Breast Cancer Now Forum

Hi Michele - thank you for the tip/warning, I just called my local pharmacist and was told that all brands of Tamoxifen are hard to get at the moment. He says the shortage is short term with some brands, and he told me to call back in a week to get an update. I haven’t tried Tillomed. Fingers crossed they restock quickly - but interesting what Wockhardt said to you. As if we don’t have enough to worry about! Hugs, Evie xx ... View more

Hi Shaf - I am older than you (52) but I am happy to chat with you about my experience of a mastectomy and implant reconstruction if you would like. I also had chemo, before my surgery. My very best wishes to you as you go forward and please let me know if you would like to chat - I won’t be at all offended if you would prefer to wait until younger members come along. Evie xx ... View more

Hi imdes - first of all a big hug and a warm welcome to the forum. I can offer support and a listening ear, but I’m afraid I personally can’t help you with your specific question. You might like to call the nurses on here - number at the top right hand corner of this page 0808 800 6000. You know your body better than anyone and it’s important that you follow up as you feel that they have missed the main issue that you first went with. It sounds like you have a sympathetic GYN so do have a good honest chat with her.  I hope someone else may also be along who might be able to offer further advice. We are all here if you would like to chat further, no question is too big or small. I wish you all the best and hope that you can find an answer to your pain, one that is nothing to be concerned about. Evie xx ... View more

No you are not at all hopeless - it takes a while to work out how this or any other forum works. I’ve had help myself navigating the site, and eventually worked it out! Please ask if you have any questions, BC related or technical, no question is too big or small on here. Hugs, Evie xx ... View more

Hi Charliep5 - I’m really sorry you are suffering, and hope someone will be along to help. You have posted in the “talk to a moderator” section of the forum, you should get more help or replies if you post in the Going Through BC treatment, surgery section - I am going to try to post a link to that section and you can copy and paste your question there - https://forum.breastcancernow.org/t5/Surgery/bd-p/4445 Alternatively, you might like to call the nurses on here, or your own BC nurse at your hospital for advice, especially as you are in a lot of pain. Sending big hugs and hope you get an answer and a solution very soon. Evie xx ... View more

Hi Karla - that was such a positive message to read, thank you for taking the time to come back on here. By its very nature people usually post on here if they have questions or worries, and so it’s always really good to read a post like yours. Hugs and best wishes to you Evie xx ... View more

Hi fk101722 - I’m not sure I can add much to the lovely message mitsy has written, but I’d also like to send you a big hug while you wait for your appointment. I’m really glad you found this forum and hope we can all help get you through this.  You have already told yourself this - but to save your sanity try to stay off google. Google doesn’t know your particular circumstances, you are an individual not a statistic. Now is the time to be kind to yourself, lots of treats and whatever helps you. Try to take one day at a time, or even one hour at a time, that was the best advice I received. My very best wishes Evie xx ... View more

ValGJ - thank you so much for that suggestion too. I had previously read about KK, but had totally forgotten to research them, so I’m grateful to your for posting on here. Best wishes, Evie xx ... View more

Hi Clairex888 A big welcome to this lovely forum, and a big hug. I hope we can all help support you through this anxious time, and I really hope that it turns out to be benign/nothing to worry about. I had a very similar experience to you 3 years ago, so I totally understand the roller coaster of emotions - unfortunately that lump turned out to be cancer in the end. Last year however when I had my annual mammogram they found another lump, so I had to have more scans and a biopsy, but thankfully this time it was a benign lump. Until the doctors have all the information from the scans and biopsies it is very hard for them to be 100% sure. The best advice I received was to take one day at a time, or even one hour at a time, and to remember that “thoughts are NOT facts”.  Please come back and keep chatting on here if that helps, which I hope it will, and please let us know when you have your results (if you feel like sharing of course). Everyone on here understands what you are going through, you can just talk and never need to explain. Much as family and friends want to help, unless they have been through something similar they don’t always “get it” or say what you want or need to hear. My very best wishes, Evie xx ... View more

Love and hugs coming your way Run4fun, we will all be with you holding your hand virtually. We would love to hear from you when or if you feel like it after the operation - or if you need a last minute chat before you go off. Evie 😘 😘 ... View more

Justplainpat - thank you for sharing that link, that sounds exactly what I need. I have had a heavy prosthesis for about 3 years and it has just disintegrated, so I’m looking for a replacement. Evie xx ... View more

Hi Greekspeak - you have had a lot thrown at you over the last 5 years, so not surprising you feel weepy. I really hope you are recovering from Covid and Lyme’s. I totally understand your frustration that a drug you have tolerated has been stopped - that happened to me too. I had always taken Teva until that was discontinued, and I’ve been on Wockhardt ever since. That seems to be ok for me (touch wood). I have read that you can still get Teva in 10mg tablets, so would take 2 a day rather than one 20mg, but I haven’t yet got round to asking my GP or pharmacist. Maybe it’s worth asking your GP as Teva seems to be well tolerated from what I read on this forum. Sending you big hugs and hope you manage to find a brand that suits you. Evie xx ... View more

