Breast Cancer Now Forum

For Jacqnotyetinthebox - Don't know about everyone being entitled to a district nurse, I suspect it depends on which health trust you're with. I'm in London North West Hospitals Trust and it wasn't called District Nurse, but HART (Health care and Rehabilitation Team) I loathe hospitals and I'd have gone nuts spending any longer in than I had to - but I have no kids and a supportive partner, so I had the luxury of choice. Lyn ... View more

I went home the same day with a drain in, and yes, I did go out with it. Tucked into a shoulder bag under my coat so there was support for it. I wasn't being particularly tough and gung-ho, I was just going stir crazy and needed a walk. The nurse came round each day, and was really good about coming in first thing in the morning so that my partner could go off to work afterwards - he wanted to be in on everything that was going on. Mine did in fact come adrift (the tubing joint separated after five days, I just got a bit sloppy about keeping it tucked well away and got it caught and pulled apart) so I had the drain pulled earlier than it should, while I was still draining. Not good as I then got an infection. So ideally, keep all your tubing tucked inside your shirt! All the best for the 16th, hope all goes smoothly, Lyn ... View more

I think the best I can do for my survivors is make sure they know that the funeral is for them, not for me, and if they don't want one, it's up to them. I've suggested the bodily bits can go to research, but if the labs don't want me, they're free to choose cremation or burial, whichever they want, and a service or not, whatever they want. As I've said to my partner - I won't be there, and I'm not coming back to review the performance. There's several bits of music where I've said "I'll have that at my funeral" - but fortunately he knows I'm joking, because now the list would take about five days non-stop. And yes - I really like the idea of the "A" lapel pin. Lyn ... View more

Thanks, Jane, for bringing up the statistics. I'm afraid that when I get the comments about how treatable my breast cancer is "this time round" because treatment is so good now - I just remind people bluntly that more than 30 women die every day in the UK of bc. At my first diagnosis in 1991, it was just over one every half hour, now it's just over one an hour. Better, but still not good enough. Lyn ... View more

For what it's worth, I understand that by the time the end is approaching, most people will have good quality waterproof undersheeting of the un-sweaty kind. So mattresses survive, bedding doesn't. When my father was ill at home, he had these, and my stepmother was washing about four or more changes of bedding a day. She was too exhausted to move by the time my father picked up an acute viral infection and had to be moved to hospital for the last few days, which is where he died. Just the physical work involved is what inclines me to a hospice end if I should end up with mets - but not a hospital. As several of you have said - the final couple of days doesn't worry me so much, from experience I'm fairly confident that if necessary there's usually sufficient morphine to keep you reasonably comfortable. It's the wasteland after losing the capacity to look after myself to a reasonable level and needing detailed care that scares me so witless that I just can't think rationally about it. Lyn Lyn ... View more

For what it's worth, the incessant nag in the brain does start to drift away after a while - for those of us who fall on the good side of the statistics, and finish treatment and don't experience a recurrence or mets. I was diagnosed first time round in 1991, and it took several years before it wasn't one of the things that I factored into almost every decision I made - and I don't have kids. I did have a pretty active career and that changed considerably. Gradually, I found that although I was helping with a cancer information centre and other bc related things, it wasn't as personal as it had been, and even more gradually, I moved away from having an involvement with cancer - my experiences seemed too long ago to be helpful to anyone having a diagnosis now. I was narked to say the least when I found myself with a second primary in December last year - back into the tumble drier. This time round, I had to have a mastectomy, so yes, once again, I do think about it every day - partly the puddock (prosthesis to the non-Scots) but because I'm back in the uncertain bit of the statistics (except that now I know I seem to be good at doing bc). I opted out of chemo, so I haven't had to deal with the aftermath of that, and I just hang on to having got through it last time with a judicious mixture of information seeking, selective denial and red wine. My personal coping method, not recommended to all and sundry. Lyn ... View more

It seems different health authorities (or possibly surgeries?) have different policies about how much they'll prescribe at a time. My doc gives me 3 months thyroxine and arimidex. A friend in Reading with glaucoma can only get 1 month supply at a time - and her glaucoma isn't going to go away suddenly. I did read somewhere that it's to stop the cost of long runs of medications that get thrown away when people don't complete the course - but that sounds stupidly rigid for these type of drugs. And sadly my doc hasn't yet got to email or online repeat prescriptions - roll on! Lyn ... View more

As I understand it, they can't be used for other patients, can be used for research purposes. After all, if you're on immunosuppressive drugs, as transplant patients will be, an organ that potentially has micromets isn't your best bet... I used to donate blood and plasma, and they won't have that either - though I'm told that's for my protection, so as not to stress the system. Lyn ... View more

I have a lot of reservations about "raising awareness" - I'm not convinced that some of the people taking part in the fun runs and "wear something pink" days are actually "aware" what breast cancer means - it's a bit of fun for them and demonstrates that they are caring and socially aware of "others who are suffering". And the "awareness" often doesn't translate into anything substantive - buy a handbag and a pound from the price will go to cancer charity X. Well, no, why not just give the cost of the handbag straight to the charity? Oh, right, because actually we're looking for a feel-good way to do some spending. On the subject of moving on - no, some, sadly don't get the option. But I know people from my first time round - 1991 - who are NED but are still, first and foremost, "cancer patients". And I have a problem with that too - 17 years down the line, I'm not sure you still have the right to use the cancer card all the time. Interestingly, for years since my first diagnosis, in October I've had pink bits and bobs given to me or presented for my approval - from the kindest motives. But this year - since I've been diagnosed with a second primary - not a peep. No-one in the family or friends offered me pink ribbons or told me they were wearing pink to work or how much they were doing. So I'm not so sure the "aware" outsider really wants to be up close and personal with someone who just might have a breast cancer "problem". Lyn ... View more

