Breast Cancer Now Forum

Well done, sounds like you're sorted with the 'stuff' you need. Is your MX on your dominant side? I wished I'd packed a battery toothbrush as I couldn't clean my teeth properly (my left-handed attempt was completely incompetent). The only other thing I'd add is a notebook to write down your feelings and anything else you feel like. I wanted to stay positive, so my outlet was to write in the book and shut it. I still haven't read what I wrote at the time (probably couldn't read the left-handed scrawl anyway!) Hope it all goes well. And if you can look at the scar as soon as you can and learn to love it before anyone else - I think it makes it easier and less scary. Let us know how you get on Annie ... View more

I've practised with different times and it seems to work best if I take it at 5pm (ie: I can sleep better). Also very definitely nowhere near a cup of tea - I make sure it is at least an hour clear as someone on these forums months ago said her onc. advised that because she had been taking hers with tea, it wasn't working - so not sure if that's true, but I don't want to risk it. And I drink loads more water during the day (which I hate) and cut down on cups of tea (which I love). It's different for everyone, I know, but I realised also that I was waking up at night due to drinking a full glass of water with the Anastrazole at bed time - and needing to go to the loo. Then, 'cos I was woken up, I noticed the night sweats, then I couldn't get back to sleep and blamed the medication. So, taking it at 5 seems to get me to sleep through - but it took a few months before this happened. My feet are peeling and my eyes are sore - but I am still on Herceptin, so not sure I can blame the Anastrazole. Annie ... View more

You mention a vein, and chemo can make the blood a bit 'sticky'- but especially so with Tamoxifen. It is a very small risk, but is a risk even without Tamoxifen, so do get whoever sees you to check that it isn't a small blood clot (can be checked with an ultrasound if the operator knows what they are doing). I have just received an official apology from my onc. for failing to spot mine. But she did explain that as lymphoedema is more common than a blood clot, it is difficult unless you're looking out for it. She has now used pics of mine and the ultrasound scan to educate the team in what to look out for. I was convinced I had cording and was treated for 4 months for lymphoedema and all the symptoms were very similar. Don't panic though, just double-check - it is all resolvable. Annie ... View more

..just to add, I bought myself some 'arm hosiery' by Charnos (like a pair of tights that cover your arms and link around your back), from Mary Portas on the House of Fraser website. I bought a black lacy pair which means I can still wear a sleeveless black dress with the arm hosiery over my lymphoedema sleeve. Also, if you need to wear a glove (I do when I use the computer and mouse at work) there are black ones, which look much nicer than the 'hearing aid beige' ones and don't look grubby so quickly. With a bit of nail varnish, it can even look a bit glam! Also, keep doing shoulder shrugs, arm lifts and deep breathing every time you think about it to keep the lymph flowing. Annie ... View more

Maybe you all know this, but I started to follow manual drainage techniques once I'd been measured for my sleeve. Next visit to the Lymphoedema nurse, I told her what I'd been doing. I thought she'd be pleased, but she wasn't and said that no one should be doing any manual moving around of lymph fluid unless you are absolutely sure there is no chance of any residual cancer there. So, maybe you are all OK, and I'm the only one that didn't think it through, but just wanted to let you know in case any of you are like me, without clear evidence that the cancer has all gone. Annie ... View more

Thank you dawn, and Jeniffer, I really agree with you. I'm often far too determined and mouthy and I've realised that my diagnosis has made me Mrs Angry, so 2012 is when I think about others a bit more. The cancer card is there to be played, as we have every right to use it, but I'll try not to use it in anger or frustration. Good luck to all. Annie ... View more

Excellent...the more people who can post news about their hospital the better, and maybe we can use this to persuade the hospitals that they should post info on their websites (Royal Marsden didn't seem to want to for some reason). Annie ... View more

I think that if those of us with cancer, can ask for help in a gracious and thoughtful way, most people will respond well. Unfortunately, many of the people we ask will encounter cancer in their own lives at some stage, and will remember how we behaved and feel brave enough to ask for help themselves. I travelled to London on the train/tube regularly with nothing on my bald head and people obviously felt uncomfortable. I always asked quietly if I could have a seat and once I'd broken the ice, everyone was so lovely and helpful - and usually a conversation around cancer was started; yes really, on a crowded tube! It would come out that so many people had loved ones affected but hadn't wanted to talk about it. So, playing the cancer card can be a positive to those around us in helping them to open up a bit - and getting people to understand that you don't have to look ill (or even be bald) to live with cancer Annie ... View more

My 'lymphoedema' started in my hand, but was more of a pain across the back of the hand - almost like someone had put their elbow into the back of it - accompanied by heaviness in my arm and obvious swelling. I noticed it after I had been using the computer (the mouse particularly). However, after 4 months of treatment, the jury is still out as to whether I do have the condition. I'm sure someone else is more reliable than me on this. Glad you're seeing your BCN soon, and if it is LDMA, it will be early stages and easily treatable Good luck and try not to worry Annie ... View more

I know this will help only a few people, but I emailed the Royal Marsden about my implant and got a short message back as follows: "The Royal Marsden has never used PIP implants in any of its surgeries". Annie ... View more

Yes, you can get Lymphoedema in your hand (there are gloves designed for this). But, don't jump to conclusions. Go and see your Breast Care Nurse as a first port of call, and she will give you some advice. Doctors don't usually know, and (in my area), you can't refer yourself to an NHS Lymphoedema specialist - and the waiting lists tend to be very long. You can pay/go private - and a consultation will cost about £80.00, but that may be worth it if you are really concerned. It could also be a trapped nerve - so get advice from someone who knows. OR, it could just be tired through use (esp. if it is your right hand on your bad side). In the short-term, try resting with it raised on a cushion and do your shoulder/arm exercises. Annie ... View more

