Crazy Sexy Cancer in Seattle

Cheers to all!  Thank you for the congrats for finishing rads.  Carol -- yes, doin' the done w/ rads dance but it won't be complete until we all celebrate together at our next dinner!

 Jessica -- good luck w/ rads.  You will be absolutely fine.  I think it will go great for you, honestly.  For me, it was easy, and the staff is SO nice and fun, it just made it a breeze.  PAP on these threads is one who suggested ditching the bra for awhile and I did and I'm glad.

LittleBird75 and Daffodil -- Welcome to you!  This thread of women is wonderful.

April Girl -- Congrats on your one year anniversary of diagnosis.  Isn't it nice to move on!  Yeah, baby!

Kathie-- hope you are settling into Seattle nicely.  We are glad you are here!

Tracy -- I'm w/ April Girl -- the person needs to have their eyes checked.  Seriously!!  I'm sorry about the frustrations in looking for a job.  But let me say this.  Part of true success is what you contribute to others in your world.  Just think of the contribution you've made to all our lives, how grateful we are to you that you started this thread for those of us in Seattle battling this disease, and how much comfort and hope and laughter it has brought all of us.  An immeasurable contribution.  Bravo.

I wore purple for Robin this week-end.

Love and hugs to all.

Carol - that is so exciting.  It is wonderful to have such great resources in our area - and for me seeing the results is so much better than reading about them.  I am very happy for you! 

I saw my radiologist, oncologist and SCCA even squeezed in a mammogram today (no pun intended!).  Everything checked out well (as far as I know).  

In June my onc. ordered the tamox. metabolizer test and it turns out that my result was not great - not horrible but kind of a dreaded "gray area" (like the oncotype score).  Also, my June hormone levels were at menopause, so I am starting femera tomorrow!  I will see her quarterly and she will do blood work each time to check levels but assumes this is not chemopause.  Fine with me!  I am going to have zometa every 6 months as well as a chest xray and mammogram on the bad lefty.  

Tracy, I completely agree with Madge24 - you have made a huge contribution to our lives.  I feel so grateful that I have found such wonderful women in Seattle - who happen to also have bc.  

 Carol was the first one I met from the boards, and she was such an inspiration, and great source of information on CMF and what I was going to experience.

I don't know what I would do without each and every one of you!

I am really looking forward to our next get together!

Libby - sorry that the 4th is not a good date for you, but happy that your exchange surgery is coming up!  I think that will be the end of your "active treatment", right.

Tracey - I will check out your website.  I'm sure it is great!  I think starting your own business is the way to go in this economy - my husband did the same thing!

Gina- I have wondered the same thing - miss her!  Hope to see her in December.

Amanda - I was going to suggest you post those pictures when I first came across your Hope for Robin facebook page.  I too am happy to be part of her legacy.  I didn't know her well, but so admired her spirit and know what you mean - she seemed so cheerful and positive in spite of this #@%! breast cancer.  Not everyone with this disease and progression can maintain that - which I think we can all understand. As you have found the pictures, I am thinking you have read thru some of her old posts.  I have done the same, and  will really miss her.  Carol, Peg (Madge24) and I were talking about her the other night and her death has really hit us hard.  I don't want to bring everyone down, so won't go there.

Amanda, I am so inspired by your devotion and all of her friends and family.  Her spirit lives on!

Okay, time to take my femara.  Crossing my fingers- wish me luck (not side effects and please no more weight gain!!!!!).

Thank you. )

Has everyone heard of the new horrible guidelines?!  Please look through active threads and sign the petition against it!

The new guideline is to start screening mammograms at age 50 instead of 40 (unless you have high risk factors like family history).  Many of us are under 50 -  and most of us do not have family history etc!

This is the most ridiculous medical advice I have ever heard.

Dr. Susan Love will be "discussing" this with some of the BC.org docs - who are not in agreement.

Hey - my photo and a quote from me may be on that program!  I saw a post on here that Dan Child from ABC news was looking for women who felt that a mammogram before 40 saved their lives, and I sent him an email.  He requested a quote and photo, and this evening asked for my permission to have it on GMA.  I really don't know if it will be on there (this was originally for an online news article). 

Yes, Dr. Weiss and Dr. Love will be on - and let's all get behind Dr. Weiss.  Carol, I agree - I am po'd big time- this just seems like some weird insurance company ploy to limit expenses - but it will cost them more to treat us at later stages.  

edited to add:  Gee - day three of femara - I am so mad - maybe this is due to mood swings?!  Just kidding!

Amanda - I added Robin to the list of women opposing this - I believe she was diagnosed at 44.

As far as your question, I guess spread the word that this is ridiculous - and will cost lives.

