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KH81
Member
since
21-04-2015
21
Posts
11
Hugs
2 hours ago
Hi everyone. I am having a hysterectomy on Friday so was told that I needed to stop taking Tamoxifen a week before. I took my last one last Thursday but since yesterday I have been feeling very sick and shivery, also got some period type pains. Has anyone else had this? Can you get side effects from coming off it quickly and can they be happening already? Anyone else been through this and has any advice? Thanks x
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a month ago
Thank you Jill. Sorry to hear you have been through all this too. A little bit more detail. I have been told to come off Tamoxifen for a week before the operation. It is going to be an incision across stomach rather than keyhole so sounds the same as what you had. I have also been told today that I will change to AIs after the operation. I feel that at the moment I have got ‘used’ to taking Tamoxifen and the side effects I have are just part of life. It really scares me swapping on to something else and getting different side effects. I know that having the hysterectomy is the right thing to do but I’m just very worried about the unknown. My breast care nurse said that being put into the menopause may not be so bad as I have already had some of the symptoms with the Tamoxifen. Has this been the same in your case? I know you mentioned the hot flushes but have you had many other side effects? Did you change onto the AIs? Sorry for all the questions but would really like to hear an honest opinion from someone who has been through it. I know we are all different and respond differently. Thank you. Kate x
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a month ago
Hi, I am four years on from my Breast cancer diagnosis which was ER+ . I have been taking Tamoxifen for four years and still are. Recently I have been having a lot of issues with cysts on my ovaries and thickening of the lining of my womb. I have been in and out of hospital with pelvic pain and had numerous scans. Yesterday in hospital I was told there is no point scanning anymore as I have had these issues many times the only option is a full hysterectomy. It sounds like a plan and I know they wouldn’t do it lightly but I now have so many questions! I will obviously go straight into menopause but not be able to have HRT. I will come off Tamoxifen and go on to an AI? How bad is the surgery? How long is recovery? The doctors have briefly spoken to me about all of this but I feel like I need a whole day with them to make an informed choice! So I’m putting it out on the forum to try and see if I can get anyone else’s experiences on this, any advice or tips. I am 38 by the way. Thanks Reply 1 Hug Report
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a month ago
1 Hug
Hi, I am four years on from my Breast cancer diagnosis which was ER+ . I have been taking Tamoxifen for four years and still are. Recently I have been having a lot of issues with cysts on my ovaries and thickening of the lining of my womb. I have been in and out of hospital with pelvic pain and had numerous scans. Yesterday in hospital I was told there is no point scanning anymore as I have had these issues many times the only option is a full hysterectomy. It sounds like a plan and I know they wouldn’t do it lightly but I now have so many questions! I will obviously go straight into menopause but not be able to have HRT. I will come off Tamoxifen and go on to an AI? How bad is the surgery? How long is recovery? The doctors have briefly spoken to me about all of this but I feel like I need a whole day with them to make an informed choice! So I’m putting it out on the forum to try and see if I can get anyone else’s experiences on this, any advice or tips. I am 38 by the way. Thanks
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11-01-2020
10:49
1 Hug
That is the realisation I have come to this week Lucy. I am 5 years on nearly but because I was pregnant when diagnosed and then life was taken over with having a baby and three year old I didn’t get chance to ‘deal with it’ as such. I think all people around me think I kept it all together and was fine but I know now that all of this masked what I should have dealt with. I guess it’s never too late. I have never been offered counselling but think I need to be more proactive with finding support myself. Big hugs xx
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11-01-2020
10:03
1 Hug
It has really helped me to see that we are really not alone and I’m so glad I wrote something on here the other night. I feel the same, after nearly 5 years since diagnosis I am grateful but can’t help feeling fed up with constant feeling of not being right. Has anyone found any local groups or meet ups that help. I would love to talk to people who understand. I’m not sure if I would feel silly going to a group now when my diagnosis was not recent. Big hugs to you too. Thanks for your reply.
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11-01-2020
09:57
1 Hug
Goodness me you really have been through it too. It’s so hard, I really would like to get up in the morning and feel bright and energised, lead a normal life and go to work feeling good but at the moment it just seems to be something different every day. Today I am suffering with a really bad headache and my mind goes wandering as to what could be causing it and then the anxiety causes a vicious circle! It’s so helpful to know I’m not alone and people on here can relate to this too, I’m just sorry that any of us are feeling like this and have to just put up with it. I haven’t had reconstruction either and I did think it would be something I would have eventually but can’t face the thought of that at the moment either. Big hugs to you and thanks so much for support.
