Hello all, I went and had my WLI yesterday and everything went o.k. The surgeon said he had good margins and even bought the xray to show me whilst I was still on the operating table ( I had it done under a local ) and everyone seemed very pleased. The thing is before hand one of the nurses on the ward who was going through my details i.e name age ect had the file open and I happened to see ‘DCIS high grade’ at the top of one of the papers in there. I had no idea what grade I was when I went for the results of the biopsy a couple of weeks ago I was told that the cells they had taken were pre-cancerous. The bcc nurse told me as I was a bit tearfull ‘you have not got cancer’, but was adviced to have the wli that would be followed by rads to clear up anything else that might be lurking so to speak. I should have said something yesterday when I was there but just wanted to get the operation over with. Feeling a bit confused and worried now what will happen next. No one has said that my treatment will be anything other than rads I go back on the 9 march. Thanks for reading and hope everyone is having a good day xx
Hi Duckess.I had high grade DCIS but also had invasive cancer.DCIS is cancer cells that are contained in the milk ducts and haven’t developed the ability to spread.Some call it pre cancer.I have put a link below to mcmillan site that discribes it better.
Best wishes Melxx
Hi Duckess,
Try not to worry, i had a WLE, Sentinal node biopsy (to check if it had spread) and 5 wks of radiotherapy. I’m surprised you had your op under a local rather than general anaesthetic. As far as i know you will only need chemo if it’s invasive.
I had Grade 3 DCIS as well and was also told by my BCC nurse that i did not have breast cancer i had pre-cancer. I found this term really confusing as i had read about DCIS before my dx and had read that it was non invasive cancer. She gave me the Breast Cancer Care folder as i left and i downloaded the BCC leaflet on DCIS and it said DCIS is an early form of breast cancer… To me, pre-cancer means it is not cancer but ductal carcinoma ie cancer in situ means the cancer is in the ducts and has not spread. Why can’t we just have invasive cancer and non-invasive cancer terms to avoid confusion? I also spoke to my onc about it and he said that it is early cancer.
If it’s nothing to worry about i.e. pre-cancer why did i have to lose a big chunk of my small breast, have two lymph nodes removed and then 5 weeks of radiotherapy? I know the answer is in case it becomes invasive but i just don’t like the term pre-cancer (silly i know) but to my mind the term doesn’t justify the treatment or the higher risk of it returning.
It’s a confusing and worrying time for you, all i can advise is keep asking questions on this site and to your BCC nurse or surgeon. Why don’t you give your BCC nurse a call and ask her to go over what your treatment will be? She will understand you have been upset. Good luck and take care x
Thankyou both, I agree I wish they would speak in terms we can understand, as for all of us it is a very stressfull time anyway and a lot to take on board all at once. Best wishes xx
Oh, thanks for the link Stressy-Messy that has made things a lot clearer for me a great help x
Back again. Went for the results of the WLE last week and unfortunetly they had not got the margins. The DCIS was more wide spread than thought, I was offered another WLE but was told it could end up after that still having to have a mastectomy. I have opted to have the mastectomy as I could not cope with the keep trying for margins and all that that entails. They say it will not involve any lymph nodes and no radio therepy after. Still kind of in shock and very tearfull. Have just got back from my pre-med and have the op next Thurs. Still all the usual concerns over how I will react to the anaesthtics ect, I am having general for this one I was offered a local into the spine but I could not go through it being awake throughout. I am not having reconstruction, any advice on pain afterwards and how long to recover ( physiclly ) would be gratefull. Keep looking at my poor boob and trying to immagine what it will look like without it.
Hello duckess,
Am so with you in spirit and empathy. Am in the same place as you although have just been told by surgeon that after WLE and re-ex that there are still no clear margins and when I see him on 28th I suspect my options are going to be re-ex again or mx. am very confused about what to do. One side says its got to be re-ex to give another go and keep that nipple, another part says this could go on and on and end up as a mx anyway. Am also teary and indecisive and trying at the same time to be brave for all around me.
Its soo nice to know there are others and am not alone although it has felt that way without this site this last week!!
Stay in touch and keep your chin up…
Wandyx
Hia Wandy.
It came as quite a shock to me as my surgeon had said that they had good margins. I was awake and on the operating table when he went off with the xray and came back and showed me the area he had removed and said what he said. I felt so down last week after going back and being told it would need doing again or a mx. Myself I feel just get it over and done with, the thought of the waiting for results time and time again made me make the decision for the mx. I am terrified of the op more to do with the probs I have with meds ect. I have been feeling the same as you about the site being down, also trying to put on a brave face and sobbing my heart out when alone. Sending a big hug your way and thanks.
Duckess x
Wandy and duckess, I feel for you both. It is not uncommon for them not to get clear margins first time round, I was told around 20% of cases don’t get clear margins. I had a re-excision in which the surgeon took the equivalent of three lots of extra margins just to be sure, and it was just as well she did as only the third “slice” gave the margins we were after.
Whether to go for re-excision or not is a very personal decision, and you still have the time to think it over and change your mind, even if you’ve told them you’ve decided one way. For my own part I would have gone for a second re-excision if it had been necessary, but that’s because I was very keen to keep my breast. It’s a very personal decision and not one that anyone else can make for you.
