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Tamoxifen

41 REPLIES 41
Kiki2
Member

Re: Tamoxifen

Thats great news! So glad yours was clear too! xx

Olives
Member

Re: Tamoxifen

Hi. Finally received my letter today and very happy to say all clear and no follow up required with gynae.  Very relieved.  Thanks for all who posted support.  Hope that others may find this thread helpful if they are ever in similar position and can be heartened by the clear results. Olives

Olives
Member

Re: Tamoxifen

Wow, finally.  So pleased for you.  Will let you know if I hear anything although not expecting to do so for another week at least. It's horrible all the stress you can be caused over something that turns out not to be anything serious. Enjoy now! xx

panther22
Member

Re: Tamoxifen

That is such brilliant news. I have kept an eye on both your posts. I really hope you hear something soon Olive. Keep me posted on here Micheke

Kiki2
Member

Re: Tamoxifen

Finally got my letter from the hospital and the histology shows it was just a simple polyp so no further action required! Such a relief as I had got myself worked up into quite a state imagining all the worst scenarios! Now feel I can concentrate in moving forward again! Hope your results are the same when they arrive. Xx

Kiki2
Member

Re: Tamoxifen

Hi Sarah,

Glad you finally got the test done. Hope you don't have such a frustrating wait for the results! No letter yesterday so rang the consultant's secretary but she is out of the office till Monday, and no-one else there would tell me anything. Rang my gp and apparently they have their letter but my doctor was on holiday till today so the receptionist wouldn't tell me what it said until the doctor had read it and added notes! I asked if the doctor could ring me so she booked me a phone call for Friday! Hopefully my own letter will appear today but if not I might go down to the doctors this afternoon and see if they will tell me as it is driving me mad! I had forgotten how bad the waiting is!! xx

Olives
Member

Re: Tamoxifen

Hi Nic. Yes thankfully went ahead. Had a general anaesthetic so no memory of what went on! Consultant briefly said she couldn't see anything major and has taken biopsy. One person said they would write in two weeks with results but another said consultant might dictate a letter for secretary to type. If that were the case it would take longer as the secretaries are usually behind. I will wait two weeks then call to see what I can find out. As you haven't heard could you call to chase results with consultants secretary and just explain how worried you are. They are usually happy to help. Fingers crossed you hear soon. Sarah X

Kiki2
Member

Re: Tamoxifen

Hi Sarah, did you have the hysteroscopy today? If so, hope it went smoothly. Did they tell you whether they found anything? Still haven't had my results! It's driving me nuts, the waiting! Xx

Olives
Member

Re: Tamoxifen

Hi Nic.  Yes I finally got offered a date this Tuesday, 30th, but still have to check on the day they have capacity to go ahead. Just want it done now as seem to gave been waiting for ages and sick of it always being at back of my mind. Ironic I may be having my test as you get your results. Surely if they had found anything wrong you would have been told by now. Hopefully the delay in feedback means there is nothing urgent they need to progress but it's hard not knowing as its must be coming up to three months now for you.  I just try to enjoy as many things as I can while I can as we just don't know what will happen next. I think family sometimes don't realise how much these things can bother and worry us. You only really realise what it's like when you are in a similar position. Will think of you next week and hope you get results soon. Sarah

Kiki2
Member

Re: Tamoxifen

Hi Sarah, I was wondering whether you've managed to get the hysteroscopy done? It will be two weeks on Monday since mine but I'm still waiting for the results. I was doing well at forgetting it to start with but today it feels as if a black cloud has descended and I feel really snappy and like I could easily burst into tears! It will be at least Tues now as no post on the bank holiday. Keep trying to think it should be ok but when you know "It can't happen to me" doesn't apply you are bound to have fears about the alternative! Sorry to moan but felt like a rant and don't want to worry my family! Hope you have made progress since your last post! Nic xx

