Hi Anna
That’s dreadful to keep you waiting so long but try and enjoy Easter, easier said than done I know, plenty of Guiness will make it seem better and you can console yourself that you are doing it for your op!
Take care and will be thinking of you on Wednesday. That clinic is always so busy and he’s always about 45 mins late with appointments so don’t rush to get there!
Love
Beverley
Awaiting results Hi there, this is my first message and hope that someone can offer me some help. I have recently been diagnosed with DCIS high grade. I had a WLE to remove 2.1cm DCIS and surrounding tissue. I am trying to remain positive but was wondering if anybody has been initially diagnosed with DCIS, had it removed with surrounding tissue but then been told that the margins were not clear? I am going back for my results on Wednesday and am trying to be positive but can’t help thinking ‘what if’.
Here’s hoping that someone can let me know of their experiences.
Thanks,
Michelle x
DCIS yes, that happened to me. there is really nothing i think that makes the awful waiting any easier…that was undoubtedly the worst bit. i had four WLE’s in the end but they still couldn’t get clear margins so i had a mastectomy and recon. it was one of the hardest things i’ve ever had to accept…but i knew that my surgeon had tried as much as he could to save the breast and there really was no alternative. however it meant i didn’t have to have chemo or rads so once i was over the surgery that was me finished with treatment…for ever, i hope!..i had no symptoms, but had only got to the clinic because of a cyst in the *other* breast, and i do wonder how many other people there are walking around with DCIS that they don’t know about until it starts to do things…so maybe we’re the lucky ones, although it didn’t feel like it at the time!..
Hope you had a fun easter!! Hi Beverley
Hope you have had a good time in the lovely weather…we have had a lovely easter until i decided to spend the majority of today in tears…have had an annoying cough for a month now and have convinced myself its spread to my lungs…irrational i know but a thought that wont go…wednesday still seems such a long way away…its been really relaxing not having the children here and at least i have next week to myself…still no date for the mastectomy and recon…despite the fact in order to meet their targets it has to be within the next 2 1/2 weeks!!! What did you wear in hospital post op…must be tricky to have anything on with drains coming out of 2 areas…also how often after discharge did you have to have your wounds etc checked?
The other thing was …how often will they mammogram your other breast, is it yearly?
Sorry this isnt a very cheery post.
Love Anna xx
Just the same! Hi Catkin19!
Thanks for your reply. Can you remember when you had your original biopsy what grade and measurement your DCIS was? I also had no symptoms and like you, I was referred to the clinic with concerns with my left breast (which turned out to be fine) and they actually found DCIS in the right breast after the mammogram.
How long is it since your mastectomy and how are you doing now? Hope all is well.
Michelle x
DCIS hI anna
I had a mastectomy with a tram flap reconstruction…that was 11 weeks ago and i am just starting to feel well although my tummy is still odd! I had to have three weeks of radio therapy because in the 15cm DCIS they found 4mm cancer and i have now been taking tamoxfin for 10 days and certain side effects just seem to be starting …feeling bit nausea. Glad had re construction though but certainly am taking my time to feel good . Hope this doesnt put you off
angela
Hi Anna
I had a lovely Easter sorry yours was not so good but glad you have now got time to think about yourself without the kids. There has been a terrible bug going around nearly everybody, including myself, has had it and it leaves you with a bad cough for weeks so I should imagine you have had that. They didn’t manage to meet their targets with me and my op. I was dx on 16th June but had my op on 27th July apparently it is very difficult to organise three surgeons to operate at the same time but I would keep phoning Miss Sassons secretary for news I wouldn’t have heard till one week before the op if I hadn’t have phoned. My surgeon was Mr Haywood but Miss Sasson operated on the tummy part of it so maybe they will do the reverse for you. I did the wrong thing in hospital and took nighties that didn’t open up down the front which is fatal as they are permenantly wanting to look at the top half of you! I wore the hospital gowns till the Sunday, had my op on the Thursday seems to be their day for operating, as you are not getting up really until they remove the catheter, the drains you can carry around with you. So a nightie that opens at the front would be ok. Make sure you have baggy tracksuits for coming home and a baggy top. Your tummy will be swollen for a few weeks and I couldn’t do my baggiest trousers up for a while and they send you home with padding around your breast to keep it warm.
I asked Mr Pain about mammograms after I had been told I wouldn’t have one for two years. When I said that as DCIS is not always noticable by a lump etc I would prefer one more often and got him down to 18 months but I am thinking of paying to have one done yearly. Having been on many web site from Australia to the USA I note they have them every year and I can only consider that it is financial problems that are stopping them from happening here.
