Breast Cancer Now Forum

Hi Herbidacious.  I'm due to have a bilateral LD flap recon in March.  The surgeon says I'll be in hospital at least a week and he said I'd be off work for about 3 months.  I was really encouraged by Sarah's comments as I don't want to have that much time off but I'm going to have to pay attention to what my body is telling me.  The op is going to take about 7 hours, with 2 surgeons working on me, so I would hate to spoil all that hard work.  I hope all goes well for you and you are pleased with the result xx ... View more

Hi AG We have a history of breast cancer in my mother's side of the family - my grandmother, mother, aunt and sister all had it and are all sadly deceased. In a strange way I was almost pleased when I was diagnosed as I felt I could help my 2 daughters and 3 nieces who are all in their 20s and 30s. I had a blood test in the middle of chemo which was no good as they couldn't harvest enough cells to test, then I had one after I'd finished treatment. It tested negative for BRC1 and BRC2 but we were told there is obviously a gene at play somewhere, they just haven't identified it yet. I'm getting off the point here - what I intended to say was, once she found I tested negative, my eldest niece said she was going to go off and have some private testing for herself, based on the fact her mum developed cancer when she was in her forties whereas it developed later with the rest of the family. I haven't asked her how or where she is getting this done. I'm sorry you have this worry, I do understand a bit of what you are going through. xx ... View more

I asked for a double mastectomy when I was first diagnosed with invasive lobular cancer in my left breast. I was refused it, told to get through my chemo and rads and ask again. I waited, had a mammogram, a MRI scan and a psychological assessment to make sure I knew the implications of removing healthy tissue and finally had a second MX a year after my first. The breast care nurse had kindly asked for the psychological assessment to be brought forward after I burst into tears during my follow-up appointment with the surgeon. I told him I felt my right breast was a ticking bomb! When the 'healthy' tissue was examined they found a 13mm lobular tumour lurking there. I know I was unlucky (or lucky in that they found it in time) but I feel very strongly that a woman with invasive lobular cancer should be given all the facts then, and only if she wants it, be offered a double mastectomy without all the palaver I had to go through. ... View more

I think you have to do what feels right for you. I'd have thought you would need about a month after surgery. I had surgery followed by chemo and rads. I work in social care and I can't fault the way I was treated by my employers. My manager wanted to me to go back to work during chemo but on my terms, that is, I would only go in to work when I felt well enough. That idea was scuppered by the woman I saw at Occupational Health who said she wouldn't recommend my returning to work until I had finished chemo and rads. I ended up having 12 months off work and was convinced I needed that time off and wouldn't have coped with my stressful job. I'd just got back to work on phased return when I had to take more time off to have risk reducing surgery. I had a mastectomy and the breast care nurse said I should be OK to to go back to work in about 2 weeks. Unfortunately (or luckily perhaps) they found a cancerous lump lurking in supposedly healthy tissue so I thought it was a case of 'Here we go again' and that I'd need chemo and rads again. This time, though, I knew what to expect and I intended to carry on working through my treatment as, with the benefit of hindsight, I really think it is doable with the right support. Thankfully,because it was caught early I didn't need any more treatment so I'm back at work now and enjoying it. While I was away from work I dreaded going back but now I'm here I'm really happy to be working and focussing on things other than breast cancer. I have to whinge a bit now and then as I get fed up with my chair disappearing mysteriously in the night (there's someone on duty at our place 24/7) and I have to hunt it down and put back to to the right height and back position. I feel OK but my arms tend to ache a lot. ... View more

Hi, I was diagnosed with ILC (feel a bit weird calling it that as at work ILC stands for Independent Living Centre!) in November 2011. Maybe I had a bit of a knee jerk reaction but when I was offered a lumpectomy I asked the surgeon to just do a mastectomy and get it over and done with. My sister and mum had both had lobular cancer, and my grandmother and aunt both had BC but I don't know what sort. I had chemo and rads as it had spread to the lymph nodes. Then I made a nuisance of myself asking for the other breast to be removed, which was what I'd wanted from the start. I had a mammogram and a MRI scan and nothing sinister showed up but after a psychological assessment I was allowed to have a second mastectomy in November 2012. I don't know whether it was just a gut feeling I'd had but I wasn't too surprised when they found another bloomin' lobular lump in the 'healthy' tissue sent off for testing. Fortunately I didn't need chemo or rads the second time around. I'm going to have a bilateral reconstruction some time next year but with hindsight I wish I'd stuck to my guns and insisted on having a bilateral mastectomy with immediate recon. It would have saved such a lot of time, but I suppose the main thing is I feel fine now. Wishing you all the best xx ... View more

