Quick update - have spoken to BCN to ask if Mirena or endo ablation are safe for use with Tx. She says Mirena is, but I wouldn't touch it with a barge pole. She'll ask about the endo ablation and I'll post an answer on here when I get it.
Hope everyone's doing OK.
Hi all, just back from long-awaited appt with onc.
He said having periods is fine, including heavy ones if the gynae has ruled out any problems (typical bloke!). He said the 'jury's still out' on whether there is any benefit to pre-menopausal women in stopping them, there are some trials going on at the moment, but said he could do it if I wanted to. The options are more drugs, oopherectomy or irradiating my ovaries to render them useless. I don't fancy any of those, or the side-effects that go with them.
I asked what to do if periods are persistantly heavy and he said that's the gynae's department. My endo biopsy was normal so I don't know what else is an option apart from a Mirena which I definitely don't want. Deep joy. Feel stuck between a rock and a hard place. I'm not ill, I don't have BC any more, but I get this every month. Wonder if it's worth bothering the GP again?
Flip RR - brings new meaning to 'use the force Luke'!!!!!
Update from me also, my BCN told me to stop taking the Tx immediately and she's getting me an appt with my Onc.
Just thought I'd post an update, tho' not much to report yet.
I had an internal untrasound scan a couple of weeks ago. Wasn't sure what that meant, until the lady doing it turned to face me holding what I can only describe as something that was a cross between a vibrator and a light sabre! I thought 'OMG' as it looked far too large for where it was going, but actually it was fine, and didn't take very long either.
I'm still waiting for the results of both that and the biopsy I had done earlier, but I'm assuming that if anything sinister had shown up in the biopsy I would have been called back urgently.
And I've had no further bleeding so far.
As an aside, I was at the reconstruction clinic this week, and am now on the waiting list for an LD flap. Hoping that sometime next year I will be able to start putting all this behind me and move on.
Another fellow sufferer here!
I also have periods that have returned with a vengeance after a short holiday after chemo. A bit about me...
I'm 44, dx Aug 08, mx followed by 6xFEC, 15xradio then tamoxifen. My periods stopped after the 3rd chemo and stayed away until July. Then I had 5 weeks of continuous but strange bleeding which prompted me to see my GP. I also got the quick referral to gynae and 2 weeks ago had a hysteroscopy and endometrial biopsy.
I'm still waiting for the results of these but in the meantime have just started a horrendous period, flooding, pain, the lot.
I'm going to ring my BCN and GP tomorrow. The BCN to ask if my Onc might want to see me as I dont think this is supposed to be happening, my GP to chase the gynae results and follow on from there.
I'm fed up with this already and if there's the vaguest chance I can be offered endometrial ablation or anything else I'll jump at it as I can't go on like this.
Im 45 and was premenopausal prior to chemo and had noperiods for a yr & thought that was me as having hot flushes etc. Well my period came back last week with a vengance....pouring is the phrase i would use and absolutely gutted 2 of the milder words of choice that i uttered. Im now waiting with baited breath to see what happens next month. Was sure it wasnt going to come back because of my age but wrong. Will just have to wait and see what happens next. Everyone says i should be pleased as it means my body getting back to norrmal but i dont feel that way. Its the one thing i didnt miss and the haviness really drained me. oh the joys of being a woman.
love gail xxxxxxxxxxxx
I have had a very similar experience to you. I am 46 and I was diagnosed March 2007 and had my last period in June 2007. Then in March this year had a light period! Then 6 weeks later had another very heavy period. 4 weeks after than an even heavier period (I am calling them periods in retrospect as at the time I think you would term them post menopausal bleeds.
I was referred to the hospital quite quickly and I had an internal and a trans vaginal scan. Everything was normal - endometrium as it should be. However, I had atrophic vaginitis which accounted for lot sof problems Id had with infections and the like. Blood tests confirmed that I was still peri-menopausal but further from the menpause than Id been in September 2007!
Gynaecologist was willing to remove uterus and ovaries as bleeding so heavy but I thought I would speak with my onc first. She said that it was not worth it due to my age (46) and the fact that I was heading into the menopause - it is a big operation. She said if my bleeding persisted she would give me something to turn my ovaries off rather than putting me through an operation.
And the irony is Ive not had a period now since May! I saw my onc last week and she thought it might have been a last hurrah on the part of my ovaries and I may have the occasional period leading up to the menopause! But Im not nearly 4 months again since the last one!
I hope your appointments go okay but both the onc and gynae people did say that it was very unlikely that there would be anything sinister but it was good to get things checked quickly.
Let us know what happens.
I too really don't want to go through the menopausal symptoms twice.