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10-01-2020
10:15
Thanks so much for your reply. My mind always goes to mountain before molehill at the moment which is not helping. I think a lot of people around me think I should have got over this by now and should just move on but in reality it’s not that simple. I have thought about asking for counselling as it has never been offered but I stress about when I will fit it in and who will have the kids for me. I really should try and make time for this. Thanks for replying x
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10-01-2020
10:11
1 Hug
Thank you so much for your reply. It makes me feel so much better just reading it. I completely agree, that’s exactly how my friends and husband see it. I am nearly 5 years on and should be thankful that I am well but it’s not that simple. Having anxiety and aches and pains constantly is exhausting in itself. I wish I had time to slow down the pace but a pre school child at home, school runs and trying to work is not giving me much time at the moment. You really summed up what I want to do at the moment when people ask me if I am ok. I just want to cry and rant and hope someone listens and offers support but instead I just say I’m fine. I tried telling one of my close friends but she really just seemed to roll her eyes and more or less say “what is it this week?” I really need a friend who understands. Thank you so much for replying, it has made a huge difference x
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10-01-2020
10:03
2 Hugs
Thanks so much for replying. I am sorry your health has not been great either but makes me feel better just to know I’m not the only one. Just seem to be going through a really low patch with not feeling 100% and wanting to tell someone everything but seems like no one wants to hear it. I like your ‘compassion fatigue’ line. I can see it from my friends and my husbands side that there is always something that I am moaning about but I wish more than anyone that there wasn’t! So glad I reached out on the forum, just having people in similar situations helps. I almost feel like as it was 2015 people think I should have moved on and completely got over it. I guess it’s hard for them to understand. Thank you. Look after yourself too x
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09-01-2020
12:50
4 Hugs
Hi, I had Breast Cancer in April 2015. I had a mastectomy but didn’t need any radiotherapy or chemotherapy I started on Tamoxifen which I have had for the last four years. During this time I have reached my ‘new normal’ as I like to call it and life has been going on. The past few months I have not been feeling great and have had several tests done chest X-rays, bone scans to see if everything is ok. Very relieved that nothing has been found but I’m still not feeling well. I am still having lots of aches and pains and am struggling with the worry and anxiety of what it might be. My biggest problem is that I have no one to talk to about it. My friends and even worse my husband have just got to a stage where they are literally like ‘Oh what’s the problem this week?’ I am getting to a point where I am feeling so tired and In pain but I am keeping quiet because I am scared to tell anyone as I feel silly and like I am making stuff up. I’m sure they think I like the drama but I really don’t. I have young children and work three days a week (which I am finding hard) I’m hoping there is someone out there who can offer help or support. It has not been like this since my diagnosis I just seem to be having a low patch now. I wish there was someone I could explain what I’m feeling without being dismissed or made to feel it’s not important. Everyone expects me to be how I was before Breast Cancer with no worries.
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23-03-2017
08:57
Hi, I was diagnosed with breast cancer in April 2015 (age 33) and had a mastectomy (no reconstruction) I started on Tamoxifen in January 2016 (Such a long gap as I was pregnant when diagnosed) Anyway my first year on Tamoxifen was not too bad, struggled with ovarian cysts, irregular periods but since January this year I have been suffering with vertigo and nausea and permanently tired! Just wandering if anyone else has had these symptoms or developed any new side effects after being on Tamoxifen for a while. I know when nausea and vertigo is going to come on as it seems to be every four weeks so must be linked to some kind of cycle although no longer having periods. I am having regular visits to the doctors but they just say that they think it's the Tamoxifen but because of my age they don't know enough about the side effects. This is very frustrating as it doesn't help. Don't want to give up taking Tamoxifen but it is getting me down feeling rubbish all the time. Hoping if I find someone else out there that has any similar symptoms it will help!
