That's very interesting, I've just started my second packet of generic anastrazole, after 3 1/2 years on Tamoxifen. I am 55, haven't had a period since the week after my first (of 7 months) chemo, in April 2008, so safe to assume I definitely am post-menopausal.
I did have acute back pain last summer, had a CT scan to exclude secondaries and it showed a bulging disc. The discomfort from this was much better by November but I have been taking Tramadol again this week. Since Christmas Eve I have been having hot flushes during the day, and severe hip/lower back pain which I had not connected with the anastrazole. I'll be interested to know what your GP says - good luck.
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Sorry if this is not an appropriate place to ask... I wonder how long it usually takes to get results of an MRI scan?
I had mx/recon/chemo/rads in 2008 and am on Tamoxifen. Have had severe lower back pain since mid-July, my GP prescribed Tramadol and suggested visiting a local osteopath. Three sessions with the osteopath didn't help, pain was increasing, so he asked the GP for further investigation. The GP arranged x-ray and bloods, both normal, and referred me for musculo-skeletal assessment. The specialist suggested an MRI scan and this was done two weeks ago. My surgery have sent me a photocopy of the letter the MSK specialist sent them - he tells them he has arranged an MRI scan to 'look for secondary deposits, in view of (my) history'.
I have been assuming a disc or nerve is causing the pain and had not considered the possibility of mets. Is it usual to wait two weeks after an MRI scan and still not hear anything?
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Interesting reading, thank you.
I had mx and immediate DIEP on 1 March 2008 (under BUPA) but no longer have private cover. My PS has agreed to continue seeing me as an NHS patient and I saw him in December to discuss nipple recon and 'tidying' the recon breast and abdo scar. The breast is lumpy and dented, and a lot wider than the other one, and rads have left the skin darker and thicker.
He proposes removing the lumpy areas, which he thinks are necrotic fatty or scar tissue, filling the dents, and removing the dog ends from the abdo scar. Suggests leaving nipple recon for another 6-12 months. I don't know what's happening about liposuction, can he fill dents any other way?
I've been booked in as a day patient next Monday and had the pre-op appt yesterday. I hadn't taken on board that this would mean general anaesthetic, a 'proper' operation rather than just local. I expected to go back to work the next day but have been advised to take the week off, or at least three days (I work on my feet in a hectic manual job).
I'd like to know how long anyone else had to be off work after similar surgery, and how much pain you were in? I'm close to chickening out of it now - the deformed breast is only between me and the mirror, nobody else sees it.
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Thank you, it's clearly not the problem I'd anticipated, and I had no idea the same team might continue with care on transferring from private to NHS. Val, when you say the AXA cover ran out after 18 months do you mean that was the maximum timescale for which they would have your claim open, or that they had reached the limit on what they would pay irrespective of how long it took to get there? I'm embarrassed that I know nothing of the details of the cover that I had with BUPA, my ex arranged it and dealt with them entirely.
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Hi Elaine, it's interesting that you plan to use AXA again if you feel it's appropriate for the treatment/procedure in future. Have they expressed any questions over you switching from them to the NHS and back?
I think I'd agree that getting seen and treated quickly has been the single biggest advantage to private treatment, and the food is better! It has had nothing to do with the standard of care.
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Many thanks for the reassurance, just back from the GP and he says both the breast surgeon and plastic surgeon do NHS as well as private, he's referring me to the Breast Unit as an NHS patient and they'll then call me in for a mammo and to check the armpit swelling, and also get the ball rolling on the cosmetic tidying. He didn't actually examine the armpit, just made notes and put the referral through while I was there. I thought there may be some difficulty switching back to NHS and I'm massively relieved that it was so simple after all.
Caroline, I LOVE your picture, we used to have a little chap a lot like that!
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I'm not sure this is the right place to seek advice, BCC please tell me if it should be posted elsewhere.
