hi everyone, hope someone can help! I've been diagnosed after mammogram with high grade non invasive DCIS, had lumpectomy, clear margins and now told I need six weeks of radiation which I do not want to have. I want a double mastectomy so that I can live a worry free life with only about a 1% chance of reoccurrence as opposed to the 15-20% with radiation. Has anyone else done this? I feel like I'm being a bit dramatic but as a natural worrier, just don't think I would cope! Thank you so much

@Caseypinto Welcome to you! You really have to be guided by your Specialists in terms of your definitive pathology, it is such a hard decision to make and there really are alot of complexities to it. In 2011 I too was diagnosed with non invasive DCIS high grade, lumpectomy, clear margins and 5.5 weeks of radiation and then Tamoxifen for 4yrs. I did however have a recurrence in 2015 at my yearly checkup, 2.5cm tumor IDC ER+ Stage 2, Grade 3 Aggressive which rendered me mandatory Chemo after another major lumpectomy. As I was big breasted, with no node involvment, lumpectomy was as good as a mastectomy in my case. I was happy with my choices as I went. 14 months after finished chemo, at their recommendation I did a single mastectomy purely due to having had a recurrence and an immediate Diep Flap reconstruction. I was BRCA Gene negative and Genetic Counselors said that a double was unnecessary as did the Specialists as Nikki said, my risk in the right was as general population, they are not related. My Mum had BC at age 40, they did an immediate single mastectomy and reconstruction and she had NO TREATMENT. She survived 26yrs and they say her Cancer was unrelated to BC. I have to be honest with you, whilst I'm really ok and happy that I made each decision at the time that was best for me...hindsight is a wonderful thing and you just cannot foresee the road ahead. After 6yrs I am 2 years clear, all treatment done and just waiting for my revision surgery. Yes I have side effects that impact my life but overall I'm in such a great place moving forward and never looking back. My approach in future would be different however, I'd do immediate Mastectomy and no treatment. :) So just do what feels what is right for you, there are no right or wrongs, only what you want and can live with. Hugs Melinda xo

Hi @Caseypinto welcome and sorry you have to be here. I was diagnosed with multi focal early DCIS and an area of invasive carcinoma in Feb 2016. Because of its multifocality, I was advised to have a mastectomy. My right breast was fine and I was told the chances of DCIS in right were same as normal population. So, I opted for a left vertical skin sparing mastectomy and insertion of a tissue expander. I was also put on Tamoxifen as mine was oestrogen receptive. I had a DIEP Reconstruction 11 weeks ago and I'm rapt with the results.I saw my oncologist recently and asked him about chances of recurrence - he said 2%. Normal population. Totally understand your worry. You can only decide what is right for you.Nikki x

Thank you for letting me know your story Nikki, so happy you've got great results 11 weeks on. It's hard making the choice - just so unsure. You hear so many different theories, my surgeon told me the chances of it occurring in my good breast was double .... mine is hormone receptive negative which unfortunately increases the chance of reoccurrence. I still have a couple of weeks to decide..... i wish you the very best for your ongoing recovery Nikki xx

Thinking of you as you make your decision @Caseypinto x

None of its easy but if you go with your own preference, its usually the right one for you. <3

Dcis | Online Network

Caseypinto
Member
8 years ago
Yep! Me too @melclarity couldn't agree more!!
melclarity
Member
8 years ago
I have to agree with @nikkid I would've preferred mastectomy and no treatment. Hindsight is a wonderful thing. M x
Caseypinto
Member
8 years ago
Hi @Summerhill38 - I'm so lucky I was recommended this site as soon as I was diagnosed- don't know what I would do without all the wonderful advice/stories- sorry to hear you have regrets - can't believe your surgeon didn't mention he did reconstruction- can't imagine why.....? My decision to have both off was most definitely because I didn't want the stress of wondering when/if it will return- my surgeon was absolutely fantastic and offered me every option- and I'm so happy with my outcome (apart from the horrid expanders) but knowing that horrible feeling is temporary helps me cope. No reason you cant have your miss leftie off and have both reconstructed - your body- your choice! Thank you for chatting x
June1952
Member
8 years ago
Hello Caseypinto
Welcome to this wonderful site but I am sorry you had to become a member. Keep on the site when you have a query or are just feeling 'down' as there is always some lady on line and ready to support you.
Me ? I had extensive high grade DCIS in 2014 - in an urgent whirlwind I was told the right breast had to come off and nodes out with no chance of nipple or skin sparing surgery. No offer of any reconstruction - but I later found out the surgeon does not do reconstruction.
My big regret is not knowing I could have both off at the same time as I am always worried despite him saying there are no reasons to suggest Miss Leftie may be affected later on. Having to either wear a fakie or have odd-shaped tops being 'flat' (? Hmm - read that as being the ugliest bumpy sight) on one side is a real nuisance. I'd rather be totally flat and not have the hassles.
My issues were caused by an anti-depressant I'd been on for 8 months - the things they don't tell you and what local doctors really do not know, eh ?
You know yourself, your feelings and your body so get all the information you can and your decision will be right for you.
Good luck and do keep posting. Thinking of you.
Summer :-)
nikkid
Member
8 years ago
One great thing sometimes about a mastectomy @Caseypinto - along with clear nodes, mine meant no chemo or rads. Every cloud has a silver lining x
Caseypinto
Member
8 years ago
Yes @socoda feeling extremely lucky :) :)
socoda
Member
8 years ago
@Caseypinto, how fantastic that your so happy with your decision. Brilliant that your surgery has taken care of those precancerous cells. Big happy hug for you. Xx
Caseypinto
Member
8 years ago
Just wanted to do a quick update - finally requested my path reports yesterday and I'm feeling even better about making the very difficult decision to have the double M - my diagnosis was high grade DCIS, with comedo necrosis, non invasive, hormone receptor negative- however the final path report after bi-lat M was that atypical ductal hyperplasia was found 10mm from my initial incision site.... which as you all probably know- means they are pre cancerous cells... who knows if they would have turned or not next week, next year or in 5 years time - but thank God I did not give them the chance to. As some of you wise ladies told me .... 'you know your body... do what you feel is right' @Brenda5 @nikkid @socoda and some of your 'hindsight' @melclarity and all your stories that helped me make my decision @Jenv and so many others - I thank you from the bottom of my heart <3 for helping me to come to my decision. I know I made the right choice xx o:)
Caseypinto
Member
8 years ago
I'm so sorry you've have to endure such a nightmare Jenv, you sound so strong - hope you are coping well with the chemo effects and that you have wonderful support. This is what gets us through. So strange that an injection to strengthen bones can cause what it's trying to prevent. Modern medicine.... Thank you for answering my post, you've really helped. Good luck with your next 4 xxx
Jenv
Member
8 years ago
Caseypinto...no, not back in right breast, just metastisised in spine with a couple of small mets on liver...was put on a hormone tablet for two years until that stopped working and then i started having breathing issues which oncologist described as having cloudy, fluffy lung so hence now having chemo...so 2 down and 4 to go..i also have a monthly injection of Xgeva to strengthen the bones which can cause osteoporosis so then you have to take a calcium supplement like caltrate.