Crazy Sexy Cancer in Seattle

Hi Seattle ladies,

I haven't posted much but now I have a question and hopefully you all have some answers:) I had a bilat mx in 2008 and am now ready for recon. In fact, I'm scheduled to have bilat DIEP in early April with Dr. Beshlian and Dr.Paige. I've searched pretty thoroughly on the bc.org site and have found very little about them. There is alot about NOLA though:) Do any of you have info/opinions on their work? I've gone to the monthly meeting and there were 2 women who had DIEP recon done. Are there others who have had it done? Or have you researched and used different doctors for your recon and why? I am getting closer to the big day and I just want to feel I am as informed as I can be, so thanks for your input.

Annie

Hi everyone: it was soo good to see everyone at RR last week.

So I have a question for the group: do you know of any women (pref local) who have made the decision for prophylactic bilat mastectomy becuase they were either BRCA+ or had a strong family history? I have a friend here who has been doing all her research; her breast guy is Dr Clarfeld (and he has recommended that she proceed) and she has had consultations with several PS (McMillan, Welk, someone in Renton and another I can't remember), but it just hasn't come together for her. I think in part because she hasn't connected with others that have been faced with the same decision AND she hasn't been able to find a PS that she has clicked with (dr clarfeld wont go forward without it).

I didn't have to stew long on many descions when I was diagnosed and I think that makes things easier. I just recently came across the website FORCE or Facingourrisk.org, but dont know anything about it.

Tracy: WOW!! $45k. That is amazing! I am going to a getting started meeting next week in Bellevue so I am a definite GO! but my best gal pal in San Francisco is going to train as well, so I think I am going to try and find a team here, but walk San Francisco Oct 1-3. Does anyone do that?

3monstmama: I did chemo at Swedish: totally agree. Everyone there is sooo wonderful!

anniebford: my bs recommended Beshlian; he supposed to be one of the best. Someone here also went to him; but who escapes me.

Verene: hope the hair is hanging in there!

About the BRCA thing,  there is a news report from the ongoing Conference in Barcelona about that very subject.  here is--hopefully--a link to the article:

http://news.yahoo.com/s/ap/20100326/ap_on_he_me/eu_med_breast_cancer_treatment

This is the second report out of the conference that has me pondering.   The first--from yesterday-- had to do with women and weight and exercise.  It seems that the conference is saying that 30% of breast cancers could be avoided......hmmmm

I just want to point out that there is nothing any of us can do to avoid getting BC at this point.  Yes, weight is one of the risk factors.  But don't think any of us will know why we won this particular lottery.

What we can effect is our risk of recurrence going forward.  One of the really major things we can all do is make sure we get enough exercise.  Even during chemo.

http://www.youtube.com/watch?v=y4ZMZYdJUWM

I certainly have had a different trip than most chemo patients, which I attribute to making sure I got as much exercise as possible.  I even did the Chilly Hilly, albeit the shorter route.  I have a 35 mile bicycle ride planned for tomorrow with a friend.  This is on Day 6 of Taxol.  And I am already training for the Seattle-to-Portland.

Exericse of course also affects weight, and both affect estrogen production (assuming you will not be getting anti-hormonal therapy).  They also affect insulin growth hormone which is also associated with recurrence (and Type 2 diabetes which we also don't want).  Melinda Irwin has done extensive research in this area, and I think this video of her and another member of her team is worth watching. - Claire

The big one I didn't do was have children.  The rest of the list hits everything else you don't want, and for most women, including early stage BC, heart disease is the big one.  The only thing different here is that wine is protective against heart disease while a risk factor for BC.

Good luck relearning to ride your bicycle.  So many wonderful places to cycle here.  I am off to do the Foothills Trail with a friend in a few....35 miles total up and back.  Did the "up" part with a different friend last Saturday and got stranded with a flat in South Prairie.  We were rescued by two guys on motorcycles, one of whom went home, got his truck, and drove us back to my car in Puyallup.

Chivalry isn't dead!!!!