I had Mx with immediate DIEP recon, chemo and rads in 2008, after routine mammo found a lump. When I first saw the Breast Surgeon, after the core biopsy result, he advised mx and started talking about recon options. I said I had BUPA cover and from then it seemed I was on a rollercoaster of £££ signs. Sentinel node biopsy quickly arranged at BUPA hospital, surgery booked the following Saturday with the 'dream team' of consultant breast surgeon, plastic surgeon and anaesthetist, who said "You wouldn't get the three of us working together on a Saturday unless you were private". Surgery was at the main hospital, was in a single, temperature controlled room for a week then moved to a ward for the last four days until the drains came out. They said I was never guaranteed a private room for the whole stay as they didn't have enough (though the hospital charged BUPA for 11 days in a private room). Chemo at the private hospital was no doubt nicer than the big hospital, but rads were back at the main hospital with the same long delays as the NHS patients. And the recon is terribly disappointing, lumpy, dented and ugly. At my first year check up and mammo, the Breast surgeon referred me back to the Plastic surgeon to discuss nipple recon. Soon afterwards my ex and I fell out badly, he withdrew financial support and cancelled the BUPA cover. I never contacted the Plastic surgeon, and I haven't had this year's mammo that was due in May, because I can't afford to pay for it if BUPA don't.
I see my GP tomorrow anyway for prescription review, and now I have a lump in the armpit where the lymph glands were removed, plus occasional lymphoedema over the last month. I need to know whether he can refer me to the hospital now as an NHS patient, to have my second post-op mammo there. Also I need to find out if the NHS will do the nipple reconstruction, and cosmetic tidying of the lumpy new breast, and remove the dog-ears from the DIEP scar.
BUPA paid only a proportion of the costs first time round, saying they'd only cover the cheapest recon option (implants) and my surgeon was unnecessarily expensive anyway. My ex dealt with them, and he paid the balance of the fees (around £2000 I think), but my relationship with him now is too bad to discuss it. I truly wish I had just had all of it done on the NHS, at least you are on the system, they look after you and you know where you stand. I don't even know the name of my breast care nurse, yet the NHS patients on here seem to consider theirs a supportive friend. I should be grateful to have had the private option but instead I'm upset and feel terribly defeated.
Sorry for rambling, fingers crossed the GP will refer me as an NHS patient, presumably to a different surgeon/nurse/team, and they'll carry on where BUPA left off.
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This is such sad news.
When I was dx early in 2008, I bought three books: the first was Breast Cancer for Dummies, the second was Take Off Your Party Dress by the late Dina Rabinovitch, and the third was Journal, the photographic narrative produced by Lynn and her daughter Annabel. I haven't looked at the Dummies book since my treatment finished, but I return to the other books time and again, not to read from beginning to end, but remembering a phrase or a paragraph that articulates what I might be feeling. Lynn (and Dina) died much, much too young. We are richer for women like them who can tell it like it is, yet with warmth and humour evident through the pain and fear.
RIP Lynn and heartfelt sympathy to her family.
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Hi, I had mx and immediate DIEP recon in March 2008, followed by 7 months chemo and then a month of rads. Went back to work in Jan 2009 but my job is very physical and in a grubby environment, I could probably have gone back sooner if I'd worked elsewhere.
The operation was 11 hours and I was in hospital 11 days, had to stay in until the wounds stopped draining. My kids are old enough to cope, the youngest had GCSEs but the others drive and kept the house running with support from my ex.
The worst part was constipation and terrible piles as a result of that. I slept on my back for weeks as rolling onto my side was really difficult for my tummy to manage, and the breast felt uncomfortable whichever side I lay. Advice differs but I was told to wear a level four, high impact sports bra plus strong support briefs day and night for three months at least. My daughter brought them into hospital so the breast nurse could check the fit before I went home. I just wore hospital gowns the whole time because of the drains, and flip-flops to walk about as they gripped better than my slippers. My surgeon didn't fit a belly band after the op (like a wide support belt) but some do. I didn't drive for five weeks, found vacuuming quite a struggle, and couldn't lift heavy items (eg a bucket of water) for quite a while. I got some cording in my arm and had physio to sort that out, I was also given Pilates-style exercises to do at home to strengthen my core muscles. I was reasonably fit before the operation, which helped, but then put on a lot of weight during chemo, which didn't help at all!
