My USA Today interview and a confession...

[Soccermom]

Hello friends,
I have been away from the Boards for a while and have missed you!
Currently I am home recouperating from Stage 1 DIEP reconstruction (11 days out) and have some time on my hands. It was 2 1/2 years in the making but I decided to GO FOR IT just this past July. I had my chemo port removed also and am hoping I will feel more like my old self (pre cancer) as the days and months progress.
My love and hugs to you all,just wanted to share...

http://www.usatoday.com/news/health/2007-08-26-mastectomy-calendar_N.htm (http://www.usatoday.com/news/health/2007-08-26-mastectomy-calendar_N.htm)


Marcia

[Margerie]

Marcia,

Great article. I wish I could see the pics! I don't know if they will do the same this October, but last year's editions of Self and Allure featured pictorial of women with several types of reconstruction or no reconstruction. The pictures and stories were beautiful!

Thanks for sharing. And I hope you are doing well on your recovery. I had a bilateral DIEP almost a year ago.

[Melinda]

I am so proud of you .I learn something about each one of us on this boardevery day. For you I learned just how much of an "in your face" breast cancer survivor you really are. A true activist, and spokes model for all of us.
Melinda

[Jean]

Welcome Back Marcia,
Wishing you a speedy recovery....

Best Wishes,
jean

[Bev]

Best of luck. I'm sure you will turn out beautiful, BB

[Joanne S]

Congratulations on sharing yourself with all us BC women and being an inspiration to us. Thanks for the link. I will be ordering the FORCE calendar.

Best well wishes to you in recouperating from the DIEP surgery!!!

[LAURIE]

thank you so much Marcia for sharing your story with the world. how did you get involved with that article, I really want to make a difference in this world for not only for bc survivors but for women overall. thank you so much for being an inspiration and sharing your story. It is becoming more obvious lately that Oct is bc awareness month isn't it?

[R.B.]

Well done and congratulations.

I hope you are healing well.

RB

[Soccermom]

Hello again ladies,
Having some healing issues so I will be returning to my surgeons office in New Orleans tomorrow.
Laurie, I have been involved with FORCE for 6 years (way before my dx). It was only after "the shoe dropped" that I realized i *might* be something other than BRCA, and landed here with this saavy group! Years of watching family members being dxed w BC spurred me into investigative mode. I got involved w advocacy and was trained to work on a BRCA helpline and the rest is history. I know there are many opportunities for those willing to travel and speak, perhaps Christine and Joe have something specific for Her2 that you could sink your teeth into?
Thank you all for your good wishes!
Marcia

[Mary Anne in TX]

Marcia, bless your heart for being so real and so committed to your purpose (and ours)! You're terrific and courageous and so much more! God speed!

[Lani]

Congratulations and keep up the good work!'

Out of curiosity, have any other of your family members with breast cancer tested her2+, have any others been treated with herceptin? How long after initial diagnosis did their cancer recur (if and when it did) and , without being insensitive, of those who died, how long did they survive after recurrence/metastasis? Since her2 has only been tested for relatively recently, the average time to recurrence and average survival after recurrence give some
inkling as to whether it might have been her2+ bc. The reason I ask is they have discovered a new gene tied to her2 called FOXP3 (don't remember if you responded to my post on that or my other post on familial bc)which is X-linked so that only a single copy of the gene is required in order to result in breast cancer. Researchers don't seem to interested in it yet, as they don't know of enought familial bc
to "warrant a study"(how many should it take?)

I ave previously posted asking those on the board if her2 bd might run in their family. Perhaps I should post again (I think many threads remain lost after the technical difficulties we had earlier this year)

Congratulations again and thanks in advance for any info. I am sure there are those with daughters who would appreciate a test to determine if they have passed this on should this pan out.

[Joanne S]

Lani, Some time ago I read something that said HER2 is not hereditery, and that although HER2 has something to do with Chromosome 17, her2 positive in only present on the surface of cancer cells (not normal cells).

[Soccermom]

Hey Lani!
Sorry for the delay in response... I had healing issues and ended up having to go back into surgery to get remove necrotic tissue etc. So...I just got home from Louisiana...
No one in my family has had Her2neu + BC. I know that at my Moms initial diagnosis back in 1990,and again in 1995 (new primary) Her2 testing wasnt available. Never thought to have her tumors looked at and possibly tested (more recently)...Hmmm.

We will operate on the assumption that my DD is high risk and get her in a high risk screening program as soon as she turns 21.

Thanks for sharing in the concern for our children,
Marcia

[new shoes]

Congrats! I too decided to take the plunge and am recovering from the insertion of my permanent implants. Boy, these are much perkier than my originals! I am happy to have this phase of my recovery behind me.

I have my next H treatment on Tues. Even tho we expect 108F here I end up wearing a sweater on infusion days because the chills are so bad. They only last about 24 hours and then its back to the hot flashes and night sweats from the Tam. Does any one else have these dramatic swings in body temp? Now that I am reconstructed I am having "boob sweats" for the first time in over a year.