Duckess, is it that the anaesthetic makes you feel very sick? If so, they have made tremendous progress with dealing with post-anaesthetic nausea and vomiting, and they should be able to keep nausea really well controlled.
Best of luck to both of you.
CM
x
Hello CM,
I have posted to you on another thread as well, but thanku for your kind thoughts. re-ex or not is a tricky one as I’ve already had one re-ex and so this will be the 3rd surgical intervention with no clear outcome…Sigh…
But I will wait to see what the surgeon says about why the margins are STILL not clear and take a view then.I’m being treated at the same place as you and it is remowned as a breast cancer centre of excellence so I guess I will be guided by my surgeon as well as making my own personal decision. Luckily I have a v. supportive OH so that helps.
Wandyx
Duckess,
Love and hugs to you too and stay in touch. will check this thread or pm me if you ant.
Wandyx
Hello again Wandy.
I’m having one of my ’ wish I had’nt agreed to it days to-day’. Mind keeps jabbering on with all differant senarios mainly to do with recovery after op. Also creeping thoughts of just saying leave me alone and doing nothing at all ( totally stupid I know ) and I suppose we all feel that way at times. Feeling quite the coward at the moment, have been busy out in the garden to-day something I love and feel like screaming thinking of being unwell from the surgery and any effects the medication might have. Keep reading other posts and feel so shamefull with others going through so much more. Sorry for the grump how are you to-day
Duckess x
Hi duckess,
So sorry you are having a bad day. Its really difficult isn’t it when you are at this stage. I know what you mean about toing and froing in your mind about whats best as well. I just don’t know either…
I can’t really offer you any solutions except to say that whatever decision you make there seem to be many other fabulous, generous women on this site who have been there before us and come out the other side.
As someone said to me, the decision must be based on whatever is going to give the best prognosis for YOU with the BC GONE!!!
I probably haven’t helped much but just to send you hugs and say you are not alone. I’m here too!!
Wandyx
Hi duckess, I had bilateral mx for hg dcis on 8th march, my story is quite similar to yours so I understand how you feel. I’m doing ok, its been bearable and not painful more uncomfortable. We’ve got a thread of march mx girls under mastectomies,living breast free,‘anyone about to have a mx?’ Four of us have had the op so far, lots of support and tips there so please join if you think it would help you. We’ve also got a fb private group from when the site was down. If you’d like to join that please pm me and I’ll send you my fb page url. Hugs, Lynne
Hi Wandy feeling a bit lighter now thanks. Have had a shower and settled down for the evening. Hope you have been having a good day. I aways did prograstinate ( my what a big word ) ah. Should have made it my new years resolution to be more decisive. I think I know in my heart of hearts what must be done, you sometimes feel as if someone will say ’ oh you were dreaming it’s not real ’ must be the shock of it as everthing happens so fast. Thoughts are with you and as you so rightly say there are the fabulous women on here.
bubbletrouble thanks so much and I hope you go from strength to strength each day. I’ll pop onto the thread, and thanks for the fb offer I may pm you about that. Thanks again both of you
Duckess xx
Hi Duckess
I also had a bilateral mastectomy 3 months ago because of unclear margins. It is perfectly normal to be afraid of what is to come. I focused a lot on the fact that I had clear nodes and how the mastectomy might be the worst thing I would have to face. It turned out to be that way - no chemo or rads. The anaesthetics these days are a lot better than in previous times and the pain relief offered works well. The thought of it all is often worse than the reality. I found that to be the case. It wasn’t a walk in the park but it was perfectly manageable.
I feel fine now.
im confused i have grade 3 dcis and go in on wens for the op wot is confuseing me is i have been told i will have chemo after then maybe rads after that but after reading about dcis most ppl just have rads , my mother only had weeks of rads when she was dx many yrs ago so why have i been told chemo +rads is it just cus of my age im 41 or is there more to it i havent been told about ?
Hi honeybee, I think you should contact your bcn to discuss this. DCIS is not invasive cancer, so I don’t think chemo would be used for just DCIS, but your DCIS might have some invasive cells in it. Or maybe your surgeon is waiting to see the results from your surgery before deciding? You can’t be entirely sure what they will find until the pathology has been done after the op. Try not to worry, which I know is difficult, but I would get on the phone tomorrow and clear up the confusion. Remember that whatever is there, it is about to be removed and treated which is a really good thing. Also, try calling the help line when it opens. Best wishes, Lynne xx
thanks for answering that guess i will have to ring tomorrow he did say chemo that im sure about even the nurse said it too something about my age? just after reading all i can on on dcis it kinda didnt make sence i know different hosptails do things differnet but this i found very strange thank god i didnt have my hair cut last week now even the doctor told me it would be better off short will ring and see wot they say
Hi honeybee
I was diagnosed over a year ago with DCIS . Ii was told I would need a WLE and probably just RADS. AfterI went back 2 weeks after the op later I was told that 8mm of my DCIS was invasive and that it was grade 3 and thatIi would need to have some of my lymph nodes removed for testing in case the cancer had spread, thankfully it had not.
I was then advised to have 6 months of FEC because of the grade of the cells, and 6 weeks of RADS.
It is now a year since my diagnosis and I have had my first mammogram and it is all clear. Hang on in there ask all the questions you need to ask and take advice from different people.
Hope all goes well for you and if I can help you in any way please let me know.
Love Anne xx