Breast Cancer Now Forum

Dear Anne, Have just seen your message - I'm just so sorry, such a terrible, terrible shock for you both, for your lovely daughters as well. Life is sometimes cruel, as you say. You can only do your best, look after each other and take all the support you can. Glad you have found Maggies to help you through this. Will be thinking of you - and I mean that. Sandpiper xx       ... View more

Hello Anne, Hoping you are managing and that your husband has been able to start his radiotherapy treatment. It's not always possible to keep positive and strong all the time - at least I don't manage it - but do what you can and don't give yourself a hard time if you can't.  Hope that your journal writing helps. Sandpiper x               .   ... View more

Hi Claudia, I remember fearing the same whenever I felt any twinges - I think all the extra prodding about doesn't help - but you've had a clear scan and lymph nodes are good - so try to hold on to that. Wishing you well for 13th - you'll be on the road to recovery. Sandpiper x    ... View more

Hi NannyVal, Very happy for you that surgery went well and results are clear. A huge sigh of relief! Sandpiper x   ... View more

Hi Sparkle, Congratulations - just saw your post! Not sure if congratulations is the right word, but am very relieved and pleased for you.  Two months or so of worrying about whether the tumour is shrinking is not a lot of fun. Hope you have been recovering more and more as the days have gone on. I think it takes about two weeks for results to come back so you should know when you have your follow up appointment. Sandpiper x ... View more

Hello Anne, Am very relieved for you that your one year mammogram is clear and hoping that your husband is managing with his radiotherapy sessions and that they will make a difference to pain control or spread. Thinking of you with what you are going through. Don't forget to take good care of yourself as well. Sandpiper x  ... View more

  Hi Anne, I'm glad you're getting support from Macmillan and Maggies. They are good - I was going to Maggies before the lockdown - it was a place I could go and just be without having to explain myself. I miss it. Although I'm not journal writing now I have done it in the past and did find it helped me - writing things down got it all out of my head. Maybe, thinking about it now, I should restart it. I'm glad you're having some better days. Sandpiper x ... View more

Hi Nannyval, Will be thinking of you tomorrow and hope your surgery goes smoothly. It's a big day - the beginning of your recovery. Wishing you well. Sandpiper x       ... View more

Hi Anne, I'm glad you've been able to get your mammogram done more quickly and had the chance to talk to the doctor there - sounds like it's been very helpful.. Hopefully all will be well for you, results wise.  Are you in touch with Macmillan centre/nurses or somewhere like the Penny Brohn Centre or Maggies for extra support for you both ? They've got helplines and information that you can download from their websites.  You both deserve all the help and support you can get. Look after yourself and each other. Sandpiper xx   ... View more

Hi Pye, I remember being told that shrinkage of tumours is not noticeable on scans for around three months - I remember being worried when I was told they looked the same after two months - I had pressed for an ultrasound to see. It didn't mean that they hadn't but ultrasounds not being sensitive enough to pick up the small to start with changes I was told. But shrink they did, though each one at a different rate and my the time I had surgery one hand practically gone and the other half the original size. The shrinking seemed to gain momentum the longer I was on it (around six months). Hope you're feeling a bit better around it all - sounds like you've having a quite a struggle with your treatment team. Wishing you some good news - you deserve it. Delly - it will be my first year mammogram - no news as yet as to my appointment. Part of me expects that something suspicious will show up on my 'good' side! I'm normally an optimist. Sparkle - hope you're doing okay as too. Sandpiper x ... View more

Wishing you well for your pre-op appointment and for Monday, Nannyval. Will be thinking of you. I had my lumpectomy ten months ago and all went smoothly. It'll be good to finally meet your surgeon and breast care nurse face to face - have your questions ready. Look after yourself. Sandpiper x ... View more

Hi Red Robin, I agree with you - what is the difference between a video call with your husband while you are having the scan and him being there with you as would have been normal? A father of the baby shouldn't be seen as a distraction any more than the mother is, in my view.  The staff probably feel under a lot of pressure because of the extra precautions they have to take and this might make it harder to think more flexibly. What ever the reasons it's still very tough on you especially when you're supporting your husband in lots of other ways. Morning sickness on top of it all as well - very debilitating - no wonder you are feeling as you are. Hope that begins to ease for you by the time you have your appointment. Just thought whether you could get any counselling support from Macmillan or the Breast Unit to help you with how your breast cancer experience is still affecting you. It wouldn't be in time for the scan but longer term might help you. Take it as easy as you can. Sandpiper x  ... View more

Hi Red Robin, Congratulations on your pregnancy and I hope all goes well for you and your husband. I just saw you message as I was on my computer as I couldn't sleep. Sorry that going for your 12 week scan is raising all this anxiety for you. I haven't been through the same experience as you have re pregnancy after breast cancer - my experience was the other way round and I had a lumpectomy.  May be you could ring or email the "Someone like me" on here if it is operating. It's a tough time for you both anyhow without all this Covid business. Being pregnant is worrying enough without all the extras thrown in. It's a shame he's missing seeing his 1st baby's scan as well. Is your husband  travelling with you to the hospital even though he can't go in there? He could be with you on your mobile, if reception is good enough, while you wait and if possible while they do the scan? This time you're having an ultrasound for a lovely reason, it could lessen the terrible effect that your last trip there had on you. Maybe this time you will come out relieved and your trauma will has eased a little. Look after yourself - it's hard when you need support and you are protecting and supporting your husband with his ASD related anxieties, as well as looking after your other two children.  Wishing you both well and will be thinking of you on 26th. Sandpiper x           ... View more

