Support groups for women having profylactic masectomy

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Jan4Sail
Jan4Sail Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

I am scheduled for a profylactic double masectomy in early December.  I am trying to locate support groups for women who have made this decision.  Does anyone know of any?  Or any good websites regarding this?  I am 53 so trying to connect with others similar to me.  Thank you!

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  • smirks44
    smirks44 Member Posts: 77
    edited October 2009

    I am BRCA2+ and had a prophylactic double mastectomy last year.

    You should visit the FORCE website at www.facingourrisk.org 

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  • love2travel
    love2travel Member Posts: 4
    edited October 2009

    Hi Jan4Sail - I had a mastectomy (right side) for DCIS in Jan 2009.  Because of family history and because I took tamoxifen for 5 years (for prevention!) and still got DCIS, I decided to have a contralateral prophylactic mast. on the left side.  My surgery is scheduled for Nov 11th.  I feel good about the decision I made.  I am BRCA negative but with the Tamoxifen not doing its job, my family history (my sister was 34 when diagnosed 12 years ago - she is fine now but went thru the stem cell procedure at Hopkins) and my own DCIS experience, I decided a prophylactic mast was the way to go.  I am 53 and the mother of a 13 year old daughter.  I want to be around for many more years don't want to deal with this again.  

    I recovered very quickly from my mast. surgery in January.  Good luck to you.  Please let me know if you have any questions.

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  • LISAMG
    LISAMG Member Posts: 639
    edited October 2009

    Jan4sail, 

    As Smirks already suggested, I would also highly recommend the FORCE web site's messageboard for tons of support with the decision making process for a prophylactic/preventative mastectomy. Whether you are BRCA positive and/or high risk, the information available is priceless. You will meet/find many women who have chosen this route with all types of reconstruction. Where are you located?  

    You can also find a local outreach support group to connect with via the outreach coordinators. I am the outreach coordinator for Long Island, NY. If you have any questions or need assistance, please feel free to drop me an email too. Best wishes!

    http://www.facingourrisk.org/messageboard/viewforum.php?f=3&sid=0c4afeee8daad5d8ac107479be5497e2

    http://www.facingourrisk.org/FORCE_community/local_groups/index.html

    lisag@facingourrisk.org

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  • Jan4Sail
    Jan4Sail Member Posts: 4
    edited October 2009

    Thank you Lisa!  Yes, I've just discovered FORCE and I am trying to reach out to them.  I was tested for the BRCA and thankfully negative, but have already had 3 lumpectomies due to atypical hyperplasia (both breasts) and already had my ovaries removed profylactically 2 years ago.  This hasn't been an easy road or an easy decision, but I know it's the right for me.  I am finding, however, that not everyone is supportive.  Thanks for reaching out to me!  I am located in Morris County, NJ and would love to continue to connect with others like me.  Thanks!

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  • Jan4Sail
    Jan4Sail Member Posts: 4
    edited October 2009

    Hi love2travel:

    Thanks so much for answering me!  And all the best to you with your upcoming surgery.  I decided not to go the route of tamoxifin, or similar drugs.  I have atypical hyperplasia (both breasts), very strong family history, have had 3 lumpectomies and ovaries removed.  At this point, under the guidance of several doctors, I have made the decision for the profylactic masectomy.  I am trying to connect with others who have also been on this journey and made this decision.  While thankfully it is not a cancer diagnosis, it has not been easy - but I am finding that not everyone is supportive, and this also makes it tough.  Do you know if anyone has created a checklist of how to prepare prior to surgery, and then week 1,2,3, etc.?  I am divorced (live alone) and my kids (2 sons) are grown and out of the house.  They will be here, along with friends, to help me recuperate, but only for a short time.  I'm trying to put as much in place prior to the surgery so I can be as independent as possible once I get thru the hardest part of the recovery.  Thanks for any tips you may have!  Janet

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  • Jan4Sail
    Jan4Sail Member Posts: 4
    edited October 2009

    Thank you!  I just recently came across their website and have reached out to them.

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  • karink
    karink Member Posts: 20
    edited October 2009

    Just found this site.  I'm so confused as to what to do that maybe someone can help?

    I had atypical cells removed in my right breast a yr. ago.  Just had my 6 mo. mammogram & they found more.  I have an appt. with my surgeon to explore my options, one of which is a preventative mastectomy.

