double mastectomy nipple sparing

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pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 6/27/2015 8:41 PM (GMT -6)   
Hi all. I normally post on the crohns forum but I am scheduled for a prophylactic double mastectomy due to severe fibrocystic breast disease. I have hundreds of cysts in each breast combined with extremely dense breast tissue. My mammograms and ultrasounds always list as multiple masses believed to be cysts which always worried me. I have had plenty of aspirations of cysts over the years and recently had a core biopsy on an area that was also just a cyst. My mother died of breast cancer and since I never knew my grandmother or her medical history, I don't know who else in my family may have had breast cancer also.
To be honest, I am tired of the constant worry about if or when they will find something that is not a cyst.
I am going with a nipple/skin saving double mastectomy with immediate reconstruction. I have large breasts now but want to go small. I am 50 and would love not to always have to wear a bra!
I am concerned about pain and not being able to pick myself up out of a bathtub. I am very independent and don't want to have to rely on my hubby to help me do everything. How long will it be before I should be able to function on my own?

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 3315
   Posted 6/28/2015 1:14 PM (GMT -6)   
Hi pmedic-I don't have an answer for you but just wanted to wish you well and hope things go smoothly for you. When are you having the surgery?
Moderator UC and Breast Cancer forums
Sheri-42 years old

Diagnosed UC/IBS 04/09-Left sided 01/13 Endo showed gastritis and Colonoscopy showed only 2 cm of rectal inflammation 2015 Flex Sig showed everything clear and biopsy were clear too.
Diagnosed in Jan 2013 with Chronic Uticartia
Meds-2 Lialda, Aciphex, Allegra, Singulair, Vitamin D3, Hydroxyzine (as needed), probiotics, Canasa 3xwk

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 6/29/2015 7:52 PM (GMT -6)   
Hi Sherbear, my surgery is July 15. It is coming soon. I am starting to get nervous!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 3315
   Posted 6/30/2015 6:19 PM (GMT -6)   
I'm sure. I would be too. Hoping all goes well. Let me know how you do.
Moderator UC and Breast Cancer forums
Sheri-42 years old

Diagnosed UC/IBS 04/09-Left sided 01/13 Endo showed gastritis and Colonoscopy showed only 2 cm of rectal inflammation 2015 Flex Sig showed everything clear and biopsy were clear too.
Diagnosed in Jan 2013 with Chronic Uticartia
Meds-2 Lialda, Aciphex, Allegra, Singulair, Vitamin D3, Hydroxyzine (as needed), probiotics, Canasa 3xwk

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 7/21/2015 3:17 PM (GMT -6)   
Today is six days post skin saving double mastectomy with immediate reconstruction and I feel great. I was only at the hospital for seven hours. That includes waiting in the waiting room for an hour. I came home and have had pain from the expander tube sitting on the rib but everything else is good. Pathology was negative except for a bunch of other junk but no cancer. I get my sutures out next Monday and once all the swelling goes away and the Dr can make sure both sides are even, he will surgically remove the expander tube..
I feel like a cancer surviver even though I didn't have it. My breasts were a constant source of worry and stress that is finally gone.
Glad the worst is behind me:)
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 3315
   Posted 7/22/2015 8:52 AM (GMT -6)   
Such good news and I'm so glad the recovery has been going well. So happy for you. :)
Moderator UC and Breast Cancer forums
Sheri-42 years old

Diagnosed UC/IBS 04/09-Left sided 01/13 Endo showed gastritis and Colonoscopy showed only 2 cm of rectal inflammation 2015 Flex Sig showed everything clear and biopsy were clear too.
Diagnosed in Jan 2013 with Chronic Uticartia
Meds-2 Lialda, Aciphex, Allegra, Singulair, Vitamin D3, Hydroxyzine (as needed), probiotics, Canasa 3xwk

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 7/22/2015 8:34 PM (GMT -6)   
Thank you sherbear!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 11/8/2015 7:03 PM (GMT -6)   
Update. My recovery has been a piece of cake. My reconstructed breasts are beautiful and much better than I used to have. I will have surgery to remove the expander tube next month and during that surgery, my plastic surgeon offered to change my implants to the "high profile" if I want. Still debating that.

I am so relieved to have my old breasts gone and hope I have managed to out-wit any breast cancer . If anyone is considering this surgery, find a good plastic surgeon and just do it!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 3315
   Posted 11/9/2015 4:19 PM (GMT -6)   
So happy to hear all has gone well for you. :)
Moderator UC and Breast Cancer forums
Sheri-42 years old

Diagnosed UC/IBS 04/09-Left sided 01/13 Endo showed gastritis and Colonoscopy showed only 2 cm of rectal inflammation 2015 Flex Sig showed everything clear and biopsy were clear too.
Diagnosed in Jan 2013 with Chronic Uticartia
Meds-2 Lialda, Aciphex, Allegra, Singulair, Vitamin D3, Hydroxyzine (as needed), probiotics, Canasa 3xwk

gogirlusa
New Member


Date Joined Dec 2015
Total Posts : 1
   Posted 12/1/2015 3:44 PM (GMT -6)   
pmedic, your story has totally relieved my fears! Thank you for writing about your experience! I'm 33 years old and was just diagnosed with DCIS (ductal carcinoma in situ). My surgeon is advising a double mastectomy with reconstruction. I have been totally freaking out and searched online for other women's stories. When I read yours, all my of fears were calmed down (a little lol!) Thank you so much for sharing. I would love to connect with you either via messaging or by phone. I think it would really help me to talk to someone who has gone through this since I have no idea what I'm in for. My email address is gogirlusa@yahoo.com....please message me if you feel up to sharing more of your story with me :) I have heard scary things but I am trying to keep your encouraging story in my mind.
-Danielle

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 2/22/2016 6:02 PM (GMT -6)   
Gogirlusa, I am sorry I am just reading your post! I am going to try to email you to see how you are doing.

My update, I am still doing great. My surgery to remove the expander tubes was pushed back due to insurance reasons but it should happen within the next month. I am going to let him change out my implants to the high profile and also have a tummy tuck at the same time. Why not, right?!


Take care everyone!

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 9/19/2016 1:13 PM (GMT -6)   
Gogirlysa, did you have your surgery?

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 90
   Posted 11/19/2016 12:26 PM (GMT -6)   
pmedic,
It was nice reading your story. The more that women share their concerns and fears about their breasts, the better for us all! You mentioned your breasts were always large and gave you concern. I was the same way! It's frightening to be 11, 12 years old and develop large breasts that are naturally lumpy! You think every lump might mean cancer, which a 12 year old brain can't even process. Add the fear of cancer to the self-consciousness of being prematurely "stacked", and you grow up with "breast issues".

I'm very happy your prophylactic mastectomies turned out so well.

Exqualls
Diagnosed malignant invasive ductal carcinoma, stage 2B, ER+, PR+, HER2-, Ki-67- 48%, BRCA negative, mammaprint -.0097. Double mastectomy on 9/28/16. First chemo 11/7/16

Best of health and positive thoughts to all who are reading this :-)

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1667
   Posted 11/29/2016 7:06 PM (GMT -6)   
Thanks Exqualls!
I am still doing great. I am very happy with my breast results and every time I hear of someone that has been diagnosed with breast cancer, I -am very sad for them but breath a sigh of relief that I don't have as much of a worry anymore. I hope my story helps others of they are debating this surgery.
If anyone has any doubts or questions, feel free to email me.

Post Edited (pmedic) : 3/16/2017 7:24:27 PM (GMT-6)

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