Olives
Member

Re: Tamoxifen

Hi Nic. Good to hear from you. Hope you enjoyed your holiday. Fingers crossed results come back all ok.  I have managed to speak to my BCN who has found out that I may be fitted in on Sunday. Apparently they have a back log but will have to do me soon otherwise the hospital will incur a fine for missing deadline. Anyway still waiting for confirmation so wouldn't be surprised if it is moved again!  It's nine weeks since the bleed I had so perhaps it's normal to wait this long. Just want to get it done and get results now. At my hospital they insist on giving you a general to do a hysteroscopy so maybe this is what is causing delay. I would be happy to have it without just to get results quicker. Hope your results come through quickly. Sarah

Kiki2
Member

Re: Tamoxifen

Hi Olives, would it be worth going back to your gp to see if they can push the apt forward? I went today for my hysteroscopy. It wasn't as bad as I expected pain wise, though I did use the entinox a bit! She found 2 polyps and a fibroid and has removed the polyps and sent for analysis and done a biopsy of the fibroid. The results will take 2 weeks apparently  so I'll just have to wait. I think today is about 11 weeks since I first went to the gp about it, and she did an urgent referral for ultrasound and then when those results came back a 2 week referral for consultant but then it was about another month to the hysteroscopy. 

I hope you manage to sort it soon,

Nic xx

Olives
Member

Re: Tamoxifen

Hi. Spoke to Consultants secretary. Apparently there are delays due to sickleave and holidays.  I have been waiting six weeks now after initial apt with consultant and ultrasound scan.  Sec still couldn't give me a date. Is it worth calling my BCN with my concerns even though she is not involved in gynae dept or should I just carry on waiting. Never really had a problem like this before so not sure how I can get things moved on. Any ideas or suggestions much appreciated.

Moijan
Member

Re: Tamoxifen

Yes, I agree about chasing, if you know the cons name, you can ask to speake to his secretary..thats what I do .

 

just to add, I was on Tamx for two years whilst on a double blind trial in the early 200's and the reason I knew it was Tamox was because I had spotting..and i was  way past menopause...they used to do reg ultrasounds, but at my hosp never did a hysteroscopy.......it must niw be a routine thing. Good luvk with it.

 

best eishes Moujanx

panther22
Member

Re: Tamoxifen

Hi If it was an urgent referral I thought at the most it should be a month but usually it's within two weeks. It might be a good idea to give the hospital a ring on Monday to chase it up. Explain to them you are feeling worried and hopefully that will help. Keep us posted. Just wondering how Kiki is doing too.

Olives
Member

Re: Tamoxifen

Hi. Just wondering if anyone can tell me how long they have waited for hysteroscopy? I got a two week referral to consultant under the cancer guideline and saw someone 1 July when they said I needed a hysteroscopy.  I am still waiting for an apt.  Not sure how this fits into NHS timelines for fast referrals where cancer suspected! 

Olives
Member

Re: Tamoxifen

Whoops. Sounds like you and I are in the same boat at the moment.  Lets both go away and try to enjoy ourselves as much as possible and deal with everything else when we get back! xx

Kiki2
Member

Re: Tamoxifen

After all that I'd got it wrong and I wasn't there for the hysteroscopy today, just to see consultant! Have to go back for hysteroscopy after my holiday! All worked up for nothing but he was very reassuring and said that the majority of polyps are benign so will try to forget about it now till I come back! Xx

panther22
Member

Re: Tamoxifen

Hi Kiki, I know it will be hard to relax but I really hope you have a nice holiday. When I feel scared I go and splash out on something like a dress or go for a nice meal. Have you got something that is a treat on holiday. Let me know and enjoy 🌞🌞🌞

Kiki2
Member

Re: Tamoxifen

Thanks , that's what I was hoping. I hope your appointment comes through soon. Just hope this doesn't trigger any heavy bleeding for the holiday! Xx