Hi Sparkle, No news yet on mammogram appointment - I don't know how far in advance they book them. Can check with breast care nurse. Sorry you're feeling down at the moment - I have days like that too, like yesterday and tonight not sleeping. As your tumour is hormone sensitive I would have thought that was more important than being pre-menopausal though. I felt better once I had surgery and would have worried if I hadn't gone ahead with it. Lumpectomy was a day case and recovery time not too long and not too painful, usually. Take care of yourself. Sandpiper x ... View more

Hi Anne, It's tough isn't it and there's no miracle answer? You and your husband have and are going through the mill and have had so much worry for a such a long time. It sounds a bit like the time when when you' re waiting for cancer results first time around - panic, worry and anxiety. You sound like a supportive team and are there for each other. I haven't yet got to my first year follow up - my 1st year mammogram - should be in July but I'm expecting it to be later. Already I'm a getting anxious as well. Maybe someone else who has come through it all can help. Waiting around and setbacks are never easy. Try to take things by the hour and not look too far ahead. The day will arrive and hopefully the news for you will be good. Wishing you both well and take good care of yourself. Sandpiper xx ... View more

Hi Sparkle Last year I was given Letrozole prior to surgery to shrink the two lumps (IDCs grade 2) I had so I could get away with a lumpectomy and rads rather than an immediate mastectomy.  I had lumpectomy six months later and continue on the letrozole for another four years. I was monitored by ultrasound after three months which showed they were shrinking ok but slowly .It takes that amount of time for the effects to begin to be seen. Had second ultrasound shortly before surgery one had almost disappeared and the other was half the original size. They were same type but responded at different rates.  My nodes remained clear thankfully, and I managed rads okay. Just wondering now if my mammogram which should be due in July, will be postponed.  I did worry all the time through it though, is the treatment working or is it spreading,  so I do feel for anyone whose's in the same position.   So hopefully all will be okay for you too. Sandpiper x   ... View more

Hi Vaneysha Sorry you're having such a rough time of it - it sounds like it's been a long, long, tough journey so far and very draining physically and emotionally.  Just a quick note re any longer term after effects of rads. I was worried about that too after reading the leaflets. It was the part of the treatment I was most worried about - I didn't have chemo luckily, so wasn't drained going into radiotherapy. I had a talk with my breast care nurse about physical changes and she was reassuring.  I found going through radiotherapy a strange and emotional time - it seemed to last for ever. I was tired and felt very flat in the weeks after finishing but recovered gradually without really noticing. I am glad now that I did go through it. I finished rads last October and haven't suffered any of the changes like shrinking, permanent colour changes or anything like that. The changes I have, scar tissue, are the result of the surgery and don't notice. I hope that whatever you decide to do, you find time to rest and to begin to recover. Sandpiper x   ... View more

Hi Fidget, Can't sleep either - dropped off during Newsnisght then couldn't get to sleep when I needed to. Got the laptop out to see the news - all covid, covid and more covid. Have just had a cup of tea and a sandwich plus fed the cat who took advantage of a surprise early breakfast.  At least I don't have to get up early in the morning these days.   Sandpiper ... View more

Dear Jane, I've been on Alendronic Acid for around 10 months plus Calcium/Vit D supplement. I've been on letrozole for around 14months too without any side effects. I had a Dexa scan shortly after going on letrozole and it showed osteoporosis in my spine and oesteopaenia in neck of femur. I was a bit fed up about it all, I hadn't had any symptoms, it made me feel very old all of a sudden. The list of possible side effects can be off putting but I have been fine. After the first dose I felt headachy and unwell for a day or so, the second dose I felt a little under the weather but no problems since then. Make sure you follow the instructions - I take mine on my quietest day of the week, which is Sunday. The National Oestoporosis Society have a very good website - lots on nutrition and safe forms of exercise. They have a specialist nurse helpline too which I used.  I did have a dental check up before starting the treatment but that might be difficult at the moment as dentists are only seeing emergencies, I think.  Keep well and don't worry. Sandpiper   ... View more

Hi Carol,   I've been on letrozole (Accord brand) for over a year now, just four more to go! I am also a grandmother and look after my grandchildren a lot and am very active. I was put off by the descriptions of side effects, particularly the joint pains. I waited for them to kick in but the haven't. Think I am a bit more tired than before but that could also be the after effects of surgery and rads. I feel more positive now that taking it is the right thing for me to do. It reduces the amount of oestrogen converted by fat (post menopause) and that reduces what hormone positive cancers or potential cancers depend on to grow for primary breast cancer. If you're not able to have the chemo because of your allergic reaction then letrozole can be a good backup treatment on its own. It doesn't agree with everyone and some women do get badly affected but you may not be one of them. I think the most common side effects can affect 1 in 10 users but that means that 9 in 10 are okay. There are also different types of similar drugs that your team can prescribe if letrozole doesn't suit you.  There is a thread "Is anyone doing OK on Letrozole?" recently on here - around Jan 20 - there is quite a lot of feedback if you check. You could also ring the breast cancer nurse helpline on this site and/or contact the "Someone like me' service. Hope this helps. Take care. Sandpiper x   ... View more