High grade DCIS - help

Hi

I won’t bore you with my story , if you read my profile you will see my journey, but I had an invasive lump which when removed they found I had extensive high grade rupturing DCIS , 2 further failed ops and I had a mastectomy with immediate implant - fast forward 2 1/2 years and I am now recovering from having the implant removed and a DIEP flap instead (10th Dec op)

Inbetween this , my friends friend had a similar situation to yours and was recommended a mastectomy, she was devastated, but I chatted to her and she asked for a second opinion (same hospital) and they agreed to do a lumpectomy which was successful. She has to wear a prosthetic to even up her boobs but is happy she still has her own breast , nipple and feeling in them both. 
So my advice to you - ask for a second opinion for a lumpectomy , ask about whether your implant can be maintained or if it will have to go, ask if even if successful you will maintain the chance to have a mastectomy if you are not satisfied with the result. Ask about the mastectomy and reconstruction , if you are suitable for a DIEP, if you are not aware of the different procedures ask for details , again ask if your implant can be reused to enhance your breast , if need be ask to be referred to see the plastic surgeon who would do this type of operation. 
I think there is so much to have to deal with and decide when first diagnosed , I know there are guidelines which are important but sometimes the mental health side of dealing with all these decisions can be overwhelming.

I hope I have helped you and not made you more confused , please add me as a friend if you want to have a private chat and I will send you some photos if you are interested if my diep ?

best wishes

Jo x

Hi and a very warm welcome to this not very exclusive club, great place for support and shared experiences, even the odd laugh now and then! Sorry you’re having this dilemma, no apologies needed, we’ve been dealt a sh** hand which none of us deserved! Great reply already from jowoomot, my own experience probably not much help but thought I’d tag community Champion lesleyhelen, because I know she had a lumpectomy/ WLE for a combo of invasive lump and DCIS. I’m sure others will also pop in with their experiences. 

Wishing you all the best with your decision, keep posting and asking questions, or just to rant and rave if you feel the need! Gentle hugs, HFxx

Hi and thanks to HappyFeet1 for tagging me in.  Perfect timing as I just got back from my Christmas/New Year holiday.

I was diagnosed in 2017 with 15mm grade 2 IDC and also 'a couple of areas' of DCIS.  That was all I knew until much later - nearly a year later, when I asked for my hospital records.

When I first saw the surgeon to be told that I had BC, she said "I just need to check if we can save your breast" and that was the only time I felt horrendously panicked!  Luckily, she had a look and said "yes we can do a wide local excision (lumpectomy) although you may have a bit of a dent".  When I saw a different surgeon just before surgery he told me "you will definitely have a dent".

I had 2 separate areas of grade 3 DCIS (as well as the 15mm tumor) totalling 54mm.  I was a 38D.  And yes, I do have a large dent and I also have a 3" scar, but they went in from the side of my breast so even in a tight fitting top because it was from the side where I have my dent, my breasts look perfectly normal.  They would also look perfectly normal if I wore a bikini on holiday as well.  As it happens, I don't wear swimwear because we don't do beach holidays - just got back from the Borneo jungle.. need to cover up to prevent being bitten alive lol.

So, as jowoomot says, yes ask for a second opinion and see where they are going to go into your breast to remove the DCIS - because if it is the side and you have reasonably sized breasts, considering how much of mine was removed (80mm), I am amazed just how good it does actually look.

Also, if it is smaller, you could ask for reconstructive surgery later.  Again, something I found out later it could be possible - when I was discharged by my BC nurse, when I asked the question.  So, you could ask about keeping your breast even if it becomes significantly different in size and get an implant later.

I was very lucky that they got all my DCIS on the first surgery, whereas some ladies have to go back again in order for them to get clear margins.  The lumpectomy is a much lesser operation than a mastectomy and I was back at work 2 days after the operation and driving 4 days after.

I would have been absolutely devastated to have lost my breast and for me that 5 minutes of thinking that I was going to need a mastectomy was the worst of all the time during my treatment.

Hope this helps,

Thanks for responding to my cry for help!!  Every bit of information makes me feel slightly better.  My consultant was so dismissive and unsympathetic said the 2 inches is too large for a clear margin lumpectomy.  The thought of a mastectomy is my worst nightmare.  Will definitely be booking a doctors appointment for another referral and I should not feel bad about doing so.  

So pleased things worked out for you and glad you had a great holiday.  Was in the Amazon and Peru last year for 3 weeks so only have the occasional sun bathing holiday.  Antartica in November !!

Kind regards Debs

Just to say that I've had a mastectomy with no reconstruction and am really happy. It looks fine, the prosthetic is easy to wear and recovery was really quick too. I hope things work out as you want them to! Xxx

Hi

I forgot to add that my DCIS was entirely different from my cancer. I was ER+ in the tumor, but ER/PR- with the DCIS. So, although when you read the brochure you are given when attending for your mammogram it says "some women have an operation which may not have been needed because it might not turn into cancer" mine hadn't formed a tumor.  But grade 3, being fast growing isn't one to ignore as there is every possibility it might,

Although some ladies have had a mastectomy successfully and are entirely happy with their results, I am totally with you in feeling that a mastectomy would have been my worst nightmare too.  I guess it just depends on the size of your breast when they are seeing if it can be saved, but some consultants are pretty dismissive.  My oncologist at the hospital where I went for my radiotherapy was horrible. (30 miles away from my operation). He made me feel as if I was wasting his time when I asked about the side effects of taking the ER+ tablets.  "I can't make you take them" and that was the end of my discussion with him.  Unfortunately when you are feeling so concerned and vulnerable you take what they say, but in ordinary life, I'd never put up with someone treating me that way.  So you go for it and make sure that they do everything they can do to save your breast if it is at all possible. I obviously had a fantastic surgeon who had 2 lots of DCIS to get and managed to get clear margins for both. I'm guessing a tumor is easier for operating on as it is a mass, rather than just areas.  

Antartica - rather you than me!  I like the warmth.... we did Argentina, Brazil and Peru last Christmas and new year - loved Peru!  If you went, I hope you got your passport stamped for Machu Picchu.

Let us know how you get on.

I had high grade dcis but only 11mm,  I had WLE and radiotherapy 4 years ago.  My surgeon very good and did tell me that many thought this treatment was too aggressive for Dcis 

Hi Grogg 

may I ask what WLE is as I have bad chemo brain at the moment. 

I am so pleased you are 4 years Ned. 

Amazing

BB

xx

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Wide local excision also known as lumpectomy!  

Thank you I had lumpectomy and the term WLE was not mentioned. Thank you for clarifying that I do appreciate it as I thought there may have been another alternative as now I have to have a mastectomy. 

BB

xx

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