Breast Cancer Now Forum

Not sure if this will go through the moderator - from the Thinking Allowed site on Radio 4 20 February - http://www.bbc.co.uk/radio4/factual/thinkingallowed/thinkingallowed_20080220.shtml The programme quote is - "Researcher Sarah Moore, in her recently published book Ribbon Culture: Charity, Compassion, and Public Awareness, says that popular Ribbon Culture came about initially as a means of going against the grain, by focussing on controversial topics. But although charities claim that ribbons spread awareness, she thinks that it has become a fashion item, making giving to charity easy without the need to really consider the cause it ‘supports’." Brain like a pack rat... Lyn ... View more

Don't know about evaluations of the Pink campaign, but I remember hearing a piece on the radio about a social sciences researcher who'd investigated how much people who wore various pins actually knew about the condition they were "supporting". Not much, was the conclusion, most people wearing pink ribbons had no idea how many women a year were diagnosed with BC. Her verdict seemed to be that BC and AIDS pins were mostly a fashion statement - a public "see how much I care about those poor people". Vague feeling it was on the Laurie Taylor programme, I shall have a poke about if only to satisfy my own curiosity. Lyn ... View more

Molly, I don't want to be confrontational, but I think if your surgeon's heart sinks, it's time she realised part of her job is training her patients in just how individual bc is and why something may not apply - not just rubbishing forums. And you're lucky to have time to have that sort of conversation with your surgeon - trying to get hold of a BCN at all at my hospital is a big deal. The surgeon I won't see again till next March. My first time round, there was so little in the way of information and support - the 24 hour support available on forums, as well as the breadth of experience, is invaluable. I wish I'd had that for the night heebies at 3am back then. BUT - it is also every patient's responsibility to understand that asking "what happened in your case" on a forum does not mean that it applies to you personally, it's only someone else's experience. (Sorry, I've had a really rubbish morning and I'm crabby!) Lyn ... View more

I think bilateral at the same time is fairly uncommon, but I was told that any bc does put you at higher than average risk of a contralateral bc (ie other breast). Tamoxifen is one of the ways to reduce the chance of contralateral bc. A second bc is unfortunately quite possible - I've been looking for good stats but haven't found any as I was diagnosed with a second (different type) of bc in the same breast as my original one - that one was ductal, in 1991, and I had lumpectomy. This time I have a lobular cancer, and had a mastectomy. And I tell you, the remaining breast better watch its #### step or it's gone too! Lyn ... View more

FWIW, there is currently an "ask the experts" specifically on triple negative on the American breastcancer.org site Lyn ... View more

I guess I was "lucky" as the lobular cancer was my second breast cancer in the same breast, so I had an MRI of the other breast without asking, to check if I needed a double mastectomy - as I'd already had lumpectomy and radiotherapy another lumpectomy wasn't an option. (First time round was an IDC) On the other hand, it did take a bit of pushing to get diagnosed in the first place - I noticed a thick area last March but nothing showed on the routine mammo so I was happy enough. Then I realised it was niggling at my mind - with my history, my GP was OK to refer me at once, and although still nothing turned up on the mammo or ultrasound, and I was being told it was just scarring from the lumpectomy, the surgeon ordered 3 core biopsies and the rest is history. What concerns me is the emphasis on "finding a lump" - I know it's only around 10% of cases are lobular, but a thick area just wasn't on my screen as a sign to get checked right away. Not sure about the need for another category, though - once past diagnosis, the treatment isn't all that different, so which area do you look in for info about chemo, arimidex etc? If anything needs its own category, it might be inflammatory, which does have a very different profile. I find having "After treatment has finished" and "living with breast cancer" confusing already. And perhaps the new site will have an even better search facility? I used that to find out as much as possible about lobular (and the US site!) Lyn ... View more

I think it's difficult to get a balanced view from posts, as often the supporters of freedom of choice in dying are more vocal - or possibly less inhibited - in expressing their opinion. At least that's the impression I get. Personally, I'm a pro-choice, like many of us who have posted, and have been for a long time. My opinion's only been strengthened by a recent short stay in hospital after I broke both arms and could do absolutely nothing for myself. Having to be fed spoon by spoon, and ask someone to wipe my behind is not anything I want to live with. My partner and I have discussed at some length what's an acceptable quality of life, fully aware that it could probably change hugely if, for instance, I had full mental faculties and no pain, but still required someone else to carry out all my personal care on a permanent basis. I can't accept, though I can understand, the reasoning behind the ruling that if you're fit enough to get to Switzerland to die, you can - but that's quite probably earlier than you would choose to go if you were allowed to ask for help to get there. A book that I found interesting was by a medic who worked in a hospital in Holland where assisted dying was available - it's called "Dancing with Mister D" by Bert Keiser and talks openly about his approach to patients who had asked for his help in ending their lives. Lyn ... View more

Also, you could find which bit of the treatment your Mum is particularly scared of. It's always possible for her to agree to only part of the treatment - for instance, if it's chemo she's worried about, she may be willing to consider just surgery to remove the lump, and hormone therapy. If it's radiotherapy, skip that bit. As someone's said, leaving it completely untreated really isn't the best option. The surgery is doable and she can stop hormone therapy if she doesn't like the side effects. I had surgery, and I'm on hormone therapy, but I opted out of doing chemo because I didn't feel the extra benefit was worth it FOR ME - as everyone else has said, it's very personal. The oncologist ought to respect a request to do one bit of the treatment but not another, though they will definitely want to discuss what that would mean for the success of treatment with your mum. If you could be there too, that could help her, because she's then going to have someone to talk it through with afterwards. Keep us posted on how you both are, Lyn ... View more