Not long now till Wednesday and maybe you will get news of the date of your op and push Mr Pain for a yearly mammogram.
Love
Beverley
Thanx for info! Hi Beverley
Thanx for all that info…primark and button fronted night attire here i come…im going to ask for a mammogram on left before op as its been a year and i keep getting sharp stining pain and its a bit lumpy…not that it showed anything on right!! Do you have daughters? And how do you find out if its a genetic type…i know rosie is only 2 but id like to know if shes at risk!!
Did u buy an extra big bra to contain padding when you went home?
Baggy trousers on the shopping list too.
Yep Miss Sassoon doing boob and Mr Haywood doing tummy bit…i think! I cant see mine happening until May at least…infact when she looked in her diary she had no space til july…hope i dont have to wait that long!!!
Will let you know what happens 2moro.
Thanks again Beverley
Love Anna
Hi Anna
Yes I have a daughter she’s 25 and she’s going to see Mr Pain at the end of this month to discuss if she is at risk. My husband’s mother and sister have both had benign lumps and we are concerned that with my problems as well that will increase her risk. I would think they would not do anything for your daughter until she is much older and who knows what advances there will be by then.
I bought some soft bras before the op but, because my breast was swollen and is still bigger than the other one, my daughter was very good and, with the help of an assistant, brought home half of Marks and Spencer for me to try on! They were very good about returns when we accidentaly damaged a couple of boxes.
I heard today that the op to change my nipple and tidy up my scar on my tummy should happen in May. I’m now getting worried that I should leave the nipple alone and just get on with what I have. I could end up with worse but then I think if I don’t try will I regret it! Mind is going round in circles.
I am sure they wont leave you till July if they managed to get me in in 5 weeks or so when everyone was taking holidays all over the place they’re sure to fit you in.
I am sure all will go well tomorrow. Have you thought of talking to him about leaving the nipple. There have been a couple of women I have read about who had their nipple taken off, tested during the op to see if there were any cancer cells there and had it replaced if it was all clear. Miss Sasson said to me she thought he was nipple phobic!
Take care and I will be thinking of you and hoping you are ok.
Love
Beverley
Nipple phobic…!!! Hi Beverley
You do make me laugh…which is great…i thought he was leg obssessed…his first ever words to me were “fantastic tights and boots”…i shall definitely ask him about nipple testing…although the fact that i have had 18 months of discharge would probably suggest that the nasty little cells may well have infiltrated it!! If my op gets delayed we could end up in there together!!!
I shall definitely ask him about genetic testing as my gg grandmother, g grandmother and aunty have all had it…now me thats just my grandmother who missed out…
So what are they planning with your nipple? Im still not convinced i want one…the one i have at the moment doesnt go erect any way because of all the duct removal ops so it only looks like i have one anyway…will you have to be in long as they are doing nipple and tummy scar…what happened to tummy?
Adrian has just reminded me 2 ask when you have 2 go back after discharge??
Hope you can make a final decision re nipple…
Love Anna x
Fantastic news!! Hi Beverley
Good news at last…like you my lymph nodes are fine…what a massive relief!!! He also mammogramed and did US on left which was clear. Still no date for op so i am going to ring breast recon nurse…Phew…
Anna xx
Hi Anna
That’s absolutely brilliant news. Now you can concentrate on the op and getting better.
You asked about follow up appointments. You will come out of hospital on the Wednesday a week to the day that you will go in, if they keep to the same days as before. The following Wednesday you will have an appointment with the dressings clinic and the Wednesday after that and all being well nothing till a follow up appointment with the plastic surgeon, I waited 3 months but I believe Miss Sasoon tries to see you in 8 weeks. For Mr Pain as there was nothing too bad with the results from my mastectomy I saw him on the same day as the second appointment at the dressings clinic, long day that day I was there from early morning till early afternoon. Now I will see him every six months for the 1st year, don’t know after that I think it may be yearly.
I will only be a day case for my op so unfortunately I won’t be in with you. It’s not a major thing with my tummy, at the ends of the scaring, where they have tried to pull me closed tight I now have dog ears that stick out so they are going to extend the scar further round my side and hopefully everything will be flat. I also had an overgrowth of skin on the scarring around the nipple area so they are going to trim that back. As my breast area, and even parts of my tummy are fairly numb they are going to do it under local.
Now you can feel relieved that everything is contained in your breast go out and enjoy the sunshine and the time you have before the op but do keep pestering them for a date.
Have a good weekend.
