Breast Cancer Now Forum

I had sreening for micro surgery at Oxford yesterday. Unfortunately the flow of my lymph suggests surgery only has 50% chance of being successful and even then would reduce my arm from 22% to 10% as a maximum. I am having to fund the surgery myself so undecided what to do. Could I ask ladies who have had it done at Oxford what % of success they were given and did it tie up with the results after surgery?   Thanks ... View more

Jingo can I ask what % success rate you were given in your initial consultation? I went for mine at Oxford yesterday and was given 50% chance of success so not sure whether to have the surgery done.   Thanks ... View more

Hi Elinda..............I went to my GP. They have to refer you as I think the treatment would come out of their budget....other people have what I consider to be unnecessary cosmetic surgery on the NHS so I don't see why a bona fide condition like Lymphoedema should not be covered. ... View more

Hi..........I got my referral letter through from Oxford to make an appointment, When I called to make it I was told  they are waiting for clearance from NICE to fund NHS treatment. Until they get a decision to fund/not fund they are just building up a database of people interested in having the surgery. So , for now, the only way to have it is to pay £10k plus to go private!! They are hoping for a decision in Jan 2014. ... View more

Hi Rattles..............I went to see my GP last month, she was very supportive  of any treatment that would impriove my condition.: :     I  got my  referral letter this week to ring and make an appointment.  I will report back once I've been to see the team in Oxford. x ... View more

Hi Andie...........I would be interested but only in the New Year when I've "retired" ... View more

Hi Rattles..........I agree with you that lymphoedema is a side effect that does not get much press but which affects lots of us. I have investigated this Supermicrosurgery, I was hoping it might be covered under the medical insurance I am fortunate to have through work. However, because it has not been passed by NICE, it is considered to be a trial treatment therefore they would not fund it. I then asked my oncologist about it and they told me I had to speak to my GP. I sent my GP copies of the info I had and am waiting for a response, but I do not hold out much hope to for a referal for NHS treatment. In my area MLD treatment is available but not on the NHS so I  would have to pay between £50-£70 a session. I am hoping to having MLD  later this year, but the therapist will not do it without a letter from my oncologist, the oncologist refuses to do a letter until I finish my Herceptin, as I have had a  blood clot , and MLD could cause another one!!! So at the moment I have to rely on compression glove/sleeve to keep the lymphoedema under some sort of control. ps. re the joint pain, my GP has prescribed anti-inflammotories and they have eased the pain so maybe worth a try. ... View more

Hi Ladies..............I've been on Tamoxifen since Jan 2013 and I am suffering the same sympthoms eg. if I've sat down for a while I am stiff when I get up, it does ease off a bit once I;ve moved around but it does make me feel like an old woman. I'm seeing my oncologist for a check up on Monday so I'll mention it and see what they say. Changing the brand of tamoxifen sounds like a good idea so I'll try that too. (Maggie1964 .........Not sure I can give up my glass of wine though ) x ... View more

Hi Ladies.............unfortunately I can't make tomorrow either. Hope to catch up in September............Have a fab summer x ... View more

Hi Andie...........I had most of my 18 rads @ Bracknell. The facilities there are much nicer than Reading, however if you book @ Bracknell they have to shut to calibrate the machine regularly so you will have to go to Reading at least once during your sessions. The staff @ Bracknell and Reading are friendly enough but if you go to Reading prepare to manhandled by male radiographers. For one session there I had 3 radiographers plus a student, all male !!I was asked if I would like them to get hold of a female radiographer but that would involve more waiting around so I put up with it. I moisturised with the cream they supply you with and I had no problems. However some ladies I spoke to there found the skin under their breast cracked and started to weep. Hope this info helps. Jax ... View more

Well done June22............another positive (in a good way) result lets hope we hear some more xx ... View more

Hi Ladies...........had a call this afternoon from oncologist...........mammogram result all clear.............woohoo...........now I can look forward to my final six months at work, then semi-retirement in December at 51...... I hope you all have good results too when it's your turn xx ... View more

Hey August Ladies.........how r you all doing? I expect like me you have or will soon have your "anniversary mammogram"? I had mine last week and now waiting , anxiously for the result Have any of you had your results. xx ... View more

Hi Ladies............I will be there on Saturday and probably bringing 2 others with me from Woodley & Wokingham. see you soon x ... View more

I have to wear a glove and a sleeve. The 2 gloves I had are really bobbly and I've only had them for 3 months, due another set end June, So I ordered a glove from the company used by my therapist, it cost £49!!!.........I had to get the prescription from the therapist then when I placed the order the company would not accept it unless the therapist vouched for me as being a patient!! ... View more

Ladies ...........lovely to meet you all and have a good chat.......Marion perhaps you can join us when we meet up again in May have a good weekend all. x ... View more

HI Ladies, just catching up with this thread after my holiday and would love to catch up with you all on Saturday. I've had 10 blissful days away with no doctors/hospital appointments. Came back on Saturday and have already been to hospital 3 times!!!........... xx ... View more

Hi Ladies...........my first order of "hijab undercaps" have arrived.......cost per item £2.45 and although not as good quality as chemo wear previously purchased, definitely worth buying at the price.........in fact just ordered a few more in different colours ... View more

Hi there Fairy Lady............I am 50, live near Reading, lumpectomy in July 2012, started chemo Aug 2012, finished Jan 2013. Just finished radiotherapy and still having Herceptin. If you want to chat/email get in touch, I am happy to share experiences and help if I can. ... View more

Thanks for the tip Mrs B........even though I've got a wide selection of wigs I also like to wear alternative headwear and at these prices I can purchase loads.............woohoo ... View more