I had DCIs 4 years ago which started with a nipple pulling in. I had WLE and radiotherapy. 2 years ago there were some calicifcations on the mammogram and I had a core biopsy but this was OK. This year at first I was told the mammogram was ok only to be called two days later by the consultant who said the second radiologist who viewed the mammogram thought there were changes and so I had to have another core biopsy.
I spoke to the radiologist doing the core biopsy and he said that the calcifications had changed and that I had some sort of splinter shaped ones and these were more likely to be DCIS. I was very upset because I had thought that all was well after my annual trip to the consultant. He said that there was a 50-50 chance that there was a problem with the calcifications - not good odds.
Has anyone had DCIS a second time? Anyone know much about calcifications?
Any help would be much appreciated.
Hi Cassie
Sorry haven’t had a return yet of DCIS - had a mastectomy so I believe it’s less likely - but I just wanted to say he gave you a 50 - 50 chance so you’ve still got 50% in your favour and I’d hang on to that. Hope that all is well with your results. Will be thinking of you.
Love
Beverley
Thanks Beverley sorry to say I have to have a mastectomy it’s back again. I’m very worried and have posted on the reconstruction thread. Did you have reconstruction?
Love Cassie
Mcgle - Thanks for your reply. Yes they did get clear margins after the WLE. I can’t have any more radiotheray and the consultant says the only option is for a mastectomy. From what I’ve read I’m limited with the type of recon because of the radiotherapy. The best that can be said about the situation is that it is not life threatening. I’m very upset and at the moment have no clear course of thought or action. Just don’t know what to do for the best.
Cassie
So sorry to hear your news…i had a mastectomy and diep recon for dcis 10 weeks ago and have been amazed by the results…7 hour op but went without a hitch…back looking after my 2 young children by week 4!!!
You could look on www.optionsforbreastreconstruction.com which gives all the different type of recons available nationwide.
The diep uses skin and fat from tummy to rebuild boob…i had enough for a c/d cup…luckily no rads so had skin sparing mast…however if you have enough exccess tummy skin they can use that…and maybe reduce other side if that would help…
Are you memeber of www.bcpals.org.uk…lots of us over there with lots of recon experience…
Good luck
Lots of love
Px
Hi Cassie
So sorry to hear about your mastectomy. Yes I had an immediate DIEP recon like Picasso the results are very good. Just make sure that the hospital you go to can offer you the full range of reconstruction some have limited options. Let us know how you get on. Keep in touch.
Take care of yourself.
Love
Beverley
Hi Beverley
I was just reading on another thread that you had high grade DCIS with micro invasions. This is what I think the consultant said when I saw him last week. Do you know much about the micro invasions? I know he said I hadn’t got an invasive cancer, but I have to admit I was not in the right state to remember everything. Also my breast care nurse is on holiday. My husband thinks it is what he said as well.
How long ago did you have your surgery? Did they test any lymph nodes? Did they say anything about not being able to do a recon if you had to have any chemo?
Sorry to ask so many questions but any help you could give would be great.
Love Cassie
Hi Cassie
I had high grade DCIS a year ago - it’s the aniversary of my op this Friday - which covered my entire breast with a small area of micro invasion. Because they were not sure if I had any invasive cancer among all the DCIS they did a sentinel lymph node biopsy before they would say if I could have an immediate recon. If there had been anything in my lymph nodes they would not have done the recon straight away because I would have had to have radiotherapy and maybe chemo as well. As it is I have had nothing apart from the op. You will probably see from other threads I have been trying to find out about Tamoxifen - some hospitals give it for DCIS others don’t. Mine wont as they say the risks from Tamoxifen outweigh the benefit for DCIS and having looked into it I probably agree. Hope this helps.
Love
Beverley
Thanks Beverley my DCIS was not hormone recpetive so I could not have any drug treatment. I just had radiotherapy for 3 weeks, Something else that has come to mind is how do they check the reconstructed breast?
I’ve calmed down a lot now and am starting to think carefully about things. How long did it take you to recover from the op? I look at some of the ones involving moving muscle around and am worried about mobility problems. Were you offered anything other than the DIEP op?
Hi Cassie
I was offered all the different options for recon but my PS said that because I was still young! (could have kissed him I was 50 and feeling ancient) it would be better to have a recon that didn’t involve implants because they have to keep being changed. The DIEP gives a realistic look so I thought if I’m going to do this I might as well make it the best I can and it doesn’t involve using any muscle. Physically I seemed to recover fairly quickly - I had been told 3 months - but I was doing most things in a month or so but it took me longer mentally to get over it because it all happened so quickly so I took 3 months off work.
