Montel Williams and I

LeahM · 10-15-2013, 04:47 PM

What a day. I was at the PA Breast Cancer Coalition 20th Conference, I got to meet and hug the president of PBCC Pat Murphy and I got to meet and hug and briefly speak to Dr. Slamon (did you know that is Slay-mon, not Slam-on? I didn't). I am trying to get my thoughts together about that day.

Meanwhile Living Well With Montel aired its first webinar today and I am in it. I have crazy big eyes in it...what is up with that??

Here is a link, it should work for you. It is about 25 min. long so pop some popcorn.

I am a bit disappointed in that I really addressed dense breast tissue and being our own advocates, both of which got edited out. I suppose tho that they got what they wanted, which was emotion. Every time I teared up, well...that did not get edited out. I hope you enjoy. And I hope I represented us well.
http://link.brightcove.com/services/...=2744027225001

Best
Leah

linn65 · 10-15-2013, 06:53 PM

Great video! There needs to be even more awareness. The nurse navigator is a great idea, and I would have liked to have had one. We have came along way it seems.

Becky · 10-16-2013, 09:01 AM

This was great and you looked wonderful (as well as your family)!

'lizbeth · 10-16-2013, 10:54 AM

Leah,

You are so well spoken. I thought you were a perfect representative. There's only so much Montel can cover in one program, but I think you planted a seed for topics for future programs. Your husband and daughter looked fabulous and were very easy to understand. I like how Montel addressed that the entire family was affected, and showed what a positive way that your family worked through your diagnosis and treatment.

I did feel sorry for the other survivor. She was lost in the system, and it seemed like Montel scolded her for not sticking up for herself. I don't think Montel can relate to how much weight that being male and being someone of importance that is a public figure can improve his medical experience. The experience is not equal for everyone, and with some medical facilities being a patient is like being a second class citizen. Not at your cancer treatment center - they really have the total health of the individual at heart.

I loved your surgeon. She was wonderful. I think the conversation with her at the end helped to educate women about their breasts.

I hope the Montel continues to address breast cancer throughout the year - like he mentioned.

The show seemed very positive and informative. Good Job!

lkc Gumby · 10-16-2013, 05:38 PM

Great video Leah. You articulated The BC experience very well.

mamacze · 10-17-2013, 07:06 AM

SMASHING!! Beautiful eyes - well done!!
You and your family are precious; and for me it was just so fun getting to know the Leah behind our little avatars here at her2support!
Your message was, (unfortunately for us) an "everyman" message but for the general public it is very important. Awareness, early screening and hitting it with everything you've got. I thought you represented us masterfully - thank you for sharing!
XO

KDR · 10-17-2013, 01:25 PM

Leah, I would love to meet you one day. You did an amazing job.

Karen

LeahM · 10-17-2013, 01:56 PM

Thank You Ladies,

Today I had a chance to sit down and watch the episode alone, no distractions. I had my pile of notes with me and as I watched I made more notes. What I realized today is that what I originally thought was edited out wasn't, it just appeared in a different way. While filming I was asked 3 times to address the camera and women watching as if I was sitting on the couch talking to a friend. My points at those times were: knowledge, information, understanding, trust in your medical team. Those points were made throughout the episode just not soley by me. I agree it was an "everymans" message but it is the people who are newly diagnosed that I was speaking to.

Dense breast tissue wasn't discussed on air as much as it was in studio, in fact I did mention that I had dense breasts and that mammo's alone weren't a great diagnostic tool when your breasts are dense. That was edited out completely.

And not surprisingly when I said "I think the new mammo guidelines are bull$&*!" was also edited out.

But, as 'lizbeth said, perhaps I planted a seed for future episodes.

Karen, I will be at the American Museum of Natural History in NYC on Nov 21. I will be chaperoning a group of school kids, wanna meet me there? PM me, I would love to meet (all of) you!

And thanks, it is the strong and empowering women on these forums who have educated me and who have helped me find my voice.

oxoxox
Leah

Andrea Barnett Budin · 10-17-2013, 03:41 PM

Thank you, Leah. You did an excellent job of representing us!