The Dr. Weiss/Dr. Love discussion should be worth watching.  

sorry if this is off the current topic. Met with the oncologist today for the 2nd time - but the first since my surgery (lumpectomy) and port were installed on the 28th. It's slightly irritating and amusing both to me that both my surgeon and ongologist seem to come to the appointment with no background on me what-so-ever till they read their computer screens and say "ahhh...ok, so what we have here is blah blah blah and what we will do is blah blah blah...."

I realize they have so many patients with so many variables they can't possibly know everyone, but they could do the looking-up of data just before they walk in to help paitients feel a little more settled, a little more like this isn't an asembly line of freakin' cancer patients with no names only charts....

In spite of my irritation/amusement I was pleased to find out I will have the minimum of chemo - 4 sessions over 12 weeks. I didn't ask about specific medication they will be using as  I have a "chemo-ed" appointment on Wednesday where I know I'll be finding out everything I ever wanted to know and more. When Dr. asked "when would you like to start?" I answered "today". 

Really after all this build up, stress, waiting, drama, tears, angst, worry, relief I'm ready to just get on with it and get it over with. He reminded me again today I will lose my hair. I informed him I was prepared for this (so I tell myself) and he nodded. 

The scheduler was telling me about the appointments. I asked for the duration of each - she went on to say "your chemo appointment will be 3 hours, or slightly longer since this is your first time".

LONGER? Longer than 3 freakin hours? Holy crap. None of the books mentioned this! I asked her " really? I can't just pull up to the drive thru and ask for my burger and fries to go?". She chuckled but then insisted that each appointment would be about 3 hours long with the first likely running longer. Wow.....Honestly I had no idea. I was thinking maybe an hour.....I guess I'll bring my laptop and facebook/farmville account to the appointment with me! 

 Anyway - Dr. said 12 weeks/ 4 sessions of chemo followed by 6 of radiation. I start Friday.

Thats all I know. 

seattle women -- I am sooooo FURIOUS!  I just found out the the Chair of this new committee, or coalition changing the mammogram guidelines is at UW Medical Center!!!!!  I just sent him an email detailing my personal history and requesting his comments - I'll let you know what he says - if he responds.  Send me a PM if you want his name - I got if off of a thread detailing the report.  I am assuming it is accurate.

SCCA is in disagreement with this new guideline as are MD Anderson and the Mayo Clinic (i'm sure there are more).

Good night!

Tracy, I know what you mean, I was just thinking that if this was a "mens" cancer they would never delay the screening guidelines for 10 years!!  I'll send an e-mail to the UW guy as well.  I'll let you know if I hear anything.  XOXO Jessica

LIbby, I was dx at 44.  A routine, non digital mammogram "found" my tumor - and then digital mammograms, ultrasound, biopsy and MRI confirmed the results.  My tumor happened to be non-palpable - so I could not feel it nor could the teams at both Virginia Mason and Seattle Cancer Care Alliance - about 10 docs (including residents) total tried to find it by hand and could not - this is with them knowing where it was.

I know many women that found their tumors, and some that the mammogram did not pick up the tumor, but for me it was mammogram only.

If these new guidelines were in place, I would never had mammograms as I erroneous believed that family history was a big component of BC - we all know that 80% of women with BC have no family history.

Libby, although I was on the mamo parade from age 40 (because of an Aunt with BC), I never had a squish that even came up suspicious (yet none we're performed digitally).  Had a mamo in Jan of 07 at age 43,(looked good),then  noticed on my own a "funky" firmness to my breast later that summer.  Was scheduled for a gyno physical in Sept ... ended up rescheduling due to doc being out of town til the first of October.   With a quick once over by my gyno ... she turned serious as a heart attack and had me in for a mamo, U/S and biopsy the next day .... the rest if history. 

Bottom line ... yes my tumor was recognized on a mamo 9 months later (even being ILC) which is very hard to diagnose with dense breast in mamo's.    Until modern medicine comes up with better diagnostics, WTF to tell women to wait until their 50 something !!!

On that note .... waiting for my MRI results from yesterday, and will be having my digi boob squish on lefty tomorrow ... hoping for nothing but a clean bill of health to get my mind wrapped around my recon surgery in January !  

Carol - I so agree - until they come up with a better test - we can't just wait until we are 50 !!!  I am still so p.o.'d about this idiotic task force.....I sent the UW guy (he is also at GH in Seattle) an email - can't figure out how to cut and paste on here....

 Got a letter from SCCA that a mammogram was all clear, so that's good.  My oncology nurse called with the blood test results of both menopause and vitamin D.  My vitamin D level was 22 or 23 a year ago.  I started taking vita D after surgery but quit for chemo.  Just started back in September - but I was taking 4,000 iu a day.  Well, now my vita D level is 55!  Guess the pills work!  My onc. wants me to back off a bit (she only recommends 2,000 a day max) and told me the optimal level is 35-50 and above 50 is too high.  So, I am to back off and only take 400 iu a day.

Can't wait until we all get together next month!

S