Dilemma over treatment options

MaryAnnieMaryAnnie Member Posts: 9
I was diagnosed with DCIS 3 weeks ago. I'm in my 40s.. My immediate thoughts were to have a Bilateral Mastectomy and reconstruction. I have a strong family history of breast cancer (my mom and sister both were diasgnosed with IBC in their 40s).

My surgeon said my DCIS was at a very early stage and non-invasive. I was conflicted but didn't want to delay treatment. So I agreed to have a lumpectomy instead.  This was followed by a re-excision to get clear margins. DCIS was 2 foci, 10mm in total. High nuclear grade.

Now I am at a crossroad and have to decide whether to proceed with rads or go ahead with a double mastectomy plus reconstruction. I'm afraid I will get a recurrence or another primary breast cancer due to family history and increased risk. And if I go ahead with rads and the cancer comes back,  I will then have to get a Mastectomy but implant reconstruction will have a high risk of failure due to scar tissues caused by rads. 

My head is telling me that having  a double mastectomy now will be a very radical move for a non-invasive DCIS. But my heart is telling me to have the Mastectomy plus reconstruction.

Has anyone out there gone ahead with Mastectomy for DCIS or early BC (even though lumpectomy and rads were an option) because of their family history? Gene testing is one option but even with a negative in the gene test, there are many undetectable abnormallies in the genes which increases the risk of cancer in the family. 

I hope to receive your feedback or views. Seems like this big decision is the only thing I can think of all the time.


Comments

  • Molly001Molly001 Member Posts: 312
    @MaryAnnie sorry about yoyr diagnosis and what a decision! Having had family diagnosed you're probably well aware of what you're in for and what you could've been in for with different pathology. Essentially it's your choice, and either choice may end up being just as effective. I'm a believer in doing all you can and leaving no opportunity for regret. I say go with your heart on this one BUT it's your decision!
  • VallerinaVallerina Member Posts: 65
    Hi maryanni i just replied my dcis / mastectomy story to claudia. If u want to read on her thread   I didnt have family history and u need to get surgeons recommendations re ur risk and whether doubl mx is necessary or helpful in ur case then decide what gives u peace. I had 70 mm high grade dcis as it wasnt invasive there was no rads or chemo or hormone thrrapy. Just surgery single side  mx in my case due to the size of dcis lumpectomy wouldve left me too disfigured despite being 14dd and i hav now had sucessful  recon. Follow up will b 5 years of yearly mammo ultrasound and mri i feel at least for the next 5 years i am protected from sneaky recurrence happy i hav one real boob left but many women hav found peace through diffrrent path. Is single mx an option or are they recommending double. I tended to b guided by what the surgeons recommended. Hugs vallerina xx
  • primekprimek Broken HillMember Posts: 3,298
    Hi MayAnnie
     Yes I chose this bacause of my family history. My story is on breast reconstruction group with pics. I miss my breasts but do no regret the decision. Have you been offered gene testing? This should be done asap and might help with decision making. 

    I knew my best result was one done pre treatment and planned reconstruction. My results are pretty good. 
  • ShorelleShorelle Member Posts: 65
    Follow your instincts! I had stage 2a with no lymph involvement. A bilateral mastectomy wasnt even a choice as I knew if I didnt do it I would be stressing over every lump and twinge. I asked my surgeon that if she were me, would she do it and she said, 'Absolutely '. Decision was made. Im had the mastectomy and reconstruction in same op. That was 2.5 weeks ago, still in pain but still know it was the only decision to make. Im 44yo. Chose to remove nipples too as there is a lot of breast tissue there. 
  • melclaritymelclarity Member Posts: 2,464
    @MaryAnnie Hello and welcome to the Forum. I completely understand your dilemma! I had my first diagnosis in 2011 DCIS left breast, I had a lumpectomy very clear margins, rads and tamoxifen for 4yrs. I only had my Mum as family history breast cancer. It came back same spot 4yrs later in 2015 uuugh! but it was 2.5cm Stage 2, Grade 3 aggressive ER+ so another lumpectomy and lymph nodes removed, chemo and onto Arimidex. I did end up having a mastectomy but a year later preventative, of course the breast pathology was perfect uuugh BUT I couldnt deal with another recurrence. I was negative for Brca Gene testing so they all agreed only left breast would be necessary. My Plastic Surgeon wouldnt do an implant as I had radiation and the skin is too thin and damaged. He does more Diep flap recon, and I am so glad, I never wanted an implant so this was a better option for me and more natural in everyway. I was petrified to have surgery, but the result and feel of it Im super happy. Ive since had a revision, right breast lift to match and nipple recon. Only tattooing left but not fussed to do it to be honest. 

