Breast Cancer Now Forum

Two suggestions - for my pain I found my pocketed swimsuit from Eloise (online) really comfortable. My surgeon however got a pair of elasticated frilly granny knickers, cut off the legs and told me to wear it around my chest with a pad inside, and my bra on top. It certainly works, and from the fact that he had a supply of these frilly knickers I had to assume there are a lot of people with this problem (or he is not a very good surgeon!) and there is an army of us walking around with frilly knickers around our top halves! Hopefully it might make you laugh as well as ease your pain! ... View more

Sorry I did not make the last couple of meetings. Thought it might have been tonight which is why I went on the site to check. Made a note of the Sept date. ... View more

Re swimwear - I bought a really nice swimsuit from Eloise with pockets. It was not cheap but fits really well and they send them the next day and no problem about returning it if you are not happy. I have always been happy with their service, delivery and quality of stuff. I have other swimsuits I have bought from Nicola Jane etc but this one just gives me that extra confidence. You can look at their entire range online. Have a good holiday! ... View more

Hi all Have not been on for a while - now I feel it is IBC permanent rather than twice. I have been told it is incurable which did not leave me feeling very happy to say the least. The taxol/carboplatin dried up my skin but did not change the appearance of the other breast although they still say it is not cancerous. Two months after having finished the chemo, the wounds are opening up again and now I am going to start on capecabitine. It is beginning to feel that I will be permanently on chemo. Anyone else like this? Sorry a bit down. ... View more

Hi everyone Thanks for your comments - I did manage to get an appointment for a second opinion at the Marsden - went on Monday. They have confirmed that the Taxol and Carboplatin is the right way to go and that I should have a PET scan to see how things are going. They think the appearance of what looks like IBC in the other breast could be caused by a blocked lymph node in the middle of my chest, which they would hope would clear up with the chemo. They did say the chance of getting it all with chemo this time was unlikely, as with the first time, and that I would probably need a third round.... not quite what I was hoping to hear. However, at least they said they would have given me this mixture, followed by capecitabine and then there were new trials that may be available later. Hope you are all doing ok xx ... View more

Hi I was wondering what time you meet at the Longford Inn. I am not sure if I will be up to it but I thought I might try. Penn1 ... View more

Hi Jackie I have had a pink band of skin which has been sore since the operation at the end of May 08. I kept going back but they said I would just have to live with it. It then started blistering in Oct 09, and bleeding. The blisters are spreading along the original pink band They took a scrape and gave me the good news that they were not cancerous and put me on antibiotics. By this time I had convinced myself I had an allergy to the prosthesis! I went back and asked if I could be referred to a dermatologist and my breast surgeon then did a punch biopsy which came up with the cancer. Nobody has addressed the pain or that I am bleeding however! Do my first chemo tomorrow - I am going to have taxotol and carboplatin. My concerns are that the blisters are spreading so fast. I felt really fit before starting chemo last time and it worries me that I am feeling so low before my first one tomorrow. Anybody had carboplatin? Jackie are you saying that skin mets are what I have got - did you have this blistering and bleeding. The nurses told me skin mets is just when you get cancer somewhere totally different from the first one - I am so confused. ... View more

Thank you so much for all your words. I start chemo again on Thursday - I managed to bring it forward from 13th Jan to 31st December which I am pleased about but annoyed that my oncologist says that there is no lump in the other breast so I should not worry! I spent Christmas trying to cope with weeping, bleeding wounds which are so sore but having to wear a bra for appearance sake. My oncologist also said that obviously some of the cells were resistant to chemo last time so I would need different chemicals. He said he would try taxotere but I pointed out that I had that last time. It does not fill me with confidence when he said that was good - obviously I had had no adverse reaction to it! What about the need for a different chemical? Anyone any experience with a need for a different chemo second time around? My thoughts go to JaneRA whose post I have only just seen. ... View more

Lovely words thank you. I feel more tired and more worn now than I did a year ago. Chemo gave you a target to achieve - a quarter way through, half way and so on. Then it is over and no one actually says how long you will feel tired for and at that time you do not want to know. You survived chemo and it is over - it is all that matters. A year down the line, emotions all over the place, pains and doubts everywhere. Support is needed now more than ever so thank you for the words. How about a Year down the Line support group! ... View more