The only checks they can do on the reconstructed breast is to feel the skin on the outside. If they thought there was any problems I would assume they would do an MRI scan. I have looked on some websites for info about recurrence after mastectomy for DCIS and have seen around a 1.8% chance of it recurring so am hoping for the best. When are they planning to do this?
Thanks for all your posts, they are really helpful. I see the consultant again on Wednesday and he wants me to be able to say whether I go for a reconstruction at the same time as the mastectomy. He will also have the final result of the core biospy. Apparently they need to grow the cells in the lab for a little longer but he doubts whether the result will change from what he already has. When I saw him last week he was talking in terms of me having the op in 2-3 weeks.
I tried to speak to my breast care nurse yesterday only to find she is on holiday and the one covering just said have a list of questions for the consultant when you see him on Wednesday! Not a lot of help especially when you feel that you have limited time.
I’m 58 so a bit older than you and do not really like the idea of having a bag of something inside me. Being a bit cheeky could I ask do you need to have a very large tummy to have the DIEP op? I have a bit of a tummy but not a large one. Also how do you get on with the loss feeing around the implant? Do you have loss of feeling around the tummy button as well?
Sorry to go on so much but it’s still early days for me, once I know what is going to happen and have made the decision it will be easier to deal with. It’s the waiting again!
i had DCIS with a small invasive cancer, they tried lumpectomy but couldn’t get clear margins so i ended up with a mastectomy. i had immediate LD recon. i’m happy with the result, it looks fine, the only thing i’d say is it’s a jolly sore operation so if you go for that make sure you get adequate pain relief!!..
hi
i’ve just found out that i have high grade DCIS. i also had a tumor. i’ve just had a mastectomy. i find out what my future treatment plan will be on friday. its great to read these posts and good luck with your decision cassie. when i read it was high grade i immediately assumed they would suggest radiotherapy but i realise that may be wrong. one thing is that i’m scared that if i do have radiotherapy it will severly limit options for reconstruction…but is that wrong? sounds like it might be. in my case it will be delayed recon (decided against immediate for various reasons…)
x
joannafinch
Hi Cassie
No you don’t need an overly large tummy if your breasts are not that large (although they will reduce the other side if needed). I’m a size 10 with a ‘B’ cup and although my PS said it was the tightest tummy tuck he had done, apart from one woman who had it done for cosmetic reasons, they got more than enough for my boob because it looks slightly larger than the other one(long story about why).Having had two children my tummy was loose. He said I wouldn’t stand up straight for 3 weeks but I wasn’t that bad and my tummy is very flat. The loss of feeling around my boob doesn’t worry me too much - I wouldn’t have had one there anyway - but the loss of feeling in my tummy does irritate sometimes but it’s worth that irritation.
I am the same age as you and had a reconstruction 18months after mastectomy and I can only say that it worked out with me -they moved my tummy to my boob - great job but huge op. Everyone is different just keep asking questions and someone here will give you some answers put them all together and decide the way fowd Of course ask the experts too. As you say the waiting game is the worst
I’ve seen the consultant again and there doesn’t seem to be any change with the biopsy. I’ve seen the histology report which shows DCIS and says there are possible micro invasions but the sample was too small. I’m now being told that they want to sample the lymph nodes and now concerned that I will get lymphoedema. I’m right handed, it’s my right breast. I broke my right wrist about 5 years ago and had a lot of problems with it.
Just reading this I think I’m sounding like a hypochondriac! It’s the waiting and unknown again! I go to see the plastic surgeon tomorrow to find out my options but the consultant is talking about a tummy tuck type op.
Hi Cassie
If they do a sentinal lymph node biopsy they will only take one or two nodes - three max - so the risk of lymphoedema is not a great - in fact my bc nurse told me not to worry at all about it. Hope all goes well tomorrow.
Love
Beverley
I am having a masectomy for pre cancerous dcis but because of the position of the micro-calcifications this is my only option, They are going to do a sentinal lymph node biopsy on the morning of my op but they have told me it is only a precaution, and bc nurse said forget it coz it is unlikley to have any problems, apparently if there is a problem with them it is easier to do at same time as masectomy.