Breast Cancer Care Forum

Hi Ladies First of all - welcome Shadow to this thread. I do think sharing experiences and finding out that we aren’t alone with our worries is helpful, and hope you too are finding this forum supportive.   Julie - how annoying that your nurse appointment was cancelled, soooo frustrating, but I hope you get seen early next week.   Tracie - how are you feeling? I’m hoping the water infection has started to go together with the constant pain. I think we all need to remind each other to take one day at a time and not let our minds race ahead. I think I mentioned the Cancer Survivor book that was mentioned on here - in that book it tells us that we must remember that thoughts are only thoughts and not facts.   Sending hugs to all Evie xx ... View more

Hi Tracie and Julie I admire you both for getting the GP to go through all your list - I seem to make the longest list, then stress that I won’t have time to ask all my questions, and that adds to my worries! Tracie - I have found that it helps me to make a note of what the GP/consultant has said, otherwise I find that even though he/she might have reassured me, in my mind the advice changes to something far less reassuring and I drive my husband mad by asking him to go over and over what I have been told.   Julie - I’m glad you got your appointment today and that your GP is keeping an eye on you. She sounds like an understanding lady, that’s good. These next weeks will be stressful for you I’m sure, but we are right here with you - just as you have been right here for us too.   Sending you both big hugs. Xx ... View more

Hi MellyL - thanks for sharing your story and advice on the difference in risk between the 2 treatments. I will note all this for my discussion with my consultant about my continued treatment. I hope all’s well with you now. Evie xx ... View more

Hi Tracie and Juliewulie Tracie - I was just thinking about your message and wonder if you could write down what the GP said so that you can refer back to what he/she said? You wrote a very good message, which will be helpful to others suffering from anxiety - it’s always good to be reminded about taking one day at a time, being kind to ourselves and mindfulness. I really hope the anti depressants work quickly and help you.   Juliewulie - thanks for asking about me and remembering my move. I’ve sent you a PM.   Hugs to all Evie xx ... View more

Hi Tracie - I too would like to send you a big hug, and reassure you that you are not alone with feeling that way. I can’t add much to Jaybro’s advice - which is helpful to all of us who suffer from anxiety, so thank you from me too. I wonder if you have read The Cancer Survivor’s Companion by Frances Goodhart and Lucy Atkins? That book was recommended on here and I found it really helpful It’s great that your lovely husband has found this site for you - it really is wonderful, there are so many supportive ladies on here, who are never judgmental and who get what you are saying without you having to explain. Do keep chatting away on here if/when it helps you. Evie xx ... View more

Hi Sunflower - it’s great to receive such positive, detailed and encouraging support from SueLSE and Jaybro, especially just before your op. I had a mastectomy with immediate recon plus full node clearance, so my recovery time was probably longer than yours will be, but I think I was back driving after 3 weeks. The first few days or so weren’t easy, but soon I started being able to do things again. As the others have said, everyone is individual and recovers differently, so just listen to your body and take things at your own pace without comparing yourself to others. The most important advice is to do the arm exercises they give you. Have you got some front buttoned/opening PJs and shirts? You may find it hard to put on t-shirts/jumpers for a short time after your op. Please ask if you have any more questions any of us can help with. It’s also hard to know whether you will need radio afterwards, I think it will probably depend on what they find when they operate - but don’t be frightened of radio. You will find strength you didn’t know you possessed to get through your operation and any other treatment they decide for you. I wish you all the very best for your op on Friday - and please do come back on here and let us know how you get on if you feel up to it. Hugs and strength, Evie xx ... View more

Hi Ann - thank you very much for your further clarification, that was really useful and will help me when I next meet with my consultant to discuss whether to stay on Tamoxifen or change. I hope you are doing well. Hugs, Evie xx ... View more