Hi Sarah66 I had IBC and it can be mistaken for mastitis which is why they try antibiotics first. With IBC one sign is that the nipple is inverted. I also had stabbing pains in the breast. I think it is a good idea to bring forward the appointment to give you peace of mind even if it is only an infection in the end - always worth having it checked out. Best of luck Penn1 ... View more

The best piece of advice I was given was to wear a silk scarf over the area - I have to say it is 5 months after my mastectomy and I am still wearing my scarf. It has been a life saver and allowed me to wear a bra (over the scarf). I could not have managed without it - it is soft and does not rub like other materials. Hope it helps you too . ... View more

Hi Tina I was diagnosed with IBC last November and did the 4 sessions of FEC and then 4 of taxotere. Followed by mastectomy and radiotherapy for 6 weeks. It takes a year out of your life. My hair is growing back, the pain is beginning to ease a little and I am hoping that it is all out of my system. I wish you loads of luck with the road ahead and if you have any questions don't hesitate to ask. ... View more

Hi Thought I might add that I actually took my old good solid bras and cut up the sexy underwired ones that I cannot use and used the cups of those to make pockets in the good solid ones. I have to say it has worked a treat and the fact that they are old and worn has been more comfortable. You can actually buy pockets from Anita for about £4 to sew into your own bras if you dont feel like being a meany like me although maybe the cutting up process was a way of moving on! Penn1 ... View more

Hi I thought I might add my comments to this - I thought I was having a double mx for preventative reasons but on the day they decided to just remove the infected one. When I queried this my consultant said there was no evidence to support the fact that I would get the same type of breast cancer again and one should not remove healthy tissue for no reason. I hate being lopsided and would have preferred to be flat but on the other hand I am glad I have not had to endure the pain both sides. I think my consultant believes that if the cancer is going to come back it could come back anywhere and you can not remove everything just in case so why remove the other one for the same reason. He has a point, I think. Not sure if this will help - hope it does Penn1 ... View more

Hi Clarebel - I am starting rads on 22 July too. Every other day for 6 weeks - is yours the same sort of program? I will certainly feel like part of the furniture at the hospital soon. I am worried that my scar will hurt but it is 6 weeks since the op but I am still very sore and find a bra really rubs it painfully. However as I have had a mastectomy I cannot walk about one sided so have to wear a bra. Hope that the radiotherapy will not make me more sore. Margaret - could I ask how long ago your operation was when you say that the scar feels hot? Regards Penn1 ... View more

Hi I was diagnosed with IBC in November, after noticing my nipple had inverted and the skin was pink. The doctors were very quick to start chemo. I had 4 FEC and 4 taxol followed by a mastectomy. I am now about to start 6 weeks of radiotherapy every other day. I am still sore from the op but apart from time off for the op have managed to continue working. It was important to me to try and be as normal as possible. My wig worked well but I cant wait for my own hair to grow a bit longer. It is like waiting for a kettle to boil. I was disappointed when I went for an appointment for my prognosis, especially as I had read all sort of stuff on the internet. The consultant said he could not give me a prognosis as it was too rare and there were no studies for statistics to be based on, but if I wanted a figure 50% would be about right! Better than the 3% on the internet though. The chemo is taking longer to get out of my system than I would like but I feel a lot more positive than I did in November, and arranged a party to celebrate being alive! Good luck to everyone with IBC Penn1 ... View more

I had 4 FEC then changed to Taxol. I cannot believe the difference - the pain is just excruciating and I was given oramorp which is liquid morpine to cope with the pain. It gives you a horrible dry mouth but at least it enabled me to sleep. My second taxol is just as bad except apart from the terrible bone pain I also have stomach pain and feel so bloated. I have not been able to eat at all because of the pain but the morphine does at least take it away at night. I could take it during the day but I would be a bit drowsy. My GP was happy to prescribe the oramorph. I am 5 days after chemo and still in pain. I have one more to go - the thought of going through this again in a couple of weeks is horrific but at least it will be my last. The fatigue is horrible. FEC was quite a doddle compared to this! ... View more

I use Nivea on my scalp and I have to say the itchyness has gone away and the hair started to grow a bit. Hope your head feels better soon. Best wishes Penn1 ... View more