Well done with the running, I managed a 5Km RfL in June and have signed up for 1okm in October. What madness!!!
take care Wizz
Thank you, Roadrunner, for keeping us all informed. I've had periodic bleeding since starting Tamoxifen (in November) afte chemotherapy (eventually) stopped my periods and, like you, I have been concerned for all the reasons you've mentioned. I intend to ask the oncologist if he would refer me to gynae when I see him in September - and I must be persistent.
In the meantime, I wish you all the very best of results.
Had my appointment today, thought I would let you know what happened. I had an internal examination (all OK apparently) followed by a biopsy of the lining of my womb - like having a smear test, except it took a bit longer and was more uncomfortable. I will get an appointment for a scan through the post, but it should be in no more than two weeks. After that the gynae consultant will write to me with the results. There are three possibilities:
Most likely - it is a side effect of the tamoxifen, nothing sinister, nothing to worry about. I may continue to get random bleeds while on tamoxifen.
Much less likely - a reversal of the menopause, but at my age (nearly 47) and two years after my periods stopped, it is still possible.
Very unlikely - cancer, either endometrial primary, or BC secondary (never heard of secondaries here, but he says it can happen, although rare).
So there we go, just need to get through the next few weeks till I get the results.
I had my appointment in the post yesterday, along with a leaflet about what to expect. My GP said I might need an ultrasound, but it says on the leaflet you get an internal examination first, then they decide whether u/s is necessary and that involves another appointment.
I've got a telephone consultation with the GP next week as I'm a bit worried about being off the topical oestrogen for more than 2 weeks. Before I was on it I was having panic attacks, tearful episodes and didn't sleep properly and I don't want a recurrence of this. However, this was all round about the time the oncologists sent me for counselling, so I think that stress may have been a factor.
I try not to get too concerned about things, but in my case the tests were clear and I was told I didn't have cancer, just a fibroid. They found the cancer when the fibroid was removed a few weeks later.
My appointment has just arrived, for Wed 26th - exactly two weeks on from my GP appointment. It is with the dept of gynaecological oncology - the oncology bit of that is freaking me out, I know what you said about not reading too much into it, but I can't help it. It is terrifying me in a way that finding the lump never did. At that time I assumed I would be one of the 90% with a cyst or whatever, this time I'm terrified of getting bad news.
Well after seeing what you wrote, & looking up post menopausal bleeding, I decided I couldn't wait two weeks to see my GP. So I saw a locum today. He is referring me on the urgent referral system, he thinks the wait will be 2 - 3 weeks - I hope it's not the 7 week delay you have. I think I'll go demented with worry if it is. It's not so much the possibility of something sinister being wrong that is bothering me, it's more just having more hospital appointments, and possible treatment if they find something that needs sorting out. I'm currently waiting on an appointment at the reconstruction clinic, and one unknown thing loomimg is enough for me.
Fantan - I've been having bad menopausal symptoms for the last two years, I don't think ovary removal could make them any worse! But I'm not keen on another op.
I've managed to get an appointment for the post menopausal bleeding clinic in 7 weeks time. Not happy about the delay and I said to the appointments person it was an urgent referral - she said we know but that is the waiting time for urgent cases. Apparently the Consultnat Gynaecologists have had a look at the info from my GP and have decided they are fine with that length of delay.
Spoke to my breast care nurse, but she said it's outwith the jurisdiction of the breast clinic. However she did suggest getting a telephone appointment with my GP for reassurance; she also feels my GP should look to see whether there is anything else I could use in place of the topical oestrogen pessary for the time being. I can feel it wearing off now as I am 3 days overdue for a dose and by early next week the hot flushes and feeling a bit panicky will start again.
Just to say that my onc said the menopause from ovary removal will be no different to the zoladex, and 6 wks after having my ovaries removed I am no different with just a few mild flushes a day.
Thought I'd let you know my experiences. I too was dx at 47 in 2005. No chemo but hormonal therapy. Started tamoxifen as pre menopausal in the April and then started zoladex in the July. Had zoladex for 2 years and had all the symptoms of a false menopause. I finished the zoladex in 2007. Rather hoped I'd been through the real menopause but no such luck. 14 months after I'd finished the jabs I had a horrendous period - really heavy and lasted longer. I then had another the same 5 months later and then a much lighter milder one 3 months after that. This was in April this year, so about 4 months ago. At my check up with the onc he was surprised I'd had periods because of my age. I'm praying the last lighter one is the last one as I don't relish going through the menopause again!. I'm still on tamoxifen and we're going to review it all next year and he'll test my hormone levels to see if I continue on tamoxifen or change to an aromatase inhibitor or stop medication altogether.