Thank you, Montel. This was one of the most informative shows I've ever seen. Way passed the fluff.

A NURSE NAVIGATOR! I had surgery last June at one of the top Boca hospitals and the lack of coordination was so astounding that about a mnth afterward I wrote a long letter to the Pres of that hospital detailing the areas that were great and pointing out the holes in the system.

In August I had surgery (needle biopsy) @ a satellite location of this hospital. I was immediately contacted by a NURSE NAVIGATOR. It was wonderful. She led me through, organized, informed me, followed up... And on and on.

When the hosp's head of nursing called me re my letter, I mentioned about the Nurse Navigator. Oh, yes, that is wonderful, you're right. But that is a much smaller facility. It is impossible to do that in a hospital our size.

Well, I beg to differ.

When dx in '95, I was sent from the radiologist for an emergency appt w/a breast surgeon over 4th of July weekend, where they opened there office for me Saturday morning. He viewed my mammo and U/S and told me I had bc and that I would need a surgical biopsy. That I would need a mastectomy. He gave me the # of an oncologist (a doc I never planned on seeing in my telephone bk!)

I knew I wanted reconstructive surgery immediately. I was sent to a plastic surgeon who specialized on oncological surgeries.

Each doc gives you a load of information which swirls in your head. My husband and I put the pieces of the puzzle together as best we could, given little time as my 9 cm tumor meant I needed to move quickly. Life and death decisions needed to be made post haste and the gathering of an entirely new vocabulary and medical knowledge was essential to that end.

The woman w/dense breasts apparently was told to get mammos and U/S. I never was told that, though I was told annually that they needed some extra pics as I had dense breasts. I am on a mission for women with dense breasts to have this issue discussed in length. I had no idea I was at increased risk for bc. It is in all my records that my paternal grandmother and paternal aunt had bc.

What is the thinking behind the doc's actions or lack thereof? Yes, it would of course be upsetting, but it also arms you to be alert and gather information.

Again, Leah, you did a magnificent job in your television debut. As did your husband and your darling daughter!! With my admiration and appreciation,

Andi

Bunty · 10-17-2013, 05:41 PM

You are a natural Leah - a great spokesperson for us all.
We have Nurse Navigators here in Australia - Breast Care Nurses who do exactly how she describes in the video. Mostly for Early Stage, but at my facility we have them for the women who are Metastatic, and they are invaluable in 'navigating' the system.

Cheers Marie

Vicky · 10-18-2013, 02:22 PM

Leah-

I logged in today because I have a woman coming over on Monday who was just diagnosed and is lost and struggling. And I thought, how am I going to help her? Then I saw your link and watched and I have to say- thank you! You were so articulate, clear, and knowledgeable! I think this is the exact thing I will sit down and share with my new friend on Monday. I loved what your husband, daughter and doctor all said. They were so insightful and I think it will give us a good place to start!

Thanks for making a difference!
Vicky

jaykay · 11-01-2013, 01:59 PM

Hi Leah,

Just had the chance to look at this segment. You and your family were wonderful.

Best

Jansi

KsGal · 11-01-2013, 09:23 PM

Oh, Leah! Thank you so much for participating in that show and representing everyone so beautifully. You looked so pretty. Why does eveyone else get that beautiful curly hair after chemo...and mine comes back looking like the scarecrow in Wizard of Oz? lol
I admire you and your family (who are just beautiful btw) for allowing cameras into your personal life and your emotions. Im sure this show will help more people than you can imagine.

JillaryJill · 11-02-2013, 06:10 AM

Leah,
Thank for this. You did a great job. Your husband is so sharp and your daughter what a grown up little lady! You should be proud of your family! I wish the dense breast issue could have been covered also....but I really like the emphasis on the nurse navigator. I was assigned one at Rush/ Chicago. She was invaluable to me throughout my treatment and after my treatment. Yes, my onc was the quarterback...but Terri was my day to day contact and she was just terrific. She was invaluable to me.