Thank you so much for your replies, it means a lot.
I've been mulling options over and would welcome your thoughts.
I know I need surgery asap to see what's going on, have scared myself senseless with reading posts about what else is lurking when they do the pathology reports.
It took me along time to aggree to surgeons rec of double mx but felt it was the right decision as high grade DCIS, large area 6 x 4 cm, LCIS near by and family history and my age 49.
But now although this is what I'd still like wondering if I should take a different route to MX.
As 2 surgeons have expressed concern re double MX and complications wonder what anyones thoughts are on:
Therapeutic mammoplasty to both which would remove the DCIS and LCIS.
Then see what's in pathology and if all ok move to double MX.
As they all seen obsessed with the size and differing size of my boobs wonder if staged reduction would be better?
Reasoning is the first surgeon refused to do double MX saying too aggressive for DCIS, he wanted to do reduction and radiotherapy but said if margins weren't clear the first op would make mx much easier operation.
Sorry for ramblings but fed up and confused xx
I really feel for all us going through this decision making.
Re reconstruction, I was advised best option was tissue expanders then inplants with option of DIEP at later stage. Feel this is still a good choice for people who are unsure.
I've got high grade DCIS, large area 6 x 5 cm, diagnosed in Nov 14 and still not had treatment.
After much thought booked in for double MX and tissue expanders next week.
BUT bombshell at pre op meeting this week.
Didn't start well, surgeon asked me to remind him what op he was doing.
Then decided half way through the exam to say actually I won't do double mx now only single and see how you get on.
Shocked was the understatement as he has recommended double MX from the outset due to recurrence rates, droopy boobs !! and different size boobs, it just gets more flattering.
Nightmare afternoon followed though had support of fab breast care nurse who was appalled.
Nothing has changed, have even managed to lose 7kgs.
Eventually after much discussion between him and BCNurse he said he would reluctantly do double MX but if I understood complications.
So now I don;t feel I can trust a surgeon who has so little disregard for his patients and changes his mind at whim.
Researched surgeons so carefully, he is world renowned, works in London and has been in the press recently for treating a high profile patient who had a world renowned blog and tv drama based on her life.
BUT feel I can not trust a person who does this.
Now have cancelled the operation and am back to square one.
Love to you all xx
I know, I know - should be clear of all this now as no further treatment required, but it's really getting me down
So Thursday is a little step
Thanks Sarah had forgotten all about them
Another sore patch found. Now have silver dressing on it as well as massive plaster type ones.I have been given some antibiotics with a great long list of possible side effects. They have also taken a swab and back on Thursday for results, dressing change and to see if antibiotics have had an effect
I suggested Manuka honey as well - was told only as a last resort!
Will go with what they say at the moment - don't really know any better - yet!!
Bad news - another patch broken out- new boob is now covered in more dressing than it ever was after the op.
Back to hospital on Monday
They do say that there is no sign of infection though
Bit peed by it all!
Another hospital visit this afternoon.
The place where it wasn't healing seem to be much better, but it is so covered in dressing I haven't actually seen it
I have found I can do the exercises now without that awful pulling pain I was having so fingers crossed I will be dressing free later today
Feeling better after a pedicure, which I had since I mustn't have nail varnished fingernails on Thursday. Talking about it has made me much clearer in my head that I do not want an implant. It is too late to change to a double reduction on Thursday, but lets see how necessary it is anyway after all the treatment! The real nub of it is that there is no solution that is going to be the perfect solution, its just making sure I get the best one for me. That's going to be about the fewest number of ops and least amount of fiddling around. I'm ringing the nurse later, and this is really all about if they needed to take the whole breast, but if they are talking about a quarter of it now, that would be a massive increase and that is not likely. I can't stop thinking what a luxury it is to be able to have all these options to consider. My life, very luckily, is not in danger. I have a lovely family who are all desperate to help me, and I have been diagnosed in 2015 when treatment is very good.
I huffed and puffed about an implant and then decided to have one at same time as mastex. I am surprised, now the swelling has gone down, how much smaller it is. I have been told I can have the other side made to match but it is best to wait for the side that has been done has settled down so a good match can be made.
Couldn't keep my nipple as one of the Beasts was right there, and I'm well beyond breast feeding now. Don't really miss my nipple but then it's where I found the lump so as it's not there means Beast isn't there!
I really think you need to talk to someone about your decision, It is too late to cahnge your mind only when you are in the Op.