Olives
Member

Re: Tamoxifen

Hi. My consultant was also gynae oncology but I think it's just a precaution so they can check you out.  I have read a lot of other posts where people have been fine so we just have to hope for the best.  Fingers crossed for you. xx

Kiki2
Member

Re: Tamoxifen

Thank you, I am beginning to get very nervous now, especially as when I looked again at the letter it says gaenocology oncology dept! But I suppose it has to go there to get the two week referral. Not sure what if anything they will tell me while they do the test . Worrying times! Xx

Olives
Member

Re: Tamoxifen

Hi Kiki2.  I am still waiting for my apt so also looks like I will be going away without results but determined to make most of my holiday like you.  Good luck for tomorrow. Hope all goes ok. X

Kiki2
Member

Re: Tamoxifen

Biopsy results were about a week for me with BC diagnosis so as my appt has come through for mon 18th I don't think I'll have results but I'm determined I'm not missing this holiday so will just have to try and forget it while away. Hope you get your apt through quickly. Nic xx

Olives
Member

Re: Tamoxifen

Hi.  I did get referral within two weeks but they only did ultrasound at that and now on another wait for hysteroscopy.  Have told travel Insurers who have put down as medical condition of 'post menopausal bleed' and have declined cover as waiting tests so looks like may have to go abroad with no medical cover for this if don't get test results in time.  All a bit confusing and worrying on top of worry about test results.  Does anyone know how quickly biopsy results come through after taken? Sorry for all questions but in a bit of a panic at the moment as just don't know what to do about holiday which has been planned for months on basis of good scan results and is quite a big one.  Olives

panther22
Member

Re: Tamoxifen

Kiki you are most welcome. Bless husbands sending you a big hug 🙅🏻

Kiki2
Member

Re: Tamoxifen

Thanks for the advice, I think a biopsy will be needed with mine. I appreciate the advice about sedation, think I will take my husband to drive me so I can accept it if I need it! Xx

panther22
Member

Re: Tamoxifen

Oh when you do have the hysteroscopy I recommend if you don't have any sedation ( I didn't ) is have paracetamol, ibuprofen and you may even need codeine as it was a bad cramp pain. I finished it off with a glass of wine 🍷. If you feel nervous I know you can have some sedation but you will need someone with you then. 

 

panther22
Member

Re: Tamoxifen

The hospital I am under has a fast track system so any unusual bleeding is seen in two to three weeks. A consultant gynaecologist  performed the ultra sound and hysteroscopy and was able to tell me the results there and then, although no biopsies were needed. The most difficult thing I found was telling a Dr in my GP practice what the next step should be when I first had bleeding. This is why this forum and information on breast cancer site is so useful. It certainly empowers me in knowing what should be the normal course of treatment.


@Kiki2 wrote:

I'm also going on holiday in 3 weeks, my doctor has done a 2 week referral so I should get the test before I go but probably not the results. As you say I don't suppose we'll be covered for anything related to this whilst away. Nic xx



 Please let me know how you get on.  I work full time but do try to get on this site as much as possible❤️❤️

Kiki2
Member

Re: Tamoxifen

I'm also going on holiday in 3 weeks, my doctor has done a 2 week referral so I should get the test before I go but probably not the results. As you say I don't suppose we'll be covered for anything related to this whilst away. Nic xx

didi62
Member

Re: Tamoxifen

Hi I have had 4hysteroscopys in 3years due to bleeding on tamoxifen .it is a bit painful  to have done but doesn't take long.i have only had a bit of spotting  afterwards just take a sanitary towel with you.all mine have shown no abnormalities thankfully but I am grateful they are very careful to check it out.i only waited a couple of weeks after going to clinic to have it done.hope you get on ok didi x

Olives
Member

Re: Tamoxifen

Hi.  I also had ultrasound last week.  They couldn't see anything wrong but still say I need a hysteroscopy as if you have a bleed on tamoxifen it just seems to be required.  Made me feel the ultrasound was a bit of a waste of time and they should just refer straight for hysteroscopy in my view to cut down wait and worry time.  I am going on holiday in three weeks and now unlikely my travel insurance will cover me for gynae issues as may not know outcome.  Does anyone know how long you wait for test on NHS and how much discomfort and bleeding there is afterwards? 

