Sleepless in Seattle: my C4YW update

 

Me and fellow survivor friends Terri Dilts and Julie Deutsch enjoying the Saturday night dance at the conference.

Me and fellow survivor friends Terri Dilts and Julie Deutsch enjoying the Saturday night dance at the conference.

Jet lag aside, I got a terrific boost from attending the Conference for Young Women (C4YW) Affected by Breast Cancer conference in Seattle. It was  filled with fun, friends, networking and information.

On the personal front, I’ve always wanted to visit the area, and I added on a couple of days to do just that. I tooled around with my friend Julie, who has been living well with advanced cancer for seven years. Julie had brain mets a while back and is all clear. She had enough energy for the both of us! We stayed with her chemo buddy Cynthia, who is 10 years out with advanced breast cancer. They both had treatment on Thursday, so I had the opportunity to visit them and fellow patients in the chemo suite. There were so many success stories in that room that I could write another book featuring just them!  Another chemo buddy of Julie’s, Terri, was also a seven-year stage IV survivor and shared the hotel room with us. It was so great to see so many people surviving long and well! While there, I was able to meet in person my friend Elizabeth, whom I mentor through Imerman Angels and treated me to a lunch of Pacific salmon.

After a morning at Pike Place Market, where I purchased organic fruit, beautiful glass necklaces and funky wool hat, we went to the conference. I had maybe a half hour to relax before going to the Young and Metastatic breakout session, in which I served on a panel with three amazing young survivors. As it turned out, I was the only woman on the panel who was first diagnosed with early stage cancer (mine was stage 2 at first before spreading to my liver and distant lymph nodes five years later in 2008.) Seems there are still too many doctors out there who think breast cancer doesn’t happen to young women.

The rest of the conference, I mostly attended breakout sessions for metastatic survivors. Here are some highlights and not-so-highlights from the sessions:

  • Metastatic Breast Cancer: A Medical Update with Virginia Borges, MD, University of Colorado Cancer Center – What I loved about this talk was how optimistic Dr. Borges was about treatments. She actually said there were so many in the works; she can’t keep up with them. She broke down research for the three types of breast cancer: HER2-positive, ER-positive and Triple Negative. Of Course, the big news was the FDA approval of TDMI for HER2, which happened the day before. Of course, my focus was ER-positive for selfish reasons. She talked about androgen receptor research and that 88 percent of ER-positive patients in a study had it.  There is currently a Phase 1 b/2 study looking at targeting this receptor.  One trial I’m watching is a hormone treatment called PD-0332991, which was announced at San Antonio’s breast cancer conference.  http://www.huffingtonpost.com/2012/12/06/pd-0332991-breast-cancer-drug-her2-negative-estrogen-receptor-positive_n_2247063.html.  She also mentioned some work being done on drugs that potentially can treat brain mets by breaking the blood/brain barrier. On the negative side, she downplayed the role of diet in fighting cancer and also the role of sugar feeding cancer. However, she must have mentioned three times how important exercise was to preventing recurrence.
  • Creating Your Legacy, Yvette Colon, PhD, Metacancer Foundation: This is one I didn’t want to attend but glad that I did. It prompted me to revisit our will and Durable Power of Attorney (we are seeing our lawyer next week). It also inspired me to do some pre-planning for a funeral as to make things easier for my husband and vice versa. She also talked about legacy writing, in which you state what you love about your life, what you’ll miss, etc. to leave for your loved ones. I never thought I could approach this so dispationately, but it’s actually a relief to get these things out of the way. It doesn’t mean I’m planning on dying any time soon, but it’s wrapped up for when I do.  I found this site, which allows you to download a state-by-state living will form (which states your medical care preferences in the event you are unable to communicate them) http://www.doyourownwill.com/living-will/states.html.
  • Sex and Intimacy, Barbara Musser, Founder/CEO of Sexy After Cancer. I had the opportunity to get to know Barbara during the Friday night dinner for Pink Fund bloggers and supporters. She’s a hoot! She also knows her stuff and shared all kinds of great tips for cancer survivors to get their mojo back. I like that her suggestions were ways to establish intimacy; not necessarily with intercourse as the end-goal. She calls this “othercourse,” which includes gazing into each others eyes, hand holding, communication and weekly sensual dates. As she stated, many of us suffer from dryness and pain during intercourse due to surgery- and/or treatment-induced menopause. She also had some suggestions to help remedy that! Most of us rushed to her booth for free samples of lubricants and copies of the Vaginal Renewal program pamphlets.

Although I haven’t yet dug into Barbara’s pamphlet, I came back from the conference feeling renewed (hee, hee). I highly recommend going to conferences as a way to meet other survivors and keep yourself informed!

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