Now I'm still pleased with my flat tummy but I haven't yet had the dog-ears tidied up from the ends of the abdominal scar, nor a nipple reconstruction. The recon breast is slightly wider and firmer than the other one, and has a small dented/lumpy area, but I'm so glad I had this recon and not an implant. It's numb, as is the panel across the middle of my abdomen, but that's not a problem.
I hope all goes well, keep us posted and do ask if there's anything else. xxx
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Thanks Lola, I'm so pleased to hear how upbeat you are - sounds as if it went really well and I bet you can't wait to have the dressings off! I'm sure my plastic surgeon said he takes skin from the groin to form a new nipple, and I think I've read that the dog-ears from a DIEP scar can sometimes be used, but perhaps I dreamt that.
I'm due to see my breast surgeon in early May, I haven't seen the plastic surgeon since my DIEP stitches were taken out but I suppose he is the one to ask - or does my GP have to do an NHS referral? My tumour was behind the nipple, and the scar is a circle about 7cms diameter, much bigger than the areola - even with a 'new' nipple it will still look mutilated, but it has to look better than it does now.
I wasn't happy with BUPA at the time, they said they would have found cheaper surgeons, and in any case would only pay up to the equivalent cost of the cheapest recon, ie implants, leaving us with several thousands to pay to top-up. Maybe our cover is very basic, my ex took the cover out for the family and I don't have the policy wording. The chemo process was probably much nicer in the BUPA hospital, but as the surgery and rads were in the main hospital, with absolutely no differences between paying patients and NHS except that I (allegedly) had the 'dream team' of the top plastic surgeon, breast surgeon and anaesthetist working together, on a Saturday, which they only do for private patients. I hoped for a better cosmetic outcome in return for that!
Looking forward to an update next week!
Best wishes xxx
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Why on earth should the NHS fund such an insane plan? It's hard pressed to look after the sick, it's not there to provide babies as if they were a cute accessory.
You want to be the 60 year old parent of a small child in reception class, the 70 year old parent of a stroppy 15 year old? What are your motives? Do you want someone to look after you in your old age, and think your offspring will thank you for the job? Sorry, but I find this absolutely horrifying and am stunned that you really imagine it's ok to expect our NHS to pay.
And in any case, why would a cancer scare make you think you 'should' have a child??
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Hi ladies, can I ask if any of you had nipple recon done under the NHS? I had mastectomy and DIEP recon through BUPA, they only paid part of the recon cost - the equivalent of having a silicon implant - as they said it was unnecessary cosmetic expense, not necessary as part of the cancer treatment. The breast and plastic surgeons said to wait at least a year after rads before having the nipple recon, but now I can't afford to pay for it if BUPA won't pay. I'm wondering whether to ask for a referral to the NHS to get this done, as I absolutely hate the freaky, nipple-less breast that I have now. Are stick-on nipples really worth considering? Where do you get them??
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I had mastectomy and DIEP reconstruction in March 08, then chemo, and rads until Nov 08. Saw the oncologist just once after finishing rads, when he prescribed Tamoxifen and said there was no need to see him again. Had an appt with the breast surgeon in May 09, should have just had a mammo on the good breast but the recon is so lumpy they did a mammo on that one too, luckily the lumpy bits are just thought to be internal scar tissue (looks and feels ugly but not a health risk). I'll see the breast surgeon again each May until 5 years after the op. This is through BUPA - it was probably less unpleasant having chemo in a nice private hospital, but I actually wish I'd been NHS, because I think they have a far better all-round service in terms of support and aftercare.