As for removing the ovaries - as far as I know it's a simple enough op, but it depends how you feel about having an op and losing the ovaries altogether. It might just give you the peace of mind as regards oestrogen in your body but you might get bad menopausal symptoms for a few months until it all settles down.
Good luck with what you decide and I hope others who have had theirs removed tell you about their experiences.
RoadRunner, my GP said it's normal protocol for post-meno women to be referred as a matter of urgency, and patients shouldn't read too much into that. I also had laser surgery for a precancerous change to my cervix 21 years ago and have to have regular smear tests, so she noted all this on the form she filled in for the clinic referral. The only reason I managed to get an appointment for the GP who handles well woman stuff so quickly was because she had a cancellation when I rang last week - normally it takes about 2 weeks to get a slot for her.
The only thing I'm bothered about at the moment is the ultrasound as I've had one on my abdomen before and you have to drink 2 pints of water an hour before it - I had to wait ages as it was being done privately and the Consultant was held up at the NHS hospital down the road. They had to get someone else to do it as I thought my bladder would burst! I was on BUPA at the time and they waived the fee.
I think a lot of it with the zoladex issue may be to do with how hormone pos you are.
I was 8/8 for er and pr, age 34 at dx, so I was put on both zoladex and tamoxifen. I have no real trouble on these drugs, just a few minor flushes.
However, after 15 months of zoladex I had my ovaries removed, as when the zoladex finishes after 2 years I would still be very pre menopausal.
This was a very minor op, day surgery, keyhole method, and Im very glad Ive had it done. I think this would be a good option for you if you were 100% hormone positive, so you dont have to go through the menopause twice.
I will stay on tamoxifen until 2yrs menopausal and then change to femera or similar.
Thanks for the info. I have an appointment with my GP, but unfortunately he is on holiday so I'm having to wait two weeks (didn't fancy seeing someone else). Though I'm now a bit concerned as you have been told to get an urgent appointment.
It's reassuring to hear that the tamoxifen should deal with any amount of oestrogen swanning around inside me. However, it doesn't deal with the menopause twice over problem! I really can't face going through all this all over again in a few years.
I'm going well. Did the 10k race for life this year, and am hoping to do a half marathon next year.
We've communicated before! (about running I think!) great to see you again on this site and hope you are going well....
Anyway back to your question, I'm afraid I can't comment on the menopause bit as I am very pre-meno (just had the big 4-0) but in the hope to allay your fears about the amounts of oestogens circulating, I was diagnosed Jan 08 (38yrs) and am now on Tamoxifen. I had periods all the way through chemo only stopping after the last cycle of Tax and then I only missed 3! I mentioned my concerns about the oestrogens circulating to my onc and he said the tamox binds to oestrogen receptiors on any stray cancer cells that might be around in the body and stops them dividing and doesn't always actively reduce oestrogen levels although it does in some people hence the hot sweats etc and that's also why Tamoxifen doesn't lead to thinning bones like the other drugs can. He was not concerned when I questioned him and also said in my case he wouldn't prescribe Zoladex as the side effects would out weigh any benefits in his opinion.
Hope that offers you some reassurance in some way
Roadrunner, I went to see the woman GP in my practice this morning and she did a smear test there and then as I was due for a reminder. There was a little bit of blood on the sample so she said I might get asked to have another test.
I had a read up over the weekend and this is classed as "post menopausal bleeding", so you have to be referred for it. I have to ring a number I've been given to get an urgent appointment for a post meno bleeding clinic in a couple of days (the GP has sent all the details off to them and it takes a couple of days for them to receive and deal with the forms). She reckons in my case it's a side effect of the Vagifem pessary I use once a week for dryness and to counteract flushes - checked the box myself and this is listed. She also told me even when you are post menopausal you sometimes get a huge burst of hormones very suddently, which could account for the 2 hot flushes I had last week. However, protocol dictates that they have to refer you for an ultrasound scan and to see someone from gynae just in case; this is on the NHS Choices site and also on most of the sites dealing with menopause and gynae stuff. Hope this helps.
I'm not sure I'm still a younger woman at nearly 47, but this seemed the best place to ask this question.
I was dx in Feb 07 at 44, and my periods stopped in Aug 07 during chemo. I thought that was the end of them. However, last week I have just had my first period in two years. I really don't want this, for two reasons. Firstly I am scared at the thought of all that oestrogen in my body, and secondly I have been having hot flushes now for two years which is bad enough, but the thought that I could go through a natural menopause in a few years time on top of this is just too much.
So my question is,what are my options here? I am aware that it is possible to have the ovaries removed, but is there also a drug option that will stop the ovaries working? And what are the pros & cons of this? I am planning on seeing my GP next week, and I would like to go armed with information, so any information or advice would be very welcome.