Please, Annie, go to see your GP. I had intermittent pain in my breast for years and finally went to see my GP when I felt a mass behind the nipple and my armpit felt swollen. In my case it was cancer. The lump itself wasn't at all painful though so I really hope you can go and get some reassuring news. Whatever is wrong, you can't carry on like this. xx ... View more

I've taken the plunge so to speak. Two weeks ago I went off on holiday, by myself, and met up with a small group of over 50's single travellers in Cyprus. Right up to the morning of the flight I was telling my husband I couldn't go through with going on holiday by myself, let alone wearing a swimsuit in public. I had a second mastectomy last November so I've got a pocketed cossie I can put my special swimming prostheses in. I was stood in front of the mirror in my hotel room for ages just looking at myself in despair although to be honest it was more my big tummy that was worrying me more than the boob area, then I had to pluck up the courage to unveil myself on the beach, then I finally managed to wade into the sea (very cold!). I did it though and my lovely new friends took a photo of me to prove it. I'm all set now to go to the swimming pool next to my place of work this Monday. A couple of friends at work have started going at 7am before work; they tell me the other swimmers at that time of day are in their 70's and 80's. I'm hoping to start by doing a length or two and then building it up a bit. Both my friends are trying to lose weight and get fit and they say they really enjoy swimming once they've made the effort to get into the pool. Best of luck to everybody. x ... View more

Hi Jay I've had 3 MRI scans, two where they injected a contrast and one when they didn't, so I can't help. I was dreading the first MRI but they were so nice to me and having the needle put in was OK. I really felt for you when I read your post; I've been taking anastrozole and then exemestane since last July so I'm at about the same stage as you treatment-wise. I get pains in my joints and back and if I sit or lie in one position for too long I can hardly move. The trouble is, I know if I saw the oncologist about it I'd go straight into panic mode just the same as you if I was referred for a scan. Conversely, if he just said it was something to expect with AIs I'd probably feel fobbed off. I'm waffling on but this is just to send you my best wishes and hope you get it over with soon and have your tablets changed to somthing which suits you better. xx ... View more

I read 'struggling to stay positive' and felt I had to say something, but Maire has said it all (and far better than I would have!). All the best and feel free to whinge whenever you like. Pauline xx ... View more

Hi Amanda - another Pauline here, sending you best wishes and hoping the machine was working yesterday. I know nothing can take away the worry of waiting for results, it's truly horrible. I only finished chemo and rads last year so I've got no advice to offer. I'm sure though, if you do need further treatment, there are lots of ladies living with secondaries only too happy to give you support and encouragement. Pauline xx ... View more

I know it's impossible not to worry but as others have said, try not to worry too much. I had pain in my breast and it turned out to be cancer 18 months ago but it wasn't the intense pain and itching you describe. However, nearly thirty years ago I remember a few weeks in my life when I did have that sort of pain. I remember being out for a walk with my husband and the pain was so bad I was worried I wouldn't be able to get back to the car. I don't know what caused it. With hindsight I should have gone to my GP, but I didn't and it eventually went away. ... View more

Hi Viv. I do sympathise even though my situation is different. I had my left breast removed November 2011 and the other one November 2012. I thought I'd be quite happy to be be breast free but I'm not! The surgeon told me we can discuss reconstruction when I see him in June but I'm in a quandary about what to do. I'm 61 but I have a son aged 14. He has autism and I know some autistic children have problems with physical contact but my son is just the opposite. I think it's his way of showing he's stronger than me but he's always hugging me and putting his arm around my shoulders. When I had my mastectomies I had to stay with my daughter for a few days as I couldn't cope with him so I don't know how I'd manage after a recon. My husband is around but, well, 'chocolate fireguard' comes to mind, bless him. The other problem is I've returned to work after being away for a year and I'm really enjoying it. I don't fancy being off work again for any length of time. Hopefully there'll be such a long waiting list for a recon that I'll have retired from work and my son will have gone to college somewhere miles away! The surgeon did tell me one of his ladies made a decision to wait until she had retired and then have it done. I feel if I don't have it done, even at my age, I'll end up feeling resentful because I couldn't do what was right for me. ... View more

