Newly diagnosed DCIS

I have just been diagnosed, trying to stay positive as they say once I've had mastectomy I can 'close the door on them'. No mention of removal of lymph nodes but concerned it may be worse news once mastectomy done.  I'm a bit of a wimp (and I google far too much) 

  • Jaks not sure if this breaks any rules or what but are you on facebook or whats app or something ? No hidden adgenda just feel we are excatly in the same place at the moment. Had a better day today i got my ex husband to be to take me out with the kids 19 and 14 to the cinema. crap film but a distraction ! had hoped for a meal too like old times but I think he felt that would be a step too far cheating on his gf  being seen having a meal with his wife ! and 2 kids. and Im like so what ! who cares in the scale of everthing else going on in my life now i just wanted to forget it for a bit and feel like a normal family like we had been. In the end had KFC in the car on way home ( not quite the same) but glad to get out. Hope your bank hol evening better. Ive been on the red wine, and i have also arranged a huge *** up with some girl friends fri night before I have the proper diagnosis on mon 9th ! i feel i need it ! to go out and forget I am a cancer patient to be ! and get *** rat assed while im still well enough to do it ! after all what harm can it do now eh ! oh on on the reconstuction topic, my aunty who has had hers removed and in remission said to tell them to save your nipple as they arent v good at making them. and im im like what the hell !! 

  • Hi Suzie

    Sorry not responded earlier, son took me away for a couple of days, no internet, so no googling everything I can find.  Never stopped googling things since I have returned. I am still at all the 'what if' stages.  I feel they are only telling me things step by step in case I can't deal with the full info, probably stupid I know as I think they have to tell all but I am second guessing everything they said.  Sisters say they can't surely offer reconstruction if they have not checked my lymph nodes - I never even thought of that so now a new topic to google. From what I've found some have had reconstruction and then awaited sentinel node biopsy results, I just want this to be over and know what I'm dealing with, it's a long wait until Monday.

     

     

  • Hi Jacks. I hope you had a little break. I was up watching bloody You Tube last night cancer stories blogs and diaries till gone 1am untill finally I couldnt take anymore. Like you I am being told Monday too. Ive now been waiting 10 days and i still have fri nite , sat sun MONDAY AFTERNOON. I have seen some very brave ladies but I do not feel one. Cried last night. actually put a scarf on my head and hid my hair to see what I would looke like if i had to spend months going around with a bloody scarf on my head. I want to enjoy the summer , had 2 days in the garden and ive already started to get a tan! outwardly i look extremly healthy, my lovely is is thick and shiny and i cant bear the thought of being bald. ( I cant stand bald men, im sure they are very nice but to me Guys with no hair are  NOT attractive, thats why im still single after my marriage ended, my girlfriends see it as an in house joke, " she wont fancy him hes bald" now here I am faced with it myself.) seriously if i have to have chemo im never leaving my house. I already decided I will shop online. I will go down the park with the dog near me down the road and thats all.

     

    I did not know you can have reconstruction same time as a removal either, I had learnt that on here. My aunty said tell them to save your nipple as they arent very good at making new nipples. All the time im thinking no they arent going to take it off, it wont come to that. Maybe a small op get it out and then drugs after ( i have heared of a lady locally who had just that done) is it me or is anyone else worried about the thought also of being on drugs for the rest of your life ? I am also worried i will  get very fat. Im size 14/16 a nice size for my height- i dont think i could cope if i ballooed up to a size 18 +. 

    I do feel for you Because I am in the same position I know sweet F A !!

    I am meeting a friend for coffee today, shes got depression off from work ( i feel like saying you have bloody nothing to be depressed about go back to work, enjoy the little children and be glad you have not got cancer !) Meeting another friend for tea and basicly  a P________ UP !  I FEEL I NEED  to get very drunk, no cancer talk , im going to get on a nice dress get my heels on and make up and hope we dont lend up crying ( she lost her mum to cancer at christmas so still hard for her and now her friend has it. ) but shes a v positive person I know she will have me laughing within mins of being sat down. The sat night i have my daughter aged 14 with me and sunday I need to plan something to keep busy. Then the dreaded Monday- I feel i cant rest in the day i have to be doing something making plans, anything to keep my mind off Monday im sure you are much the same.