Love
Beverley
PS As you like a good laugh I thought I would tell you about a doctor who was working under Miss Sasson. He came to see me the night before the op and asked if he could examine me, I said ‘yes’ but he said first he must confirm my name because he had just gone to a lady in another bed thinking it was me examined her breasts and then found out she was in for a tummy op! He said he was traumatised, I said I shouldn’t think she felt much better! It kept me chuckling all night.
Love
Beverley
Hi Beverley Hee, hee, I shall keep an eye out for him then…rang the plastics waiting list people today…said oh yes we were discussing you yesterday in our management meeting but im afraid we still dont have a date…oh fab.
You were right about nipple phobic…he wouldnt even discuss the idea.
Did you have to get any special type of bra post op?
Oh well heres hoping i get it done before june!!
Anna x
Hi Anna
I was told no underwired bras for a month so I bought a bra that looks like an underwired without the wires if that makes sense. Marks and Spencer do a cheapy range that is both underwired and without. If you go on N and N web site to patient info and go on, I think it’s, leaflets and then on plastic surgery they have a bit about bras post op. They also have a far better way of measuring yourself for the right sized bra. I’ve always followed the rules from magazines and newspapers but I was a totally different size when I followed N & N’s instructions and the bras fit so much better.
I’m going to place a bet that your op will be the beginning to the middle of May. You haven’t said what grade your DCIS is, mine was high grade and I assume that that will have a bearing on when they get you in.
Have a good weekend. Mine is going to be spent painting a house not my most favourite pastime!
Love
Beverley
Hi Beverley Hope you arnt too worn out from your weekend of decorating…i had a lovely weekend and picked my little ones up from my mum and dad at Andover…kind of half way from exeter…worn out today after a day at the dino park!!
Still no news re date…cancer was diagnosed nearly 4 weeks ago now…not feeling as stressed as i was but feel really horrible walking round knowing its still inside me…no one has mentioned a grade so i presume that means its low…mr pain just refers to it all being insitu.
I had alittle look on internet re targets and they say 2 weeks from decision to operate…a month at most because of the stress the waiting causes. Yours was 5 weeks wasnt it…how long before op date did you know??
Thats for a mastectomy alone tho…i suppose its a logistical nightmare 2 co-ordinate 3 busy surgeons…
Im also getting quite alot of pain again in the mass and it appears bigger…maybe the discharge has started again…cant get out now as all my ducts attatched to my nipple have been removed!!! Maybe its backing up!!
Oh well trying to forget about it…dreamt the other day that simon pain and i went to london on the train together to have the op done down there!!! Maybe it was a premonition.
Have bought my button fronted primark nightshirts and non underwired bras!!
Thanks for all your very useful info…its been great.
My little girl asked me if my new boob would be a barbie pink one!!!
Bless…shes pink obsessed!!!
Love Anna xx
Hi Anna
I love the idea of a barbie pink breast! We have had a busy weekend as well as doing a house up we are selling ours and our daughter has sold hers and she’s moving into another house and half her things are in our garage. Stlll who wants a quiet life?
Perhaps you should contact the breast care nurse about the pain you have it might get you along quicker on the waiting list if nothing else. I heard about 3 weeks before the op but that was because I made myself a pain(ha ha) by constantly ringing up the consultants secretary otherwise I they rang me up about a week before. I know what you mean about feeling horrible walking around with it. I used to look at my breast and think - well don’t really want to see you go but I don’t like you there- I sort of wanted the op but I didn’t.
Long time since I went to the dino park. My son went to a party near there a few years ago ( very drunken) and somebody thought it would be a great laugh to take the neanderthal man and lay it next to a boy who had fallen asleep drunk and see what his reaction was when he woke up!
Hope you hear soon about the op. Let me know your news.
Love
Beverley
D Day announced Hi beverley
D day 10th May…admission for perforator scan 9th May…phew…relieved and now scared at the same time…3 weeks today!!!
Organisational chaos begins!!!
Love Anna x
Hi Anna
I should have placed money on that bet. I’m so glad you have a date. I know that during the waiting time for my op I just wished that the time would get here and it would be all over and done with.
When you have had the op you will find that it will take a while to get full mobility of your arm. If you live near Norwich there is a yoga class for women who have had breast or gyne cancer. I went to it from 6 weeks after my op till I had to go back to work, it’s on a Wednesday morning,and it is great for gently stretching your body and they fully understand any limitations you may have - come to that any yoga teacher would be able to help if you told them your problems.
I will be away visiting my mother in law when you have your op but I will be thinking of you.
Take care.
Love
Beverley
Thanx Beverley Enjoy your time at your mother in laws…will let you know how i get on…will try and organise care for rosie so i can do yoga…
Love anna x