Breast Cancer Now Forum

CurlyGirl · ‎19-10-2011

Hello all, Does anyone know how reliable bone scan results are? I have been misdiagnosed twice after scans biposies etc and do not have a lot of trust in test results. I had Bc in 2006 and had the full whack of treatment. I have had pain in hip area for several months and had a bone scan which was clear. Is it possible that there is something there which the bone scan did not pick up - is there a more accurate test for spread to bones? I would welcome your experiences - just want to put all this out of my head. Thanks you for your time, love and hugs to all x

CurlyGirl · ‎10-08-2011

Hello all,I was just wondering if anyone has similar experience or advice please? I had MX in 2005 and had recon in June 2010. I ahve been getting pain in my chest on affected side - feels like its behind my reconstructed breast. Its been there about 2 months and is getting more noticeable. I went back to hospital and all doctor said was in his view it was muscular, and anyway as there is no lump there are no other tests they can do, then was sent away feeling like I'm making a fuss. Beacuse of previous difficulties in getting diagnosed I am unhappy to accept his word. I have had cancer twice and on both occasions was told it was nothing. Would a re occurance cause pain or is it possible to get a re occurance behind the reconstruction, in whcih case it would not be possible to feel a lump? I have got my annual check up at the end of the month and wondered if I should insist on tests and if so what kind? Any thoughts or experiences would be most welcome. Thank you everyoneX

CurlyGirl · ‎06-04-2011

Hi Ladies, I'm after a bit of advice and I know theres someone out there who can help!! I am 4 years post mast / chemo / rads and finally had a recon last year. I had my lymph nodes out on affected side and been very careful - no BP, needles etc in that side. I have now been diagnosed with carpal tunnel syndrome on that side in my wrist and although I have no outwardly visible signs the hosp think that this may be caused by lymphoedema inside my wrist. I have got to have op to release the carpal tunnel - I have no choice pain is really bad and am not sleeping at all beacuse of it. I am however really worried that as I am having surgery on this side I am risking lymphoedema. The BCN says yes there is a risk, but the ortho surgeon says no. I am inclined to believe the BCN. Has anyone else had this op on affected side and had any problems - also is there anything I can do to minimise the risk after the surgery? Any help would be much appreciated. X

CurlyGirl · ‎01-04-2011

Hi Ladies I just thought I'd update you on my situation in case anyone else is experiencing similar problems. I have now had a second opinion with another PS. She has told me that what I am experiencing is a recognised side effect of this op, and 25% of ladies having this op get this problem (hooray I'm not the only one in the world!)Although only a small part of muscle is taken, this is enough to cause abdominal problems like this. There is a solution - another op to realign muscles and more mesh to strengthen, but no guaratees that this will work, but it won't make things worse at least. I feel really angry that my original PS did not explain this to me - I feel he must have been aware, and that I was not warned before op.He made me feel like I was making this up or it was all in my head, if I'd at least known before the op I would have been prepared for what has happened. This op is 'sold' on the basis you will get a tummy tuck, but please beware ladies you may end up with a tummy bigger than it was previously.

CurlyGirl · ‎30-01-2011

Hello Ladies, I have posted before on this subject, but am now getting desperate for answers or to hear from anyone else who has been affected in this way - I feel like the only person in the world with this problem 😞 I had a muscle sparing tram in June 2010 and have had probelmswith my tummy from day 1. It is swollen and very rounded, and feels as if it is bloated all the time. It gets worse if I am on my feet for a long time and worse when I eat a a normal meal size quantity of food. Consequently I have lost over 2 stone in weight as I only need a small amount of food before I feel full, but my tummy is still not shrinking.I am supposed to have had a tummy tuck but tummy is larger than before!!!! I have had ultrasounds, CT scans and my PS is telling me there is nothing wrong. He thinks it may be weak muscles and have been told to exercise or a reaction to the mesh. He has offered to remove mesh but doesn't want to and I don't want to go through this if it is only a possibility. ABdo scar has healing wonderfully and I don't want to put myself or my family through another possibily unnecessary op. He says he can't do any more. I have been seeing a physio to get a proper programme of excercises for abdo muscles but so far is not making any difference. I KNOW THERE IS SOMETHING WRONG , but I just don't know where to turn and it would be great if someone else out there has had been through this and come out the other side. Am thinking of getting a second oopinion privately but can only afford a consultation so am wondering if it is worth it. Also feels like I am betraying my PS (silly I know!) as in all other apsects of treatment he has been wonderful.

CurlyGirl · ‎09-08-2010

Hi Ladies - thanks for all replies - I'm not on my own after all! SJC - I am swollen from just under boobs right down to scar on tummy - I look 6 months pregnant. Feels very tight and gets worse the more I eat and as the day goes on. I had my follow up with PS on Tuesday last week and asked him twice about my tummy and was just dismissed again. The other doctor in the room even joked that it was like I had a gastric band for free 😞 He does not want to see me again until I have next part (reduction and lift on other side) which will be 6 months. I now feel very abandoned and on my own and I still have leak of fluid from recon as well. I do feel bad about criticising PS as he has been wonderful until now. I went to see GP today to get another note for work and told her. She was great and examined my tummy (PS did not even have a look!!). She said it was very hard and did not feel quite right and has referred me for an urgent scan also blood tests as I am losing weight so quickly, although this is probably because I'm not eating. She also said I was being very optimistic about going back to work after 8 weeks and she would expect recovery to take 12 weeks. will see what scan shows but I do feel a bit better now that something is being done. I know its hard to question docs but I think if you are not happy or don't feel quite right then try elsewhere. Will keep evryone posted - can you all do so as well if you get eny answers? Very best wishes to everyone XX

CurlyGirl · ‎01-08-2010

Hi amd so interested to see your post as I have exactly the same problem and can't seem to find any info out there at all. I feel like the only one with this problem. I had my reconstruction 7 weeks ago so not as far along as you, my new boob is fab but my supposedly 'flat' tummy is far from flat, in fact I am unable to do up any of my clothes despite having lost 1 stone in weight as well. I have lost the weight as I feel full up very quickly because of the swelling and although I am Ok pottering around the house I can't walk any distance as I feel my tummy is pulling. I am feeling pressured to go back to work but I just don't feel that I can whilst I feel so uncomfortable. every time I have metioned this to PS/nurses they have dismissed it. i have an appointment on tuesday with PS who has been wonderful with everything else, so I am going to insist that I need someting to be done (not sure what though :)) I will post again after my appt and let you know as it may help you as well.

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