Let me be your voice

[LeahM]

Hi All,

I have been offered, and I have accepted, an opportunity to spend two hours on Montel Williams couch with an "oncology expert" and my own beloved Breast Surgeon Dr. H. Chung.

This meeting will take place on Fri Sept 20 and I have a list of things I want to say (as I hear NEDenise in my head saying "we are aware, now lets find a cure"), points I want to make etc

What would you say if you could? I would love to speak for you!

Leah

[tricia keegan]

Hi Leah,

I'm highly triple positive (with positive nodes) and my Onc believe's its better for me to continue on Arimidex for ten years, I have some side effects but will continue if it keeps me cancer free, I'd like to ask if the Onc expert agree's with hormone therapy for ten years and I know the trials are not finished yet but would like to know their views. Thanks!

[StephN]

What a great opportunity! Guess you do not know the "air date"?

WE ARE aware, but there are always underserved groups such as might tend to watch a show like Montel. Maybe speak to the younger women "out there" who might think BC could never happen to them. The onc might have some stats to throw into the discussion.

MHO it would be good to chat with the onc about the fact that BC has so many different forms, with differing symptoms. That it is not just ONE disease.

[sarah]

Hello,
1.Is anyone working on something for inflammatory bc?
2.Also how to help with radiation side effects or at least warn people of these so they can act upon them quickly - I've had fibrosis in my lung and a totally collapsed/blocked heart artery - I had chest pain and thought it was asthma, turned out to be a heart attack. Not sure how often this occurs but might be helpful to warn women about chest pains and possible heart issues.
3.Agree, we don't need any more awareness we need cures. we need better and cheaper tumor testing to pinpoint what will help.
We will all be waiting to hear what happened.
thanks
sarah

[JillaryJill]

PREVENTION TOPIC:
I would like to address the whole dense breast issue. Dense breasts photograph white on a mammogram and a cancerous tumor photographs white. I had mamograms every year since I was 40 and my cancer was not caught until I was Stage IIIc with a large tumor. When looking back all of my mammograms had a disclaimer, due to patient having dense breasts certain lesions may not be detected. Many women that I talk to that are routinely having mamograms, I ask them, what type of breast tissue do you have? Do you have dense breasts? Very few of them know what I am talking about. I think Dr.'s need to tell every patient if they have dense breasts and tailor diagnostic imaging to the breast type. i.e.: mammogram plus ultrasound, or breast mri. Or perhaps is there new technology coming in breast imaging where if you have dense breasts, the healthy tissue photographs purple or something and the cancer cells photograph white. Dramatic example I know but you get my point.
WOMEN WHO ARE DIAGNOSED:
Also, I would like previously diagnosed women to search out and find a clinical trial to help advance the science of this horrible disease. I had no idea how long new drugs are delayed because of the long recruiting phase of these drug trials. I think we need awareness in this area.

[karen z]

LeahM,
Let us know the air date when you know.

['lizbeth]

Leah,

What a wonderful opportunity! I will watch for sure, as soon as you know the air date to watch give us a shout.

I am curious as to what Montel will be asking. Would he be kind enough to give you the questions before the show so that you can be prepared? Can we see the question please?

Tell us a little more about your breast surgeon. I tried to google H. Chung Breast Surgeon and couldn't find information.

[Andrea Barnett Budin]

I have dense breasts. Mammo prior to being dx w/4th stage invasive lobular bc was NORMAL. I now get a sono at the same time.

I think my dghtrs (40s now) should get both. I think it's an insurance thing. Yes to mammos, reluctant to pony up the extra bucks for sono.

I also wish I had known -- I self-examined monthly. I never had a lump. Would ask friends, what exactly am I feeling for? It's like a marble or a pea.

I would learn that the general hardness in my left breast, that fit into the palm of my hand (as I turned 50/post menopausal) was in fact bc! ANY CHANGE IN YOUR NORMAL BREAST IS A SIGN YOU NEED TO SEE A BREAST SURGEON -- I now know, and now advise!

I also wish I had had a sono at the time of the last mammo prior to dx.

I believe Montel had bc. Don't quote me.

Would love to be on that couch with you. But yes, please BE OUR VOICE, Leah! And thank you for speaking out for women everywhere!

Andi

[Andrea Barnett Budin]

Montel Williams, On Dr. Mehmet Oz Show, Admits Emotional Eating Following Double Mastectomy (VIDEO) (http://www.huffingtonpost.com/2012/05/03/montel-williams-emotional-eating-double-mastectomy-dr-oz_n_1474980.html)

Andi

[Andrea Barnett Budin]

WOW! What a story. (I just listened to the video...)

