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walkabout
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21-04-2013
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20-08-2019
07:26
JCJ does your husband have Parkinson’s ? My dad had Parkinson’s with vascular dementia. With both it is a very hard disease to live with as movement and cognition go.I hope you got some rest in your holiday.
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22-03-2017
10:55
Thanks for your good wishes ....it's been done but now begins the wait . Could be 2 to 3 weeks . Radigrapher was not one for giving anything away . I mentioned I was moving house in about 2 weeks and results before I moved would be great . .. but it fell on slightly deaf ears . She said ring and tell us your new address 🙂 at that point I gave up ! So I will immerse myself in de cluttering and hope it provides distraction therapy . Slightly thoughtful after my recent gynaecology issues..Was I was right to switch to anastrazole from tamoxifen a year ago ..... anyway on a much happier note my mum's 80th birthday to look forward to this weekend.
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20-03-2017
10:45
Great news JCJ.I go for my annual mammogram tomorrow.last year I had to wait nearly 3 weeks for results and I totally empathised with your agonising wait. I was really badly effected by the delay last year and ended up ringing and pleading for info !!!
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08-03-2017
10:03
Hi Interestingly I have had something sort of similar. B.C in 2013 aged 48. Started on tamoxifen may 2013. I was on progesterone pill at diagnosis but had stopped having periods on it. No bleeding whilst on tamoxifen apart from spotting late 2013 which was a polyp which was removed . I had several blood tests done 2015 -2016 & in February 2016 changed to anastrazole. About 10 weeks later ( may 2016) I had a light bleed for about 4 days and that was repeated in December. After the 2nd bleed I was referred back to gynaecology. Scan /biopsy of womb lining showed simple hyperplasia. Normal treatment would be progesterone which I can't have because of the b.c. Saw gynaecologist again last week. She rescanned me and said womb lining looks thin but she has put me on list for hysterectomy ( although I have been told it could be a year wait ! ). They will biopsy womb lining again in 4 months to check hyperplasia.her view was to stay on anastrazole & she thinks I am probaby post menopausal despite the bleeds ! I am flummoxed by it all and it does worry me that the anastrazole will not be working.I have my mammogram at the end of March ! To be honest the impression I have is that it is very difficult for them to be certain. I would go back to tamoxifen but that probably isn't advisable because of the hyperplasia. So i am very much fingers crossed ......
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29-01-2017
06:06
I hope it goes well tomorrow Ali and you get some clarity. I have to wait for an appointment from the gynaecologist so I probably won't know more for a few weeks . I certainly don't want to switch back to tamoxifen as that won't help. I am guessing if they can't treat the hyperplasia and it doesn't right itself which it appeared to do last time then they may recommend a hysterectomy. Oh well I can distract myself tonight with call the midwife followed by apple tree yard accompanied by a glass of wine I think 🙂
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29-01-2017
09:39
Sorry to but in again but just thought I would post an update for Ali in case it helps. Although scan showed nothing results of biopsy of womb lining showed simple hyperplasia. I will be going back to discuss treatment but usual treatment i.e. Progesterone almost certainly not suitable. I am doing a lot of my own research. I had the same pre bc and tamoxifen and did question whether tamoxifen would be suitable for me but oncologist didn't see it as a problem. Although I have been on anastrazole for a year now I did take tamoxifen for nearly 3 years and I am researching whether the effects of tamoxifen could still be there and have caused or contributed to getting the hyperplasia again.i think that might be the case. If not a bit worrying as being on anastrazole I shouldn't have much oestrogen . Of course had a couple of dark moments in last couple of days thinking .....if I've had too much oestrogen floating around will the bc be back ....trying very hard not to go there.if it is a legacy of the tamoxifen I would feel less worried.hope you are getting on ok. Hello to everyone else .
