It's in the detail.

Maizie Really sorry to hear you now need chemo & tamoxifen. I had HER2+ & was forced to have chemo too, as you can’t get the herceptin without it. It’s hard to get bad news drip fed, even if there was no other way, because you just feel you’re coping then get something else thrown at you to deal with.  It felt like another set back to me. Take care of yourself xx

Yes I agree , its all very frustrating and a rough road to travel.  I was never offered the choice of masectomy for a 25mm oestrogen positive tumour was told I would have lumpectomy. I am concerned as I had routine mammo and they missed the tumour , I found it myself. I said I would prefer more tissue taken as my health was more important than looks but they said not necessary.The cancer was  graded as a 1 then more tumour samples upped me to a grade 2 but lymphs were clear,which they often give chemo for. I was tested with an Oncotest and they decided that there was no point in doing chemo as hormone treatment and radiotherapy would suffice. Onco is no guarantee but an indication of how the cancer should be expected to react. I am now nearly 5 weeks post radiotherapy ( op early March)  and had wet peeling and raw nipple for weeks and signs of interior bruising and its hard to walk from pain and I have lymphedema in the breast because of radiotherapy damage and I am concerned about infection. No one tells you much about the treatments.

I agree the waiting is absolutely awful and so is the lack of info. I also find I get alot of contradictory information from different professionals which isnt good.  T he most recent being to massage the breast for lymphedema by surgeon and not to massage until radiotherapy damage settled by lymphodema nurse. Also told by clinic to come off Tamoxifen for 6 days and not to by GP anf Gyno re urethra pain and UTI.  It can be very confusing and makes you lose confidence. I do howeve have a nice breast nurse who is kind and professional and she told me about the 5 year tablets very early on at my first results appointment so wasnt a shock for me but she only works a couple of days a week so not always there for discussing all problems. 

I hope your treatments go well and you will be feeling better very soon. 

Take care.

xx

Thanks for your reply.

I have started to feel that there is a reason for information not given.

 1 is nurses attending with consultants have a psychology degree and way up the situation on a clinic visit.

2 a psychologist has done in depth investigations into Women and their reactions to hearing they have cancer.

3 why give out detailed  information when it may not be relevant.

4 no matter  what is said about breast cancer women are still not strong enough to take everything on board from the beginning.

5 it's possible that giving the news to family and close friends and then going back to contradict your previous conversation is a way of making you feel and them that your news had a worst effect tHan was first thought.

6

give me time I'm learning fast, it may be too much to write in the first instance. Please feel free to add.

To share is good

xx

I just wish they would tell us what we may need.  At my initial diagnosis I was told Mastectomy but unlikely to need chemo or RT.  Went back 2 weeks later when biopsies back and I needed everything!  So my list of questions was largely irrelevant.   

Hi AnnJac

I totally understand, my daughter came with me and my husband on clinic visits, when I was told that I would need chemo at the last breast clinic  my husband was so thankful she had been with us, otherwise she and our son would be thinking we hadn't listened properly or asked the right questions.

when you have family it totally involves them for support, planning and help.

keep well 

Hi Pat can I ask what you do for the lymphedema in your breast to try and get swelling down. they say my breast is really badly scarred inside and lymphedema in it which if I don't watch can turn to cellulitus. im on my fifth lot of antibiotics this year and put ice packs on to try and get swelling down. waiting to go to lymphedema nurse but been told it will be a few weeks till I can get in. I finished radiation last August. thanks x

Hi Kirsam

Sorry you are still suffering nearly a year after your radiotherapy. I don’t know your exact situation, so you’ll have to use your own judgement on when/whether to use the following. My friend had bad breast & arm lymphoedema & had something called Manual Drainage by a physio.  It was a bit weird, but worked well for her. A physio would do it. She has written an account of what it’s like on her blog. I’ve been told off on here for pointing people to helpful pages on other sites, so PM me for details if you’re interested.  I developed fibrosis (scarring) 2 years after radiotherapy. I did a lot of research on what treatment is available for fibrosis. My oncologist said nothing, you just have to get on with it. However I found research showing that there are 2 things that work. The first is physio releasing the tight scar tissue.  I’m not going to lie to you, it was really painful as she detached the scar tissue from my rib cage & brachial plexus (nerves under your armpit) BUT it was worth it it as the texture & shape on both sides are now the same. I probably had 4-6 sessions. I paid myself but I don’t see any reason why you shouldn’t get a GP referral as NHS treatment caused the problem.  She gave me a device to do it myself, but I still have to have maintenance sessions every 2-3 months & that will probably be life long.  I’m sure some people couldn’t be bothered, but scarring continues to get worse in some people & my physio said it can eventually creep around your back & interfere with breathing & movement in the worst case scenario, so it’s not just about the aesthetics of have one tiny shrivelled up boob. The other thing that allegedly works is Low Level Laser Therapy, which would be much less arduous & painful, but the research was done in Asia & l haven’t found anywhere in the UK that would use it on breast tissue (it’s used as standard to remove scar tissue elsewhere). Massaging daily in small circles can also prevent to build up of scar tissue & help the texture.  Sorry to be so long winded, but I only managed to fix mine through my own research & efforts & I think women should know that there are options. All the best xx

PS what the physio did also got rid of the perma pain under my breast x

My Haven masseuse works with women who have had breast cancer surgery 5 days a week and she did the same with my mastectomy scar which has a few adhesions. Daily circular gentle massage along the scar.  She also suggested very gentle inward strokes towards the scar itself.  It has helped,  but I think it's a case of stopping it getting worse before my reconstruction next year. 

Hi scars good on blobs, however a bit raised and lumpy on instep surgery. Small firm circles with. Rosehip oil worked really well. It's just a faint white line now,a year later. Daughter in law also used rosehip oil on keyloid? section scar at it improved a lot.