Breast Cancer Now Forum

hi As far as I was told DCIS is cancer but is confined to the ducts of the breast. I had it throughout my breast and was told I had no option but to have a mastectomy. Susan I think you are right to think you will end up with mastectomy, I had two stereo biopsies to locate areas and I can honestly say that the tests were worse than the mastectomy. Good luck Suex ... View more

Hi Carol Sorry you have been through so much and it is still going on. I had a mastectomy due to DCIS two and a half years ago, no invasive so did not need any further treatment but I stll have benign lumps in my remaining breast. I know how hard it can be to talk to people when you have not been through as much as them but everyone on this site is very supportive and will respond with help where they can. So keep posting Hope your lump turns out OK Suex ... View more

I know what you mean I had mastectomy and recon 2 years ago. I had widespread DCIS which had not become invasive. I consider that I got off lightly when I read what some people have gone through. The problem is that with DCIS they drop you like a brick after the mastectomy, especally if you do not need further treatment. There was no follow up for me, no support from the breast care nurse , no emotional support etc. They just tell you that you are now fine and to get on with your life. I don\'t know if this is how it was for you but it does leave you feeling a bit shell shocked. On the bra front there is a mail order shop in leeds called oops & downes. I have bought some lovely bras from them Tel no is 01132587900. Don\'t feel guilty, I think it is so hard to get on with your life as \"normal\" I can\'t even after more than two years. I don\'t know what the answer is!!!!!!!!! Hope you are not feeling too bad today Suex ... View more

Is it possible? Hi I have not posted for a while I have been trying to put BC to the back of my mind, some chance!!!!!!!!! My mastectomy over 2 years ago was for intermediate grade widespread DCIS with no evidence of invasion. On the opposite side I have lumps under my arm and down the breast and they have been diagnosed as begnin. I have just been to docs as since November I have a strange feeling down the side of my neck on that side and a nagging pain in my back, on the same side. Doc is sending me for a camera down my nose Urghhhh and a scan (don\'t know what sort). She did not say what she thought it might be and now my mind is playing tricks!! I was assured my DCIS could not spread so should I be worried? Or am I just being paranoid? Any advice or suggestions???? Or just tell me to stop worring, I\'m being silly!!!!!! Suex ... View more

Hi I have been on Tamaoxifen for only 3 months and this last few days have been feeling pains in my joints and it almost feels like my bones. I thought I was coming down with flu as keep feeling hot etc, but now I have read this post I am thinking it might be the Tamoxifen Suex ... View more

Hi Carol I am sorry you have had so much trouble with your recon. I am not exactly in the same position as you but for years I had lots of benign lumps investigated, unfortunately eventually they did find I had wide spread DCIS. So 2 years ago I had left mastectomy with ld recon. I had excellent results from recon, looks good and is very natural. But I have been having nerve pain and the recon has been very uncomfortable the whole time. Most of the time I can cope with it but occasionally it really gets me down. I have been trying to find out what happens if they remove the implant/breast mound. Also what happens to the ld muscle that is at the front? Hope you don\'t mind me asking! Take care Suex ... View more

Hi jane 66 I was scanning the forums to try and find some info on Tamoxifen and came across your posting. My problem is slightly different to yours but just thought you might be able to help. I had mastectomy and recon but no other treatment two years ago. Recently consultant decided to put me on tamoxifen to help with the many benign lumps I am getting in my remaining breast. I was under the gyne for some small fibroids and period trouble. Two weeks after starting the tamox I started a period which has not stopped. I am trying to find out if this sort of thing is a side effect of tamoxifen. I was told I could have menopausal symptoms but thought that meant fewer periods not more!!! I hope you got your problems sorted. Suex ... View more

Hi Jaybe I had dcis and mastectomy two years ago. Before this I had fibroadenomas and was checked every 6 months by the breast clinic. Even though it is a benign condition. My dcis was not detected early enough to avoid a mastectomy but at least early enough to prevent it turning invasive. I would request regular check ups if I were you particularly since you needed surgery. Hope this helps a little. Good luck Suex ... View more

Hi Lavinia I too had dcis and mastectomy two years ago. I was assured by the consultant that there was nothing wrong with my other breast. I have since developed three fibroadenomas, cysts and extra breast tissue. They keep and eye on it with regular mamos. As far as I know you can have calcifications which are not dcis. Before I had my mastectomy the calcifications had changed and this is what worried the surgeon. Sorry not all that helpful Good luck for June, that\'s when I go back too! Suex ... View more

Thanks everyone I think my experience is very similar and I guess at the end of the day, you cannot have any guarentees. It seems at my hospital, depending when you were diagnosed, you get a mamo yearly or every two years. I fall into the yearly and am thankful for that. But The radiographer has mentioned the risk of bc from too many mamos so I guess either way it is not ideal. Suex ... View more

hi all thanks for that it all sounds very similar to my experience. I am assuming they get clear margins with mine and were able to remove everything as I did not need any further treatment (thankgoodness). Suex ... View more

check ups I have a yearly mamogram on my remaining breast but even though it says ultrasound and mamo on my checkup letter, they always say I don\'t need an ultrasound . I have had a lump checked by ultrasound and when I suggested the radiographer could check the rest of my breast she said no and that she had been asked to check the lump only. Do other people have both tests at checkups? I am 47 and have not yet gone through the menopause. Suex ... View more

interesting To hear other people\'s experience of DCIS treatment. What I don\'t understand about it is......... I was never given a number I was told widespread intermediate grade and on further testing of one particular area high grade and told I had no choice but to have a mastectomy. I understood it was low grade, intermediate or high. Does grade 3 dcis mean high or is there more to it than I understand? I was also told that due to having a mastectomy I would not need any further treatment and that it would not recurr. I hope they were right on this one!!!!!!!!! Suex ... View more

thanks for that I will give it a try. suex ... View more

Hospital status? How do you find out if your hospital is a leading hospital in treating breast cancer, or just \"treats bc\" ? Just interested to find out really. My local hospital has a breast unit so I asumed it was a specialist centre but think I could be wrong?? Suex ... View more

Hi ---I can only agree with the others, you should go ahead with the scan if only for your peace of mind. I was going to the breast clinic with benign lumps, pain etc, problems for years before I was diagnosed and had to have a mastectomy. I often felt like I was wasting their time and that other people were more in need of the service than me but if you think of 9 out of 10 lumps being benign, then most people in the clinic are probably in the same boat as you. I remember the consultant saying to me, we would rather see you and tell you it is fine, than not see you and then have to give you terrible news because it was not checked out. He said I should never feel like I am wasting their time and that that is what they are there for. I hope all is ok for you and that you get the clinic rung and rearrange your appointment! Best wishes Suex ... View more