Talk to BCN, consultant, GP, Macmillan, BCC but do talk to someone please
I'm having 3 lumps in left breast removed, and all my lymph nodes taken out too on that side. That side of things weirdly doesn't worry me, and I don't feel worried about having a breast covered in scars - strange eh? Masectomy and immediate reconstruction with implant was suggested in case breast was too reduced to match the other side, but I don't think I could bear any sensory difference in weight or movement, so they said after all the treatment I could have the other breast have an implant too, which to me makes it twice as bad!!! I asked for a reduction which they say is doable - I have an E cup and they reckon they will be taking about a quarter of my breast away so I will still have shape, but it will be smaller than the other side until/if I have that side reduced. If I was going in on Thursday to have that op having got through all the cancer treatment, I know I wouldn't be able to make myself do it, so AAAAAAGH!!! They are being all cheery about having perky little boobs after it is all done and all I can think is, I don't want any of this so stop being cheerful and bossy. The nurse is saying that long term two ops will give the best outcome. There is also no way I'm brave enough to have them cutting any other bits of my body up either. I HATE THIS. I didn't sleep much last night worrying about something going on with my son at college, so I'm not good today.
I've had a cry today too. Surgery on Thursday, and don't think I have made the right decision as regards reconstruction for me. The options I was offered were all about implants and the idea makes me cry, so I asked for a reduction on both sides at the same time, which they were prepared to do but advised waiting until after all treatment to have the healthy side done. I accepted that advice, but I don't think I will ever be going back for an operation unless it was for more cancer, and I really, really wish I had asked for it all to be done in one go and then lived with the potential lopsidedness. I used to have a nightmare when I was breastfeeding that something would happen to my nipples and they would fall off (!!!!) and now they actually are going to be cut off and reattached and the idea of THAT makes me want to cry too. I mean who needs nipples when you are 49 and you've done all your breast feeding and not feeling that you are going to be getting anything out on a topless beach ever again anyway. I honestly feel at the moment that I would rather be flat on both sides when I wake up on Thursday so that I don't have to have any more surgery. Everyone keeps telling me that I will change my mind, but the idea of waking up and having a lump of something on my chest makes me feel sick, so how can I be so wrong? It feels as if there are no good solutions available for me now. Perhaps that is just part of having breast cancer, and I had better get used to it!
These ops don't seem to go smoothly. I have been back to hospital again today as one wound that was aggravated by the allergy is just not healing and then I found a hole i it.
They have said it's not the implant, but the wound is breaking down!
A dressing has been put on, keep it dry but it will leak! Back to hospital on Friday to see how it's going.
3/4 hour journey each way each time
Not feeling too bright about it all at the moment
Have showered the scar to 'debride'? 'debrade'? LOL - I think they call it and put on a sterile dressing smothered in 12+manuka honey. Prob best not to tell the doc, but it is looking a lot healthier. Well it worked for my cat when he had surgery after a jaw abcess!!
just returned from hospital. Seems I'm having an allergic reaction to micropore which i was told to put on scar to help its look.
All has been cleaned and treated and dressed but have to rely on bra to keep dressings in place as can't have micropore
Thanks for this advice.
Managed to get an appointment at GP, then phoned BCN who said come into the hospital to see consultant, so am going there this afternoon and have cancelled GP appointment
Will have to contact BCN tomorrow - why does it always happen on Sundays - wound where it was sore is weepy and yuk this morning with stains on bra when I started to change dressing. Cleaned it up with wipes, clean micropore. Will phone tomorrow
Good for you Matty, speak to BCN if you have quiries. My recon felt strange at first, lots of prickling and itchy. Just get checked out when you think you need to. Everyone's different. x
feeling more comfortable with body now.
With some of the pain and itchiness I had yesterday I thought I would have to contact BCN - seems to have gone today. OH says it's just the healing process
Taking it very easy though - up days and down days but last wednesday was the worst - over it now and trying to do what counsellor said and spend quiet time away from everything and 'list' positives. Strangely so simple but feeling ok about it.
Hope all those bent double are feeling more upright now
I have plenty of spare stomach skin (plost a lot of weight last year thank goodness), but could't face such a major op.
If I hadn't lost weight I probably would not have found the 'hardening' beast which has put me on here.
Just got the dressing off yesterday so a line of steristrips across where my nipple used to be. And the huge transparent waterproof dressings over the drain sites which will come off on Monday. All lumps and bumps especially the expander port under the skin bulging out near the collar bone (surgeon said he wasn't able to put it under my arm!) which looks like he accidentally left a piece of lego in! It'll all be ok in the end.....
Tbh the worst bit of the whole experience was the anticoagulant injections which don't 'alf sting! I am such a wuss....