I finished chemo on 2nd April, had my op in mid-May. My rads were planned for 5 weeks beginning July. However, my son's graduating ceremony was in Newcastle and I couldn't get there and back during the 5 weeks of rads, so my onc said it was perfectly safe to postpone the rads until afterwards (end of July). So, that was 10 weeks delay. It was explained to me that some people find the treatment so draining, that it is better for them to feel psychologically and physically fitter for the rads, so having a larger gap isn't a problem. Annie ... View more

Yes...the runny nose - I definitely have this, and the palpitations. I only have three to go and my ECGs have all been good, but if the flushes (Tamoxifen) and the palpitations come together at night, I have to resist getting in a panic and driving to hospital! Mind you, I did spend 7 days in hospital (incl Christmas day) as the Tamoxifen/chemo/portacath combination created a blood clot in my arm - so sometimes it is making a fuss if something doesn't seem right. So having added warfarin to my cocktail, I put my tiredness down to the blood clot, but maybe it is the Herceptin. I suppose, when all is said and done, ANY of these drugs are poisons, so not surprising if we get all these odd side effects. I also feel lucky, that after all the treatment at least many of us can 'return' to normal(ish), even if it may only be for 10 years as many on this site can't. So, I'm celebrating the future return of normality - but just hope it hurries up! Annie ... View more

Sorry you're not feeling well; it's difficult when the usual support system isn't there. Obviously, the best thing is to get professional advice as you will do anyway, but in the meantime you can help ease it a bit by 1. Keeping up your intake of fluids and 2. Doing gentle arm exercises (the ones you were given from hospital) every 4 hours (eg: shoulder shrugs x 5, pulling your shoulders back and forward x 5, gently raising your arms from your side x 5), this will help the fluid to circulate. It isn't possible to cure an infection if it is that, but getting things moving can help a bit. I've just come out of hospital with an infection, and this is what I was advised to do whilst I was there. At least it makes you feel you are doing something to help yourself. Also, it is very early days and it is perfectly normal to feel better, then to feel worse again, so be kind to yourself Hope this helps a bit Annie ... View more

Me too. Mx in 2009, no chemo. Recurrence (or bit left behind, or new primary?) in reconstruction in June 2010, which GP kept saying couldn't be cancer - so didn't get it diagnosed until Oct 2010. I was told I would need to have the reconstruction removed. Had 6 chemo sessions first which shrank the cancer sufficiently (20mm down to not visible to the eye), so although I'd prepared myself for the removal of the reconstruction, ended up with just a lumpectomy. 35rads and Herceptin (18 - nearly done) and Tamoxifen for next 5 years. I feel and know I am very lucky not to have lost the reconstruction So glad that yours hasn't spread, Twinky, and sorry that anyone of us have had to go through this. Annie ... View more

Can't contribute to the question about cassein-free, but completely agree with ChoccieMuffin that the media should take more responsibility. It is a shame that for important news like this, they don't. So maybe as we haven't found a way to make them more responsible (because twisting words/headlines sells papers), we just need to be more circumspect when we read the articles. Annie ... View more

Thanks Margaret. Yours sounds very scary; anything near the brain would terrify me, but I'm glad to hear you have taken control. I agree that more notice should be taken, and I wonder how often these clots are reported to the manufacturers of these hormone treatments, so that they really have a proper view of the extent of them. Good luck in the future - and don't go riding bikes with one eye! Think I should be discharged today. Happy 2012 Annie ... View more

..but 60% aren't caused by lifestyle, so why do we think anyone is pointing the finger at us? Isn't it good for people to be looking at what MAY cause cancer, to enable us to make a choice about whether we believe it or not? If someone discovered that eating peanut butter sandwiches (which I love) had a high risk of causing cancer, then I'd like to know to help me make a choice. There have been articles about living near to electricity sub-stations causing cancer; it may be true, or it may not be, but we can choose to read the proper research (not the media highlights) and make our decision. It must be stressful for anyone suffering from ill-informed finger-pointing related to their cancer, and if this article makes that worse, then that is terrible. But I think that the alternative (not publishing the research) isn't an acceptable solution Anyway, it's nearly Christmas and just 'cos I've got nothing else to do (as am sitting in my hospital bed on an almost deserted ward), doesn't mean I should forget about what's going on in most people's lives - so happy Christmas everyone. Annie ... View more

Thanks Geewhiz and belinda. The clot is from my elbow, under my arm, across my neck and wrapped around the portacath in my chest. I've been told that mine is probably due to tamoxifen (clotting is a risk), a portacath (foreign body in the vein), cancer (blood is more viscous), chemo (same thing). Unfortunately, the symptoms are so often like something else that mine went undiscovered for about 3 months. I'd been wearing a compression sleeve and glove which won't have helped. The two lymphoedema nurses I saw also thought it was lymphoedema. My GP treated me with antibiotics once and the breast consultant gave me antibiotics a second time. I've now been taken off Tamoxifen and been treated with 48 hrs of heparin drip, daily tinzaparin injections and warfarin for the foreseeable future. I'll be allowed home on Tuesday, which will have been 7 days in hospital. I feel I should have known about blood clots, but I suppose there is so much info/learning about cancer, that all the other extra things that might go wrong are often only encountered when we meet them; its not possible to give warning about everything. Anyway, thanks again geewhiz and belinda for sharing your experiences, I hope Christmas will be great for you Annie ... View more