Breast Cancer Now Forum

...to clarify....the new breast was contaminated with cells due to the ops happening at the same time. ... View more

One more thing to think about in this debate.  If you delay the reconstruction, you can be sure all the cancer has gone.  If you have an immediate reconstruction, you could end up with cancer in the new breast - and that becomes a long journey.   I know it's rare, and I don't know the statistics (maybe someone out there knows), but no one even hinted at this to me.  It does happen - and it did to me, at a very well-regarded cancer hospital.  ... View more

So sorry to hear of your experiences on Tamoxifen - not easy is it?  Thanks for the science background - that's just what I wanted to know, so very helpful.  I've sent an email to my oncologist to see what she advises as the last time I saw her she advised that I have to keep taking it for 10 years now, not 5.  If 4 years has got me to this stage, I think I may shrivel up if I have to do 10!  I hate running by the way, but I force myself to do it as it at least gets me moving (and not fast - I sometimes just do 2 mins running and 1 walking, but it is better than nothing).  Otherwise, I may just feel too depressed about the tiredness and speeded up ageing.  I'm so sorry you seem to have it hard.   Thanks again x ... View more

Haven't been on this for years, but this thread is amazing. I had mx, then immediate ld flap recon with implant for DCIS. Trouble is, the new beast was contaminated during the recon, so I got cancer in the reconstruction. Took me ages to be taken seriously by my doctor. Eventually had new cancer removed, so I have three quarters of a breast, with a hard implant due to the rads. It hurts all the time, my back hurts and my skin has stuck to my rib cage where the flap was taken from. Nothing can be done apart from taking the whole thing off and trying a diep. If I hadn't had the immediate recon, I would not have got cancer. No one tells u of the contamination risk, the 'glued' back etc. I would support a campaign for advised delay in reconstruction. No one should be scared of having no breasts. It gives the mind and body time to think. Removing the cancer is one thing, but making a decision about something you have to live with for ever is too hard all at once. I agree with everything that's been said before. Well done all of you for bringing this subject up. What I didn't read was the effect on the oh too. Mine never touched my new breast, even before it was disfigured. He's a kind man, but couldn't get over the strange feel of it. He did try. Very sad. x ... View more

Remember you can have the op in one place then transfer to your local hospital for the aftercare. Double-check this with the surgeon, but you want the best surgeon you can find this time around. Good luck ... View more

Really pleased the diep is working for you. Can you tell me about the scars? Is there a scar around your belly button? And is the other scar from hip to hip under the bikini line or is it shorter than that? The reason I'm asking is that I'm already scarred from a previous op and have been offered a diep to put it all right, but I wonder if I shld just be grateful to be alive. I had mx for dcis. With ld flap recon. Cancer appeared in recon. Then had chemo, rads, Herceptin, lumpectomy on recon. So never had nipple done as recon. looks a mess. I can live with it although pretend it isn't there and never let my oh see me naked. The implant has hardened and breast moved under my arm, so I only wear stretchy bras and threw all the others away as nothing fits. At the end of each day I feel tired as the discomfort is draining, but people live with terrible injuries that I'll never have. So, the only solution is more ops. Replacing the implant wld not work as a lot of the problem is the ld flap. I've got one of the best surgeons to do the new op, but am I seeking a perfection that isn't there? Will I damage a perfectly good bit of my body just to fix a hideous bit? I don't know what I'm asking you really, other than real honesty about the scars. (I am slim, aged 56 and have always eaten well and still run, so I have a lovely tummy area and slim waist. I feel really anxious that this is the bit of me that looks good) ... View more

Well there was contamination of cancer cells from the my breast when it was removed for DCIS. So the cancer continued to grow in the reconstructed breast so the op was a waste. I then needed chemo etc and the rads on the implant made it go hard and tight. Then I had to have a chunk taken out of the recon - to get clear margins, so my new breast is quite deformed, very tight and has moved under my arm a bit. I just want it taken off now and redone with a diep flap. My bras aren't comfortable as the breasts are too far apart. Am seeing a plastic surgeon at end of September - so if anyone has any thoughts/ experience that would be great. ... View more

So hard isn't it. It is as much about our stupid society thinking that if we could just think positive and be strong it would all be OK. The media talk about heroic people running marathons 3 weeks after surgery and we all feel we're just not trying hard enough. I'm sure those people doing amazing things after cancer don't do it to make the rest of us feel bad - but when you're in that pit of 'why am I not recovering?', expectations are difficult to not take personally. All I can say is that when you look back you need to feel that you loved yourself enough during recovery that you gently and kindly coaxed yourself through it. I look back and am disappointed that I was so busy trying to live up to expectations of others AND enjoying the praise that I forgot about the little lonely and scared me. I've seen my cousin go through cancer and she is brilliant. Basically she does what she wants, goes to bed, gets up, cries, ignores people, stays in pyjamas all day, eats ice cream instead of breakfast and puts herself first. She says no one else knows what she's going through so she'll decide what she does, when, thank you very much and sod everyone else. I really admire her. Really caring for yourself takes courage and sometimes were the only people that can do that for ourselves. Be kind to yourself and your poor old body. Annie. ... View more