What is really fun it to do a ride to a destination with great baked goods.  Cycling Club members are up on two things: microbreweries and bakeries.  Pie is a particular favorite.  I did National Pie Day back in January when I was really dragging from AC.  Just so much fun.

I had trouble eating enough this week.  My body was just working too hard processing Monday Taxol and all the exercise from last weekend.  Finally ate a steak Tuesday evening, and then was OK.

Reminder to make myself some eggs prior to heading off to meet cycling buddy.  I will need the energy as expect to burn about 1800-2000 calories.

WOW - I don't check for a few days and the thread gets busy!!!!

Annie - Carol aka Golfer779 had a uni-diep done in January with Paige.  She attended some great meetings with women who have already had surgery, and others that are in the planning stages.  Kind of a "show and tell" if you are so inclined - very supportive and informative.  These are held at VM.  Send her a PM!  I think she started a thread called DIEP in Seattle or something like that.  

Sandiek9 - welcome!

Hope everyone got out and enjoyed the weekend - the news is reporting a storm on the way!

 Just not enough hours in the day as of late, so just a quick note as I poke my head in ...

Susan, so I thought raising the monies to do the 3-Day would be tough too in 2008, in fact I had told myself when I signed up .... "I'll just donate the amount needed to reach the minimum myself", which was not the case at all.   I have a very good hunch that if you we're to send a fundraising letter to your family and friends they would respond in a BIG way.   I'll admit that last year it "felt" uncomfortable to ask friends and family again for support, but I did and they once again came through.  In fact I was able to help with others, as I had reached my minimum of $2300 quite early on.  Jjust tonight stopped at the post office and once again have sent my letter to more than 60 addresses, yes it's not easy to ask others for donations .... but as I wrote in my letter "who said breast cancer was easy" ???   A walking partner on BI ..... I like the sound of that, and with your caring sense of humor it would be a pleasure for anyone to walk the miles beside you !!!!!    Think about it .... but don't wait too long  !!!

Gina .... once you have raised the monies for the 3 Day you can walk wherever you want, you would just register for that city.  

Tracy, whoooooohoooooo on your 3Day fundraising !!!!!!!!!!!!!!!!!!!!!!   

Annie, I am 10 weeks post op with a uni-DIEP.  Dr. Paige & Dr. Beshlian we're my docs.   I have nothing but good words for both doctors and VM !!!!!   I too saw posts and more posts from gals going to NOLA.   IMO ..... we have top notch docs right here in our backyard and it sounds like you've done your research.   Bottom line looking back ... last place I would have wanted to be post op, would be half way across the country from my doctors !!!!!

Not sure about cycling, but looks like a good "recovery" spot from a hike up Mt Pilchuk.

I love pie, but less than some other cyclists.  For example, I missed the ride that covered THREE pie joints in one day.

On treatment: Seattle really is a world class medical center.  Not that most of the rest of the country knows this.  So unless a really compelling reason to go elsewhere....

Annie, good luck on the scholarship.

It looks like I will be coming out of chemo just as my consulting business heats up.  Talk about timing!  So glad I exercised throughout.  Also that I got things like upgrading to Office 2007 and migrating to my new Sony VAIO out of the way.  Not fun doing it just as I switched from AC to Taxol, but the learning curve is mostly behind me.  YAY.

I don't think getting out your port is a big deal though it will probably be similar to getting it in, maybe not so sore afterwards.  My BS said it is his favorite surgery to perform .

Port removal ?   Had a local surgeon (not my oncology surgeon) remove mine ... personally had general anethesia, although I know of others that just had a local (NOT) !   Just a little tender for about a week as I recall.  Bottom line .... it's a good thing !!! 

Annie, took me some time but figured out that your the "Annie" I met at the VM recon meeting.   Your in good hands gal !!!!! 

Hi All,

Great that so many of you guys are doing the 3 day.  I was on the fence about it.  I decided that perhaps this year would be too ambitious for me. I will be having rads in the mid June until the 1st of August.  So, I figured that will be a great goal for next year.    Hope everyone is doing well.

Verene