[Jackie07]

Please remind the audience about the imperfection of mammograms. My recurrence was not found until almost 4 years because the new growth was mistaken for scar tissue! Luckily I finally made an appointment with the original surgeon and had an mammo ordered through her. That's when the Stage IIB recurrence was confirmed.

Pay attention to your body and listen to your heart. When in doubt, check it out!

[suzan w]

Side effects...such as chemo brain, loss of libido, maybe speak to the huge financial ramifications...
Congrats to you for this wonderful opportunity!

[Mtngrl]

I'm sure you'll know what to say. My consistent message is, "You're not as likely to get breast cancer as you think. But if you do get it, you're much more likely to die from it than you think." A downer, but the truth.

[IrvineFriend]

I actually have a big issue in total with breast cancer in particular. At least in my area, which is Orange County (So CA), all the support groups meet during the day (hospital programs), where the prostate cancer groups and other cancers that include men all meet in the evenings so men can actually get support and work while going through all these appointments. It's so chauvinistic to assume every woman stays at home.

I did not know the enormous amount of time at appointments that would be involved before this. I would let people know what a typical breast cancer patient actually has to go through on a day to day basis just to be treated.

Congrats Leah and thank you for being the voice!

Andi, I have the same experience except I was stage III. There is a law that I believe has passed at least in CA and many other states requiring doctors to inform their patients of their density status if they have dense breasts. Mine are so dense my plastic surgeon thought I had implants already when she first took at look and felt them.

[Andrea Barnett Budin]

The mammo tech would typically take you to the other waiting area... The radiologist would check the pics and if more were needed, back in you'd go.

I ALWAYS HAD TO RETURN TO THE SCENE OF THE CRIME. I was told, by way of explanation -- you have very, very dense breasts. And that was the end of it. Dense breasts meant you needed more angles taken.

Never ever was a sono recommended. Except when I presented with a 9 cm solid mass at mastec! Then, they did a sono, to confirm the unbelievable! Previous mammo was normal.

[LeahM]

Thanks for your input Ladies! I have jotted everything down and will bring it with me on Friday. I received a lengthy email last night from a producer that took me the better part of 3 hours to respond to. I did indicate that I would like to know what we would talk about, what I would be asked, in advance and I do believe that long email full of questions was my answer.

I also, at the end of my return email, asked if I would be given a chance to ask the experts some questions. I hope so.

From what I understand it will be a two hour in studio conversation, no audience. It will then be edited to appear on his Health and Wellness TV show and a series of "webinars". As soon as I have air dates I will let you know. At this point all I know is it will be in the fall. I was told to wear "fall colors", long sleeves, no white, no jeans. So...I went shopping!! And I made a hair apt for Wed., but this hair is a hot mess these days!

Funny story...when I was first contacted I was told taping was in April..so I figured ok, this gives me time to get it together, to grow my hair...so imagine my surprise when last Thurs I find out taping is this Fri, Sept. 20. I almost backed out at that point.

'lizbeth here is a link to my breast surgeon, there is a short video to watch if you wish. On the day of my surgery I remember her holding my hand and rubbing my arm as they put me under:
http://www.lvhn.org/find_a_doctor/profile-1604

[Becky]

A few good things were brought up in this thread.

1. Dense breasts - I think its a crime that we are not informed of this. I actually changed my primary health care provider just after being diagnosed because every year I had my physical and got my mammo through her. As everyone knows, we get a very stunted letter from the mammo facility saying "no changes from last year" and we go on our merry way. However, the doctor gets the bigger, more informational report. When I had my lump, I had to go to the mammo center and pick up all my past studies. They were in a sealed envelope that had a huge sticker on it saying it could only be opened by the doctor (in this case, the breast surgeon that I would be seeing in a couple of hours). Heck with that sticker and I opened the envelope. That's how I found out my lump was cancer (even though I already knew by the way people were treating and talking to me (so gently)). I also read those other 10 reports from over the years. "This woman's breasts are so dense, we cannot see anything. We recommend alternate screening with MRI or ultrasound." EVERY YEAR this was said and I did NOT know and was not told. So I am diagnosed with node positive breast cancer. There should be a law about informing patients about dense breasts and the need for alternate testing with MRI. Get mammo, six months later get MRI. Get mammo, six months later get MRI and so on. I changed doctor's because I was counting on her to tell me.