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04-07-2015
10:42
Hi, you sound so positive in your message must have been a difficult meeting when you found out. Having a mastectomy is tough at the time mentally more than physically I found but it does give you feeling of knowing that they got it all as there is nothing left. If you have any questions however daft they seem to you please ask as I wish I had someone with recent experience to ask them to! As you know by now my mind has a habit of over thinking things and a few days before mastectomy it was in overdrive thinking about what it would feel like, look like etc. You will be fine, it's the waiting for it to happen which is the hard part. At least you know that they have checked your lymph nodes and great news they are clear. We had a celebration party today to thank everyone for support and help over past few months it was lovely so maybe plan something like this or a holiday?! Fingers crossed you won't have to have chemo although like me you seem to just be taking everything they throw at you and keeping positive. I hope your family and your degree work are keeping you distracted x
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30-06-2015
10:12
Hi San, I definitely know the position you are in as that was me only 3 weeks ago. I thought that even though they were saying there was no lymph node involvement I had pain and it had definitely spread everywhere. The waiting for results was agonising but I am happy to say last Friday I got the all clear. It was a 1cm lump with no lymph node involvement and I don't need any other treatment apart from Tamoxifen for 5 years. I really will keep everything crossed for you too. Having the mascectomy was not half as bad as I had imagined either. I was in hospital 24 hours and was a bit sore and stiff but 2 weeks on I can do the exercises, do everything like normal now. I was not allowed pain relief due to the baby and coped ok with this. Just exhausted for a few days after! Feel free to ask me any questions or to just chat if you need to. Keep me posted. X And briony if you are still on I'm sorry I didn't contact you sooner, I have been unable to get on the forum. I hope you got good results? Please let me know I have been thinking about you. X
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20-06-2015
10:47
Hi, glad ur genetic appointment went ok, don't know about u but I'm a bit fed up of blood tests! I managed the nursery pick up and everyone was very kind and said I looked well which I'm sure I don't!! Feeling much better though, feel like I have a bit more movement and less pain. Having my little boy at home the past couple of days has meant I have no time to sit around feeling sorry for myself. My appointment for results has come through for Friday which is earlier than they said an it's a Friday afternoon when I got results last time so the worry wart in me is thinking, why is it earlier? Is Friday the bad news day? Mind is back in overdrive!! Atleast you said you were doing a degree to keep you busy, maybe I should do one! I have just resigned from work too so don't even have that to think about! Atleast I guess after Friday I will know one way or the other. X
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17-06-2015
02:23
Hi, You sound much better with things now. I have follow up in 2 to 3 weeks they said but not had an appointment through yet, it always seems like you are waiting. I like you am hoping that I don't need more surgery on lymph nodes as that is the painful part and most visible. I almost wish this nice weather had not come and that I could wrap up in lots of layers! I wish I had a smaller bra size as I am an E and so there is a massive difference!! Also mascectomy bras in a lot of places only go up to D. I have had some camisole tops delivered from a company called Nicola jane today and they seem to hide the problem well under a tshirt so atleast I will be able to go out! I have promised my little boy I will go with daddy to pick him up from nursery today so got to face people. I hope to have reconstruction eventually but will probably wait a while after baby is born and then discuss it. Your genetic appointment sounds interesting? I have not had anything offered to me as I have no family history of cancer at all which they were shocked about. Hope your appointment goes ok x
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14-06-2015
01:11
Hi Briony, sorry to hear about your stitches sounds painful. My operation went well, I stayed in on Thursday night but then out on Friday. I don't seem to be able to do much other than rest as I feel wiped out and very sore under my armpit. Avoiding all painkillers due to pregnancy. My husband is being great and my little boy is being very gentle with me but very confused about why he can only cuddle me on left hand side! I haven't seen many people yet as it hurts to put a bra on and I feel like u look too strange and very lop sided without one on! As you say although there is a long wait til getting the results it's a step closer to being free. I have my fingers crossed for your results, did you have some lymph nodes out? Please keep me posted on how you are getting on. X
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09-06-2015
02:07
Hi Briony, Thanks so much for your reply I was beginning to think it was just me! I'm sorry to hear you are going through a similar thing at the same age also with such a young family. I agree the waiting makes your mind go in to overdrive, I am thinking all sorts and imagining aches and pains everywhere. Think I will be glad on Thursday when mascectomy is done but then like you say there are more results to wait for. I hope the lumpectomy was not too painful and you are recovering well. I had my 12 week scan yesterday and all is well with the baby which was great news but can't seem to feel excited about that until I know any news after operation. Just have to keep telling myself that the consultant would not be so confident and positive about baby if there was more of a risk with me. X
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