Newly diagnosed with DCIS
Newly diagnosed with DCIS I have started this topic on behalf of new user annafiz
Kind Regards
Forum Host
Breast Cancer Care
Hi everyone…
I found out yesterday that I am to have a mastectomy in 4 weeks time, lymph node biopsy friday…I have had problems for 18 months and am on my 3rd consultant as the first two said there was nothing wrong with me. The two duct biopsies and deep needle one have shown pre cancerous DCIS however it has pretty well spread throughout the whole right side of my breast hence the planned mastectomy…I am to see a plastic surgeon tomorrow to discuss immediate reconstruction but am really worried about the lymph node results and what theyll actually find in my breast once its all removed.
Anna
Hi Anna
I had DCIS dx last June which was 150mm, my whole breast, I had a sentinal lymph node biopsy done before I had my mastectomy because I wanted to have an immediate reconstruction. If it is all DCIS it is not likely to be in your lymph nodes but because mine was extensive, like yours, they had to be cautious. After the mastectomy they found I had only a small amount of micro invasion which they didn’t seem bothered about as my lymph nodes had been tested. I have had no other treatment apart from follow up checks. I had my lymph node op 5 days before I went to see the plastic surgeon and he gave me the results. When I said how relieved I was he told me the breast surgeon must have been pretty confident that the results would be alright otherwise they would not have sent me to talk about immediate reconstruction. I know that I seemed to spend from mid June to mid August (when I got the results of the op) worrying, it is a dreadful time. I hope your results come out as well as mine did. Will be thinking of you on Friday.
Love
Beverley
Youve helped me feel better already! Hi Beverly
Thank you so much for your message, just to hear a story so similar to mine with a positive outcome really helps. I am now desperately trying to read all the reconstruction information before I meet the plastic surgeon tomorrow at 1pm…pretty soon following my consultation on monday when I got the bad news.
Do you mind me asking what type you chose?
I seem to be looking more at the abdominal fat / skin reconstruction…if theres enough fat there to make a c cup!!! as opposed to an implant!!
All seems a bit sudden and frightening…and I know I wont relax til I know my lymph nodes are clear…I really hope its only 5 days for my results as the last 16 days since my most recent op has felt like a lifetime…its just the not knowing thats so terrible.
Anyway thank you once again!!!
im hoping I will actually manage to sleep tonight.
Anna xx
Hi Anna
Hope your meeting with the plastic surgeon went ok . I had a DIEP and it was touch and go if they had enough fat to make a new breast. I put on half a stone for the op. The plastic surgeon on the morning of the op said it was going to be the tightest tummy tuck he had done and I probably wouldn’t stand up straight for three weeks! In the event he was right and every time I stood up I looked like an old lady trying to straighten up but it was worth it I now have a tummy that is so flat. There is an op where they take the fat from the bottom if there isn’t enough from the tummy, they were considering it for me.
Good luck for tomorrow. Let me know how it goes.
Love
Beverley
Just realised we are using 2 forums!! Hi Beverley (again)
She thought I might not have enough fat until I took my top off and revealed my (had two babies in four years) wobbly tummy, apparently theres enough as long as I dont loose too much weight before now and 4 weeks time!! cant say im very hungry at the moment as still a bit in shock…trying my best to eat chocolate etc tho…its seems weird having pre cancerous DCIS… as i feel a bit odd and not sure about saying I have breast cancer…its a bit of a middle ground…but then I realise im having quite a massive op which even not all invasive carcinomas require…makes me feel a bit strange…or am i just being odd!!
Will keep you posted re 2moro.
Love Anna xx
Hi Anna
Yep just realised I have been posting to two places.
I too feel very weird about saying I have had breast cancer but when I breathed a sigh of relief on being told I had non invasive cancer the doctor said ‘but it is still cancer’. When I finaly had the mastectomy they found out that I had some micro invasion, which means it was about to turn invasive, so they caught it just in time. I have since been sent a questionnare by the hospital asking about how I was told I had cancer, and been asked to take part in a study on breast cancer patients by Cambridge university so I figure it really is breast cancer. It luckily is almost always cured.
Take care tomorrow.
Love
Beverley
p.s Forgot to say, over the two and a half weeks of diagnosis, I had five core biopsies as well as the lymph node biopsy, I lost a 1/2 stone in weight. I put it back on again by having chips at least 3 times a week and drinking a pint of guiness 2-3 times a week, Miss Sasson is supposed to swear by it - the guiness that is !
