Breast Cancer Now Forum

Hi  I cold capped all the way through.  It was too loose first time so I did lose some hair - but kept enough that I did not need to use a wig.  Towards the end I was using a hairband to cover a thin strip over the top of my head - arising from the loose cap.    I was told that it was worth continuing with the cap even with hair loss because it would mean it grew back more quickly and would be more likely to be the same colour.  I don't know how true this is but in my case it certainly did recover pretty fast - and it did grow back the same colour. Good luck with treatment. ... View more

I had a mastectomy after a wide local excision for DCIS failed to produce clear margins - I wanted a mastectomy from the start but consultant keen to try WLE.  Three months later DCIS found on the other side so I had a second mastectomy (I absolutely did not want to try WLE again and surgeon agreed - just as well as there turned out to be invasive cells which needed other treatment).      I think the psychological impact mentioned might depend on how you feel about it - I wanted to do everything possible to get rid of the problem and to try to make sure it did not come back. Mastectomy felt like the best option to me so I felt much happier going down that route - and no regrets afterwards.  It probably helped that both mastectomies revealed things which had not shown up on scans, ultrasounds etc so I was told both times that the mx had been the right decision!  There is also family history.       I have not had reconstructions and don't plan to do so.  It might sound odd but I found it was slightly easier after the second mx - not being lopsided gives me much more flexibility on whether to bother with prostheses or not (depends what I am doing/wearing).   Not quite the same as your issues as I did not have the option of having the mastectomies at the same time but hope this helps.  Best of luck with your decisions.   ... View more

Hi Charys I don't know if it would help you but it might be worth asking your GP or BCN if Diprobase cream would be worth trying.  I had this prescribed by my GP (before breast cancer) for problems with dry, flaking, itchy skin (particularly in winter) - and it worked, unlike other creams I had tried.  When I ended up having radiotherapy I was worried about the potential effect on my skin - the nurses said it would be OK to use Diprobase so I used it during radiotherapy and after.  I had no real problems - may or may not have been the cream - obviously I can't say for sure!  However, I find now that if I stop using it I do seem to get problems - so I use it all the time. You can now get it without a prescription but probably worth discussing with someone first to see if they think it would work on your problem.  I use the cream (rather than the ointment) but again GP or BCN might have a view.   Hope you can get it sorted out. ... View more

I had mx for high grade DICS - mx revealed invasive cells - HER2+ (nodes clear).  Surgeon thought no more treatment needed but the oncologist was keen for me to have herceptin so I had to have chemo to get that.  That was relatively easy to decide because the benefits of herceptin seemed clear.  He also advised radiotherapy because it was diagnosed largely accidentally - nothing had shown up on mammogram and u/s.  Slightly harder to decide about radiotherapy as the benefit was less clear cut plus possible downside (especially as it was on the left).  In the end I followed the oncologist's advice and chose to do radiotherapy - decided throwing everything at it to reduce the risk of it coming back was the best option.  Have they been through the likely benefit compared to any possible downsides with you? Sounds as though that might help.     ... View more

I had WLE for DCIS - I would have preferred mx from the start.  Did not have clear margins so ended up with mx (which turned out to be the right decision as mx showed all cells were changing) - so ended up having 2 ops rather than one.  I was sure I did not want reconstruction - did not want extra surgery, longer recovery time and restriction of movement etc.   Husband agreed with me - especially after he read the really useful booklet about recons on this site!   I was offered (but refused) the chance to talk to recon specialist.  As you can go for delayed recon anyway nobody seemed too worried - and knowing the option was there was useful even though I thought I would not change my mind.     Less than three months later ended up being diagnosed (high grade DCIS) on the other side - nobody tried to persuade me to do WLE that time so straight to second mx (which revealed invasive cells).  Had to have more treatment - chemo, radio etc.  I have no intention of wasting any more time having reconstructions.     Personally, following brief experience of being 'lopsided' I think it is slightly easier being completely flat, although like Flint I got on fine with a prosthesis on one side (I was smaller though - I think sometimes people find it harder if they need larger prostheses).  Now I use 2 prostheses so that all my clothes (particularly work clothes) still fit and look the same - I did not want to replace my entire wardrobe.  However, sometimes I don't bother (especially under loose fitting casual clothes) - an advantage of being flat.  I started with silicone prostheses (still wear them occasionally) but once I discovered Nicola Jane lightweght foam ones I switched to those and now use them all the time. They are light/comfortable and I forget about them most of the time.    People feel differently about mx/being flat - so important to work out what you want - but you certainly aren't alone.  Good luck with surgery.  ... View more

