DCIS (B5a) - help and advice needed please!!

Hi there. As the title suggests, I am somewhat of a state of turmoil and confusion. I went to hospital today expecting to get the results of two biopsies i had last week and a definitive answer on which op (WLE or mastectomy) I was going to have to have, however one of the biopsies came back as definite pre-cancer (B5a) and the other benign. They decided to do a further biopsy (which was awful as still very sore from others), and will get the results next Friday. If it is pre-cancer again there is no question, it will be a mastectomy, but if it is benign I’m not quite sure where to go with it. Will a WLE mean I won’t get breast cancer in the future? Should I go down the mastectomy route anyway? As you can probably sense I am very scared and confused at the moment. I really would appreciate any advice. Thank you. Sue x

The WLE should mean that you won’t get cancer in that particular place. The hospitals really dont want to be doing more ops than necessary - so if they think that there is a risk (ie: family history, previous health history) or the DCIS is too widespread to get clear margins they may suggest a mastectomy. BUT a WLE with good margins is what they are after.
A benign lump is just that so if it is small it can be removed - or left and monitored (to see if it grows - it may just stay as it is)
However, your surgeon will explain the risks to you and you will have time to decide. A week extra to make a decision will not be a risk to your health.
Remember that cutting off any body part will prevent cancer in the body part that has been removed - but it is a pretty drastic way to prevent it if your risk of getting it is low, so if you can have a safe WLE that is a good option
I can’t find the article, but there was research to show that there was no improved outcome for those women who opted for a full mx, when all they actually needed was a WLE. (And before anyone jumps on this, it doesn’t refer to those who needed a full mx, only those who didn’t but opted for one)

Hi SueM62 what has happened to you is what happened to me last November, the results for the repeated biopsy came back benign so I had a WLE. There was a bit of confusion with those results as well but all is clear and I start radiotherapy for 15 sessions this coming Tuesday. I thought about a mastectomy as my mum died from secondary breast cancer so I spoke to my nurse and asked about the pros and cons. You need to go with the best advice you can get and we are all different so you need to talk to someone who knows your results and your family history and what feels right for you. I am happy with the decisions I have made, as I say I start rads on Tues and I have got yearly mamograms for the next 5 years. Sorry not more help, but my experience has been interesting and sometimes frustrating but I know everyone has what has been best for me to ensure I have a long and happy life. I hope you get good results, take care and big hugs XXXXX

Hi Annie, thanks for your reply, I appreciate you taking the time to to reply. I have taken in your comments and will keep them in mind when I make my decision. Many thanks Sue x

Hi Debs. Thanks for taking the time to share your experience with me, it’s nice to hear from someone going through a similar experience to me. I have had four biopsies in total now - one benign, one B4 suspicion of pre-cancer, one B5a definite pre-cancer and awaiting one result. I feel I am swaying towards mastectomy regardless of this last result. My surgeon has told me if this one is pre-cancer it’s a definite mastectomy and if benign maybe a WLE. This is where I’m worried about making this huge decision. I have two young children and really am worried that if I have a WLE I may end up having a mastectomy in the long run anyway. It’s such a hard decision to make and I admire you making the decision and being happy that you made the right one. Good luck with all your treatment and your recovery. Love Sue xxx

Hi Sue, As DCIS is a pre cancer or stage 0 cancer ,meaning it is not invasive so cannot spread to other parts of the body as is still contained inside the ducts, DCIS is considered cureable with surgery , A WLE with clear margins, (sometimes but not always followed by radiotherapy),or a Mastectomy is usealy all that is needed. The different types of surgery for DCIS usealy depend on many different factors and of course your own personal preference.

Women nowadays are usually treated with an operation that keeps as much of the breast as possible. a wide local excision (WLE). However , in certain situations if after a WLE your breast won’t look good because the DCIS covers a wide area or the DCIS is in different parts of the breast a Mastectomy might be reccommended.

It is often hard decideing which type of surgery to have, so i would be guided by your breast surgeon after the final result of your biopsy , Like Annie says above, studies have shown that there is no difference in outcome with either a WLE or a Mastecomy if you do have the choice , though occasionally women choose to have a mastectomy instead of WLE because they feel it relieves their anxiety about DCIS coming back. however a mastectomy shouldnt be seen as a gaurentee that breast cancer cant come back as in rare cases, DCIS or cancer can come back after mastectomy because it is not possible to remove all breast tissue as breast tissue extends to the clavicle and underarm areas aswell.
DCIS fortuneatly has a close to 100% survival rate at 10 yrs ,and in the vast majority of cases will be cured with either type of surgery, there is some debate now certainly in the case of low grade DCIS whether it is being over treated as some DCIS will never go on to become invasive or cause a woman problems in her lifetime.
Hopefully your further biopsy result will come back benign and a simple WLE will be all that is needed. Keeping everything crossed for you.

Linda x

Hi Sue
I was diagnosed with high grade DCIS last April, and opted for skin sparing mastectomy,rather than a WLE. ( strong family history , the risk of the cancer returning, and the danger of insuffient wide margins) I now have a tissue expander, and am waiting for a surgery date to have it replaced with an implant. At the same time the other side will be reduced and uplifted so I look fairly even.
I don’t regret my decision to go for the mastectomy even my recovery wasn’t exactly plain sailing! I would make the same decision again, but everyone is different. Good luck xxx

Hi Linda, thanks for your reply. I understand exactly what you are telling me, but after going through such a horrible time to get to this point (four very painful biopsies), I’m just not sure how strong I am to go through a WLE and potentially radiotherapy and then maybe a mastectomy in the end anyway. Very confused, just need results and guidance from my surgeon I guess. Thanks again. Sue x

Hi barbaraanne, thanks for your reply. It sounds like you are pleased with your decision. My DCIS has been classed at this point as intermediate. do haven’t got family history etc, yet as you may realise I still am in somewhat of a quandary. As I’ve said, if the last result comes back pre-cancer then there’s no question, if it comes back benign then my decision becomes more difficult. Good luck with your continued recovery. Love Sue x