Breast Cancer Now Forum

I'm taking Exemestane an Everolimus and everything sweet tastes disgusting. Chocolate is the worst! It tastes bitter. Everying sweet tastes like they missed the sugar out and normally I have such a sweet tooth. It's awful and going to ruin my holiday, when the food will be fab. Anyone else found this? Savoury and salty things are ok ish. x ... View more

I have recently been diagnosed with SecondaryBreast cancer to my Vertebrae. I alsso showed a mass near my heart/breast area which I have been told is a Thymoma. They think I've probably had it for years and they are very rarely malignant. It is something to do with your immune system. Obviously I'm no doctor but hope that helps xx ... View more

I had Chemo in October 2009, Single Mastectomy and Radio and then a second elected Mastectomy a year ago. Have been on Tamoxifen for 2 years and now on Leterazole for a year and a quarter. I have recently started having pains round my back and it feels muscular but haven't strained anything, if that makes sense. Particularly bad in the night when I move and hurts when I bend sideways. Had water infections so just had a Cystoscopy but that is all clear. Had a Bone Scan yesterday and am really worried. Also due to have an Ultrasound on my kidneys.Does any of this sound familiar? Really worried x ... View more

I am also on Leterazole. I was first on Tamoxifen for 2 years and have been on Leterazole for just over a year. I find it really difficult to get rid of the post treatment bulges and have to eat almost nothing for any to go. I can put it on so easily and it doesn't shift. ... View more

I am also only allowed 2 every six months and it isn't enough, especially in this hot weather. I have a Sigvaris sleeve with a non-slip top and this top stretches as they get worn. You can't help but stretch it as you take it off. The people making the rules should try wearing them! At least we are all mostly in the same boat xx ... View more

Thanks weveryone, so sorry you are suffering too but it does help to know it's not just me and haven't jumped from 58 to 88! Recently I have had a painful back, again in the night. It feels like I have strained every muscle when I try to turn over in bed and yet am fine during the day. All I seem to do is moan about something hurting, it drives me crazy. I've been on Tamoxifen for two years and Leterazole for just over 1 year so I've a long way to go yet. Anyway hope you all manage to deal with it all, it's so annoying! ... View more

What a great idea to start the website. I had a single Mastectomy in 2009 and a second elected Mastectomy in 2012. I had wanted both doing initially but wasn't allowed, being told I'd change my mind in 2 years! Needless to say I didn't and it was the best thing I have ever done. I am really happy being Breast-free and wear small Prostheses most of the time but often go "flat". I was quite big before and now am a 32A which suits my 4ft.11ins. frame much better and the worry has gone (well almost). I was an E cup before. On holiday it was a breeze as I wore a ruched bikini with no Prostheses and it was so comfortable. I can now also wear a strappy leotard for ballet which all my life has been a no no. The main point is I'm not looking for a lump in my other breast every day! It's a hard decision for some but for me it was a no-brainer. Good luck to everyone and trust your gut feeling xx Just looked at your website breastfree.org and it's brilliant and so helpful! x ... View more

What a great idea to start the website. I had a single Mastectomy in 2009 and a second elected Mastectomy in 2012. I had wanted both doing initially but wasn't allowed, being told I'd change my mind in 2 years! Needless to say I didn't and it was the best thing I have ever done. I am really happy being Breast-free and wear small Prostheses most of the time but often go "flat". I was quite big before and now am a 32A which suits my 4ft.11ins. frame much better and the worry has gone (well almost). I was an E cup before. On holiday it was a breeze as I wore a ruched bikini with no Prostheses and it was so comfortable. I can now also wear a strappy leotard for ballet which all my life has been a no no. The main point is I'm not looking for a lump in my other breast every day! It's a hard decision for some but for me it was a no-brainer. Good luck to everyone and trust your gut feeling xx ... View more

Brilliant article Fizbix! Really clear and easy to understand. i have Lymphoedema in my left arm and had it before any treatment started as the Cancer was already in the Lymph Nodes. The whole thing is a total pain but you learn to live with it. I have just been away for the first time since diagnosis, wore a new sleeve on the flight and my arm only swelled a little in the heat and is much better now. Good luck with it all everyone x ... View more

Just thinking about you. Sorry I don't have much to say that helps. I have Lymphoedema in my left arm after total clearance and was worried it would happen in my other arm when I had an elected 2nd. Mastectomy but as there was no Lymph node involvement all seems ok so far. Hope you get to the bottom of why it has happened. It's a horrible thing and a real pain wearing the compression garments so winge and whine away. Hope it gets sorted for you x ... View more

Sorry I can't help with any more advice, just having a moan! I have just returned from a holiday abroad and when I was sunbathing I didn't wear any prostheses as I have had a double Mastectomy however when I was out in the heat with them on, it felt like I had 2 hot water bottles on my chest! I couldn't really work out any better way of doing it. I'll look forward to any suggestions x ... View more

Thanks everyone for your advice. I returned home yesterday from a holiday to Italy and France and my arm behaved quite well. It has got a little bigger as my sleeve is more difficult to put on but the hot clammy weather here doesn't help. I kept my sleeve on all day and evening but didn't sleep in it and had a new one to wear on the flights. All in all not as bad as expected though now I have a very fetching white arm with a brown shoulder and hand! I also took Antihistamine tablets and cream and also a supply of Antibiotics but thankfully didn't need them. I also religiously put Insect repellent spray on my hand and shoulder that were exposed. Thanks again and happy holidaying to everyone xxx ... View more

Couldn't decide which post to reply too as they are all so true! I had a Single MX 3 years ago and then Chemo and Rads and then an elected MX in October. Now have Lymphoedema and am on Leterazole. According to everyone I look"marvellous!" and am now"fine" now I'm "over it"!! hmmm ... View more

Thanks Jen, sounds like a good tip, I'll try it 🙂 ... View more

Many thanks Hilly1, Clare83 and Lynnq, I'm sorry you are all suffering too but it does feel a little better that It's not just me and there's a reason. I also was on Tamoxifen for 2 years and have been on Leterazole almost a year. I'm 58 but like you feel 88! I did have acupuncture for hot flushes and insomnia soon after I'd finished treatment which was 3 years ago but didn't think about having it for this. Thanks for reminding me! I'm still having awful hot flushes so it may help that too. Thanks everyone xx ... View more

I use Nioxin shampoo. I get it from my hairdresser and it's designed for thinning hair. hope that helps xx ... View more