Breast Cancer Now Forum

I had my first of 3 FEC on 7th December and used the cold cap. Hair has thinned, but still got it and no one else notices. Mine is very thick and long, so I cut it short (v. pixie-style short) to take the weight off it and to avoid dropping long hairs everywhere (and to avoid me having to clean out plug holes. Yuk!). As mentioned, there is more to it than the hospital tells you, so do look at the info suggested in the other posts here. I will wet my hair next time before putting the cap on. I have washed my hair in the shower, patted it dry and used a hairdryer everyday. I used gentle shampoo and conditioners. I checked on the comment re: chemo not getting to the follicles and the onc. said that as bc doesn't move to the head, this wasn't really an issue. (secondaries are lungs, bones and liver - not head). But check with you oncologist for her/his view. Hope this helps Annie ... View more

Sophie, I wasn't going to give the cap another try as I was worried about the chemo not reaching the hair follicles - but the consultant said that as BC doesn't move the the hair follicles, this wasn't really a concern. This time (with the cold cap), I will wet my hair and take a hot water bottle and blankets as you get miserably cold. ... View more

Strange how we're all different on the hair loss front. I used the 'cold cap'. My first FEC was 7th Dec. I had my hair cut really short to take the weight out of it. No hair loss until day 16. Loads of hair thinning until my second FEC was due (day 21), then it all stopped and there's no more loss. Couldn't have second FEC as my neutrophil count was too low, so have to wait til next week. In a way I was pleased that my hair started to come out as it proved that the chemo was working!! I expect it will all come out, but it is so difficult to decide on the right timing for shaving the head to get it over with. Happy new year to all ... View more

Absolutely agree that everyone has their own rules about who/when/what to tell. But, can I just put a thought forward ? (and not a criticism AT ALL). All the major charities spend an absolute fortune of 'raising awareness' of breast cancer; for some, this is all they do. Millions of people walk miles, run races, etc - all to 'raise awareness'. Why do they do this? Two main reasons 1. to make sure people come forward with symptoms and don't keep it to themselves until it is too late 2. so that as much resource as possible is put into research (donations from public and government decisions). It was the thought that I had a chance to help people to a) not be scared and b) understand that those of us with cancer are everywhere and that this happens in their street, in their family - not to someone else, that helped me to decide to tell as many people as possible about my diagnosis, explain the facts and the prognosis. I really do not judge anyone who decides not to tell people, but I felt that if I was more open about it, this might help other people to come forward if they had symptoms and through their awareness, understand and possibly donate to the fantastic charities, without whom, we wouldn't be here. It is an extremely difficult thing to actually face people and tell them, if you are not an outgoing person (I'm not). However, I experimented by telling a few people to start with, then built up my confidence about how to do it. I have found so many other women who have opened up and talked about their dx too and who have kept it quiet and one who has actually gone to the doctor about a lump that she thought would 'go away'. If this disease arms us with anything positive, it is the ability to talk about it and bore for England if necessary, to get raise the awareness and understanding that the millions of pounds of charity money has still not achieved. But this is just a point of view and each must deal with it in their own way. Love to all for 2011. ... View more

Thanks for the virtual hug Jacqui. Gingerbud; what a terrible experience for you. It really is shocking to have gone through so much to get the new breast - seems such a waste of everything. Mine is simpler I think. I only had DCIS, but it was fast growing and covered my whole breast - so it needed to come off. I wasn't given any chemo as 'there is nothing left; so there is no risk'. Went to the doctor in June and presented a tiny lump in breast but was told it was nothing. I left it as I was caring for my elderly and dying father two days a week (dying so painfully and distressingly that if he had been an animal we would have put him out of his misery - but that's another story), and working full time..blah...blah. So, when father died in October, I went straight back to the breast clinic as this lump had grown. Within 4 weeks I was having chemo - stage 2, grade 3, two lumps. I can't have a reconstruction as I have nowhere else to get it from - so I'm really p****d off as that breast was my only chance. I'll have 3 FEC, 3 Tax, Operation, rads. So, although my lumps are 'attached' to the skin, I've just re-read my letter and I am only a stage 2, they can't be mets I don't think. So pleased your scans seem clear...lets hope the rads have sorted it. Are you having a full recon? Do you know what sort? Lola, I felt one of the lumps, but the other was hidden. Knowing what I know now, I will insist on (and pay for) a regular ultrasound on the new breast (if they can find a way to make one for me). Even if I have to sacrifice the cost of a holiday, or borrow on the mortgage, I'm not taking a risk again. Don't panic though, it is rare for a recurrence after an mx, just be vigilant! ... View more