I've been taking it since around February and I didn't have much in the way of side effects at first - a few hot flushes, usually just after going to bed. Recently, though, I've started to notice stiff hands and feet in the morning, and I'm guessing that's the Arimidex kicking in. I thought I'd got away with no side effects. One weird effect I'm getting - I had a previous bc back in 1991 and had radiotherapy. This time had to have a mastectomy same side, and now when I get hot, the whole radiated area lights up like sunburn. Uncomfortable rather than painful, and not sure if it's the Arimidex, but I didn't feel anything from that area when I had normal menopause hot flushes. Must ask the BCN about it! ... View more

Gotcha! yes, thank you, lots of help - I'm going to look as if I'm practicing to be Queen! Off to do my exercises while listening to Melvyn Bragg on the radio! ... View more

Hi FizBix, thanks for all this info, really helpful. Two questions - in 3, what is waving like a pantomime??? I obviously had a deprived childhood as I've never been to one! In 7, is the big wheel down to the ground and up to the ceiling or as if you're drawing a circle on the ceiling (if you follow me?) You can tell I've been having a go - I must be doing it much too slowly as I'm not sure I could get through that lot twice in 30 minutes. Lyn ... View more

FWIW, I was told that the heavy lifting/carrying was more to prevent you carrying stuff like heavy shopping bags (or the coal bucket!) - you tend to carry stuff like that on a narrow strap across your fingers/palm, or on a shoulder strap, and the pressure on such a narrow area isn't good. Lyn ... View more

Well, works for me, cost me 90p, and doesn't need squeezing as you get out of the water. Having just spent about £100 on a swimsuit and two bras I was feeling mean about spending another £30 on a swim prosthesis till I'd tried this. Lyn ... View more

It's not easy to get anyone to give you a definitive answer on this - like you, I had SNB before my mastectomy at the beginning of this year, and sampled lymph nodes but no clearance. (However, I did have a previous cancer in the same breast in 1991, so I'd already had level one sampling and also rads). When I broke that arm this April, I started getting very exercised about the risk of lymphoedema! I had been doing the exercises and gentle massage already, because my BCN had said everyone was definitely at risk. My onc, who I saw not that long after I'd had both my plasters off, said that there was a slight risk, but not high because I'd only had SNB and sampling. But he also said there was so little hard evidence on why some women did get it and others didn't that he couldn't say I wouldn't. I definitely have a puffier forearm and hand, but it's not clear if it's the wrist break or if I have developed some lymphoedema - I go back to the BCN when my movement with that arm's back to normal. So I'm carrying on taking care within normal limits - so I try and remember to use gloves if I garden, but usually don't, and I don't do hot tubs or saunas anyway. I'm not sure if that's any help! Lyn ... View more

Good thought, aroma - the LSN ones are a bit "medical" for everyday use (though maybe that does make them more spottable). Perhaps something like the information on one of those plaques you can get to put on dog collars with a beaded bracelet to pretty up the rest. I'll have to talk to some of my beading contacts! Lyn ... View more

Hi Tina, I started in February and haven't had any bad side effects so far that I can pin on to the Arimidex - I was nervous too, as I'd seen all the comments about side-effects but I think it's partly that if you're having a miserable time you need somewhere to sound off about it, but if they aren't that bad you don't post about it. I've wondered if I've been a little stiffer the past month or so, but it's difficult to separate out from the fact that I managed to break both my arms a couple of months ago so everything has been a bit weird as I haven't been as active as usual! But so far, touch wood - none of the bad joint pains I've been reading about, a few hot flushes - long may it last! Lyn ... View more

I'm afraid I'd say be careful for ever - I had radiotherapy back in 1991 and although I tan pretty easily the chest area has remained quite easily burned - I could feel it heating up when I was in the sun. Didn't have to keep completely covered but did tend to use a higher factor sun cream there and I did stay out of the midday sun. I've just had a second primary in the same breast so I had a mastectomy in January and I notice now the radiated skin area seems to have woken up again and gets slightly sunburnt feeling even when covered up if I'm sitting anywhere sunny. ... View more

I'm sorry you're having a tough time just now, Kate - I'm sure anyone on the forum would echo me when they say don't beat yourself up, and absolutely don't compare yourself with the celebs! They have advantages (and pressures) that most of us don't have - someone peeling grapes for them 24 hours if that's what they feel like on a specific day. They don't have to be the mainstay to manage kids and houses and shopping and the laundry and finding something that fits your changed body... They also have the publicity machine feeding possibly not entirely accurate stories to the papers, and the pressures of their image being their income, so they can't afford that image to be what they think the public can't cope with. A 17 hour day? Doing what? How often? How many days did she take to recover from it? A long time ago I read the biog of the TV fitness woman (Diana Moran?) who couldn't let anyone know she had breast cancer because that would have been the end of her career - I found that desperately sad. You can tell that public expectations about "strong, brave cancer patients" presses one of my buttons! Take care, Lyn ... View more

I was pointed to a recent article in the New York Times called "When thumbs up is no comfort" on the pressure on public figures to show a fighting stance all the time (I'm not sure if the URL is allowed but it's at http://tinyurl.com/44whpz ) - and the pressure this puts on the patient to be "strong" - equating to "don't trouble me by needing help". I loathed the concept on my first time round in 1991, when I was bombarded with the full Bernie Siegel stuff, and I haven't changed my mind. Lyn ... View more