Breast Cancer Care Forum

Hi Posden I had an appt with the Breast care team today and I’m signed off now unless I request an appointment. So pleased! I’m still under the care of the plastics team and have an appointment with them next month. No one has offered me blood pressure or cholesterol checks but is something I will chase up with my GP.  i really hope you get on ok with the Letrozole. 5 years (or 10 for some) seems a very long time to be taking this drug and I expect there will be ups and downs with it but if it helps to prevent us becoming unwell then it must be worth it. Good luck! ... View more

Hi I have also been on Letrozole for the past four months and am happy with how it’s going so far. I have also started taking calcium and vit D supplement as the DEXA scan picked up some osteopenia. I take the Letrozole last thing at night. Side effects have been very minimal, no hot flushes but some aches in my toe joints and in the joints of my little fingers (but no other fingers!). I have a pedometer watch and aim for at least 10000 steps a day and I’m convinced this is helping. Good wishes to all. ... View more

Merry Christmas to you both! Looking forward to a healthier 2020. Yes, can’t believe we’ve been through so much and still have our confidence! Good luck with finding the right soulmate, Ann Marie! Wendy, hope your return to work goes well. i have an appointment in January with the breast surgeon and one in February for plastics but all going very well. Letrozole has started to show some side effects with pain in fingers and toes but it comes and goes, and doesn’t cause significant pain. Will keep going with it. Just grateful for all they did. All the best, ladies. We’re looking to relocate to the West Country this summer so will have much to keep me busy! ... View more

Wow! That was a busy day at the hospital, Ann Marie! But great that you are getting things sorted and so pleased to hear that you are healing well. Wonderful news. I've been on Letrozole now since September 30th and I’m feeling good, no obvious side effects or problems. The issue of potentially weakening bones and osteoporosis is in hand and I’m taking extra calcium and vitamin D. My GP suggested a blood test to check my vitamin D levels and it came back borderline but I will keep taking the tablets and getting outside. I hope your decision to take this drug will be positive for you and that you also have little issue with it if you do. No more appointments until January! I saw the plastics consultant a couple of weeks ago and he suggested a potential tweaking of the scar line around the old nipple site if the slight swelling doesn’t go down and also creating a new nipple but at this moment in time I’m happy with what I’ve got and will see how I feel about more (minor) surgery later. The new boob is still settling down and I get sore around the armpit area but movement is very good. I'm back at work now, increasing my hours over the coming weeks. Life is getting back to normal 😊😊😊😊 Hope all is going well for you too, Wendy, and that you continue to heal. ... View more

Thanks, Ann Marie! Hope you’re finding work ok. How are you doing so far? I hope all is progressing well with the hormone therapy and that you get the best meds soon. I've just made two Christmas puddings and the fruit for the cake is currently steeped in lots of brandy ready for baking tomorrow. It’s quite nice to potter about! ... View more

Thank you so much Wendy but now hopefully back at work next week. I won’t go in to this long story but I was hoping to start a temp full time job this week but it now looks likely to be next week. My old job will hopefully start in December now. I don’t mind as I can find things to do but I’m keen to get back to doing something. i had a recall from my GP re my DEXA scan and was worrying what the problem was but it was simply a discussion about ways to keep bone density levels up, like upping calcium and vitamin D intake, weight bearing exercise, etc., which I am doing anyway. I hope you continue to make progress and that your wounds are healing well. It’s a long process, isn’t it? All the best Julia ... View more

Hi hsk For some reason I am unable to send you a private message as your name ‘isn’t recognised’ - might be because you are a new member. I will try again later. Thinking of you. cornishmum ... View more

Hi Ann Marie best to get it absolutely right but it’s more waiting for you. If you end up with Letrazole I can honestly say it’s been ok re side effects, so far. I hope the implant side went ok? ... View more

Yes, hope it goes well. Onwards, upwards and outwards! Julia ... View more

Hi Ann Marie and Wendy quite a coincidence with the smear tests. I’m sure they will both be ok and let’s hope you both get those results back quickly to help you get past that hurdle and then on to the next one! How are you getting on, Ann Marie? Are you healing ok? Is the implant being expanded? I hope you are happy with the way things are going. The DEXA scan measures bone density - as I’m now on Letrozole there is a recognised side effect of osteoporosis and so they’re going to check if the bone density lessens over the course of the five years. Does this apply to people taking tamoxifen, do you know? i don’t qualify for Macmillan financial aid as it’s income related. I think I have now sorted out work arrangements with my former employer and I’m hoping to be back at work on the 11th.   ... View more

Oh Wendy, what a really tough episode which has followed so closely on what you’ve been through. I think you are really brave to feel ready to have a smear test although you probably felt that you had to get on with it. I’m not sure I’m ready to face that yet but pretty sure I’m due one of those tests in the next few months. I imagine I would feel the same emotions you had today. I hope you manage to find some inner calm and have a good night’s sleep but I think it shows that we face a lot of reminders in our daily lives of what we’ve had (all those adverts for cancer on the TV, I have to leave the room sometimes) as we try to get on with our lives. Imagine how we will feel at the next mammogram!😳☹️ I’ve had my DEXA baseline scan results back and will wait to see if/how much this changes over the coming months and years. Another dressings check next week and then the plastics consultant appointment the week after. I’m hoping by this point that all my dressings will be off though I think I have this abdo band for another month. I can sleep on my side quite comfortably now. Work is my biggest concern at the moment as I’m trying to plan how to make up for lost earnings over the past weeks. You’re doing really well, Wendy. You got through it. ... View more