    All I can say is...trust your gut, at the end of the day it has to be what you want and are comfortable with and what makes sense for YOU! In hindsight for me now after everything Ive been through, I would have opted for mastectomy/recon in 2011 and no treatment apart from Arimidex or the like. It would have saved me alot of heartache and recurrence. We dont have a crystal ball, so I guess I traveled the path I was meant to, but had I have known I wouldn't have been through the hell 2 years I have and now reduced quality of life thanks to treatment. 

    All the best with your decision, hugs Melinda xo
  • Summerhill38Summerhill38 Regional Vic Member Posts: 587
    Hi @MaryAnnie
    Welcome to this great site where you will have all the support you need at any time of the day or night.  None of us ever thought we'd be here !
    Like you I had extensive high grade DCIS but had no family history that I know of.  I was unfortunately not able to have skin-sparing or nipple-sparing surgery, just given one option - a straight mastectomy, no reconstruction offered.
    As other ladies have said, go with your gut feeling.  You know your body and your lifestyle.
    If you are already fearing recurrence then go for the double mastectomy.
    If I had one, my option would be to go for an immediate reconstruction and I would prefer DIEP, even though that is massive surgery.
    I hope my comments help you.  Good luck and do keep in touch.
    Summer   :)
  • MaryAnnieMaryAnnie Member Posts: 9
    @melclarity Thanks for sharing your story. It sucks when BC comes back. How did you manage to make the final decision to have a preventive mx one year after the lumpectomy for the recurrence? It was a brave decision and I salute you. It must have been a really scary time but so glad you have all that behind you now. This forum is such good support for us who are just starting our journey. I love you ladies.
  • melclaritymelclarity Member Posts: 2,464
    @MaryAnnie It does suck, it was absolutely devastating at the time as I had done everything possible and it came back anyway, so left me a little cynical. Oh believe me I had such a hard time with the decision and its only because my Surgeon and Oncologist kept on about it post chemo that in the end I thought, I just couldnt live with another recurrence, it was just too hard on every possible level. The other thing was too I had to have Gene Testing and when that came back negative I knew in my mind I'd only have a single not a double because to me I was fixing something that wasnt broken. Once I did the surgery I was absolutely fine, the lead up was the hardest part emotionally/mentally. Now honestly I still feel like I was and my foob looks like it did sort of LOL. Im really happy with the result, its been a damn hard road the past 6 years but Im very clear in my mind what I would and wouldnt do in the position again. Big hugs, you'll make the right choice at the right time, trust yourself on that. 
  • onemargieonemargie queenslandMember Posts: 489
    Hi there lovey. I had triple neg last year aged 43 stage 2a grade 3 (3 cm) no family history negative for the gene  all scans clear 8 rounds of chemo and hell yes I took them both off but only because my gut told me to. I had it in the left boob and could of had lumpectomy chemo and rads but decided on mastectomy then I didn’t have to have radiation. Then I took the other boob off 6 months later. Only regret I have sometimes is I didn’t have the immediate recon. It doesn’t bother me having no boobs but it means more surgery now in the future and more time off work. So I’ll cross that bridge when I come to it. I totally trusted my gut and have no regrets. If I had your history I wouldn’t hesitate to be honest and if it means no treatment and you can get on with life sooner I would do it absolutely. Always trust your gut and do what you feel is best for you lovey. Everyone is different and everyone’s had a different journey. It’s a tough decision no doubt about it but whatever you decide you will get through it.  Keep us posted. Biggest hug Margie xx 
  • lgray3911lgray3911 Member Posts: 99
    I was diagnosed in early Feb. am 37 mother of 2 boys. Surgeon recommended I had single mastectomy (tiny boobs and biggish tumour) my gut instinct told me to go for bilateral mastectomy. My husband just wanted me to get rid of the cancerous side and worry about the other side later. My surgeon kinda agreed but didn’t push her opinion on me at all. I followed my gut and am so glad I did. I didn’t have immediate recon because I still had to have rads so that will be next year. Good luck and follow your heart x
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