed with OTC painkillers) mild bleeding and a bit of pain when I pee (anaesthetic side effect evidently) feel right as rain. Gyn. man said he found and removed a polyp, which will be tested along with whatever else they scraped out. Results in about four weeks - but reassuringly he said nothing that looked sinister. So a quiet afternoon in prospect as I chill and drink GALLONS of water to flush out the anaesthetic.
Hope all goes well Revcat and they can let you know asap the outcome. I had hospital on phone yesterday telling me the ouchey sample they tried to take was inconclusive so will def be going ahead with hysteroscopy, doh I thought that had already been agreed..so am still waiting for a date though again they tell me that it is classified as urgent....maybe the sort of urgent that might get seen before Christmas I hope. Got swollen painful nodes in armpit and went to docs and got referal to breast clinic , they managed to get me appointment for this Thursday, that's more like it. Different bits at different hospital must make all the difference.
Welcome to the ouchey camp Marygrace, I didn't find the scans too bad, we can compare endometrial thicknesses ! Mine was 19mm. Hope you get your appointments sorted out quickly too.
Hi Revcat, think I may be joining you in the ouchy procedure camp. Similarly, after two years on tamoxifen I have some breakthrough bleeding. As it isn't heavy they aren't going straight for hysteroscopy but have decided ona pelvic ultrasound to "get a sense of what is going on there." Seems endometrial thickening is on the list of possibilities (as a SE tamoxifen ) along with nastier possibilities so they have to check it out. Real nuisance as tamoxifen has been fine for me other than thus and seems (fingers crossed) to have done the job for me. I would be sad to come off it and am pre-menopausal so letrazole (sp) would only be possible with Zoladex.
Hey Ho, one step at a time, will see what they conclude, whether they think it is something or nothing and what they suggest. At least I have a next appointment in diary with the BS for early Dec so can hopefuldisc cuss the resuthe and next steps then.
Hope it goes well for you and proves to be something minor xx
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
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.
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.
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.
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 the Anaesthetists 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!
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...
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.
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
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.
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!
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
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.
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.
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.
Just hearing of your problems makes me grateful of the timing of my diagnosis (note just the timing not the actual diagnosis!)
I was diagnosed with BC one Monday in the beginning of August and two days later on the Wednesday was due to have a Left sided Oophectecomy as a day patient.
So I went along on the Wednesday morning for the Oophectomy and the surgeon asks if there had been any change since my pre-op. Well just the one but it maybe a big change and I told him of my BC diagnosis two days earlier.
Oh he says, well that could change what we do, obviously with your permission and your thoughts considered and he proceeded to give me a number of options and explained the major pro/con of each:-
Go home and have nothing done, you will continue to bleed and the pain you are experiencing which is the reason we were doing the operation in the first place and we will rearrange to do the surgery once the BC biopsy results are received by the BS
Have the op as planned - however following WLE and SNB the BS will want to give you some hormones, this hormone will produce a thickening of your womb lining and may even cause further bleeding and would make things difficult if you experience any further problems
Have a full hysterectomy. will take a bit longer in the operating theatre, will need to stay in hospital for a couple of days and recovery will be a little longer
I decided to go with the full hysterectomy, which he agreed was probably the best opton and the following week I saw the BS for the biopsy results. I explained what had happened the week before and he was happy that the Gyn surgeon had took away the womb as well because in his opinion and as I would be post menopausal the drug treatment would be straightforward in his opinion and I could blame the gyn surgeon for my hot flushes and not the BS
I am happy to say that I have now had the WLE and SNB (nearly three weeks ago) and feel as if I am recovering well, feel okay in myself etc. I know that I still have Radiotherapy to go but hoping that I might be able to return to work in between then and now, I am asking for a meeting with work to discuss this.
Hope you get something sorted to your satisfaction soon
Hi RevCat, sorry to hear you are having difficulties.
I don't have experience of these but have had experience of one of the proposed treatment options, the Mirena or progesterone coil. I am also strongly E+ p+ 8/8 on each. Although I had been told for years that the level of progresterone in the Mirena is very small and would be no risk, I know of several other women who used this over a period of years who also had bc. It could be entirely coincidental but my BS told me to get it removed as soon as possible. Other people have not had this advice or have been prescribed it in treatment of other SEs.
I can only reflect my own experiences and what I was told, and I would not wish to take the risk of using it if there is any chance that it can put me at greater risk of a recurrence. That said, the alternative surgery sounds like a significant op, so it is a difficult choice to make. Maybe I would see it differently if that was my choice xx
Thanks for clarifying that Rev. Hadn't heard of Tamoxifen causing EH so was interested to learn about it. Apparently Tam doesn't encourage Oestrogen in the womb, it acts as an agonist (it mimics the action of oestrogen, in the uterus). Maybe that's why Tam is linked to an increased risk of uterine cancer.
Is it possible for your docs to test to see if you're post menopausal? Would have thought AI's were the simplest solution, and hope this is an option for you.
Golly Libby that sounds like a horrible experience - glad you onc took control. I was discharged by the oncs at the end of my rads, but am still seen by the surgery team, and they have an excellent MDT approach. Once I have some results from the gynae people, and assuming it is 'typical' rather than 'atypical' thickening, I will definitely ask to speak with someone in the team, ideally an onc, before making any final decisions. Thank you for sharing, that's helpful to my mulling.