Hi Sonia The surgeon told me I was lucky after the second mx.  It wasn't quite the word which sprang into my mind - especially once the onc suggested chemo/herceptin.  However, I knew what he meant and it's really the only way to look at it - I was very lucky it was found when it was.  I could have refused chemo (and radiotherapy) but the onc was very certain that herceptin was a good idea (and at the time you could not have it without chemo first - this may change as there is a trial looking at herceptin without chemo).  I went for the lot because like Joandthetribe I wanted to do everything possible to reduce the risk of it coming back - I am pleased I did.   I hope you don't have any more nasty surprises and you can avoid the radiotherapy - it is a real pain when the results are not what everyone expects.  You think you are nearly there and then something else jumps out of the woodwork!        ... View more

Hi Sonia No I did not have very much pain - they suggested some painkillers if required but I did not really need them after a few days. It is important to do the exercises they give you (when they tell you it is OK) - I did have some soreness/slight pain under the arms afterwards (in fact any pain I did have was really under the arms - had sentinel node biopsies as part of the mx both times so I think that is why).  Apparently the exercises help in the long term because with luck they stop any scar tissue being in the 'wrong' place - because you have re-established 'normal ' movement!  I still get twinges under the arms occasionally but not very painful (more a reminder to be careful about carrying heavy weights etc).   After first mx I did not need any more treatment - it was DCIS that side and the nodes were clear.  Unfortunately the same was not true of the other side.  Three months after first mx I found a lump - nothing had shown up on mammogram (when the DCIS on the other side was found).  U/S looked OK but due to history they did biopsies which showed high grade DCIS.  After mx it turned out there were invasive cells (not in the lump though - that was harmless!) - hiding as the onc put it - but nodes were clear.  It was ER- but HER2+ so chemo and herceptin.  Radiotherapy was borderline but the onc was keen so thought I might as well throw everything at it.  Trying to ensure it did not come back - fingers crossed......   Sounds as though your scar should be fairly well hidden which will be good.  Hope you don't need any more treatment after the mx - it is good when you get to the end of the treatment! ... View more

Hi Sonia Sorry you ended up with mx after two failed WLE. I actually wanted mx and after first failed WLE they agreed - after mx it turned out there would never have been a clear margin because, as in your case, it turned out that all the other cells were in the process of changing (benefit of hindsight I suppose).  Made me feel the WLE was a waste of time - could just have had one op!  Did not find the mx too much of a problem (have actually had two now because later a problem turned up the other side).     On both occasions I had the drains removed before I left hospital - at the point when they thought enough fluid had drained to mean that this would be OK (they were measuring it).  I was keen to get out but not keen to leave with the drains so it was fine by me!  I did have to go back a few times to have seromas drained (particularly on one side) but I don't think that was anything to do with timing of having the drains removed as very little fluid was draining when they were removed and it took time to build up  - apparently it frequently happens (and can even happen again months later - luckily not in my case).   I should note that I did not have any form of reconstruction.  I am not sure if this might make a difference in terms of how long you need the drains in - it could do.  Hopefully someone else will be along who has had implants.   Best of luck.  Hope it all goes well. ... View more

Don't worry about it from the pain point of view - didn't hurt at all.  Mine are tiny - hardly visible and I never notice them (but I did have bilateral mx/no recon).  Hope it goes well for you. ... View more