Like Milo I've got double mastectomy scars and those horrible dog ears under my arms - in fact it's the dog ears that bother me the most: one of them looks like a little breast under my arm. Maybe if they could be removed I could accept my breast free chest. I'm a 15 months down the line from my first mx and 3 months down the line from my second mx and I expected to cope better than I am. It's better being flat rather than lopsided but I still hate it. The 'adverts' on TV make me cry sometimes but they don't upset me because I think most of them are very well done. ... View more

Hugs to you xx. I've just typed out a whole load of how I know how you feel then deleted it as I didn't want to sound too depressing. Just to say I agree completely about having enough of the daily grind. ... View more

When I had my first routine mammogram at the age of 50 I was called back because some thickening of tissue had shown up, then I had an ultrasound for more detailed results so I wouldn't worry about not having a mammogram. It turned out there was nothing to worry about at that time; I was diagnosed with invasive lobular cancer 10 years later. I do hope everything is OK for you on Thursday but I think you've definitely done the right thing is asking for further tests. The worry of waiting for tests/results feels worse, I've found, than actually going through any treatment. xx ... View more

I had my mastectomies a year apart so I'm completely flat now. I think, on balance (though maybe that's a wrong choice of phrase!) I prefer being flat to being lopsided. I don't mind my prostheses and I think it's helped that I've chosen to be a smaller cup size. My real boobs were DD's and I've gone down to a B. I'm still pondering what to do about reconstruction. It would be nice to have a more rounded shaped but I'm back at work now and really enjoying it although at first I felt like the new girl when I went back. Reconstructive surgery such a big operation and I'd have to be off work and then have to re-adjust all over again. The other problem is my scars look ugly because I've got horrible flaps of flesh left under my arms so even if I don't have a recon I'm going to have to ask the surgeon to tidy me up a bit. It's all decisions, decisions isn't it. xx ... View more

I was really apprehensive about my first appointment with the oncologist after finishing active treatment. After all, I'd had 2 operations, 12 sessions of chemo and 15 sessions of radiotherapy. Obviously I wasn't expecting to be told I was cancer free and to go away and worry no more but I expected at least a blood test. Instead the registrar had a quick look at my chest, felt my neck and under my arms and asked how I felt. I said I felt OK so she said they would see me in a year's time, carry on taking the hormone tablets and that was that. I'm going to bear in mind what Rosebud said, put it to the back of my mind and enjoy life. Your mum has done really well having all that chemo and I wish her all the very best. ... View more

Hi Bellakate I read lots of posts about arimidex and was really scared about taking it; I was sick with fear at the thought even of taking the first tablet. The thought of hair loss was the most scary but like Nannabarb I think my hair loss issue is more connected with the Docetaxel chemo I had. Anyway, I took anastrozole for a few months and was fine with it, so when they changed me on to exemestane I started panicking all over again, but so far so good - just a few aches and pains but then I am in full time work and things are hectic at home so I'm doing really well considering. It's probably best just going for it and dealing with side effects when (and if) they happen. Wishing you all the best. Pauline x ... View more

Hi. I was diagnosed ILC in my left breast in October 2011, 4 out of 8 nodes involved. I chose to have a mx because of family history and also because the lump was quite large and behind the nipple, but I was offered a lumpectomy. This was followed by 4 x FEC, 4 x Tax and 15 sessions of radiotherapy. I notice Bethy says she always has a breast MRI as well as a mammogram at annual checks; this is important because after I'd had a right risk-reducing mx (again by choice) in November 2012 they found a tumour there which had eluded a mammogram done only 2 weeks earlier. Lobular tumours can be tricky, as my oncologist said. I'm feeling very well now, getting used to hormone treatment, completely flat chested of course but I'm going to be discussing reconstruction with the surgeon quite soon. All the best with your treatment. Pauline xx ... View more