Gwendolyn, My son is back on Saturday too - and am due to Skype other son on post-uni gap year tomorrow. Just keeping fingers crossed I keep my hair until Sunday - just to give them time to adjust. Been told that day 14 seems to be the most common time to lose it. Any other experience around? Annie ... View more

lella, Stress.....this HAS to be what is contributing to cancers. Work/life/kids/career/partner/weight/mortgage/endowment policies that are worth nothing/pensions worth nothing/houses dropping in value/elderly parents..blah..blah..blah...kids who should've left and haven't.....and I still have to be the one to remember where everyone left ANYTHING..oh, and put up shelves....... I have no other risk factors - don't smoke, don't drink, no cancer in the family, breast fed, didn't have kids late, run 15k per week. It's definitely STRESS, and we're all our own worst enemy. I think it is worth some research. love to all Annie ... View more

Bacca, So, dex is the culprit...I felt soooo spaced out and kept bumping into the furniture, and only felt better two days after I'd stopped it, so thanks for the tip - I'll speak to the chemo nurse. Annie ... View more

Steph, You've taken the first step, so whatever the results, you'll have started on the journey. I had a mx and LD flap reconstruction in Nov 2009, found a lump in June 2010, went to doctor (who said it was nothing), but it got bigger and by October I was so worried that I found the surgeon's email address and sent an email direct to him. He got me into the clinic. Anyway, it was cancer - and now I have two lumps (stage 2) in the reconstructed breast. As it was a fast growing (grade 3), I was alarmed when a lump was found in the liver, but it was benign. Started chemo 10 days ago and have a long haul ahead, including losing the new breast and the back muscle. BUT - it is all treatable - and it wouldn't have been if I'd delayed even more. The worry is the worst bit; and like you, I was hoping for a better Christmas this year. You just need to get all the tests you can to put your mind at rest, but it sounds as if you've got onto it quickly. I hope that you'll get positive news and are able to have a happy Christmas. Please let us know how you get on. I'm looking forward to Christmas 2011! Annie ... View more

thanks for all the ideas; Jo, I'll keep a diary as you suggest as it does seem to disappear into a fog of 'side effects' and it would stop me rambling! Lulu re: my mx, I didn't have chemo. My whinge is that I sat down with the consultant and stressed that I would be really happy (?) to have chemo if it removed any risk and he was very very clear that there was none, and that 'everything had been removed'. The breast that was removed had high-grade and very widespread DCIS (the whole breast looked white on the mammogram), so I was a bit surprised - hence me questioning the surgeon. My new consultant says that there is always some breast tissue left behind and my current hospital (a London one) has had two cases like mine in a year - so not many. My frustration is that had I known that there was a risk, I would have insisted that my GP referred me back to the consultant when I presented my lump back in June. Instead, my GP said it was nothing and no chance of it being anything in a reconstructed breast - so, as I was caring for my dying Dad - I didn't push it. I'm sorry if I've worried anyone. I just think we should make sure anyone with our history is referred HOWEVER unlikely another lump is to be cancer - as least it can be dealt with at a very early stage. I was happy to take the GPs opinion and will kick myself forever for that. Knowledge is power as they say - and I have written to my first hospital to say that I think they should explain the risk to mx patients with no chemo (copying a note to their GP). love to all Annie ... View more

Ali, This is just what I was looking for. I know we all differ, but having some anchor helps. Also helps me to set expectations for kids coming back from Uni for Christmas - in terms of how I may look/feel. Thanks for your help Annie ... View more

Kathy, I'm a few days behind you - so how are you doing? I've just had all my hair cut v. short as I can't bear the thought of plugholes full of hair! Ali, Did you feel worse around days 7 - 14, then better again? This is what I've been told to expect, but not heard from anyone about different 'patterns'. I feel so spaced out (first FEC last Tuesday), but I think this may be 'cos I'm drinking 3 litres of water a day - which I hate - and I've heard you can get lightheaded from this! Annie ... View more

