Hi
Just been diagnosed with DCIS but told it is widespread through the breast and so have to have a mastectomy. Would be greatful to hear from anyone who has any advise.
Have to have a biopsy on the 16th October for the lymph nodes first.
Hi debbie2009
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June, moderator
Hi Debbie. I was diagnosed with DCIS intermediate grade in August and have just had (15 days ago) mastectomy on one side, immediate reconstruction using Diep flap and sentinel node test. My sentinel node test was clear so no chemo or radiotherapy needed and am recovering at home now. if you have any questions I will be happy to answer them. Do you know what sort of treatment you will be having yet and where?
Hello Ang
Thanks for responding, I only found out last Wednesday and so am very confused at the moment. I will be seeing my breast nurse this Friday, so hopefully will find out more or should I say understand more. My problem was I was told initially that is was not cancer, so it hit quite hard.
I should be having my biopsy on my lymph nodes on the 16th October.
I would be greatful of any help, once I have some questions, I will get in touch.
Hope all is going well with you though, it sounds like you are doing ok!
The same applies here, if you feel like someone to chat to, let me know.
Good Luck
Debbie
Hi Debbie,
Hope you are ok and all goes well with you sentinel node test. It is a shock when they tell you but if it is just DCIS then this is the earliest stage that they can catch it & the good thing is that it can be completely treated. I found out I had mine after my first mammogram and it was also widespread. I was 46 and they have just started earier screening in my area. Even though I have had to go through all this I do feel quite lucky to have discovered it a such an early stage. I am not sure how you will feel after the SN test as I had mine all done at the same time but it will probably be a bit sore under the arm and I still can’t lift my arm up very high.I had to go and have the dye injected the day before the test to give it time to work and that was ok.Watch out for the green wee and No 2s after!
I am going to see my Oncologist later today for follow up appointment so will let you know what he says.
Good luck and try not to worry .x
I have posted this on behalf of new user lou.
Regards Sam (BCC Facilitator)
Hi to both Debbie and Ang…
Ang,I to am recovering from the same as you. i had my Surgery on 13 Aug.But i must say i still dont know how i feel about the whole experience and feel ashamed to say dont even no if im happy with the way i look!How do you feel?I am finding it hard to ask for help as i feel im bothering people and that they might think im being a pain!I wish i had more courage to ask for help…
Debbie , how are you feeling?and what help are you getting?
Hi Lou. Sorry to hear you are not feeling that good. My op was on 19th Aug. I am very happy with the way that my tummy is looking although still got the dressing on I think it will be back to how it was before the 4 children! My breast is still quite uncomfortable and a bit swollen and hard so looks a bit bigger than the other one at present but i was warned that it would be like that to start with I am seeing my PS today to have a look! Please don’t feel bad about asking for help , in my experience people are only too happy to help. Imagine if the case was reversed I am sure you would be happy to help someone else out. Talk to your breast care nurse if you are worried about how you look. They are really helpful and I know that my PS said that I can go back and have anything tweaked that doesnt look quite right after it has all settled down. The onclogist said I didn’t need to have any chemo or rads but wants me to see another oncolgist to decide whether I need to go on Tamoxifen to stop it happening in other breast.
Hi Debbie hope you are keeping positive x
Hi Ang, hope all went well with your Oncologist.
I do feel lucky that I have found it early as I have only just turned 41 and the only thing that drew me to it was I had a pain to the touch. I know a few people and relations who have had breast cancer and was always led to believe that Cancer was not painful, so thought nothing really of it. It took me a while to say anything to my husband, bout 5 months or so because sometimes, I would think yeah there is a lump, other times I would think nah…once he knew, he nagged me to go to the docs, we wwere living in Spain then and I did but was waiting for my mamogram, when we decided to come back here. Again took a while to get registered with docs here & then eventually got sorted and within 2 wks, was called for a mamogram.
However they did not find anything but sent me for a scan as I had pain there and so they found a tissue mass…had needle biopsy…then told it was not cancer but they wanted me to have an open biopsy and removal of tissue mass…to then being told…you know.