Beverley
Bring on the guiness Hi Beverley
Love guiness so thats a plus…having just read the NICE guidelines for an urgent referral to a breast clinic…im a bit panicky…for 18 months ive had a massive lumpy area of breast, discharge which became blood stained…pain, inverted nipple…from what ive read i should have been referred immediately in nov 2005…it really worries me that its been in there for 18 months…and has taken 3 consultants to take me seriously as my mammogram was normal…apparently they are pretty unreliable in younger women…i was 36…they dont rely on them under 35!!! oh well trying to be positive not bitter…just having a bad day…to be expected i suppose…sending my hubby out for guiness 2moro…Miss Sassoon did mention it more than once!!
anna xx
Hi Anna
I had noticed changes in my breast over a year before, my breast had always been very lumpy and some parts of it seemed to become less lumpy so I thought the change in shape was down to the menopause, I was 49. It wasn’t until a whole disk shaped area became very hard that I was concerned - even then I left it until a routine mammogram 6 weeks later to mentioned it. I don’t know if I was in denial or what I’m normally so hot on getting things checked. The dr doing the biopsies thought it was invasive because of it being so widespread and I got my results in 4 days instead of the normal weeks wait. I still beat myself up about it I was so close to it being very serious. We seemed to have been lucky but you will still have bad days, I still have the occasional bad day and my op was 8 months ago. The waiting for the op, 3 week wait, I found very hard but I decided to enjoy myself as much as poss, I went to a summer ball and a bbq and danced all night and in the last few days before the op we had a few days away and went to Alton Towers, I’m a theme park junkie, sad at my age! and it certainly helped.
Hope all goes well. Be kind to yourself.
Love
Beverley
Home!! Hi Beverley
Home…no pain just a bit weary after a 5 hour wait for a bed and a further 5 hour wait to go to theatre…hideous 10 hours…still had my usual sandwich, yogurt and biscuits as soon as i got back to the ward and managed to escape 90mins later…just pigged out on curry, had a bath now bed…7 to 10 day wait for results!!!
Will let you know…
Thank you for being so kind it means alot!!
Anna xxx
Hi Anna
Glad all went well… apart from the waiting. On the day before my main op I waited 3 1/2 hours in 100 degree heat for a bed, I nearly died of heat stroke before they got me to the theatre!
This is going to seem a very long 7 to 10 days but I am sure all will be well.
Take care
Love
Beverley
Good old N and N!!! Hi Beverley
That sounds hideous…glad im having a spring op!!!
Having second thoughts about a new nipple…might just have a tattoo and a prosthetic one for the colder months…
Love
Annax
Hi Anna
They didn’t tell me they were going to do an immediate nipple reconstruction so it came as quite a surprise better ask them if they intend to do the same for you. Unfortunately one part of it didn’t go well but I’m still going all out to get one that’s right, although I keep having days where I wonder if it might be best to leave well alone as things might turn out worse. The prosthetic nipples always worried me that something awful would happen like it would end up on the end of my husband’s nose! Give us a laugh tho’. The only problem if you have to wait for a nipple is that you feel that you are constanly waiting for things to be done I just wish everything was done and dusted.
Hope you are feeling ok.
Love
Beverley
Feeling rubbish today Hi Beverley
Feeling really tired and emotional today…have to keep reminding myself that ive had 3 general anaesthetics in quick succession so that probably doesnt help!! Also found a painful lump in my left boob over the weekend too…hopefully nothing but thats how it started on the right…rang the breast surgeons secretary she left a message to say that biopsy results should be back tomorrow and hell be in touch re both things…i hope i dont just get another appointment letter i would much rather he rang me or arranged appt over the phone!!! My positive mental attitude has got up and gone…to be expected im sure!
Miss Sassoon is planning an immediate nipple…did they do the twisty skin thing with you…
Better go screaming kids and fruit pot thrown all over the kitchen…time for a double gin and tonic and a headache tablet
Love Anna
xxx
Hi Anna
Having a general anaesthetic really does take it out of you. On top of that there’s all the worry of results and the op that’s ahead. Unlike me, whose kids are grown up, you can’t just go and have a quite time to sit and reflect whenever you feel like it. Try not to be superwoman and do all the things you would normally try to do. Get the kids into bed early have a long hot bath get out some beauty products and pamper yourself. Give yourself some TLC.
Hopefully the breast surgeon will let you know the results tomorrow, I hope so and it is best to have the other breast checked out, if for nothing else, to stop the worry. A gin and tonic sounds a great idea, get your husband to bring it to you in the bath and then lay in bed and get him to bring you dinner! My husband can’t cook but he serves up a mean beans on toast.
Be kind to yourself.
Love
Beverley
Forgot - I’ve no brain at all! The nipple reconstruction was done with the skin from my tummy that showed through where my nipple used to be. They did a few cuts, I think, and pulled it up… If they do it at the same time as your op you’ve lost nothing in having it done.
Beverley
I will give the nipple a go!!! Hi Beverley
My husband has got me drinking sloe gin now…very nice especially with lemonade…except i drink it like lemonade…the children are going to stay with their grandparents in Devon on friday for 9 days…a bit of a break…phew…i just dont seem to have any energy to deal with normal naughty behaviour and have started ranting and shouting at them…not very fair on them as they are only 2 and 4!!
Adrian (husband) is being fantastic, very supportive, helpful and luckily for me a fab cook!!! He takes over with the babes as soon as he gets in and i lie in the bath!!
Time for bed as going to birmingham at 6.30am 2moro!!! At least i can sleep on the train.
Anna xx
Any News on your biopsies? Or are you still in Birmingham?
Beverley
No news !!! Hi Beverley
No news …rang Mr Pains secretary yesterday and she said delay on results…therefore because of easter i wont know til wednesday when she has made me an appointment for me to see him!!!
Oh well… trying to put it out my mind til then…12 days is quite a wait tho…
anna xx