    Has anyone had this with this same diagnosis?  How did you make your decision?  Any help & input will be greatly appreciated.

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  • smirks44
    smirks44 Member Posts: 77
    edited October 2009

    Karink, I dont have specific advice, but wanted to suggest that you may want to start a new thread with your question....you might get more responses that way.

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  • karink
    karink Member Posts: 20
    edited October 2009

    i'm new at this, how do i do that?

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  • murphygrady
    murphygrady Member Posts: 5
    edited October 2009

    Janet,(Jan4sail)  I am also in Morris County, NJ & would love to chat w/ you.  I have 1.4 cm stage 1 breast cancer in one breast but I am opting for a bilateral mastectomy so I guess you could call mine somewhat prophylactic.  I could've opted for for a lumpectomy but w/ family history & dense breasts, I choose the mastectomy.  Mine was only visible on the MRI due to the density. email me at murphygrady@yahoo.com if you want to chat. 

    Kim

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited October 2009

    I found out this past Nov. 08 that I had LCIS. I could not deal with the stress of all the testing every 6 mons. and taking tamox. So in Jan. of this year I had a PBM and had one step reconstruction with direct implants. I'm so glad I did it. The stress I was feeling is gone now and I can sleep at night knowing I don't have that worry every 6 months to deal with. It wasn't an easy decision to make but, it was the only one for me.

    I have a web site from my PS that has lots of good info. to look at before your surgery. Like how to set up your bed room and what to have on hand after your surgery. His web site is www.BreastReconstruction.org  My Dr is Dr. Ron Israeli and he is FANTASTIC. If anyone needs a PS in NY Long Island area.

    Here is a list of questions to take to the PS office.

    Best of luck to you all.

    Ann

    Lollipop insertion & implants or expanders?

     Can breast reconstruction be done in my case?

    • When can I have reconstruction done?
    • What types of reconstruction are possible for me?
    • What is the average cost of each type? Will my insurance cover them?
    • What type of reconstruction do you think would be best for me? Why?
    • How many of these procedures have you (plastic surgeon) done?
    • What results are realistic for me?
    • How will my reconstructed breast feel to the touch?
    • Will I have any feeling in my reconstructed breast?
    • What possible complications should I know about?
    • How much discomfort or pain will I feel?
    • How long will I be in the hospital?
    • Will I need blood transfusions? If so, can I donate my own blood?
    • How long is the recovery time?
    • What will I need to do at home to care for my surgical wound?
    • How much help will I need at home to take care of my drain (tube that lets fluid out) and wound?
    • When can I start my exercises?
    • How much activity can I do at home?
    • What do I do if my arm swells (lymph edema)?
    • When will I be able to return to normal activity such as driving and working?
    • Can I talk with other women who have had the same surgery?
    • How long will the implant last?
    • What kinds of changes to the breast can I expect over time?
    • How will aging affect the reconstructed breast?
    • What happens if I gain or lose weight?
    • Are there any new reconstruction options that I should know about?
    • Nipple Sparing mastectomy?
    • Tissue expanders? Are they painful?
    • How long till the surgery for implants?
    • Will there be drains
    • What type of implants, silicone or saline?
    • How long will the implants last?
    • Are the implants painful?
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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited October 2009

    Jan, I am 53, had pbm in Feb, live in NJ. We DO have an nj FORCE group. Send me a pm.

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  • ASL
    ASL Member Posts: 202
    edited October 2009

    Jan, I sent you a PM.  Another NJ FORCE member here. (hi Alice!)

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  • 2Hands4me
    2Hands4me Member Posts: 484
    edited October 2009

    I had a right mastec. in February for DCIS. There was microinvasion, but neg. SNB. Due to "busy pathology" on the right, and now a lump in the left breast that doesn't show on mammo, US or MRI and another area found on MRI that bx neg (but they're not sure they bx the right place!), the tumor board recommended a left mastec. I'm scheduled for 11/10. I recovered without problems except for extreme fatigue - so I'm hoping that won't be the case again.....! I hear some return to work in 1-2 weeks which is what my surgeon said is normal. He couldn't understand why I was so-o-o-o tired! I have some worksheets that I used after surgery but they may be more complicated than you really want. Let me know more of what you mean by checklist!

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