This is why I am still a bit confused with it all really, I went alone for the results as I thought I had nothing to worry about but tomorrow I go to see my breast care nurse and do I have a list of questions…
Lou
Through all this, this is why I feel I am lucky, the way to look at it is better to have it sorted now rather than it become serious…I have decided to have reconstruction at the same time, as I think if I didn’t, it would affect me more.
And Ang, thanks a lot for all the advise, I will let you know what else I find out and would love to hear how you got on.
Keep smiling and another way I find to help…Look at all the brave CHILDREN who can get through cancers etc…if they can, why can’t we.
my story much like yours.I had 2x lumpectonies for DCIS 5 yrs ago. Found a lump in my other breast 4 weeks ago (normal) but then they spotted changes on the mammo. Another core biopsy confirmed recurrence and a mastectomy now reccomended. Saw the oncoplastic surgeon on Tues to talk about reconstructions. I am also having sentinel node biopsy next Friday and I hadn’t been too bad until I started thinking that ‘what if’ it isn’t ok… Then back to say whether the mastectomy and recon can go ahead. It isn’t happening quick enough for me! Tried to go into work yesterday but every time I met any one I knew thay were crying and so was I.
Abi, so sorry to hear that you have a recurrence after 5 years. Did they put you on tamoxifen after your lumpectomies. I am seeing oncologist to decide whether to go on it next week. I know that we are all petrified of it coming back but at leat they have been screening you and caught it early. Good luck with your node test x
Will be keeping everything crossed for you & Debbie.
saw my PS yesterday & he said everything was looking really good. He said breast would settle down as it is only just over two weeks since op. I may be able to have my nipple reconstruction before xmas & possibly some smoothing of the abdominal scar where there are are couple of little lumpy bits on the far edges but overall I am very pleased with the result although now they have taken the taping off it is really weird to see my breast with no nipple.
How are you feeling now Lou?
Ang, thanks for your thoughts! I didn’t have tamoxifen or R/T as they thought after the 2nd WLE that there were no cells found and that R/T would do more harm than good. As regards the tamoxifen my results were borderline so again none given. More of the what if… scenario!
Debbie & Abi, Just wishing you both good luck for your biopsies.
Saw my oncologist yesterday and she said that I didn’t need to take any drugs. So nice to have some good news to share x Ang
Ang
Good news, really glad for you.
Biopsy went ok, just now waiting to get the results on the 27th. Thats the worst of it all, the waiting. I think the blus has passed through now!!!
Abi
Hope alls well with you.
Take Care and love to all will be in touch again soon
all the blue dye has definitely gone - it gave me an awful ‘upset tummy’ and left me at great speed! I see the ps this afternoon for results and have gone thru every emotion and scenario now. I am hopeful as he said the nodes were small but am still scared s***less.
Trying to be positive - loads more who are worse off than me!
Hope everything goes all right this afternoon Abi.
I really feel for you having to wait so long for your results Debbie. I can sympathise with the blue dye side effects as had those myself! Not nice.
Are you girls sore after the sentinel node test and can you move your arms fully? Its still sore where I had mine done a month ago but not sure whether this is from the reconstruction or from the node test as had them done at the same time.
My nodes were clear!!! We can now move on, but it means just more waiting. Next will be a day case thing so that they can improve the blood supply and then hopefully the TRAM at the beginning of Dec. Christmas will be sorted very early this year
Fantastic news! I remember just being so relieved when I found mine were clear.
Debbie - how is your armpit feeling? I appear to be healing well but in the last day or so it is really sore below where the scar is - presumably where he had a good root around. Keep positive for the 27th, I went through every emotion this week and I am sure you are the same.
Hi Ang & Abi
So glad things are going well…I am positive mine will be good news…
As for the soreness, It is really sore since I stopped putting on the dressings, which was yesterday but saying that being a mother I did and have over done it a bit. However I have all movement with my arm and shoulder just the soreness.
Ang…I do wonder/hope that it is because you had the recon done at the same time, that you are having trouble still. Sometimes I think we all act differently to our bodies just knowing that something has been done and make ourselves tensor.
Abi, I don’t mean to sound thick but being new to all this what is TRAM??
Have my kids birthday this weekend, so concentrating on them and will enjoy ourselves but yes the waiting is a killer.
If I don’t get in touch before, I will let you both know on the 27th how I get on.
I really am grateful of your support and knowledge.
Sorry managed to post twice