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Just diagnosed with high grade DCIS

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Member

Re: Just diagnosed with high grade DCIS

Thank you so much to the ladies who have shared their stories with me, it means so much to hear from women who are going through the same decisions and problems. 

Having read your stories I feel I am definitely making the right decision to go for the mastectomy, I don't think I could live with the worry and the doubt.

i wish you all well and a happy and heathy future!

xx

Member

Re: Just diagnosed with high grade DCIS

Hi Angelab, I have only just seen your post, this is my story.  I was diagnosed with two areas of DCIS one 5mm and one 2mm about 6 cms apart.  I was called back after a routine mammogram.  More mammograms and biopsys were done and I was given the option of two lumpecomys or mastectomy.  I was in a terrible state, changing my mind day to day and could not decide.  Eventually I had a further meeting with the surgeon who said "If you were my wife or daughter I would want you to have a mastectomy".  That was good enough for me, he had also said that getting the smaller area out was going to be 'challenging' and he was concerned that 'something might be going on' between the two areas.  When my results came back my DCIS measured 9mm and 16mm.  I did not want to keep having to go back for surgery and although not 'happy' to have lost a breast, at least I know its all gone, SNB was clear and I do not need any more treatment.   If I had gone for lumpectomy, being a worrier, I knew I would be constantly thinking that something had been missed, or it would come back.   I was told I have dense breast tissue which is probably why the mammogram was so far out getting the size.  I had my operation on 7th December, it still hurts, but at least I am cancer free!   Good luck to you.

Member

Re: Just diagnosed with high grade DCIS

Hi Angelab, sorry that you are here but glad you will get the support you need here too.

I was diagnosed with high grade dcis in Sept 2016.  I had a lumpectomy, a cavity shave and 15 shots of radiotherapy.  9 mnths later I had my 1st follow up mammo and more calcifications were found.  On 29th Aug 2017 I was diagnosed with grade 2 invasive cancer that was er+ and her2+ breast cancer.  I had scans to check for spread but it hadn't  (thank God), 6 Chemo, 1 mastectomy with a tissue expander implant and 18 Herceptin.  I am now a year after chemo,  five weeks after my last Herceptin and 11 months after my mastectomy.  My new boob is great and I almost forget I have it.  I wish I had been offered a mastectomy the first time round.  Nobody can make your mind up for you and you can't anticipate the results.  But if your doc is advising mastectomy I would go for it.  I wish you good luck with making your decision and a speedy recovery whatever you decide xx

Member

Re: Just diagnosed with high grade DCIS

Hi Angelab

 

I was in your position just over 2 years ago.  I was advised that a lumpectomy with radiotherapy was all that I needed.  I had the lumpectomy but unfortunately they did not get clear margins so I was told I needed a cavity shave but the consultant said that he could not guarantee getting it all.  I had already had 1/4 of my breast removed so I opted for a mastectomy with immediate diep reconstruction.  After the mastectomy I found out that I had high grade DCIS over 2 large areas.  I have never regretted the decision to have the mastectomy.  With the benefit of hindsight I wish I had gone for the mastectomy in the first place. I found speaking to other women on this site who were going through the same ordeal as me at the same time was of enormous benefit.  Good luck with your decision. 

Member

Re: Just diagnosed with high grade DCIS

Thanks, Annie, 

Its always helpful to hear from other women going through the same thing.

The breast care team have been so helpful and supportive so that's been good!

ive decided to go for a mastectomy and have an appointment next week with the surgeon to talk over reconstruction so my new motto is One step at a time

Angelab

Member

Re: Just diagnosed with high grade DCIS

Hi Angelab

it is a horrible time and difficult descions for you.I joined this forum a week ago after being diagnosed with dcis after 3 months of testing and was basically told mastectomy with reconstruction and sent away to think about it with no support and no one to answer my questions.

My husband has been amazing and so have the lovely nurses on the end of the line from breast cancer care.

Did they assign you a breast nurse to chat with ? (Mine has been very unhelpful when we saw her Monday) It is mind blowing but another service this sight offers is they try an put you in touch with someone who has gone through a similar thing and you can chat with them and see what descion they made.

Over the past week this forum has really helped me as I do not feel so alone I hope you to will also feel the same as we are all her to support each other .

Annie 55 xxxx

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Member

Just diagnosed with high grade DCIS

Ive been diagnosed yesterday with high grade DCIS after having 3 biopsys, but only one of them has shown the DCIS. Although there are widespread indications of calcified cyst which have the potential to change to dcis.The consultant, on the advice of the radiologists, yesterday has recommended a mastectomy, but has left the decision up to me whether I go for mastectomy or lumpectomy, with radiology. 

 

Having read through the forum and various cancer websites, it's obviously not a clear decision, and I'm finding it so hard to decide myself which to go for. The only completely safe option is the mastectomy, but I may go through with it, only to be told afterwards there was only a very small area of dcis, but it's not clear cut at all. 

 

Has as anyone else gone through this same problem, and what did you decide to do? 

My head is telling me mastectomy, to be really safe in the future, but feel I may be rushing into something which could be cured with lumpectomy.

 

Any advice would be very welcome!