Breast Cancer Now Forum

Hate to see such distress, but really can empathise.  Got the BC diagnosis 3 years ago, at 54 but just remarried 3 years at that stage so sex was still quite a priority.  I was given AI's so side effects of those really messed up the really quite nice sex life.  I have tried every moisturiser, lubricant, Yes, Replens, whatever, with no relief.  I did find one thing that helped a little bit on the US breascancer.org site, cocoa butter, but that was minimal.  I discussed with onc who agreed that quality of life is important, so now on very low dose vagifem, occasionally.  Still not anywhere near what it was before, but 'better'.  ... View more

Butterfly, know what you mean. My wee mother is 89 and way down the dementia road. Went in to see her today in the care home and she's lying happy as Larry with her legs over the cot sides, clapping away to Daniel O'Donnel. Chocolate and banana smoothie made her happy which made me happy. S x ... View more

So so so so sorry to hear about SCACO. She was a 'star' on this site when I started and so funny and positive. I loved her Jordan photo, her gutsy attitude made me think this isn't so bad after all. But there you go, it really is. I hoped to come back from holiday to hear that even if she had secondaries, she'd be one of those who'd probably live with them for years and years and then some. I loved the Woods thread even though I could never keep up with it. Really hard to take in, and my thoughts are with her family. ... View more

Hi Wandy, Say hi to SCACO from me too. I just hope she is doing OK. Sheil ... View more

Thanks for that MG. Good to hear about the breaking up of the scar tissue. I'll try to remember that for when I go back to PS in a few months. S X ... View more

Hope you don't mind a question from another interested party. I had lumpectomies on both sides and wasn't happy with the dents so saw a PS a month ago and discussed the fat transfer option. Problem with me is there is still a lot of hard scar tissue, especially on one side which is a hard lump - have had it looked at 3 times with US and one biopsy, they say OK but the radiotherapy means it may stay that way. PS and I agreed to wait until 2nd year checks, which are about 6 months away, and revisit. Did any of you who have had it have any scar tissue remaining? What was the time between WLE surgery and the fat transfer? He did seem a bit cautious about doing anything, hinted at how they didn't really know what effect it might have on the BC, but cynic that I am felt that was just cos it was cosmetic and NHS and I look OK in clothes except for SNB scars on both sides which are a bit lower than armpits. Is there any good websites on the topic? I'm interested in what you are saying about newer techniques too. Many thanks Sheila ... View more

Hi SCACO Am absolutely gutted to hear this. I rarely visit the site now, but you were always on and a great inspiration when I started about 18 months ago, your posts always gave me a laugh, I even thought about your post about picking blackberries with your son this morning when I picked some myself. This must have knocked you sideways. Just shxte. Hope you're holding up. Sheil X ... View more

Hi Lizdeb Going back to your early question about the MRI not tying up with post-op findings. I had an MRI after they found 2 areas of ILC, one each side. The MRI located both of these, plus another 'highly suspicious' area. I then found out that to be certain that this 3rd spot was cancer I would have to have an MRI-guided biopsy, only done at that time by one health board in Scotland, and I think, only one person was qualified to do this. So off to Aberdeen I trekked, and result was that this 3rd spot was not malignant. I assume MRI-guided biopsies are still not widely available, and me insisting on this did delay the start of my treatment - my surgery was 3 months after diagnosis. I was recommended a double mastectomy but as my nodes were clear I decided I'd keep them for a bit. I am guessing that your mastectomy decision was based on the findings of the MRI 'probably' being cancer, as my recommendations were. MRI's have high rates of false-positives, but only way to be sure is to go for the biospy. They also don't show up everything either as a small 3mm additional cancer was found in the margin of one of the other areas. This whole thing has made me realise there's an awful lot of uncertainty in this game, and a lot of decisions made on basis of tests which are never 100% reliable. Good luck with it all. Sheila ... View more

Know how you feel Cathy. I have a very distinct hard lump which I've been advised 3 times is scar tissue. I've had ultrasound 3 times since January, aspirated once and got a little bit of fluid, had a biopsy, then another ultrasound. They say I'm most probably stuck with it as radiation can prevent the scar tissue from fading. It's tough though, as I never felt any lumps prior to BC, and now feel it every day, one and a half years later. If it is cysts though they should be able to aspirate, no? Do not feel that you are wasting anyone's time - its their job. And your peace of mind is worth an hour's consultant's salary in my opinion. We need to feel more like clients in this country, the NHS may be free at point of delivery but we do pay for it. S X ... View more

Hi Hobo Not me but a friend at work had about 18 nodes affected, had adjuvant chemo then mastectomy and arimadex, and is absoultely fine more than 5 years on, probably 6 by now as she was 5 when I was diagnosed. She was my poster girl when I got this, and I think if she can do this then so can I. X ... View more