2. Pinktober - I know we bc gals are sick of it. Me especially since I was diagnosed at the end of August and began everything (surgery early Sept and then chemo in October). With Pink all around me, I felt I could never get away from it even for a moment - shopping at the mall, chain restaurants - pink was everywhere. However, it reminds those who are not affected in anyway (themselves or any family and friends) that maybe they should get a mammogram or a professional breast exam or they think something's up and to stop putting it off. It raises awareness and more importantly, you can't help pink without the green ($). It raises $$$$ for research for the cure. Without the green, the Pink doesn't go away forever. So, it this time of year the Pink really is a downer for me because it was "my time of year" but if Pink produces the Green for a cure or preventative vaccine whatever - I really can't complain. I buy my Cheerios with the pink and yogurt etc so those companies donate the green to eliminate Pink! But I hear ya otherwise.

So Pink says early detection and you can't have early detection if you have dense breasts and don't know it. That's my imput.

[Andrea Barnett Budin]

YES, Becky!

Telling me I have dense breasts, and NOT telling me what they write down behind the scenes, should be criminal!

Certainly NOT IN THE BEST INTERESTS OF THE PATIENT!

I have learned through these many yrs (since my '98 recurrence, which "I" FOUND studying and comparing my blood results and hearing the onc say 3x over 6 mnths WHEN PRODDED for more info -- Well, your liver enzymes are "slightly" -- but very very slight -- I asked for a liver sono, which meant an abdominal sonogram).

I NOW GET A COPY OF EVERY REPORT WRITTEN RE TESTS AND PATHOLOGY REPORTS AND SURGICAL PROCEDURES.

But I never realized there was a hidden report re mammos!! We get the short perfunctory letter -- that's it!

Of course, the insurance companies will balk at the added $$$$ expense of MRIs, which are perhaps only necessary for those with "dense" breasts. Lots of politics will enter the equation. But Becky, you are so right on. There ought to be a law!

Patient's rights are listed all over the place at doc offices and facilities but those reports, which you should have every right to, can help you discuss matters with your doc (who should be discussing matters with you anyway!). Those reports can help you determine a plan of action. Alert you.

Thanks for that, Becky!

(One onc used to dictate his report after an exam seated at the counter, talking into the phone, his back to you as you dressed.

I heard him say, The patient presents as being lobular and HER2+ which is highly unlikely! He gave a brief synopsis of my history and said, IT IS REMARKABLE THAT THE PATIENT HAS SURVIVED THESE MANY YEARS...)

I WAS IN THE ROOM! I don't go to that onc anymore...

I did attend an early morning lecture of his with my husband. Granted he is brilliant and is into bc research. He was talking about one patient who... He was talking about me, in a kinder, gentler, inspirational manner...

Andi

[roz123]

in regards to the dense breast issue we are all so passionate about (I also had very dense breasts) I always tell women to ask for and get a copy of each years mammo reports. My doctors dismissed me when I asked her if I had dense breasts - she dismissed me and told me I was fine (whatever that was supposed to mean) the radiologist report clearly gave the same disclaimer as everyone else seemed to have. Knowing my hypochondriac self I would have asked for an ultrasound had I read my report

YOUNG WOMEN - there is still a pubic misperception that this is a disease of older women. I was 42 (so not really considered all that young) but I did recently meet a 25 yr old and know several mid 30 year olds who also had BC - doctors are so ready to dismiss us younger patients because even they are unaware

great opportunity and good luck
keep us posted

[NEDenise]

Leah!
You go girl!
I have every confidence in your ability to do us all proud!
Denise

[LeahM]

Funny how dense breast tissue seems to be high priority as it was the first thing that came to my mind too. I had dense breast tissues and because of all my benign breast tumors my proactive OB/GYN ordered yearly mammo's and U/S for me as well as U/S every six months too, starting at age 37. My diagnosis was found at age 39 from a mammo when microclacifications were seem behind a benign tumor.

And since I was only 39, addressing young women is high on my list too.

And...in case you were wondering...as I was...Montel is currently not on the air, but he is coming back. He has pulled away from the "who's your daddy" type show to concentrate on Health and Wellness.

http://social.entertainment.msn.com/tv/blogs/post--montel-williams-shooting-new-daytime-talk-show

[SusanN]

I am so excited for you Leah to have been chosen and called for this opportunity!!! Thank you for accepting this and asking for our input, you will do great!! :)

As to "Dense Breast"...the alarm sure went off for me as I read the comments everyone posted...

Andi, I will NEVER forget the day, October 19th, when I "felt" something like a "pea", (which you can see on signature)...I called my PA...the nurse returns my call asking me "exactly" what it feels like...told me to come in the next day...