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Please don't beat yourself up about not coping as well as you 'should' - who can define how any of us 'should' deal with this? It's hard, if not impossible, for anyone who has not been through it, or had a loved one go through it, to have any idea what it is like.
In March 08 I was in hospital after mastectomy and recon, followed by a summer of chemo, and rads until November. Went back to work in Jan 09, to the job I've had 10 years, but though I am certainly the oldest employee, I still feel the others are carrying me, and making allowances for my feeble, snappy, weepy or spaced-out days. At 53 I won't be changing job, I've no confidence to sell myself. The boss is a star, but young enough to be my son, and the firm is too small to have anyone I could talk to - so I'll plod on until retirement, unless they 'let me go' before then.
Do you have friends you can open up to? I didn't talk to anyone outside family about the cancer, and have become a real hermit other than going to work each day. The kids live at home, but are all grown, my ex is back with his on-off girlfriend, and I don't see anyone outside work. I had a very black spell after Christmas, but have just started running (in the dark, so nobody's about), and went swimming (alone) tonight, for the first time since the operation. That was nice, and I'll try to go each week. Losing weight and feeling fitter will be good, but just getting out moving and achieving something was a huge confidence boost, they're things I can do alone but get great pleasure from. If a class of tai chi or similar would appeal to you, that sounds a brilliant way of building confidence and restoring some balance when your life has been knocked so badly off course.
Hang in there, spring and light evenings are coming, that alone might make a massive difference to our mood - I hope so.
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I started Tamoxifen in December 2008, after chemo and rads. I'm always given just one month's supply at a time, and it's a wretched nuisance getting to our rural surgery for it (we have a village box scheme, but everyone rummages through the box looking for their own named bag, and the bags are translucent, so anyone can see what you've been prescribed - I won't use the scheme until they improve the privacy).
Very depressed for a combination of reasons this winter, I only remember to take the Tamoxifen every few days, and had virtually decided I couldn't really be bothered any more. I've taken four tablets in the last fortnight and is it just coincidence that I've lost A STONE, sleep through the night, and my usually painful knees and legs have eased so much that I went for a half-hour run after work today?
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I had treatment last year (mx, chemo, rads) and have been on Tamoxifen since the week before Christmas. Put on 2 stone and when I saw the breast surgeon in April, he said I 'obviously' had to eat less, if I gained weight it was because I'm eating too much for the level of activity I'm managing. Could have wept (or thumped him), he and I are on different planets. Now back in a manual job, on my feet all day, still no weight shifting, so clearly I'm still over-eating. Not sleeping at all well, and probably having too much carbohydrate and sugar to keep awake, otherwise I'm eating caffeine tablets to manage at work. Maybe it's menopausal weight gain, and not linked to cancer meds, but either way he made me feel like a greedy pig, he's probably right.
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I had mastectomy and immediate DIEP in March 08. BUPA covered the mastectomy and its investigations, and chemo/rads, but there was a substantial shortfall in their cover as they limited payment for reconstruction to what the cheapest kind (ie an implant) would have cost. My ex-husband pays for the family's BUPA cover and he very kindly paid the balance of the surgeons' fees himself.
I've had my one-year check up and mammo, there's some fat necrosis in the recon breast with a bit of fluid making it lumpy, but I've been invited to make an appt with the plastic surgeon to discuss nipple recon and removal of dog ears from the DIEP scar. Things are strained between my ex and myself, for several reasons, and I believe he is no longer able, or willing, to pay any more fees in relation to my body - and of course there is no reason why he should, he doesn't get to see it. However, I am not able to pay and I wondered if the NHS do nipple recon and tidying dog-ears. Would I be able to have them done on the NHS as all treatment has been private so far? Presumably it would have to be a different surgeon - can anyone tell me the protocol for changing just because I can't pay the one that did the original work?
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Great comment, Abby, I'll remember that...
Jane - hello - you are SO not alone in feeling the way you do, and thanks for sharing it so openly.