Hi all Wendy is absolutely right about the tamoxifen messages. People often write on the forums when they’ve got problems they want to share so you only tend to get a more negative view. It’s the same for the Letrozole I’m on, which I think is the post menopausal equivalent of Tamoxifen. I was concerned about the high number of side effects and there are a number of ladies out there who have issues with it, but really haven’t found many people who’ve said they’re ok. I was warned by the breast consultant that osteoporosis was a recognised side effect and I had my DEXA scan today, which will be the base line scan for checking my bone density over the next five years I’m on Letrozole. It is a concern but I’m upping my calcium and taking vitamin pills, and intend to do more weight bearing exercise (walking the dog) and try anything else you think might be beneficial! As for the other potential side effects - hot flushes, hair thinning, tiredness - I’m keeping an open mind. I’m only nearly four weeks in and it’s early days but so far, so good. The hormone therapy messaging board will probably be of use to you, Ann Marie, as there are discussion messages there about tamoxifen but don’t feel too disheartened if it feels negative. Are you on tamoxifen for five years?   Wendy, I’m so glad the wounds are finally looking better, that’s really good news. I’m leaving my belly button in the fresh air for half an hour when I’m changing the dressing. I’m sure it helps. Yes, take your time to get back to work if you need it. Unfortunately, I haven’t had much income over the last few weeks and I need alternative temp employment so I’ve been looking around. I’m quite keen to get back to work but will undoubtedly feel very tired by it. My sick note runs out on 11 November so unless I’m told otherwise that will be the time I go back. Good luck with the flu jab! ... View more

Hi Bella Rose i saw your message a few days ago and thought there must be another lady out there who is undergoing this treatment at the same as you but I was surprised to see that no one has replied. How are you doing? Have you had your surgery yet? If so, I hope that you are over the groggy, early days and on your way to a good recovery. If not, I hope you are managing to keep on an even keel while you wait to go in to hospital. I had this surgery in mid September and I’ve been communicating with a couple of lovely ladies on the Mastectomy with DIEP in September discussion post. It has been hugely beneficial and gave me that support that you can only get from people in the same boat as you. If you want to join that discussion if you get no take up on this one, please join us. Wishing you well. ... View more

That’s absolutely wonderful news Ann Marie!!! I’m so pleased for you! I know exactly how you feel - no chemo or radiotherapy, just the hormone therapy - it’s such a relief not to be facing that much treatment. Yes, down that glass and have another one! Sleep well tonight!   My belly button wound is doing ok and two more weeks of inodine dressings should hopefully see the scabby area gone. Sorry to hear your wound is not going as well, Wendy, I hope you can get it sorted very soon. Does this mean your return to work may be delayed? Julia ... View more

Sorry, pressed the post button by mistake!   Anyway, I hope both of you are still smiling through it all. Wendy, I am glad to hear your wounds are clearing up.   i actually have a whole week with no appointments at the hospital, yay! I can change my belly button dressings myself and I’m pleased that finally that wound is starting to heal . Like you, Wendy, my boob is settling down more and I get less of the slight slooshing movement I used to get. There’s definitely more of a cleavage appearance which is great! Still some pain under my arm when it’s raised.  I haven’t needed draining in my belly area and may not need it when I go back to hospital on Monday.   i went to a Pilates class last week and enjoyed it very much. It was very gentle and the teacher gave me alternative positions to try out when I couldn’t manage the tasks. I am very wary of laying on my sides - I don’t know when it is good to do this.   The Letrozole is still not causing any side effects that I’m aware of, which is great. I was warned it could start after six weeks and this is only week three, but so far, so good. I have my first DEXA scan next week to measure bone density so it gives the doctors an idea of how much the Letrozole affects my bones over the coming years.   I'm doing virtually everything I could do pre-op, bar heavy lifting and sleeping on my side. I’m starting to think about work again, which is a bit depressing!   Keep taking your time, Ann Marie, you’ve been through a lot. ... View more

Hi Ann Marie and Wendy! Ann Marie - you’re doing brilliantly by the sounds of things and your 275ml boob will be looking great before you know it. This cancer journey seems to go on and on, doesn’t it? It’s not like going in for an op and hey presto, it’s all sorted. The op is just the start of it and weeks later we are still attending hospital  ... View more

Hi Ann Marie   It really sounds like you’re going through a lot at the moment and sorry to hear you’ve been in a lot of pain. I hope the stronger painkillers are working effectively. I don’t know about period issues but guess it must have something to do with your hormones going through a big upheaval. I hope things settle down quickly for you. You are still very much in recovery from your op and it does seem that mastectomy patients go home quite early so you must be feeling fragile. When do you get the implant sorted? My drains were all removed before I left hospital but I am being frequently drained with a big syringe and a needle 😳. The nurses don’t do it, it has to be done by a doctor or specialist. The fluid collects in my belly wound and I’m still having problems with my belly button wound which needs extra dressings. As for my boob, it is becoming very tender across the top where it has been internally stitched, it’s quite uncomfortable with the sports bra cutting across it. Hope you’re feeling better soon, Julia ... View more

Hi Ann Marie   i hope you’re feeling better now that you’re home and that you’re making good progress.  My hospital visits are gradually getting more spaced out as I am allowed to change the dressings myself but I still need draining! I’ve counted up my appointments and at this hospital alone it’s now 25! The wounds are healing well and are quite neat. Best wishes! ... View more

Hi Ann Marie i expect you are mightily relieved you’re past the surgery bit though I’m sure you’re feeling very tired. Did you manage to leave hospital today? If you’re blood pressure is low it will feel hard to do much, especially move around. Like you say, don’t be in any rush to leave, just take it nice and easy. Will they be expanding the implant soon or do the drains need to come out first? It might not look how you want it to at the moment but be assured it’s only temporary. I do hope you feel better day by day and well done for getting this far! Julia ... View more

Hi Ann Marie Wishing you all the best for your op tomorrow and that you make a speedy recovery. Thinking of you, Julia xx ... View more