When I FINALLY had my mammo, the tech was asking me if I had "ran into something"...thinking it was a bruise...as I "waited"...then for the FIRST TIME EVER, had am MRI of my breast...I waited again, only to talk to the radiologist...telling me it wasn't a "cyst", that I have very "dense" breasts... that I needed to call my doctor the next morning as I would need biopsy...I KNEW things weren't good, (the gut feeling) as I've heard too many times of my "dense" breast...

Becky, Julie... the "Crime scene" laid before me...having to wait a few months later, my surgeries, etc...honestly, from what we all are becoming aware of now...who knows how much longer my 2.7cm tumor and positive node would've taken to be found via a pathologial report from my mastectomy had I not found my "pea" and kept calling to push getting my biopsy scheduled, etc...

Indeed...we HAVE to be our own Self Advocates!!

[LeahM]

Well apparently I had some info wrong...there will not be a panel of experts. There will be my BS Dr. Chung and possibly another "survivor" and her BS. There is an oncologist on stand-by in case Dr. Chung suddenly can't make it.

No matter tho, as I would love to hear her opinion on these subjects and I have never had the chance to spend that much time with her at one sitting, except for when I was sedated.

[Andrea Barnett Budin]

So funny, Leah. I too never spent as much time w/my surgeon (last June) than when "under"...

And my onc, though patient and lingers a tad, over the yrs, our "visits" have been shorter and shorter. A sign of the times, and it is so not in the patient's best interest.

Time is $$$...

(P.S. When my onc was in another state, at Univ of Tenn, for 5 yrs, he would stay in touch, offering me ready advise when I reached out by cell phone or email. When he attended a Fla convention, Paul and I took him out to dinner at his hotel in Ft. Lauderdale. We sipped wine and ate steak and chatted for 3 hrs. IT WAS DIVINE. So much info was exchanged! We do love that man.)

[Lovemyboys3]

What a great opportunity!

As you stated above, I feel that talking to the younger group is very important. I am 33 and never would have had a mammogram if it wasn't for the Pagent Disease that made itself know. No pain, no lump, no discharge, just one day I notice a tiny lesion on the nipple that went away after 2 days. I had no other concern and if it wasn't for a wonderful OBGYN who listened to my concerns this would not have been found for a quite a while. At the time of the mammogram the lesion had healed and she could not see or feel anything wrong. She said normally I wouldn't need a mammogram or sono until I was 40 because the insurance would not cover it. I decided to pay out of pocket just to be sure and here am. Stage 1A Her2+++ Breast Cancer at age 33. I am outraged when I hear that things like Papsmears, blood work and anything considered prevention is covered at 100% but a mammogram is not unless you are over 40. Well that is the way my insurance is at least. The sooner mammograms and sonos are part of yearly check ups for a younger generation the better. How about we find ways to prevent or find cancer sooner along with finding a cure and/or treatment. I would think preventing or finding cancer early would be more cost effective then treating a late stage cancer.

Anyway, just a few thoughts. Thank you for being our voice. Let us know when the air date is. I am excited to see it.

[LeahM]

Good Morning Friends,

I had my afternoon with Montel and it was quite an interesting experience. If you don't know much about him let me say a few things. He has MS. He is quite outspoken about this and as a man with means he does a lot to find a cure for that. He is involved with all kinds of studies, trials etc and he works hard to maintain a healthy life style. I found him to be quite passionate and if he follows thru with what he says he wants to do he could be a good advocate for us.

One of the things I mentioned is that I had a nurse navigator, that my hospital Lehigh Valley Health Network has an integrated and comprehensive cancer team and the nurse navigator really drives that cart. I stated that I don't know how I could have gotten thru without my Jane to guide me. There was another BC "survivor" there and she was almost in tears to hear hhow smooth things went for me as she struggled (6 years ago) to find the right MD's and the right recourses. He says all people in medical crisis should have a Jane, and I don't disagree.

I did look right into the camera and state that women with dense breast tissue need to know that (first) they have dense breast tissue, that that is a question they should ask. And (second) that if they do have dense breast tissue they should not rely on their mammo as a diagnostic tool but should instead ask for U/S and MRI. (as a side note, I have for years thought I was special as I got both mammo and U/S but it turns out, I'm not. LVHN policy is to inform women of their dense breasts and immediately do further studies...I did learn a lot from my Dr. Chung too)

I also looked straight into the camera and stated that as breast cancer patients we need to be our best advocates. We need to understand our disease and the pathology of it. We need to know what meds/chemo we are being given and WHY and HOW they work. We need to search for clinical trials and TRUST our MD's. Not having a good relationship is, IMO, detrimental to your health care. We need to find support however we can and accept the help of those who want to help.