Haven't been around the site for a while and hello to you all - I'm 52, dx 1/08 after routine mammo, SNB, 2/27 nodes, Grade 2 35mm ER+, mx and immediate DIEP 3/08, Epi-CMF, 15x rads, started Tamoxifen in Dec, returned to work in Jan. And everyone thinks I should be over it.
I got an appt through the post today to see the conslt breast surgeon on 11 May. The last time we met was April 08, when he confirmed the post-mx results meant I needed chemo, rads and tamox. I have had a surge of absolute loathing for him today, anger, misery and tears. I hated him on first meeting after the core biopsy, didn't want to have treatment at all and felt he was more interested in my ex's opinions - my ex pays for the family's BUPA cover, and insisted I had private treatment. In reality all this meant was a massive bill for the shortfall in what they would pay towards the recon, as BUPA consider DIEP an unnecessary expense and pay only the cost of the cheapest implant. The surgeon was, I thought, curt, impatient and irritable. I can't even remember the BCN's name, I had very little contact with her. I think the NHS does a much better job on the support side, with BUPA you're left to get on with it. I did have some counselling post-rads, but found it sugar-coated, frustrating and not helpful.
The recon looks convincing when I'm clothed, so I'm lucky. I used the cold cap and kept my hair, so I'm lucky. My job was held open and the team are sympathetic and supportive, so I'm lucky. My ex (and grown-up kids, to varying degrees) have been helpful, so I'm lucky. The oncologist said last week, "You don't 'have' cancer, you 'had' it, now you've had all the treatment and you're doing well", so I'm lucky, aren't I?
But I too am old and fat, ugly and tired. I have my hair, and am grateful for that, and I have two surplus stones of blubber, a lumpy boob with no nipple, a wide (though smooth) DIEP scar, a still-sore SNB scar, and a shiny, itchy keloid scar where the portacath was. I have no confidence and no optimism, a sense of having been pushed into treatment to keep the family happy, and am left with overriding guilt that my ex has kindly met the considerable costs of fixing the ungrateful, angry and revolting cow that I have become.
We separated 12 years ago, and I had a brief and utterly blissful relationship for 4 years that ended abruptly and painfully a year before my dx, with a man who would not have handled any of this. My ex and his long term g/f separated shortly before the dx, and when agreeing that he would cover any costs that BUPA refused, he even suggested we could think about getting back together. For all the wrong reasons, I'm sure, though we didn't really talk then and we don't talk now. Whether I could have slept with him again without the BC is doubtful anyway - now I am absolutely certain I will never, never have sex again with anyone, never be unclothed in front of anyone outside a medical examination, never allow anyone to see or touch this hideous shell of a body, and never get emotionally close to anyone else because this horrid cancer has wrecked any ability to trust. I don't look forward to next week, next month, let alone a conventional future.
I don't trust my body, my coping strategies, my temper, my physical or intellectual competence, my ability to be 'there' for anyone. My youngest is 17, doing A levels. My elder two still live at home. I let them lean on me now almost more than before all this, maybe just because being utterly frazzled makes me feel I'm doing something 'good', and laundry and taxi service is just about all I can manage without thinking too hard.
The media coverage of the sadly very young Jade Goody, and to Wendy Richards, prompted my elder daughter to repeatedly ask for confirmation that I'm 'clear'. I'm reading, again, the books by Dina Rabinovitch, Jane Tomlinson, John Diamond, people whose cancers came back, and I snap at my poor daughter for pressing the point, for wanting an assurance I'm not able to give her. She's scared, but this is pushing us apart, I push everyone away. I can't accept my oncologist's neatly packaged opinion. I ask how I'll know if it's come back - he says it'll be no different from anyone getting a primary cancer, time to worry is when there are symptoms to worry about, just have yearly mammos from next week and be glad it's all gone so well. It's a good thing I like the oncologist - if the hated breast surgeon says that next week, I think I will flip.
Sorry for the long ramble, choccies to anyone who read to the end, and Jane, especially... I hope I understand how you are feeling.
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