double masectomy

Hi there. Have just joined having discovered this site on the internet.

was diagnosed with DCIS on left breast and had lumpectomy on May 27th. Results are no invasive cells - very good - however margins not clear on about 3 sides so masectomy now being recommended. Am now considering double masce - with reconstruction. Seems to me that it's a huge leap to get one off  and not such  a greater leap for two. I get regular cysts on right breast and my aunt and younger sister at 34- have both died of breast cancer.
Am going to get genetic test which will help with the decision. Just wondered if anyone has had similar experience - even with double masc and reconstruction ?
thank you

[bluebutterfly2222]

Here is a link to a recent thread about preparing for  double mastectomy that you might find valuable:

http://www.medhelp.org/posts/Breast-Cancer/How-can-I--prepare-for-my-bilateral-mastectomy/show/1227057

Best wishes...

[SueYoung55]

You really want to get the BRCA testing done and I would suggest you also see a genetic counselor so that you get all of your questions answered. This is exactly what they specialize in.

I had a 10 cm mass in my breast and had one mastectomy (they refused to do both breasts which was ridiculous). Then a year & a half later I had a second mastectomy with immediate DIEP FLAP reconstruction bilateral. Amazing results and I'm glad I did it. The worry was tearing me apart that I would get a recurrence and by the time I had a second mastectomy I had two masses in the remaining breast. I wouldn't wish that fear on anyone.

The good news for you is that it's DCIS and not invasive cancer. One of my friends chose double mastectomy for her DCIS and is thrilled that she reduced her risk to 2%.

Best wishes making your decision.

[carlyjo]

thanks so much for reply and the web link to FORCE which have registered to. Am just beginning the genetic testing procedure on Thursday so hopefully will help
thanks again

[carlyjo]

hi there thanks for that link to discussion. Very helpful. Am glad have found this site via internet !

[RTRM321]

Hello, I am the one who started the above discussion about what to expect for my bilateral mastectomy!  These ladies have been a world of great information and inspiration to me!
I too had DCIS in my left breast, along with two areas of atypical cells. I never had any prior biopsies on my right side.   I chose to have a double mastectomy even though this decision seemed a bit radical.  However, after the double mastectomy on May 17th, I learned my right side pathology also had a few areas of atypical cells, so I am thankful that I made the decision to have both breasts removed!  I had the BRAC test done after my surgery, mainly for my daughter to have a medical history.  I currently have tissue expanders in and making much progress day by day!
Whatever decision you make, it will be the right one for you!!

[carlyjo]

Hi there. Thanks for replying. The link above was great - full of useful info - like buying lost of pillows . Think i'll leave the waxing though .... too painful !!
It seems to make more and more sense going with both. My surgeon wants to get results of test first before going ahead. Am not sure who has final say. I live in UK - Scotland -so a bit different from US as all paid for by national health service - thank goodness !!  Still I suppose you have final say re decisions when you have private health insurance. I know here patient has big input in decisions -so am hopeful that my wishes will be taken into account. Am starting genetic procedure on Thursday - don't know how long that takes - anybody?! though again may be different in UK from US

All the best with your recovery. I hope the pain is bearable and you getting up and about as normal v soon if not already.
Thanks again to everyone. It is so helpful to hear from people who have gone through/ are going through the same or similar. Good luck to all of you

[Mariac77]

Dear Carlyjo,

I imagine that you probably just had your surgery or is about to have now. In any case l really hope all went/go well. And that you have a good recover!!!!

I found this site because l was looking for information about double mastectomia. I had DCIS 2years ago, when l had lumpectomy and radioterapy. Last month l had a biopsia because they found a calcification on the same breast and the results again DCIS ....so indication of mastectomia with reconstrution. The all l've been reading and getting information l would like to have a doble mastectomia.
I also live in UK - Oxford and l hope NHS will accept my choice. l will see the doctor again tomorrow.
I dont know if you are able to reply now, but l would like to know what did the doctors told you or decided about the bilateral mastectomy as a NHS patient.
Of course if you cant reply l will understand. I really hope you are well, as well as all the brave women that wrote down on this site.
Thank you all for sharing  and helping women like you!

[RTRM321]

I hope all goes well with your appointment tomorrow!     I am sorry to hear your DCIS has reoccured.  I hope your Doctors can fulfill your wishes and you can move on with your life!
I also hope Carlyjo is doing well and getting along.  Maybe she will check in soon.  Please keep us informed of your well being, and what may lie ahead in your near future!    We are all here to help, inform, and be there for you when you need!

Hugs 2 you,
C