Hi Rev Cat I had PV bleeding last year. My circumstances and experience are rather different - I had been on Arimidex for a year when my GP changed my meds to generic anastozole ( yes I know it is supposed to be the same thing ) I was completely floored by the severe and multiple side effects. These were dismissed by my female GP although she did take the PV bleeding seriously and off I went for transvaginal ultra sound which showed definite endometrial thickening. I had 3 separate trials with generic anastrozole and the same se kicked in and more transvaginal u/s showed thickening. I was eventually offered a hysterectomy after endometrial biopsies.I should add that i was post menopausal on Dx and strongly 8/8 ER and PR +ve.
Since then at my Oncs insistence I have been back on Arimidex no more bleeding and thankfully didn't need a hysterectomy either can't say my GP was happy about it though.
Perhaps AI maybe a consideration for you? Can you discuss this with your Onc?
Thank you all for your replies - it is SO helpful to hear what you have to say.
Lemongrove, you ask if this is Tamoxifen induced, the answer is actually yes. I don't have all the correct science language, but essentially Tamoxifen blocks oestrogen in breasts and enocurages it in wombs. One of the less known uses of Tamoxifen is in relation to infertility... The possiblity of switching to AI if I am post menopausal (no-one has done an FSH blood test so who knows) is a good one, thank you for that.
NIM41 thank you for sharing your experience - I may well take you up on your offer of a PM if the surgical route looks likely (it has attractions for some of the reasons you mention).
Herbgarden, I am so sorry you have secondaries, but I am glad you and your Mum are both getting good treatment. Her story is very encouraging... It's still basically a D&C procedure they just use a camera to have a good look around as well! I hope the capecitabine keeps those mets at bay and that you are able to emulate your Mum and live to a 'ripe old age'.
Ragamuffin, thanks for the hugs - much appreciated. I'm not overly concerned, partly because I knew this could happen and also half expected it (if that makes sense). I am slowly filling up the boxes on the Tamoxifen side effects bingo card but still think it's preferrable to the alternative.
Thank you all again, hope you are having a good Saturday, wherever you are and whatever you are up to.
Hi Revcat i just wanted to share my mothers experiences although they are somewhat different because she was post menopausal at first diagnosis. She was diagnosed with a locally advanced breast cancer with a number of lymh nodes involved some 19 years ago and at the age of 71. she had a mastectomy and radiotherapy. She started tamoxifen but after about 4 years had a vaginal bleed. For investigation and treatemnt she had a D&C (Dilatation and curatage)possibly old fashioned now but essentially they scraped her wonb.) she was told the bleeding was secondary to the tamoxifen and to stop it. She had no other investigations or treatment.
Some 13 years after her primary she was diagnosed with a secondary in her pelvis...the lesion was biopsied so was definately a secondary although i don't think it was actually causing the symptoms she was investigated for! She was recommenced on tamoxifen until she reminded them it caused bleeding earlier.....incidently it was the same year I was diagnosed with a good prognosis breast tumour with no nodes! Since then she has been on arimidex (for 6 years) with no additional symptoms and no evidence of progression. We recently celebrated her 90th birthday. Unfortunately 18 months ago i was diagnosed with spinal mets but at present am doing ok on capecitabine....she may well outlive me!
It's really tough isn't it, when another bc se comes up. I hope that your tests will come back negative - ie no nasties in the womb lining. Whilst I haven't been through your experience, I thought sharing would help you puzzle together what you may decide when you have all the information available to you.
I have been on Tam for 21 months and do not suffer the se's you describe. My cancer was strongly ER/PR positive and when I recognised monthly cycle symptoms 3 months post chemo, I panicked. My period had stopped after FEC1 and really, I did not want it back.
After a discussion with my onc, he referred me to the gynea and had a bilateral salpingo oophorectomy (only tubes and ovaries) in July 2011, so if you ever considered this and had questions, then send me a pm. I remained on Tam following this procedure, but will switch to an AI as strictly speaking I am post menopausal.
It's never an easy decision to undergo radical surgery, my decision was made based on a number of factors such as size of lump, node involvement and a strong family history of both bc and ovarian cancer.
Hope you'll get things sorted soon! xx
Rev I'm a bit confused by the term Tamoxifen induced Endometrial Hyperplasia, as as far as I'm aware Tamoxifen doesn't effect hormone production, so I don't see how it could cause EH. I had EH myself a few years ago, and as far as I'm aware it is caused by un-opposed oestrogen (oestrogen that isn't counter balanced by progesterone). As Tamoxifen works by preventing proteins on the cancer cell being stimulated by oestrogen, rather than preventing oestrogen production , I can't understand how it could cause EH (my understanding is that hormone levels are not altered by Tam).
When I suffered with Endometrial Hyperplasia I had a DNC, and was given progesterone to counter balance the oestrogen in my body (which as I was post menopausal was probably being created in the fat around my waist). But obviously if you have / have had BC, the last thing you want to do is put more hormones into your body. Consequently, I just wonder if the best solution for you would be to go onto an Aromatase Inhibiter, such as Letrozole ?. Because this would prevent oestrogen production. Of course that would only work if you are definitely post-menopausal.
Hope this suggestion helps.
Thanks Moser, that's really helpful. I get the period-like pain too, on and off, with peaks and troughs.
Really encouraging to know it was 'something and nothing' in that repsect, and that it might 'just' mean a drug change. Sorry the exemestane was unsuccessful for you, and hope your current regime is 'doing hte business'.
hi Revcat, I had huge endometrial thickening, no bleed, but period like pain, after 2 years on tamox when I was 49. had the procedure you describe under general anaesthetic, but was found to be nothing but thickening, nothing unpleasant and all the onc did was take me off tamox and on to exemestane.The pain went away. However the exemestane did not work for me, but that is another story. So there may be no problem at all - hope so. xx