Breast Cancer Now Forum

Big hugs Jinny. Thinking of you, as always. X X X x ... View more

Hi Jinny. Just wanted to say I haven't been ignoring your private messages! I have been replying to them all, but I don't think you seem to be able to see them! It's a shame, as I would hate you to think I am not responding. I will get on to BCC and see if they can work out what's gone wrong. In the meantime, hope you are ok. X x x ... View more

Hi girls, just to add to positive stories, I was diagnosed with stage three triple neg in February 2007! I was warned that it was a very poor prognosis, and even refused reconstruction several times, on account of this! Thankfully, a new female surgeon joined the team. I now have six years under my belt, and have reconstruction to boot! I have to admit that I had never dreamt I would be writing this in 2013. I used to listen to news of the Olympics that were due to happen in 2012 and think that I would probably not be here to see them. I feel so thankful, I can't tell you. Keep going, ladies. I wish you all the best. I don't come on here very often now, but forum used to be a real lifeline in the early, scary days. Bedt wishes, jax ... View more

Just to encourage you all. I had DIEP in August, and I was quite worried, as have severe back problems, and understood that my recovery would be considerably harder. However, I was up and self caring within 12 hours! I kept moving my feet and legs nonstop, and walked about and tried to straighten up as soon as I was able. The back didn't seem to add any more probs than anyone else had. Was able to leave in 5 days without any drains! Sleep was understandable difficult for 1st week,but soon sorted, and I am SO happy with breast and tummy. Having waited 5 long years, you can imagine my delight!From what I have discovered, DIEP is certainly the best op, and although very major surgery, I do think it is easier to recover from than the TRAM or LD. I hope this hopes others who may be a bit worried about going ahead. Best wishes and Happy New Year to you all, Jax ... View more

Hi Jo, Another good news story for you! I was diagnosed about same time as Horace, and I had large 5cm tumour with 14 lymph nodes involved, now 4 yrs down the line and no reoccurance!! I believe that the use of Tax for TN has really helped our chances, so best of luck with your treatment. As for chemo and hair loss, I really think it is as individual as the women who have treatment! As you saw in earlier posting, someone kept hair with FEC and lost it with Tax. I was other way round! I lost it very quickly on FEC, but it started growing back when I was on Tax. Some think cold caps are brilliant, others have poor response to them ,and they do prolong the duration of treatment, and you can get head aches. But again, a very individual choice, so I guess I am not being very helpful Here!! With my very best wishes, and hope all goes well, for you and your little family. Jax ... View more

Hi Cathie, I think I win the olympic sticker for longest wait ever!! Was diagnosed Jan 2007, had Mx, chemo and rads so could'nt have immediate recon. Saw cons after 6 months and told him I def wanted to go ahead, and was told my chances of survival so slim it wasn't worth it!! kept trying every few months and eventually told to wait and see if I survived 2 yrs! I did, and went back again, only now had developed probs with my spine, not mets. He then denied me on grounds of disability!! Thankfully sense prevailed and changed surgeons-now have a fantastic lady who has changed my life, bless her. Has referred me to a hosp which does DIEP as my hosp doesn't, and this should not interfere with my back as doesn't use muscle. Been accepted, but told I will prob have to wait until autumn, so that will be nearly 5 years!! Howzatt!! Best wishes, Jax ... View more

Sorry, message came up twice...gremlins on the forum website XX ... View more

Ruth, I am so, so sorry to hear this. It is just unspeakable. I am sorry too, for misreading your message earlier when you said something about FUBAR, and I thought you were given the all clear after you expressed concerns earlier. What a stupid-head I am !! What must you have thought?!! I am sending you one of the calendars, as the organiser has taken the project off, after she suffered abuse from a one-time friend, especially bad as she was going through a tough time too....Bless her, it was so successful she had been asked to take it to Europe and America, but there you go. I am sure I have your address from when I did the STARS ball tickets. It was called 'Dear Cancer', and my main input was my poetry. Can't stop thinking of you and your lovely family. Loads of love, Annie XXX ... View more

Ruth, I was involved recently in a similar project, and we had a fantastic time, and the photos were stunning. I can send you a copy of a calendar we had made for charity, and even at the ripe age of 55 was stunned and surprised to find how comfortable I was with baring all, and it has really improved my confidence and body image. So go for it, and enjoy it!! We even made it to the national papers and I was a page three girl...I don't know, a middle aged one bosomed porn star!! However, the sad thing was that when the project was on Facebook, someone complained and we were removed for the 'sake of public decency'. If you see the pictures, you will know that was not the case, as indeed was the Scar Project, in America. After much publc protest we were instated, but doesn't it make you sad? Good luck with it all. When do start chemo again? ... View more

Maggie, I have sent you a PM re back probs and the help you offered. Thanks again! I have my appointment at Charing Cross hosp next Mon 21st feb, so I am now armed with good advice! I have to say I am very nervous, and still unsure if I will go ahead, but I am encouraged by looking at the many positive postings on forum. I will let you know how appointment goes...they may refuse me before I refuse them!! I hope not. I want to be brave enough. I would love to have two boobs again..... LOve Jax ... View more