Good to see you posting and that all went well, bar a few idiots. Fingers and toes crossed for the voice, good that you already have a sense that there's going to be improvment. Lyn ... View more

From the Stanford University notes on lobular, there's a brief note that says - ------------- Tubulolobular Carcinoma of the Breast Definition * Infiltrating carcinoma exhibiting both ductal and lobular differentiation Alternate/Historical Names * Tubulo-lobular carcinoma Diagnostic Criteria * Must have classic grade I cytologic features * Intimately mixed tubular and linear architecture o Overall infiltrative pattern is that of lobular carcinoma o Considered by some to be a variant of lobular carcinoma * E-cadherin positive ------------ Don't know what the E-cadherin does! But this sounds like it's a mixture of cell types Lyn ... View more

Karen, Just to address one part of your post - I hope that anyone who thought their oncologist was saying that developing lobular in the other breast was a case of "when not if" was misunderstanding what the oncologist said. There is statistically a higher chance of a second primary in the other breast with this type of cancer (can't remember the figures) but in no way a given that it will happen. I've also been thinking of mx on the other side - more to even things up than for preventative reasons, the lobular was the second primary in the same breast, so I've kind of gone off them as a part of my body, and I wouldn't be that sad to lose it. Also, of course, because my lobular didn't show up on mammo or ultrasound. So I'm not that impressed at the thought of follow-ups using mammo and u/s - I trust my own fingers more. But I'm also not that keen on yet more surgery! Lyn ... View more

Jane, I'll add to all the hopes for a good outcome on Wednesday, I can barely imagine the frustration of not being able to butt in on a discussion and be heard. Keyboards are good but don't compensate. Good idea to suggest that BCC keep a log of unusual cases and symptoms - I had a friend who had Horner's back in my first forays into bc but luckily for her, no mets to vocal chords so the cancer didn't affect her voice (or her capacity to argue with all and sundry!) - and I hadn't heard of anyone since. Not sure whether to wish you a raucously enjoyable weekend or a quietly enjoyable weekend... but hope it's good despite the looming procedure. Lyn ... View more

No, definitely neither alone nor talking rubbish. I work at home now, so I don't need to look "normal" for anyone, so I wear one of those M&S support vest things, and I just don't wear a prosthesis unless I'm going out. Provided I remember to put it in, that is! (I didn't have a bilateral, and I'm about a 38E, so I'm definitely lopsided). The first time I realised I'd done it, I seriously considered going home and putting it in, and then thought, why should I? So I swallowed hard and carried on. I don't deliberately go out lopsided, but I've stopped agonising if I do - I don't think I'd manage to go as far as a friend back in the activist mid-90s who never wore a prosthesis, and said people just need to get used to what bc leaves you with (or without). Another friend who'd had a bilateral never even bothered to try prostheses - she had some great waistcoats for posh evenings, but otherwise, just wore a normal, slightly loose shirt. Breastfree is a great site and well worth a visit. Lyn ... View more

When I had my first tumour back in 1991, it was practically on my midline, only just into the right breast. I had a lumpectomy and the usual underarm node dissection, but I also had the inframammary nodes sampled. I only found that out because it hurt like anything when I laughed, and the surgeon said "That would be from the rib spreader, it takes some time to settle down". I was a bit gobsmacked, and I haven't ever heard of anyone else since that's had that procedure. When I had a second primary last year, I told the surgeon going through my notes I'd had this. He seemed a bit sceptical, and checked, and he then said I'd had a remarkably thorough surgeon. Which he was - I used to challenge other bc patients to spot my underarm scar, and most couldn't, he hid it beautifully. Wish my mastectomy scar was going to be as tidy. Lyn ... View more

Jane, thanks for your honesty, which is difficult to read, and it's difficult to make anything that feels like an adequate response. But your writing (here and your web page) opens up the possibility for people to talk honestly, which is more bearable than some of the " there, there, it will all be fine", and, what I found more difficult, a woman I knew a long time ago who said that she did not regret having breast cancer as she had found so much good in people. At that time, she had secondaries and was running out of treatment options. I found it impossible to have an honest discussion with her, either about my feelings, which seemed trivial in comparison, or about hers, and I hated myself for ending up talking in platitudes. I had much more in common with another friend who said she felt a curious relief when her recurrence was diagnosed - "thank god at last the other shoe has dropped", she said. You know how much you mean to many of us on this and other sites, Lyn ... View more

Lynni, glad you got a cancellation so you won't have to wait so long, keep us posted. This bloody disease.... it makes me want to kick things. Lyn ... View more

Thanks, Ann. To clarify - it's not something I'm looking at buying, I want to know what it is because I have a feeling I'm going to be asked about it as the local breast cancer person. Lyn ... View more

Hi Jane, I suspect they're not technically a con - in that they may help, especially for women who have a problem with feeling their own breasts. But I think it's probably one of those gadgets that get flogged on the back of something like October, or a celebrity with bc, and that never get taken out of the drawer. Exactly as you say, the real key is actually just doing it, and most women don't. One of the reasons I want to check if anyone's actually used them is that the owner of the gym's also asked if I'd be available one day to answer questions about breast cancer - it's a small women's gym. I've said yes, though I've got reservations about that as well - it may not be quite the "it's been a transforming experience" that she's expecting. Lyn ... View more