Hi lizred I found Nicola Jane really helpful for post mx bras - they are specialists and stock a wide range.  I live near enough to get to one of their shops - found it really useful to talk to someone, get some advice and try different bras on.  They have a good website too. I am smallish and definitely found soft and comfortable worked best for me.  Also found that their foam prostheses were better than the shapeless things provided by the hospital - and still OK to wear fairly soon after mx.  Hope you find something you like. ... View more

Hi Sonya Macmillan have some good soup recipes on their website.  They also have other recipes designed to be easy to eat and prepare.  Might give you some ideas.  I think they will also post you a free booklet with all the recipes if that is easier to use in the kitchen.   Hope you find something which tempts you.   ... View more

Hi Debra My feeling was that it was cancer and I wanted it removed - particularly as I was under 50 so I felt that it could have many years to develop.  I also decided that the prognosis, with treatment, was good for DCIS so no point waiting to see if it developed (and potentially then being harder to treat).  Also I did not want the stress of repeated mammograms, biopsies etc to monitor it - I actually wanted a mastectomy.       I also discovered that the DCIS diagnosis can be deceptive. As I say I wanted a mastectomy (for intermediate DCIS) but was persuaded to try WLE - no clear margins so I did then have the mx which revealed other cells were changing so the mx was the right decision.  Less than three months later high grade DCIS found, largely by chance, in the other breast.  This time surgeon happy to go straight to mx - which revealed extensive invasive cells (which had not shown up on mammogram/ultrasound or biopsy) so again the mastectomy was the right decision.   It is a difficult position to be in and I hope you get lots of help deciding - make sure you ask lots of questions.  If a mastectomy is being recommended there should be a reason (widespread DCIS for example) - my experience was that they prefer to start with wle if they think it will be enough.  If you have not already done so I recommend calling the helpline for a chat with someone.  There are also some useful publications in the information area of the site.   Best wishes for meeting with surgeon. ... View more

I have found Nicola Jane brilliant for fittings (plus good choice of mastectomy bras).  They have shops in Chichester, London and Leeds - and they are mastectomy specialists so all their fitters are trained (and in my experience of Chichester and London very helpful and knowledgeable).  I had no help from hospital so I was very relieved to find someone who could advise on prostheses and bras.  Also wanted to try different types of prostheses because at the start I had no idea what would work for me - they have a range of those too which was really useful.  They also know all about the VAT exemption.  I did buy one mastectomy bra in a high street store.  Found it hidden in a dark corner but very reasonably priced for Anita (probably been there a while as they were making no effort to sell them).  Then discovered they did not have a clue about the VAT!   ... View more

Hi Lynne.  I have had bilateral mx (not at the same time) without reconstruction.  Had the week of the op off work for both mx and then worked at home for a week.  After that back at work.  From other posts I have seen it takes longer if you have reconstruction and of course it is a very individual thing and depends how you feel. Obviously if chemo/radiotherapy required after mx that changes things but hope you won't need either.  Best of luck - hope you get a date soon and it all goes well. ... View more

Hi Kim Agree with bravescholar.  I have had double mx (operations at different times) - no reconstruction. Drains were removed before leaving hospital.  Had seromas after both and the surgeon drained them several times because they were uncomfortable.  It did not hurt - rather like having a blood test.   Good luck with the chemo. ... View more

Hi Kaz Sorry you are in this position. Would definitely recommend talking to someone - the bcc helpline is very good and the cancer centre sounds like a good idea.  I found the BCC booklet on reconstruction useful too. I did not want reconstruction before first mx (for DCIS).  Then had to have second mx shortly afterwards and even more sure I did not want reconstruction as I did not want any more surgery and long recovery times. Unexpectedly needed chemo and radiotherapy after second mx as there turned out to be invasive cells that side so not having reconstruction turned out to be a good thing for me.     I know I won't bother with reconstructions now.  Like you I was on the small side and I get on fine with the prostheses and pocketed bras (or sometimes I don't bother and go flat). I do have silicon prostheses but often I use lightweight foam ones. However you are younger than me and it is a very personal decision. One thing I found really helpful was knowing that it is possible to have a delayed reconstruction so if I had changed my mind the option would have been there.     Best wishes making a decision and do enjoy your graduation.   ... View more