Thanks for responding Naz, Mine is an ld flap that needs to be removed, and the implant removed too but not sure what happens to the flap. Can it be sewn back where it came from or do I lose the flap altogether? I think this is quite unusual - especially as I've had it for 5 years. Any thoughts? ... View more

A few thoughts: If you don't have the rads, and it comes back, it will be a primary cancer in the breast. You are likely to be much more aware of your breast now, so I would imagine that you would pick up a lump and have it seen to quickly. Not nice, and only you can judge whether you'd feel comfortable with this approach. A primary in the breast is still very treatable - but it would mean chemo etc. And, the chances (based on the stats) are that it won't come back anyway. But, if having the rads now is going to give you the understandable constant worry over a possible lung cancer which is more difficult to check for - then this approach may be an option. I'm not advising you, but I think you need to sit down with someone who can look at the stats, understand how you will think and feel and look at some options based on the outcomes in different scenarios. There is a right answer for you and you've got a long life ahead to live so make that as worry free as possible. ... View more

Many of the side effects recede after a while as the body gets used to the drug. For me, the only disappointment is that whilst my hair all grew back well after treatment originally, 2 years on Arimidex, has caused my hair to become thin and I have no eyebrows or lashes. To be fair, I'm more upset about this than I should be because my lovely thick hair was my best feature but people who don't know me wouldn't notice. The eyebrows are a problem as drawing in eyebrows look hideous, but without them, you look tired although no one knows why unless you point it out. So, I'm whining really, but just sharing. ... View more

Yes, I have. My hair came back and was as it had been - thick and wavy. I was on Tamoxifen. This caused a blood clot, so I was switched to anastrozole. That was a year ago. I now have very straight, thin hair, no eyebrows and a few stubby eyelashes. I had very thick hair before and it was my best feature, but this and being eyebrow and eyelash less is more upsetting than not having a breast. I know it's a very shallow thing to say, but you can't hide a bare face. When I could afford it I went for lash extensions, but I got sore eyes from that. I've tried all the suggested shampoos but in the end I've decided to work with what I have and wear it up in such a way that it covers the extra thin parts. I'm hoping that when I stop the drugs the hair will come back. Good luck, these extra side effects are just the icing on the cake aren't they? The positive I take out of it is that it means the hormones really are effectively being removed, which will mean less chance of more cancer. Annie ... View more

Thanks both for the thoughts and tips. My hair was normal when it grew back, but now, 3 years into the hormone treatment this is when it is thinning and the brows and lashes have gone. I had professionally done false lashes - applied lash by lash, and although the patch test ( for the glue) was ok, I got allergic to them..they looked great but my eyes were red! I react to all make up (high maintenance, as you say - I've even been through all SpaceNk can offer!) - but maybe the headstrong eyelashes are worth a try as they may have different glue. The hard thing is that for a year after the Herceptin finished I looked good and healthy, but I now am rapidly and visibly ageing. My skin is sallow and I'm more tired as each year goes by. I will look into the eyebrows suggestion. Thanks all...I'm just in a complaining mood today! ... View more

You don't need to mention it at all. It is irrelevant as to how well you can do your job. Employers these days do not have a right to question you and you have no obligation to mention it either. And even if you did mention it, they can't use this as a reason to refuse you the job as that would be discrimination and you could sue them for it. So just allow them to judge you for your skills and suitability. Good luck. ... View more

I'm 2 years on from chemo but still on anastrozole. No hair in armpits, no eyebrows and invisible tiny short eyelashes. My beautiful thick hair has grown back very thin and limp. I'm hoping that this will change in another 3 years when I stop treatment, but for now I just hope I don't catch sight of myself. Is there anyone out there who has seen a difference when they stopped taking hormone treatment? ... View more

.....I wasn't offered it after mx for dcis. I had a mirena too, ER positive. 6 months later I found cancer in the reconstruction. As my dcis was so widespread, I still can't understand why I wasn't given proper information and choice. My husband and I asked the question ' are you sure there is no belt and braces approach' and was told that dcis treated with mx was a cure and I wouldn't need anything else, Wrong answer! 3 years on and only now have I just been told I can have more ops to fix my poor old misshapen and twisted reconstruction. 3% could still be you and so I would urge everyone to give the drug a go for a few months to see how bad it is - you can always stop it if you can't cope. ... View more

...and was put on anastrozole instead of tamoxifen as hospital confirmed that that was the cause. Hope you manage to get the right balance of medication and can put this drug induced 'extra' behind you. It really is the last thing you need on top of what you've been through. Annie ... View more