     

    Keep In touch, Keep Busy. I am already planing on cup cake making sunday. ! im going to have the biggest steak ever tonight and i might even have dessert and most certainly 4 bott of wine with my friend at least lol. !!! they say booze not good for you. to that i say well it cant be any worst than it is now !

  • I was diagnosed with DCIS last October. It stands for ductal carcinoma in situ, otherwise an area within the ducts of your breast. My story is I had a wide excision which went ok. But my results were not clear ,the margins were not clear, which means the tissue wasn't normal, therefore I had to have a mastectomy. I had nodes removed to make sure I was clear so that I could have reconstruction at the same time as mastectomy. Fortunately this was the case and I had mastectomy and reconstruction end of January.  The nodes need to be checked first, they are called sentinel nodes . If clear I cannot see why you can't have reconstruction at the same time.  The operation itself was not too bad, uncomfortable for 2 weeks or so! I was out walking within 10 days. I don't know your age but I am 62. The appearance is the hardest bit to adjust to. I am still struggling with this but hey ho everyone has done their best. I am a nurse and I have struggled with it all but you do get through it. The waiting is the worst but keep active and fill your time. I could tell you a lot more if you want but I hope it all goes well for you

     

     

     

     

     

  • Thanks Jane for your very helpful reply. My mind is just on overdrive.

     

    i am 51, diagnosed after first mammogram.  When doctor gave me diagnosis of DCIS, he said as it was extensive (8cm) I think he said, mastectomy was the only option and I could have immediate reconstruction.  He never mentioned checking any nodes. I know when I had the ultrasound guided biopsy, they did scan under my arm, so unsure if they can tell from that.  I am meeting with combined plastics team on Monday to discuss my options.  Did you have your nodes checked befor your arranged mastectomy or can they do this during the op.  I also am looking at different reconstruction techniques and have no idea what is the best for me.

     

    thank you again

  • HI Jane. Thankyou for the reply. I am 45 with 2 children 18 & 14. ( Son & Daughter)  thankyou for making it clearer,I am yet to find out what they are going to do or what stage they it is on dreaded mon 9th but thanks to the site and all you brave ladies I have been able to gain lots of knowelege and you know they always say knowledge is power ! I feel I have to know things to be prepared for monday so i can better understand all the doctor Jaran they are going to use.

    When you say about the apperance hard to adjust to, is this because it feels or looks fake or unlike your other breast ? I have seen reconstruction pics and I can't tell which one was the fake one. Do they leave loads of scrars ? being a luck one who never had one single stretch mark when i was pregnant it does slightly concern me. especially as i am now single after a long marriage ended. 

    My friends said it might not be a removal but i fear the worst. I somehow thought if they had to remove a breast they would have to do the op, do the treatment then have the reconstruction, it does give me a bit of hope they could do the surgery the same time as the removal ( thats if i have to have it taken away)

    Went out for a blow out with the girls last night and we completly forgot it at times and even manages to laugh. I held back the tears which i was suprized considering the amount of booze we drunk ! my friend got upset though as she lost her mum in Dec to cancer so to see her friend also going throu it is very difficult for her.

  • Hi Suzie, how did things go for you today. I hope you got some answers as not knowing what you are dealing with is sometimes worse.  I met with surgeons who were very positive. I was fine when talking to them but as soon as I get home, my mind goes into overdrive.  Pre assessment on Friday  (13th!!!!) And then node biopsy on 20th, I will be on the roof at that point worrying about the results.   Hope you enjoyed your girls night.  Jaks 

  • Hi Jacks, Well i was mega stressed waited for 2 hours to be seen in hosp. In mean time mum and sister got talking to 2 nice ladies one had a head scarf and chemo going on and the other had a lump removed and radio T and she had to have more taken. So it was all very friendly and imformative BUT IT WAS STRESSING THE HELL OUT OF ME, i ran off in the loos crying !