Hello! I have only just started on chemo, but due to issues with my vein this time - and the fact that I can only use one arm (previous mx) - I'm having a 'line' permanently put in under the skin which means they put the chemo through this instead of the vein on my hand next time. It stays in until all the treatment is finished, prevents collapsed veins and is much less uncomfortable (and quicker) You may already have gone down this route, but there are a number of different ones - Hickman, Picc etc, but it might be worth asking. Annie ... View more

...why do they do it?? 'Have left to soak' - as if that helps! It just means me washing it up anyway as I can't use the sink when the 'soaking' strategy has been forgotten or I get fed up with looking at it get colder and greasier! Hmm, feel more motivated already! thanks Maggie ... View more

Hello; I just started my first FEC and this thread has been a lot of help as I think most of you are ahead of me in the journey. Had a mx for DCIS in Nov 2009, and LD flap reconstruction, but a bit of breast tissue was missed (!), so it has developed nicely into a grade 3, stage 2. Losing a breast was difficult, but now losing a 'new breast' and the back muscle after only a year seems very careless! I spent the last 9 months after I recovered from the mx as main family wage earner, carer for father for two days a week (who died a terrible and slow death from kidney failure in October) and was ready to have a break for me. Well, this is it! No money as no job now (I was freelance). Anyway, starting the journey is better than the worry - although I am booked for another scan on my liver as there is a slight suspicion of 'something' - but you are all getting through it, so I'll just be another statistic on that same road and that means NOT ALONE. I'm hoping that once I'm through the first 'cycle', I'll know what to expect and not be so distracted. Is that what you've found? I don't actually feel too bad, just very SLOW, so I don't know why I can't get on with things. I sort of feel on the outside of real life and going through the motions. Things get done (well, I do them), but can't recall how as I'm sort of in la la land. Annie ... View more

Earlier in this trail, there was a question about what sort of reconstruction was available if you've already used the LD Flap (and will need to lose it), but can't have any of the abdominal tissue reconstructions. There seems to be something called LSGAP, which appears to be a new operation and is used for slimmer people. The info I read says it takes the flat pockets of fat (that even slim people have) between the waist and the hip (above the bottom). From what I have read, it causes fewer problems than taking fat from the bottom (less disfigurement) although not every slim person is eligible. Does anyone else know about this? ... View more

Cathy, I'm in similar situation. Mastectomy Nov 2009, now grade 3 stage 2 in new breast (LD flap reconstruction). I'd been back to doctor and cancer nurse in June and both said very rare to get it in a reconstructed breast, so didn't push. They were wrong. It turns out that there was enough breast tissue left behind for the cancer to work its magic. Mine is just under the scar where the nipple was. Just waiting for results of CT scan in case it has spread, but been told my chemo will start on 7th - so bone density, MRI, hickman line etc etc all to be done before then. I'd just got used to my new breast and no idea if I can get another one if this one can't be saved (not enough fat on tummy). Seems like the mx was a waste of back muscle just for a year. Didn't mean to talk about me! Just expressing similarities. I'm pre-menopausal too, but they haven't said anything about zoladex - maybe that's the next thing to learn about. Third time must be terrible. Well done for being positive; I'd be interested in seeing the response to your question about anyone with any ideas about recon breast without tummy or back muscle. I did hear of a completely synthetic one kept in place with a net, but will do a bit more research. If I find anything out I'll post it here. A ... View more

Anyone had to have a hickman line put in? I am having 3xFEC and 3tax to shrink the tumour and to try to save the reconstruction (had mx and reconstruction only a year ago). The stage 2, grade 3 is in the reconstructed breast. My veins are very small, so hickman has been advised - and I find it really creepy does anyone know what it feels like to live with? ... View more

All your words are reassuring. I had mastectomy for high grade DCIS, LD Flap reconstruction, no chemo, no rads in November 2009. Presented a pea-sized lump in reconstructed breast 6 months ago, but GP said it was nothing. Pushed to get appointment with breast unit and just heard today that I have third grade, stage two BC. Waiting for MRI, CT Scan etc and chemo starts Monday week. Why didn't I push harder? Having read your experiences, this seems more usual than I thought. It feels like the reconstruction was a waste as I have been told I will lose it. The awful panicky feeling is terrible, but reading others with sensible level heads - puts it into a bit of perspective. Thanks everyone ... View more