I will now be able to buy something other than shoes. My weight and chest size have stablized, so I'm going to indulge in some shopping therapy.

God loves to laugh.

[hutchibk]

I am definitely more sensitive to external temperature changes over the last 3 years of treatment. And my internal temperature is a mystery, an inexact science as it were. But, I just take a hoody with me everywhere I go, because it seems I create my own personal weather no matter where I am...

[Soccermom]

Hey there Jen and Brenda..

Love the "personal weather" comment Brenda! Since surgery two weeks ago I havent had many hot flashes... but having been fighting infection and have been on antibiotics.
Best wishes on your new "boobettes" ,Jennifer! (Whats a "boob sweat"?)

Hugs,Marcia

[Vic]

Hi Marcia,

This is a great idea for empowering women and sharing the very real message of what goes on during and following bc. Excellent and I'm sure you look "maaaaaaaaahhhhhhhvelous."

Vicki Z in Calif.

[Sheila]

I don't know what boob sweats are, but I do know what icecubeboob is...at the least sign of cold, I swear any liquid in my implant turns to ice....it feels so cold it hurts....guess I need a boob heater for winter here in IL.
Congrats on the calendar...way to go! You are shining for many of us!

[Soccermom]

Hi Guys,
Havent been around too much as I had some complications and had to return to surgery (2X). Still on three kinds of antibiotics and anti fungals and wondering when did I get to be such a lousy healer?! Nevr had these healing issues before BC,argh.
Sheila thanks for kind comments! I have heard that those with implants that live in cold climes have "iceboob" issues, its ALWAYS something!
Just wanted to share another interview that i did...I actually like this one better...

http://www2.tbo.com/content/2007/sep/13/breast-cancer-survivors-calendar-sends-message-you/?life-health



Last night I read about our Shell passing away and went to bed crying. I have very dear friends on the FORCE site recurring and of course so many sweet friends here...It breaks my heart , each and every time we lose someone.
I HATE this da*n disease ! Next year I will pose for the 2010 calendar with my newly reconstructed boobettes...ANYTHING to get us that CURE!
All for the cause!!!
Marcia

[harrie]

Marcia,
I read about your experiences with the infection. I have a friend in CA that recently had the DIEP and had a very serious infection. She ended up going to an infectious disease specialist and I believe it is now contained. They said it must have been something she picked up while in the hospital.
I just had my stage 2 of the DIEP about 2 wks ago. I had no problems with stage 1, but last wk I had an inflammation, probably cellulitis, on one breast. I was on antibiotics for 7 days and the redness has been reduced significantly. Hopefully it is all contained. It was never painful and there was no discharge, just red.
I hope your healing goes well from here on. Let me know if I can share with you any of my experiences.
Take care.
Maryanne

[Soccermom]

Hi Harrie,
I JUST walked in the door from a trip to see my Surgeons (3 1/2 hrs away). They packed the area that will not heal in my abdomen (on the surface its just the drain opening size,but underneath about 2 1/2 inches wide,yikes!). I havent been running a fever for about 10 days (finally) am havreto continue to take Levaquin and Clindamycin (which leaves an aftertaste reminiscent of Adriamycin,,YUCK) and antifungals. I still have one abdominal drain which we are reluctant to remove. The cultures were negative so I believe the infection (cellulitis) is under control its just the danged thing will have to heal from inside now. I just hope I have the guts to actually pack this thing again tonight. Pulling my own drain last week was about as "surgically inclined" as I ever want to get. Although....I can now say (think Holiday Inn Express commercial on TV)" NO, I am not a breast surgeon, but I DID pull my own drain last week!" LOL
Where did you have DIEP surgery,Harrie...Calif?
I see you are BRCA2, have you read SWANKY's thread about the PARP inhibitors? They are for BRCA folks...I also saw there is another lady here, Kimberly Lewis who is BRCA also.
Sorry to be so scattered, and I do appreciate your offer of help, its just that so far I think its a waiting game. My Doc said that if we can get it to heal internally when I have revisions (stage2) they can fix it up. I have complete faith in my Docs, they are kind,gentle ,cautious surgeons,
GOOD healing to you Harrie, I hope you thrilled with your end result!
Hugs,marcia

[Sheila]

Marcia
THe antibiotics you are on are as strong as they get for oral ones...don't skip any...cellulitis is nothing to mess with...the more infection, the more scarring. Take care of yourself...my prayers for a quick healing on this...and perfect results!

[Soccermom]

((((((((thanks Sheila!)))))))))

[harrie]

Marcia,
I have an outstanding plastic surgeon. If you go to the site www.plasticsurgery.la (http://www.plasticsurgery.la) you can read about my doctor. He is located in Southern California.
So far I am very thrilled with my results.
I will try to find Swanky's thread. Thanks for the suggestion.

Maryanne