    Went in to see the nice Doctor and he said he would like to remove the cancer -underneath mine is near ribs. Then he also wants to take some Nodes out to check they are ok.even thou clear atm ( this wed got to go for x rays bloods etc, next wed an injection in breast and an X marks the spot ! ) Poor mum has to take my dad to hosp too on wed. we are already planning a holiday at the end of it all.

    Thur next week the operation ( i asked if i can wear knickers for the op to lighten the mood and made mum and Sister laugh)  Then i have to have 15 sessions in cardiff ( quite a treck for me and i dont drive) radio Tpy for every day for 5 days a week for 3 weeks. 

    Then I hope it will be gone....

    They seem to think the boob will change shape a bit but can repair itself new tissue ( has warned the node removal will be a bit painfull and arm stiff) but she said if im not happy with it when its all over i can opt for some cosmetic surgery to have some Lipo done on it.

    I feel so much happier atm its NOT a full blow  "M" word. I did tell him ive had 2 weeks of hell as the other Doctor said "M" word straight away and aparently he should not of said that and this nice consultant said he had been spoken to. !!  Jesus if only it wasn't him on that day but the nice guy i seen today who saw me after him ( the top dog i saw today) then i wouldnt of been half as stressed out. It is true what they say about googeing too much, He said that everyone is different and so reading other peoples cases will not be the same as yours. However.... it does help to share thoughts on here with women going through the same things. Try to keep busy ok ! it does help make the time go. The weather helped on the weekend too. Like you thou lots of tears still. It is stressful but wine helps lol Suzie. ( oh and i had a Big mac meal on the way home as a treat lol)

  • That all sounds quite positive and hopefully not as bad as the thoughts that have been going through your mind.  I know, one word can change a sentence soooo much. My first consultant didn't explain my diagnosis thoroughly, he said my stage was in the middle, I saw my notes today and apparently I am high grade, though he had written 18mm instead of 8cm! The two docs I saw today were very helpful, and explained everything, my worry now is nodes being clear, if they are, reconstruction can go ahead but I'll just need to be patient and take each day at a time, and must really stop googling . I had to have photos taken today for before and after, I just thought leave my embarrassment at the door and after all, the Jordan's of this world pay to have photos taken like these, granted mine weren't as glam. You sound much more positive now and a holiday sounds a great idea once you are sorted.  Anytime you need a chat though I'll be here. I've found the odd wee glass of vino helps too, lol.

  • I think the first chat with the consultant ( the one when they have a feel and the first ultra scan) can have a huge impact. This YOUNGER JUNIOR DOCTOR who was not English was way out of order in saying to me straight away Mascectomy ! in a way a lumpectomy is a lesser removal im still going to have to go through Radio T and my boob will be mishaped and need reconstruction/cosmetic correction she called it after. But with what he said all I have been dreading for 2 weeks was my whole breast comming off !! which it seems at this stage is not the case. He said mine was 2cms so that was a relief ! he drew a pic and showed me how much he wanted to take and then if it was still there he would want to take more and was drawing pics for me to explain.

    I am suprized he wants to still take some nodes when he said mine are clear but i suppose it makes sense to check them whilst im out. Im still googling. So am I right in thinking if the nodes clear at the time they do the Op they can reconstruct at the same time ? or is it just a temp one do you think whilst they do the Radio T then you go back and they do it properly ? God i can't seem to take all this in. I tried to listen so carefully !

    I have to go back this wed for some x rays bloods etc. not sure at what point they take pics thats not even been mentioned to me yet. Not overly excited about that either. But I will bare in mind that giving birth was way more embarrasing lol.

    I must admit the more times i strip off for a doctor the less embarrasing it gets. I keep looking at their face ! I had wine last night, run out of sleeping pills and I was awake all night, v tired today me thinks.