Hi Sunflower14 - first of all a big hug 🤗. It’s such a shock when you get diagnosed and then quickly climb onto the treadmill of treatment without having a chance to even think. I didn’t have the same scenario as you but I did have a mastectomy, so if I can help with any questions please do ask. I also had radiotherapy.  Hugs, Evie xx ... View more

Hi WolfEE and Ann   Ann - thanks for posting that reply, that was interesting for me to read too. Is there a way consultants can tell how much difference it makes to you if you are on Tamoxifen versus AI? I would like to be armed with info before I see my consultant next. You are so right about “if it ain’t broke”.   WolfEE - there are various threads talking about “the fear goblin” that lurks and worries us to a greater or lesser degree, so you are certainly not alone in being a worrier. I loved that description of the fear as a “goblin” - others describe how they firmly tell the goblin where to go when he creeps up. That made me laugh as well as having a serious side and somehow helped me to give the fear a name and tell it to go (if that makes any sense, it’s getting late and I’m probably not making much sense now!)   Hugs to you both Evie xx ... View more

Hi Lulu and Aneeebel -  Lulu - I hope you were ok today at your mammogram and get clear results quickly. I think you are right, I’m not sure we ever get over the fear. I’ve got my 3rd one coming up this autumn and I know I’ll get really anxious as the time comes. Aneeebel - big hugs and strength to you for your mammogram tomorrow. I hope you too get clear results very quickly. Sue has given some good advice - so just know that we will all be with you tomorrow holding your hand “virtually”. Big hugs to all those going through mammograms. Evie xx ... View more

Hi Susie - no need to apologise for offloading, this is the perfect place to do so and to get support. Ann has written a great advice. I too felt nervous starting Tamoxifen but have now been on it for 2 years, thankfully with few side effects, if any - I’m not sure what is linked to Tamoxifen and what is due to the menopause and lack of oestrogen. I know some people suffer SEs on Tamoxifen, so I don’t want to make it sound an easy option. In fact my consultant is talking about moving me onto Letrozole/Anastrozole and I’m nervous as I’ve read about bad SEs from those drugs on chats on here - so I understand exactly how you feel. I’m also about to start Vagifem and my consultant wants me to stay on Tamoxifen while I’m taking those. You must be only recently through treatment so your head is bound to be spinning with all that you have been through, the shock of the diagnosis and the time immediately afterwards can be tough. So it’s perfectly understandable that you are confused and dazed. If you are still concerned you should try to speak to your consultant to reassure you further. But you may find it’s not so bad once you start - even if you get some SEs, I was told that they often subside after a couple of months. I know everyone is different, but I haven’t put on any weight since starting Tamoxifen and my hair seems ok, maybe a bit thinner but that could be from the chemo as I lost all my hair or again from the menopause. I too wish you all the best as you go forward and also for your wedding. I’m happy to chat more if I can help at all. Evie xx ... View more

Hi ali46 - I’m really pleased to hear your good news, such a relief for you. You shouldn’t feel silly about worrying, it’s very normal and everyone feels the same to a greater or lesser degree. I hope your lymph nodes go down quickly and you can get the reassurance you want when they check them in 3 months - they will always be cautious and check carefully.  Very best wishes to you Evie xx ... View more

Hi WolfEE I’m sorry to hear that you are suffering bad hip pain. I have been on Tamoxifen for 2 years and have recently been tested and found to be menopausal now - I’m 51. My consultant is talking about changing me to an AI as it seems to be the “usual” thing to do once menopausal, but I’m nervous about changing as I have so far tolerated Tamoxifen ok. I understand the statistics show a slight reduction in recurrence for those on AIs but I don’t think it can be very large as my consultant has not said that I will definitely change. There are lots of things to consider, including quality of life, and also I believe Tamoxifen helps bone density. It’s a tough decision. Happy to chat more if I can help. I wish you all the best as you recover from your op and get back to the gym. Evie xx ... View more

