update

[frankey123]

Hi Ladies,
Well the news is in; I am BRCA2 positive,  
I am in the process of scheduling follow ups with the surgeon, new oncologist (didnt like the first one) plastics etc.
To refresh your memories; I was dx with DCIS about 3 weeks ago and decided to take the BRCA test because of family history. Now that I have the test results, I have made the decision to proceed with a bilateral mastectomy with reconstruction and after recovery a hysterectomy. I have informed the same small handful of my nearest and dearest (I haven't told my children yet) of my decision and all of the sudden, they feel like I am rushing into a major decision; this is all I have thought about for the past few weeks, I feel like I am having to justify my decision, is this typical?  The few friends that I have told now feel that I should be telling everyone, friends, family etc. The last thing I want to do is bring more drama into my life, trying to console people as they express their sadness is way overwhelming to me.
Thoughts please?

[SueYoung55]

I made an oopsie.. the book is "The Breast Reconstruction Handbook" by Kathy Steligo.

If only I could get my mind moving as fast as my fingers. :)

[frankey123]

thanks ;)

[SueYoung55]

http://www.facingourrisk.org/about_us/newsletter_archives/2011spring/risk-reducing-surgery.php

Thought you may like some support while considering risk reducing surgery.

[SueYoung55]

I'm glad you know what you're dealing with. Did you have the benefit of speaking with a genetic counselor? Also, you may want to find a gynecologist oncologist who is versed in BRCA to help you with your surveillance.

I have mentioned this before and I am going to suggest it again. Please go read as much as you can about BRCA mutations at facingourrisk.org. They are the most informative site on the internet for BRCA information. They are also having their yearly conference in Orlando in 2 months and will have the premier health care professionals what deal with all aspects of BRCA mutations available to speak to you as well as all of the conferences and round tables there. Then there is the reconstruction end of thigs. You will see a show & tell where women gladly share their reconstruction experience with you and also the non reconstruction as well (flattops) and let you see the results, will let you touch the reconstructed area to get an idea what it feels like. They are very honest about what they've been through and who they did it with. Invaluable information for you, really.

When you are told you're positive for BRCA there are lots of emotions involved. Some want to hide and keep the information to themselves for whatever reason and some want to let the whole family know to be on alert for this mutation. Friends and family and sadly husbands tend to not get it. You can talk until you fall over but you will likely hear "Why would you cut off your breasts? You don't have cancer!". It's difficult enough for us to understand and we live in the cancer world so imagine someone who's not dealing with this. Even worse things will be said. The more you talk about it the worse it gets. Remember that your employer if you have one doesn't need to know details should you need time off. You can say I'm having surgery for a female issue. It's none of their business. This goes for co-workers too. They won't understand either.

I'd be happy to tell you about mastectomy if that's still the route you intend to take. Did you decide on reconstruction, yes or no? If you have decided to have reconstruction you will want to have it done at the time of the mastectomy for the best cosmetic and emotional outcome. Anxiety is normal prior to any surgery but you'll find that it was a waste of time after everything is said and done. I'm not going to tell you to not worry as that's impossible.

I am going to suggest you talk to the breast surgeon, plastic surgeon, oncologist etc and get all of their suggestions and then go elsewhere and talk to another plastic surgeon. When you're going to have plastic surgery (if that's what you're choosing) you really want to get the best of the best. You will find your anxiety goes away when you have complete trust in your choice.

If you are thinking about implants did you know that you can fly to Dobbs Ferry in New York and get a procedure we call "ONE STEP"? Dr. Ashikari created this surgery and has done it successfully for many many years. This means they have their breast surgeon remove your breast tissue along with the tail of spence and then they go in and insert implants and you wake up with breasts the size you chose. You will entirely skip the expansion process. Also, depending on where your DCIS is located you may or may not be a good candidate for nipple sparing.