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08-01-2017
09:44
Excuse me for butting in but wanted to reply to Ali's post ....as I have just had a similar thing. I switched to anastrazole in February 2016 after 2 years 10 months on tamoxifen and after several blood tests indicated i was post menopause. I was 51 but had not had chemotherapy. After about 10 weeks I had a light bleed for about 5 days. Discussed with GP who agreed we could wait and see. Nothing for 7 and a half months and then exactly same thing happened christmas week. I went back to gp and she referred me to gynaecology team . Was luck to get seen next day . SCan didn't show anything except a cyst test . A biopsy of lining of womb and blood test have been taken as routine. Presuming they do not show anything then they will rescan in 3 months to check what cyst is doing but she couldn't really explain what is going on.although the tablet info sheet mentions it nobody seems to say oh yes that could be it. I would go and get it checked out but hope fact that my tests so far haven't revealed any Mr nasty may slightly reassure. Good luck. It's horrible when anything like this comes along.good morning to everyone else - I enjoy reading your posts 🙂
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01-05-2016
09:47
9 weeks ago I changed to anastrazole from tamoxifen ( I was on tamoxifen for 22 months ). 2 blood tests had confirmed I was post menopausal. Yesterday I experienced some very light spotting in the morning which them stopped.I have looked at the info leaflet with the anastrazole tablets and seen vaginal bedding is mentioned as a rarer side effect in first few weeks and this is confirmed in info on the macmillan website and in the info leaflet from this site - the suggestion is it is more likely if you change from another hormone tablet ie tamoxifen.despite this I am a bit worried does 9 weeks after starting count as the first few weeks ? Also worried it could be my periods returning now I am off tamoxifen in which case I shouldn't be on an A.I as it won't work . Anyone experienced similar ? Thanks.
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22-08-2015
08:13
Hello - just thought I would share a recent experience. I started taking Tamoxifen in May 2013 . Initially I had Relon chem for 3 months and then Wockhart for 2 years. Picked up new prescription last week and it was Teva - to my surprise it has made a huge difference in a week. My hot sweaty moments have lessened significantly and I have had 2 nights when I have slept all night without waking . Went over to my chemist this morning - their new supply is back to Wockhart but I am going to call my GP next week and see if they will prescribe Teva - that way the pharmacist can try to source it. If GP objects - I will fight back. I see no reason why I should suffer unnecessarily . I am sure we are all different but I suppose for anyone struggling with Tamoxifen this would make me say - do try different brands as I am genuinely surprised at what a difference it has made for me.
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16-08-2015
06:12
Hi - sorry you have this to worry you . I haven't had the same but about 3 months after my radiotherapy finished I woke up one morning with a yellow crusty nipple . Like you I hadn't had any skin issues during or immediately after the rads so made no connection . Had a major wobble . Went to GP who said - don't know what it is and referred me back to breast clinic . Saw the consultant and he said that will be the rads - wasn't worried and said can take years for the effects to work their way through . I hope you will soon get the same good news . Take care. I am sure we all empathise with how you are feeling - everything like this is such a worry .
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28-07-2015
11:13
It is a very special person who , with so much to deal with , can still spread happiness that is infectious and offer so much support to others . Both from this treasured lady came so naturally and I am sure she has inspired many by her zest for life and laughter .
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21-05-2015
08:52
I asked my oncologist and surgeon about continuing to drink after diagnosis and both seemed surprised I had asked ! I think I asked because looking on the American sites the ladies there seem to often be advised to stop . I decided if the docs here thought we should stop they would tell us so have carried on with my ( one ) glass of wine a night but Everyone has to do what makes them most comfortable . I have been on tamoxifen just over 2 years.
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08-05-2015
03:28
Jo Thanks for your reply. Clearly your team must have thought there was benefit to you of taking the tamoxifen.I really don't know what I am going to do now. I think certainly for now and until I have the hysteroscopy on 18 May I will carry on taking it. My gynae team have said a definite no so far to a hysterectomy . Good luck with your rads.
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08-05-2015
02:42
Saw the oncologist today. I had gone to discuss possibly changing from Tamoxifen to an AI as I am having some endometrial issues . I am 50 and have been on tamoxifen for 2 years after a 7mm tubular breast cancer ( no node involvement ) treated with surgery and rads - 8/8 ER positive. He surprised me - he said he would not prescribe an AI as it would makle me feel 60 and he didn't want that . He then said he would be happy for me to stop the tamoxifen and actually seemed to have a preference for me to do that whether or not these latest round of gynae tests do show I have a problem. He said the difference the tamoxifen would make to my SURVIVAL rate at 5 or 10 years was negligible and if I got a recurrence or a new cancer they would deal with it !!!!!! I haven't made up my mind yet what I am going to do but I am quite surprised by his attitude. I thought tamox was the wonder drug for all us ER + ladies. What do you all think ?
