Stage 2 Doubts

I’m not doubting going through Stage 2 revision surgery, I’m just doubting that the recovery can be as easy as my doctor says it will be.   Here are two threads on the FORCE message boards.

I started this one to get some feedback on how others have recovered.

This thread is about stage 2 after implants, so it’s a bit different than mine will be, but still relevant.

In other news, our cousin Susie will be released from the hospital and headed back to her Boston home tomorrow!  We haven’t spoken to her, but it sounds like she’s making great progress.

Stage 2 Scheduled

Today I met with my plastic surgeon, Dr. Gimbel.  It was my first appointment with him in two months.  At this point, he says, everything is healed and looks the way it’s probably going to look forever (some scars will continue to fade) unless I have more surgery.

My intention in going to see him today was not to schedule surgery.  I had this idea in my head that in December, when I’m off from school, that I could have a few nips/tucks to my breasts during the hysterectomy I plan to schedule for then.  I was determined that I will not have more than one more surgery – I really feel traumatized by the hospital stay from the first surgery.  Dr. Gimbel says that that’s possible, but it could be pretty complicated depending on what I want done to my breasts and how his schedule coordinates with the gynecological surgeon.

According to his assessment, in order to achieve the highest possible aesthetic, I need the following things done: nipple reconstruction, skin tightening below the breasts and minor reshaping, lipo on the sides and under my arms, and fat grafting where he will take some of the fat from my stomach and put it above my breasts below my clavicle where there’s a bit of a hollow from the scraping during the mastectomy.  He says this will also help the major drop-off of my stomach.  This whole shebang will take no more than a couple of hours, will not require drains, will not require full anesthesia – just twighlight – and I won’t have to stay overnight in the hospital.  I’ll be back to work a few days later with no activity restrictions.

This sounds pretty awesome to me.  I was worried about nipple reconstruction – I read so much about those failing and have seen so many pictures of nipples that turn to scabs and then fall off.  But he says that is much more common with implant reconstruction, and that because my breasts are made from living tissue, he doesn’t expect that will happen.  I’m also kind of used to not having nipples, although I do think that I will be more pleased to have them back.

So, I scheduled it.  July 26th.  I won’t have much work to do in August, so it should be a perfect time to have it done and give me some time to heal before classes start again for the fall.  The fat grafting could require two or three more procedures after the first, but they are also short twilight procedures that don’t require hospital stay.

I did also ask him about the numbness on the front of my right thigh – he said that’s common when nerves get severed or tugged on.  And, he felt the bulge along my abdominal scar, which he thinks is fat necrosis.  He says it might shrink, it might not, but nothing needs to be done unless it bothers me.

In other news, we hear our cousin Susie is recovering well from her DIEP procedure on Monday.  She was on Facebook yesterday, so that’s a huge step right there!

Susie’s Surgery

As I’ve explained, my family has BRCA2 mutations, and my husband’s family has BRCA1 mutations.  Yesterday, my husband’s cousin Susie underwent a prophylactic mastectomy with DIEP reconstruction, a surgery that took over 12 hours.  She has survived breast cancer and fallopian cancer and is now taking steps to prevent further BRCA-related cancers from affecting her.  Susie is a big supporter of FORCE and serves as an outreach coordinator for the Boston area.   We’ve gotten updates that the surgery went well and she is expected to be moved out of recovery later this afternoon.  Please send positive thoughts and prayers to Susie as she recovers from this difficult surgery and consider a donation to her Heroes page in honor of her brave decision.

Too Quick to Critique?

I’ve received some criticism of my post about Angelina Jolie’s recent announcement that she is a BRCA1 carrier and has undergone a preventative mastectomy.  While I stand by my argument that she could have done more to promote the resources that are available to BRCA carriers, I do acknowledge that I was quick to critique.

Most of my peers (fellow BRCA bloggers, who I hope I have not now alienated) were thrilled with Jolie’s announcement and the awareness it will bring to genetic testing and preventative surgeries that can save us from suffering from breast and ovarian cancer.  Many people have made an important point – Jolie did not have to say anything – she could have kept this entirely private, and thus the face of BRCA would still be invisible to many.  I agree – I too am  excited that BRCA now has a celebrity face and that potentially thousands of people might be tested who would not have thought to ever do so – her announcement has brought to the front page a lot of information about genetic testing, gene patenting, prophylactic surgery, and more.

My critique of Jolie was mostly emotional.  FORCE and its members have been really important to me in my own journey, and it was immediately noticeable to me that Jolie only mentioned her partner as support.  Perhaps he really was her only support.  If so, I actually feel sad thinking that Jolie might not have known about FORCE and its community.  As a frequent commenter and poster to their message boards, I know that whole community would have been happy to help her with advice or support in any way.

She also suggests that people should be talking to their doctor about testing and its consequences – she does not mention genetic counselors.  As I’ve written here before, many doctors are not educated about BRCA.  My previous PCP did not know that BRCA could be inherited from your father – it can (that’s how I got it).  My husband’s previous PCP told him he didn’t need to be tested (even though his grandmother died of breast cancer ,and his sister, his mother, and his mother’s cousin are all breast cancer survivors) because the risks for men are minimal – also not true.  We now know that my husband is a BRCA1 carrier, and this means he will need screening the rest of his life for prostate, pancreatic, and other types of cancer for which he is at higher risk.

Jolie says her process began with nipple delay, saying nothing about the endless research, genetic counseling, and doctor consultations that most of us BRCA carriers do/have before our surgical procedures.  She says the decision was not easy, but doesn’t go into detail about how she made that decision – that is what most people in the FORCE and ‘previvor’ community are concerned about.  How do you come to that decision?  What are the consequences of knowing this information?  What do you do with it once you have it?

Jolie’s op-ed in the NYT, which has now been spread to virtually every news outlet around the world, was the perfect opportunity to discuss how people can get support before and after learning of their BRCA status.  Support doesn’t always come from a doctor or a partner.  It also comes from communities of people who’ve experienced what you’re going through.  I guess I’m just very thankful for that community, and I felt disappointed that it seemed to be neglected in what would have been a perfect place to highlight it.

Luckily, however, members of the FORCE community have seized the opportunity to bring FORCE to people’s attention.  Here is Sue Friedman’s interview on NPR.

Go Susie!

I’m very proud of our cousin Susie who is having her prophylactic mastectomy on Monday, along with DIEP tissue transfer.  Yesterday she was interviewed for the Boston Globe in relation to the recent news about Angelina Jolie.  I’m most happy that she mentioned FORCE and the amazing network that has helped her make this decision.  Go Susie!