You won't find that procedure available at local plastic surgeons offices because there are only a handful doing it and only two that I know of that do it with excellence. You will be offered expanders and will have several fills and then another surgery to have the permanent implants placed. Or you will be offered tissue transfer in the form of Lattisimus Flap or TRAM Flap both of which move muscles your body needs right where they are, not tunnelled under your skin to be moved to another location to be a "supporting" device. When it comes to stomach muscles they are needed to support that which they are currently supporting!

But instead of reading on the internet, let me suggest a book to you. Kathy Steligo has a book out there that is awesome for it's information called The Reconstruction Handbook. You will find answers to many many of your questions and will learn the questions to ask.

Last but not least, I will always say this... RESEARCH, RESEARCH and RESEARCH some more! You get one good shot at this and you want optimum results and that means you want the best of the best on your team. You're worth it. Your decisions on all aspects are yours alone to make, no regrets.

Best wishes in your research.

[frankey123]

I am so glad I switched oncologists!!
I spent the first two hours of my appointment today talking with the Dr.s wife (nurse practitioner).
Though I knew I was not their only patient, I sure felt as if I was.
My comfort level has gone up tremendously and even though I am still an emotional train wreck, I know I have made the right decision in switching doctors.
I had a blood test today for ovarian cancer (p-125 i think) results are due this Thurs. fingers are crossed for good news there as I don't think I could handle anymore just yet.
Next week Thurs is my appt. with the plastic surgeon, and then on Friday the reg. surgeon, then I will know when I will be going in for surgery.

Can you give me any information on recovery, and what to expect when I wake up?
I am having a tremendous amount of anxiety about this (based upon what I have read on the internet).
Thank you :)

[bluebutterfly2222]

Hi again,

I do remember you, and while I'm sorry to hear your testing came out positive, I am glad that you now know this, and have decided what additional steps are right for you.

This is an aggressive approach, but on the other hand, the BRCA gene vastly increases a woman's cancer risk. (You undoubtedly know all about this, but I'm including it in the thread,so that other readers facing BRCA-related decisions will also have this information.)Women with the BRCA1 or BRCA2 gene have a 56% to 84% lifetime risk of breast cancer. Lifetime risk of ovarian cancer increases by 36% to 63% for women with BRCA1 and by 10% to 27% for those with BRCA2.

A study of BRCA-postive women showed that such prophylactic measures can reduce their cancer risk.  Only 10% of the BRCA-positive women in the study underwent preventive breast removal. Over three years of follow-up, none of them got breast cancer. Over the same period, 7% of BRCA-positive women who kept their breasts got breast cancer.

Only 38% of the BRCA-positive women in the study chose to have their ovaries and fallopian tubes removed. These women had a significantly lower risk of both breast and ovarian cancer than women who did not have the surgery.


They also reduced their risk of death. Among women who underwent the procedure, known as risk-reducing salpingo-oophorectomy or RRSO:

3% died from any cause, vs. 10% of those who did not have the surgery.
2% died of breast cancer, vs. 6% of those who did not have the surgery.
0.4% died of ovarian cancer, vs. 3% of those who did not have the surgery.

In regard to your question about pressure to disclose what's going on or even defend your decisions, my view is that even though family and friends are affected by a person's health problems and decisions, that person's feelings, rights, preferences, etc., TRUMP EVERYONE ELSES!!  So feel free to insist on being  the director and producer of your own play, including selecting the professional and personal "cast" that will be allowed in it, how much of a drama it's going to be, whether it will only have a private showing or be open to the public, and stand firm against anyone who thinks s/he knows better than you, what is best for you.

I know of several cases where certain central family members (where this was possible and deemed best), were never told ANYTHING about a person's cancer or other major life issues, for various reasons, including some of the ones you mentioned: handling their reactions and "needs" would end up sapping the energy and interfering  with the needs of the person who owns the problem; the news would be too distressful to them and sharing it with them would only cause harm and serve no benefical purpose;  the one  with the problem is a very private person who needs to deal with things in her own way and on her own schedule, and so forth.

Best wishes,
bluebutterfly