Hi Carol-Ann, big hugs to you first of all. Your nurse is correct, but also you are probably suffering the after effects of general anaesthetic. I didn’t understand why I couldn’t stop crying after my op and someone explained about GA. hope that leaves your body soon and that you start day by day to feel a bit better. Do chat away on here if I or others can help.  Evie xx ... View more

Hi Lucy Thanks for your kind wishes and reply. I hope chatting helps you, I know it helps me to know I'm not alone with the "fear goblins" (a phrase pinched from another chat that sums it up perfectly).  Hugs, Evie xx ... View more

Hi Jane - nothing is too personal to discuss on here!! I'm 51 and had some spotting after I had been on Tamoxifen for a few months, and again recently. The doctors are quick to check out any bleeding while you are on Tamoxifen as it can cause changes to the womb and possibly womb cancer. To reassure you though - they are not so worried about bleeding in the first year, it is more so after that and you have only been on it for 3 months. That said, my advice to you from my experience would be to speak to your GP and he/she will probably refer you to a gynaecologist/clinic for a check or at least monitor you to see if it continues.  It's always hard to know what to do - please ask if I can help further. Wishing you all the best as you go forward. Evie xx ... View more

Hi Rosina I've been on Tamoxifen for about 2 years now, so happy to discuss side effects if I can help. Touch wood I have got off lightly with SEs, but from what I have read everyone reacts differently. The same goes for the other drugs like Letrozole etc., some suffer horribly and some don't. My consultant is talking about changing me to one of those drugs now I am post menopausal, but like you I feel nervous about changing.   My consultant said the first few months should be the worst as your body gets used to the new drugs, so even if you do get some SEs they may not last. It's best not to read too much in advance as you will scare yourself - if you read the warnings in a Paracetamol packet you would scare yourself too. I'm 51, I had chemo too, tried the cold cap but it didn't work for me and I gave up.   To answer your questions: I had hot sweats during chemo and I still get them with Tamoxifen - but I think I would still have got the same hot sweats if I hadn't had chemo or Tamoxifen and had gone through a natural menopause, so it's hard to know what comes from the fact that we are plunged into menopause and what is chemo/Tamoxifen related. Luckily I haven't suffered fluid retention. My hair started to come back once I finished chemo and is now quite thick and curly - I don't think it's quite as thick as pre-chemo, but again that could be the effects of chemo or menopause or Tamoxifen, it's hard to say.   I'm happy to discuss more or answer any questions if I can. I wish you all the best for the rest of radiotherapy and your continued recovery. Evie xx ... View more

Hi Lynn thanks so much for sharing this, that’s so helpful to know. Do you mind me asking roughly what area of the country you are in as different health authorities may be different.  Evie xx ... View more

Hi Jules - Thanks for making some enquiries, I'll be really interested to hear what you find out (especially as I'm in the middle of moving house and don't have time at the moment to research it myself). I haven't found anything on BCC yet, their information leaflet mentions that people sometimes suffer different SEs from different brands but I haven't found any more yet. Thanks again, Evie xx ... View more

Hi Lucy Yes, it's a shock isn't it that you don't just go back to normal again after diagnosis and treatment - it takes time to come to terms with it, the "why me" and "will it come back" questions too. Unless friends have been through the experience themselves I think they find it hard to know what to say or how to handle it. I found some wanted to know every detail, and every time I met them asked me about it (obviously in a very caring way), then there were others who thought I was "mended" and should move on. I actually don't like it when people raise the subject with me, I prefer it if I can talk about it as and when I want to and I have explained that to close friends and family so that they now know best how to help me. Otherwise I would find myself out socially and someone would spoil the happy moment by raising diagnosis or treatment. So perhaps gently explain to friends how best they can help support you? You may want to talk to them, it's a very personal thing. But you will definitely get there, take one day at a time and be gentle on yourself (I'm sure your counsellor has also told you that). I'm also very happy to continue chatting on here or on private message if you prefer. You really are not alone, this forum is a wonderful source of support. Hugs, Evie xx ... View more