Hi Alloway I had treatment at Crosshouse, but had DEXA scan - if that's the kind you mean - done at Ayrshire Central, and it was a year ago so can't really remember how long. The DEXA is just to detect bone thinning, but I think there's another kind to detect secondaries. If its the DEXA then I got my results at my GP. Lynn I'm on the facebook group, I think you have to get somebody who is already a friend to invite you, so send a note to Lulu and she can add you in. Alloway too, do come join us on Facebook tt, as although we're called Glasgow/Ayrshire I've been the only Ayrshire one at the lunches so far, although I think there's one or two others joined the gang recently. Send me a PM if you're on FB with details. S X ... View more

Hi from me, another ILC. I was diagnosed late 2010 with bilateral ILC, biggest on left was estimated around 2cm. Was recommended a bilateral Mx with immediate recon, but then had SNB which came back clear, so I decided I'd hang on to them for a while yet. Even after the Bilateral WLEs which found another 3mm one within the margin of the biggest which was 2.2cm. Contrary to what most people would do I know, but I focused on the most recent research which mostly concludes that ILC has no worse, and can have better outcome than IDC as it responds well to hormone therapy. And most studies say that prognosis is based on biggest tumour, not total tumour load. Also liked Susan Love's position that around 40% of removed breasts will have multifocal spots somewhere and the radiotherapy is good at cleaning these up, and I had rads on both sides. I didn't have chemo as this wasn't recommended - which I found a bit odd when you think. But to give me a bit more peace of mind I also had the Oncotype DX test done, expensive, but I really wanted to be reassured that my situation wasn't as serious as they'd have me believe. Results came back low risk of recurrence on both sides, so I do sleep at night. Susan Love also says lobular can be result of 'complicated hormonal history' - I had endometriosis, on pill for years, had unsuccessful fertility treatment, then went on HRT at the first sign of a hot flush, so I like to think its all those hormones that did it, and now they're being sucked out of me at a great rate by letrozole, I should be fine. What an optimist I am! Maybe a bit of denial, but I feel OK with my decision. I do hope you all get to the peace of mind point. S X ... View more

Anything to add? Only that its gone from bad to worse for me. I've got Replens on repeat prescription, been using it for about 3/4 months and hasn't made the damnest bit of difference. Still very sore. I've got a drawer full of everything that's been suggested except for the vit E (nothing's worked). So bought the vit E caps today, ever the optimist! I really resent losing this part of my life, and although OH is lovely and considerate and caring, I just know that its not good. I'm on letrozole and am wondering if that is particularly bad for this side effect. Would anastrozole be any different? I am planning on making an appointment if the vit E doesn't help, not sure whether it should be with gynea or oncologist?? S X ... View more

Haven't been on the BC site for a while - does this mean I'm moving forward?? But just had to tell somebody I've just booked to go to Sorrento last week in May. What happened to my Cornwall plans? Decided I wanted somewhere where nice weather was more likely, and I got cheap flights with my Tesco airmiles. So where you all planning....? Or are lots of you away for Easter already? S x ... View more

Might be worth finding out if your hospital has a newer model. The newer versions are not as long and narrow, and much easier if you're claustrophobic. Not so much of a tunnel feeling. Noise is still the same though. S ... View more

I recently finished Daughters in Law too. Quite liked it but my favourite of hers is still Other People's Children. Have also recently finished We Need to Talk about Kevin, which I was a bit reluctant to start as somebody said it was a bit dark, which it certainly was but I do like the way Lionel Shriver writes. Makes me glad I've got a Kindle as I do need to look up meaning of about 2 words every page. Currently reading Me Before You, Jojo Moyes, a bit young and wouldn't rave about it, but I will finish it which I don't always. Must try The Help, its been on my bookshelf for a while. I do like to see what others are reading and think. S X ... View more

I had 3 months in between diagnosis and surgery, due to being bilateral and lobular. Because of this I was sent for an MRI which spotted an additional suspicious area and I wanted it biopsied, which could only be done in another health board. Turned out not to be BC. I also had an SNB in between. I also did a lot of reading and found out there is a difference between a 'guideline' (e.g. NICE, SIGN) and a 'target' which is usually set by the government and imposed on health boards. Health boards strive to meet targets more than they would a guideline. I found out this was the case in Scotland, there is a target for the length of time between diagnosis and first treatment, but only a guideline for time between first treatment and any subsequent treatment, in my case radiotherapy. It is very concerning when you have such a long wait, wondering what's going on in the meantime. I did write to the doctors involved and was moved up 2 weeks, but the wait was still significant for both surgery and rads. I think there will usually be a longer wait for immediate reconstruction as that involves more planning. Best of luck. S X S X ... View more

Oh woe, where have I gone wrong? I need to add the word 'chicken' to get mine to do anything. This is a fab video, had seen it before but was still great to watch. Especially as I've just sat through Pedigree Dogs Exposed - jeez, what are these people doing? S X ... View more

Other than the horse it sounds like my kind of holiday. Can't forget my only lesson, made the mistake of going round the back end at the wrong time! Sounds fab. S X ... View more