Breast Cancer Now Forum

i thought I would just add my experience to the discussion.  I'm about to finish letrozole after just over two years.  I tried three different generic brands at first, including Teva, and had excrutiating joint pains, to the point where I could barely walk in the morning.  After reading a lot of comments by other women who had taken letrozole, I asked my GP to prescribe Femara rather than a generic brand, and the difference in my joint pains and other side effects was really dramatic, and was almost immediate.   My oncologist has told me that she regularly sees patients who have had exactly the same experience as me, and whilst my pharmacist tells me that the formulation used in Femara is the same as other brands, my oncologist said that she always suggests that women shoudl try Femara if they are experiencing serious side effects.  ... View more

I've had a very similar experience. I had my nipple reconstruction on 29 June, and was thrilled with the new nipple. I was warned that it would shrink quite a bit, which was fine as it was initially bigger than my other one. I had my first tattoo session in mid August, and my new nipple halved in size within a couple of days of having the tattoo. But it hadn't shrunk any more when I saw the plastic surgeon ten days ago and I assumed that it was at its final size - it was still small, but still looked like a nipple. The colour the tattooist used the first time was quite pale, and faded a lot, to the point where my breast surgeon didn't realise I'd had it done when I saw him last week. I had the second tattoo session on Wednesday, and a much darker pigment was used. Everything seemed fine until I got up yesterday morning, and my lovely new nipple has now disappeared and is completely flat. I'm so upset, and can't help feeling that the shrinkage must be due to the tattooing. I'm sure I remember reading that the tattoo ink could cause shrinkage, but the plastic surgeon said she had never heard of this. Fortunately she said that she would be happy to re-do my nipple if it flattened any more, and as I'm due to have a bit more liposuction to my new breast in the next 2 or 3 months, I'm hoping that she can do this at the same time. As far as the fading is concerned, the tattooist said that most women need at least two sessions, and she has me booked in for another one in January, but in view of what's happened, I don't want tattooing done again! ... View more

I had an immediate DIEP reconstruction in January, and was told in May that I may have to wait up to a year for my nipple reconstruction, removal of my dog ears, and liposuction. I was surprised to get a call about three weeks ago to say there was a chance it could be done during the summer, and even more amazed to then be offered a cancellation about 10 days ago. My nipple was reconstructed by cutting a clover-shaped piece from the flap skin on my boob and folding it round to make a nipple shape. Apparently they don't cut through all the layers of skin, so that the area which has been cut isn't completely raw. It was kept covered in a foam dressing for the first week, and when I saw the finished result on Friday, I couldn't believe how good it looks. I also had liposuction from my reconstructed boob, but there is still a bit of swelling, so I can't tell how well matched it is to my good boob now. I was fortunate in that the reconstructed boob has dropped to match the other side perfectly. I also had my dog ears removed, and general liposuction around my hip area. When the surgeon removed the dog ears, she opened up the last 2-3 inches of the original DIEP scar, so it is now very neat and tidy, with no additional scarring. I couldn't believe the amount of bruising from the liposuction, but none of the procedures were particularly painful. I think the whole thing took about 1.5 hours. I should have the tattooing done in about 6 weeks. When I was first told that I needed a mastectomy in November, I never would have dreamed that the end result could look this good - I am really shocked by the level of skill of the plastic surgeons who have treated me, and absolutely delighted. I have always been really pleased with the original DIEP operation, but the latest bits of surgery have made such a difference to me, especially having a really realistic looking nipple. ... View more

I started Letrozole about 7 weeks ago, and after comments I'd read on here, I was concerned that my side effects might get worse if I changed brands when my GP gave me my first prescription. I was also concerned that I didn't want to take a brand which contained tartrazine. I took my prescription to several pharmacies, but none of them stocked the brand I had been given by the hospital, and most offered me Teva, which contains tartrazine. When I found a chemist that stocked a different brand, the pharmacist was happy for me to read the leaflet which came with the tablets so I could compare the other ingredients with the tablets I'd been given by the hospital. I'd already had bad joint pains and horrendous flushes from the tablets I got from the hospital, as well as other less serious side effects, and don't think anything changed with the different brand of pills. But interestingly, I mentioned the side effects to the oncologist when I saw her on Monday, and she said that a number of her patients cut the tablets in half and took half in the morning and half at night, and this reduced their side effects. I started this on Tuesday morning, and already my joint pains and flushes are very significantly improved. ... View more

Thank you for all the helpful responses. It seems that I'm not the only one where an MRI scan hasn't picked up a problem. I've got a list of questions to ask the oncologist on Wednesday, but am still very shocked that my third tumour hadn't been detected - I really thought that an MRI scan showed up anything unusual, particularly a 5mm tumour. If I'd known that I had an invasive lobular carcinoma, I would have at least discussed the possibility of having a bilateral mastectomy and reconstruction before I had my DIEP! ... View more

Thank you both so much for your kind words. I had the MRI scan today, which was fine, so that's the first step on my journey to recovery. ... View more

It's very kind of you to post. When we went back, I was told that both lumps were small cancers. They are both about 0.5 cm, and I was told that they are both grade 1. The ultrasound did not show any obvious problem with my lymph glands. The surgeon said that I would need to have radiotherapy and Tamoxifen after they have been removed. He said that the removal would be a bit more complicated than he hoped; because the tumours are 4cm apart, and he will take a 1cm margin away around the tumours, he was concerned that there might not be enough tissue left inbetween to maintain a reasonable shape, and that a mastectomy might be a better option. We met the breast care nurse on Tuesday to talk through the options, and it left me feeling completely devastated. I think I probably asked too many questions, and although she was very kind, she was very matter of fact and didn't pull any punches. Like everyone else, I'm finding it very hard to come to terms with. I'm scheduled for surgery on the 13th, but at this stage I don't know what will be done. I've got an MRI scan on Sunday, and then on Thursday will meet the plastic surgeon and the surgeon I've already seen to decide on whether I will have preservative surgery or a mastectomy. Whatever happens, I think I will have the sentinel node removed on the 13th, and if it's feasible to have the lumpectomy, that will be done that day. If not, I'll be booked in for the mastectomy, probably just before Xmas, but this has to be done at St Thomas' rather than Kings. To be honest, I'm terrified - of the operation, the pain, and most of all that it could have spread. I've been reading about The Haven, a breast cancer support organisation, and I'm going on their introduction day on Tuesday, whichi I hope might help. I broke the news to my Mum last week, and she was devastated, particularly having lost my brother so recently. She only had her cataract surgery on Monday, and is still trying to adjust to her new lens as well as coming to terms with this. My daughter is home from university next weekend, so we will have to tell her the news then - I didn't feel it was something I should tell her over the phone. Sorry for the long post - it's hard to stop once I get going! ... View more

Thank you all for your kind and helpful comments. It does help to share feelings. Fortunately my daughter is away at university so I don't need to let her know that anything is wrong at the moment. It still all seems very unreal; when I was having the biopsies done yesterday, it was hard to believe it was really me lying there. I am trying to keep away from the internet! ... View more