Kiki2
Member

Re: Tamoxifen

Thank you Michelle for your reassurance. I had ultrasound on Thurs and they found a thickened area of endometrium so have to have hysteroscopy . Am hoping desperately it is just a polyp! Is the hysteroscopy(if that's what it's called) very painful? Nic xx

panther22
Member

Re: Tamoxifen

Oh I forgot to say I have been taking Tamoxifen since July 2012 and will be taking it up to five years then my oncologists wants me on let rookie. My breast cancer was er+ and think it might have occurred due to the radiation I had for my non Hodgkin's lymphoma .

panther22
Member

Re: Tamoxifen

Hi, I had one period at the start of my Chemo in Feb 2012 then they stopped. a year later I had a period and therefore referred to Women's health unit. They did a scan and said everything was clear and that if it happened again they would do a hysteroscopy. A period happened again roughly five months later and did more tests and again clear. Bleed again about nine months later and went through similar tests and was clear. I am post menopausal but the Gynaecologist says with everything that's happened to my body the normal bio rhythm get alters and sometimes your body has a period. I only became post menopausal because of the chemotherapy especially as I had chemotherapy when I was 20 for non Hodgkin's lymphoma. I still need to get any bleed or spotting checked our but I hope this might reassure you that sometimes it's not always bad news.

 

Big hugs Michele

Melanie8
Member

Re: Tamoxifen

I am struggling with the side effects of tamoxifen. With itchy skin mostly on my face. It did come up in a rash from my chest upwards and the doctor gave me steroid cream and said was excema. It did go away but the itching is back. Also with pain in my lower back , hips and ankles. Anyone else have this? I don't know how to post generally! Another brand any better. I am in wockhardt. Thanks
Melanie8
Member

Re: Tamoxifen

 
Kiki2
Member

Re: Tamoxifen

Hi, I'm also on tamoxifen and it didn't stop my periods , they were coming every 5 wks without fail but then last month I had spotting then a period after 3 wks, so they are sending me for a scan just to be sure as tamoxifen carries a risk of endometrial cancer. I think and hope that in my case it's probably the menopause messing with my periods (I'm nearly 52) but best to be sure! Xx

Olives
Member

Re: Tamoxifen

Hi.  Thanks both.  I have now also posted under hormone treatment thread.  There is loads of info there so just keeping fingers crossed nothing bad.  Due to go on holiday in five weeks as well which is causing me to worry even more.  Olives

Carolyn52
Member

Re: Tamoxifen

Hello olives
I'm sorry but I don't have any answers either but wonder if you might repost under hormone therapies ..lots of ladies there that might be able to help you. Tamox always seems to be a big topic of posts !!
Hugs xxx
Marirose
Member

Re: Tamoxifen

Hi Olive

Welcome to the forum sorry you have to be here but it always helps to share with other ladies who are going through what you are going through. Sorry you have not heard from anyone but weekends are always quiet.

Tomoxifen does mess with periods as do most chemo's. I remember when I had my primary 20 years ago it cleared my periods up altogether so don't worry too much about spotting but your medical team will get it sorted they are the ones to listen to but I am sure someone will be along to share with you their experience. Until then I am sending you (((hugs))) let us know how you get on xxx

Olives
Member

Tamoxifen

Hi.  I am currently taking tamoxifen following breast cancer and recovery from secondary brain tumour.  My periods stopped during chemo and I haven't had any since.  However the other day I had some spotting.  Now I am being referred for tests but I have read tamoxifen can cause this.  Just wondering if anyone else has had anything similar?  Olives