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06-05-2015
10:46
Does anyone have experience of changing from tamoxifen to letrezole or another AI because the oncologist agrees they are post menopause ? I am 50 and haven't had a period for about 20 months - did have spotting after that which turned out to be due to a polyp - since it was removed 15 months ago nothing . I have been on tamoxifen for 2 years ( and did not have chemo ) but ideally would like to change to letrezole because of endometrial issues. I am seeing onc on Friday . Is he likely to say not long enough to be sure post menopause ? Could the tamoxifen have stopped my periods ? I have had my fsh levels checked and they came back borderline at. 30.3 . Thanks
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02-05-2015
09:59
Been on tamoxifen 2 years . Last year after spotting for weeks a polyp was found and removed ( benign ) . No further problems and no longer having periods ( for last 15 months - I did not have chemotherapy ) . Recent cervical smear reported endometrial cells so Gp wanted me to go for further checks even though I have no symptoms ( in some cases such cells can indicate pathology but usually women with pathology have symptoms - bleeding ). I paid to go privately to speed it all up . Scan showed lining 5.3 mm which she said is not too concerning but biopsy came back as scanty too little for assessment . Gynaecologist has said she is not that concerned and happy for me to wait a while and maybe have hysteroscopy in 3 months . I am struggling with all of this - if I have no symptoms now and presuming I remain a symptomatic either a hysteroscopy is deemed necessary now to rule out the small chance the endometrial cells were on the smear because of a tumour or it is clinically thought unnecessary ???? I am losing patience with doctors who say well yes it could be cancer and seemingly have no thought for the impact that has and the anxiety it causes. I went through 16 weeks of this last year and now again . Anyone got any thoughts ?
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17-04-2015
10:36
Hi - I haven't had the same experience but on my recent routine smear the result came back normal for the smear but endometrial cells were seen and reported on - so it is back to the gynaecologist for me on Monday . I have been on tamoxifen for 2 years and am 50 . I have already been through the whole range of scan biopsy and hysteroscopy once since starting on tamoxifen - a polyp was found that time and subsequently removed. I have now asked Gp to also refer me back to oncology to have a chat about the risks to me of tamoxifen. I am struggling getting the different specialists to talk - and have now decided to become a bit more assertive as I want a break from hospital appointments and to try to forget about my health and cancer and get on with living !!
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15-04-2015
08:40
Hello - looking for some help. I have been on tamoxifen since May 2013. 4 months after starting it I started getting spotting on a daily basis and was eventually diagnosed in November 2013 with a polyp which was removed at the end of January 2014 and reported as benign. Since having it removed I have had no symptoms ( that I have been aware of ). I am not having periods - doctors seem uncertain if I am post menopausal ( I am just 50 ). A couple of weeks ago I went for a routine smear and then went away on holiday. I came back today to 2 messages to call GP surgery - the smear itself was " normal " but endometrial cells were seen. I am seeing the GP tomorrow - having googled away I am fairly certain I will be advised to go back for the ultrasound/ uterine lining biopsy again but I just wondered if anyone has had this and can give me any pointers . Just before I went away I spent 2 weeks getting very stressed waiting for my 2 nd post diagnosis mammo results ( thankfully NED ) but it seems no sooner over one hump and faced with another . Thanks for reading.
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02-04-2015
11:29
Hi I started taking tamoxifen in May 2013 and had a polyp removed in January. 2014. I am pleased to say since it was removed I have had no more spotting. The op was fine and no great discomfort after and the polyp was benign . Hope this helps. . Good luck
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07-12-2013
12:04
I had my surgery at the end Of March ( WLE and SNB - the blue dye was used to locate the sentinel nodes ) , started on Tamoxifen in May and had 3 weeks of rads in June . About 6 weeks ago I noticed a small yellow crust on the nipple and a little bit to the side of the nipple of the breast treated. As I was at my Gps later that week ( problems with spotting and the Tam ) I mentioned it to her.She looked and said she didn't know what it was and cutting a long story short I was referred back to the breast clinic on the fast track system. I saw the consultant there about 3 weeks ago . He wasn't concerned. He had a look and feel and said he thought it looked fine but he didn't do an ultrasound and I didn't have a mammo. He said the breast could take up to 2 years to recover from the treatment and I suppose the impression I had was that the crusting in his opinion was liklely to be part of that. This week I had an even smaller amount of the same thing. I don't feel I can go to the Gp again at this stage. I was planning to leave it and monitor it over the next weeks but I wondered if anyone has experienced the same ?
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