Hi Wonky - I’m sorry you are suffering, so I’ll start with sending you a big hug. What are the side effects that you are experiencing? I’m only asking as I wonder if some or all could possibly be menopause symptoms rather than Tamoxifen? I say that as I’m not sure what causes my hot flushes for example. Have you tried changing brands of Tamoxifen? I know from reading threads on here that some people suffer different side effects with different brands.  My thoughts for what they are worth - I think each person is individual and each diagnosis is different, so I would encourage you to speak to your medical team and explain your concerns and side effects before you stop taking them. They can help you balance the pros against the cons and you can then make the right decision for you. My very best wishes to you. Evie xx ... View more

Run4fun - a big welcome to this lovely forum and a big hug from me too. I can really understand your wish to just run away - I did in fact try to run out of the room when I arrived to start chemo, but the lovely nurse who was with me persuaded me to come back, telling me I owed it to myself to throw everything at it. Unfortunately we can’t outrun this diagnosis, it comes with us as we run. It’s very normal to feel as you do, anyone reading your post will totally understand. The best advice I received was to take one day at a time, or even one hour at a time when things were tough. And also to chat on here - you never need to explain yourself as everyone just gets it. Our friends and family don’t really know what to say for the best, but they mean well when they tell us how strong and brave we are - but Shi makes a good point that we don’t have any option. One of my favourite Winnie the Pooh quotes says “Remember you are braver than you believe, stronger than you feel and smarter than you think”. I’m sending you strength as you go forward with treatment. If you have any questions ask away, and please continue to chat if it helps. Evie xx ... View more

Hi Daisy4762 - it’s not surprising you feel angry and sad - and this is a wonderful safe place to vent your frustrations and get some support as you go forward. I understand your frustrations - my GP told me my lump was benign, then I went to the breast clinic and the first consultant who examined me told me 100% it wasn’t suspicious but he would send me for a mammogram and ultrasound anyway. So it was a total shock when the radiographers told me that the lump was almost definitely suspicious.  Shi makes some good points - your team really will be tailoring your treatment for you, but do make sure you ask questions when they arise. That said, some people don’t want to know and just go with it, others want to know details. That was me. I’m sure you have heard it before, but it really is best to try to avoid Dr Google. He really doesn’t know your specific case and can cause unnecessary concerns. My very best wishes to you - and do come back and chat on here anytime you need to. Big hugs,  Evie xx ... View more

Kazza81 - first of all a big hug to you, before you start it all does sound overwhelming. I had FEC-T (so similar) about 3.5 years ago. I used the cold cap for 2 sessions but like ruthie2 says it needs to be fitted properly and mine wasn’t, so I lost hair from the top but not the sides so decided to give up (it looked very odd!!) But it did mean I held onto some hair all the way through, just enough to show at the edges of a headscarf, and I only shaved it all off at the end so it could all grow back at the same rate. It’s a very personal thing and you should cut/shave when you feel the time is right for you, there is no “right time”. If the cold cap is something you want to explore, then I would definitely speak to your team again - or call the lovely nurses on the helpline here/or message them for more advice. Hugs too to Carmen Verandah. I wish you both every strength as you go through chemo, and it would be very worthwhile joining the September chemo thread to share questions and experience with others at the same point. Evie xx ... View more

Hi LMC88 - I am wondering if you are asking from a legal point of view? Has your travel or some other sort of insurance company asked you? If that is the case, I think it would be best to speak to them to ask them what their definition of “remission” is so that you don’t get it wrong and find they don’t pay out or whatever. You could also ask your consultant or GP as I’m sure they must have had the same question many times. If it’s on a personal note, I think everyone interprets it differently. Best wishes, Evie xx ... View more

Hi Jaybro - I didn’t want to go by without commenting and saying what a great response you have had from Pat (Justplainpat), especially her first paragraph. I think she also makes a good point about funding. It is a great shame that there aren’t specialists to deal with the long term after effects. Let me know if you need some help when you start your campaign. Big hugs, Evie xx ... View more

Hi Wonky - I too had a clip inserted last year when I had my annual mammogram and had to have another biopsy. I haven’t flown since I had it inserted so can’t yet comment on any issues at airports - but I seem to set off the alarms even when I wear no metal at all! Touch wood no issues from them. Evie xx ... View more

Hi grannyp- first of all a big hug coming your way. I totally understand where you are coming from and you have come to exactly the right place to get some support and offload. Medical staff use medical language and I don’t think they realise how it can affect us. I remember one letter after a mammogram saying “no significant abnormality” - that set me off worrying that there must be some sort of abnormality, but when I grilled my poor consultant he told me that was just their way of saying everything was fine! I think sometimes consultants forget that we get to see copies of their letters. My very best wishes to you as you go forward. The waiting is such a tough time, so please keep chatting to us all. Evie xx ... View more