Glad you are doing Ok Ruth. Have a good day, Lots of love AnnieXX ... View more

Really, really useful comments, Nicki, and so encouraging! Just what I needed to hear. Thanks so much. Best wishes for your continued recovery, all the best, Jax ... View more

Hi all, I would really appreciate some honest wisdom from ladies who have been through op. My position is that I have waited 4 long years for recon; firstly cos I had prat surgeon who said it wasn't worth it, as my prognosis was so bad?!!! Unbelievable, but true, I'm afriad. Then I developed spinal probs and he refused due to my disability! Changed surgeons and now have fantastic lady. My hosp only do TRAM and LD which would not be suitable cos of back probs, so she has referred me to a hosp that does DIEP. I have read extensively over 4 yrs, but I would like to know from ladies who have gone through it. Firstly, I am on morphine anyway for pain, so did you have to spend lots of time on your back post op? Would I cope, do you think?? I walk with crutches, too, so am I being foolish going ahead with it? Oh, I know you can't answer for me, I just would like to honestly know the various pit falls you found. I would SO love my boob back! Any help would be gratefully received. Thanks ladies. Consultation is 21st Feb. Jax ... View more

I am sick to death of being blamed for being ill!! Whether its heart disease, diabetes or cancer, you no longer get sympathy, just people looking at you and thinking, 'well, she obviously got what she deserved!!' What has gone wrong with our society? I know that we should look after our bodies as best we can, but really, it's all gone too far now. For my part, I had 3 kids early in life, breast fed them all, was never on the pill, never smoked and hardly ever had a drink. I kept fit (well, who doesn't with three little ones!!?) and was a good weight. But I have triple negative BC which is not hormonally linked, so it truly was not my fault! I am really, really fed up with people who now try to tell me what I should have done to prevent BC. I have it, it's hell, and we have enough to think about without the guilt attached as well. Sorry, I needed to rant. LIfe is about living, and not about being saints, so please don't any of you beat yourself up. Best wishes to you all, Jax ... View more

Yes, I intend to!! Or 99 at the very least.... as for blood tests, am I the only one who apologises to THEM when they fail to get my veins?!! And then think, no, it should be them apologising to me!! ... View more

Love this thread! I used to get completely fed up when I saw people at the shops or out and about when I was having chemo, feeling sick and a mouth full of ulcers...and was greeted by 'You look well!' I don't feel it!! Then when I first lost my hair and ventured out, I was met by 'Oh, it's you! For a minute I thought it was some bloke coming up my drive!' This, from a close friend (or used to be) Then the best of all, was being refused reconstruction on the basis that 'I would probably not survive two years' - yes, I have since changed surgeons!!! (Now 4 years and counting!!) Best wishes to you all, Jax ... View more

Happy Christmas to all the STARS ladies, Much love and best wishes for the New Year, Annie XX ... View more

Hi Shiela, Sorry you have had to join us. But I am sure that you will now hear some inspiring stories from TN ladies. I was diagnosed 4 yrs ago, with large tumour, and 14/20 lymph nodes affected plus heavy vascular involvement. I was refused reconstruction on the grounds that I was too high risk, as he expected me to be dead in 2 yrs!! Yes, I had a lovely sugeon(!) I also checked out me statistics using the various tools, and it wasn't good. But...they are just statistics, and I have proven that it is the person that counts, not the numbers. I am still free of disease and STILL waiting for recon, but now have a lovely new lady consultant, who is just great. This is a terrible disease,and none of us know how it will affect us, but the statistics are not concrete, and I know with chemo, TN does much better than other positive cancers. It is just hard when we have nothing to fall back on, like Tamoxifen, Herceptin etc. I hope this helps you as you come to terms with your diagnosis, and we are all here to help and encourage. best wishes, Jax ... View more

Hi Paris, I am utterly horrified for you, but not surprised. I am seeing my consultant this week, and I expect to be told the same. Had MX nearly 4 yrs ago now, and I have tried four times to get reconstruction, but my surgeon told me I was such high risk of cancer returning, he wouldn't do it!! I don't know ANYONE else who has been refused on these grounds! Had large 5cm triple neg tumour with heavy lymphovascular involvement, but guess what? 4 years later and I am still clear, so much for his statistics.But now have spinal probs due to treatment, so then he refused me on grounds of disability! I am basically fit, have never smoked or drunk, so I am gutted. Got a lovely new lady surgeon, so I was hoping this time I would be able to finally have surgery, but I am sure it will be turned down on financial grounds, like yourself, and I certainly can't afford to go private. This year alone, I have been turned down down spinal treatment as PCT won't pay, turned down for psychiatric help, as PCT won't pay, so why should I really expect any difference now? What is happening to our NHS? Jax ... View more

Hi Sophie, Yes, BC does officially change your image!! I don't know the whys or hows, but I can vouch for the fact that wearing dark (doesn't have to be black, mine was plum) varnish does indeed save your nails, both on your fingers and toes. I had Taxotere, and this is famous for causing nails to drop off, but I managed o hang on to every one of them, even though some did look a bit horrid. It is an amzing thing, Plus, it makes you feel a little bit glamorous when all the odds are stacked against you!! I had no hair, and no boob, but lovely elegant finger nails! Now nearly four years down the line, I still enjoy having my nails look nice, and it soon becomes second nature to do them every few days. Hope it works for you, best iwshes, Jax ... View more