I watched Dr. Chung talk on camera about breast health, changes (tiny microscopic changes that I never knew about) that we should be looking for. I heard her speak that mammo's are available for all ages and that there is financial help for the uninsured. She mentioned that the new guidelines to start mammo's are just that....guidelines and have not been approved by the ADA and the MD's are still ordering them beginning at age 40 unless there is an issue (like I had). (on a side note, I never had trouble with my insurance covering my breast health. I had my first mammo, biopsy and removal of a benign tumor at age 25)

Dr. Chung also spent quite a bit of time discussing LVHN approach to cancer care...which again Montel found fascinating. He just loves the nurse navigator, I thought he might pull a Tom Cruise and start jumping on the chair.

Privately Dr. Chung and I discussed onco-typing. I was unaware that LVHN did that. I didn't get it done she said because I was HER2+ and only slightly ER+(5%). She told me they do it when ER and PR are strongly + and HER is -. She said that while I loathe the words "standard of care" the standard was the best thing for me. We also discussed the role of birth control pills and the occurrence of BC, she seemed on the fence about it but I can assure you my daughter will never take BCP! We talked about the new studies on Tamox etc and while the studies are ongoing she feels that the longer you can take something that will help keep your cancer at bay then the better off you will be.

That is about it, the readers digest condensed book version of my day. It was truly wonderful. Montel was easy to talk to and I do hope they don't edit out the parts I think are most important. His new website can be found Living Well With Montel. As I understand the taping will first be aired as a webinar. I don't understand that too much except that it will be on your PC. I hope we don't have to pay or "join" something to access it. He says it will be up in Oct on line and I get the impression that he is using this webinar stuff he is doing to help shop around for a TV network. If you read, and believe, what you can find about it on Google then it does sound like he will be back on TV. But no one confirmed or denied that. So, I wait. I am good at waiting these days.

One last thing (and I don't know if it will come to pass but it's so very cool I gotta share) Montel says he would like to keep in touch with me and my family (Alan and Michelle got some air time too) via Skype (which I need to install) every few months. He says he was impressed with my "spunk" and my "joy of living" and feels I could help other women as they walk thru cancerland.

Also, there was talk between him Dr. Chung and LVHN head of media (who was there as moral support) about Montel coming to LVHN in about 5 weeks on his way home from Pittsburg to see for himself the integrated and comprehensive health care in action. Which would just be sooo freaking cool!

Oh, and I am going to an ACS Making Strides Bling You Bra Event and Auction on Oct 1 so he autographed a bra. Super cool!! Should be a fun night, men walking around in the blinged out bras up for auction! Real family treat!

Thanks all for your support and kind words leading up to yesterday. I do hope I represented us well.

Best
Leah

['lizbeth]

Leah,

The entire afternoon sounds amazing. What a memory for detail you have!

I had a nurse that managed care at Balboa, which was quite helpful. Before when I was in the military system I just was spinning my wheels, didn't know what to do. What the surgeon was doing seemed incomplete and I didn't know anything about cancer back then.

I too had the breast density issue - with 2 lesions showing up on an MRI, and not on the mammogram nor the ultrasound. That is why I insisted on a recent breast MRI. So that I could truly know that I don't have any cancer. So I really appreciate the dense breast topic being addressed.

And I love what you said about being your own best advocate. I can't believe how many other patients in the infusion rooms where hooked up to an IV, yet had no idea what they were receiving. Really? How can you make an informed decision about your healthcare if you don't even know how you are treating it? And if they don't know what they were receiving, did they know the side effects and how to manage them?

And I love that you all discussed the guidelines for mammograms. I really really should have had one at 40, but hey who gets breast cancer at such a young age? Uh, well . . . me. So hearing that California has switched to offering mammograms at 50 - makes me cringe.

You offered so many wonderful details, and the entire experience seems so positive. I'm glad that you had this opportunity. That you hit it off with Montel and will be keeping in touch.

I look forward to watching it on the television!

[NEDenise]

Leah!
Well done, my friend!
I like your spunk too!
Clearly Montel knows a good thing when he sees it!
Denise

[Jean]

I have to wonder how many of us who have dx. heard for years they had dense breasts?

Going back in my 40's I was told this and I even asked it this gave me a greater level of concern for breast cancer, my dr. then never said anything. Just told me it was difficult to see image.

I now have mammo at 6mo. then the next 6 mo's have an MRI.
As far as not considering younger women - that is a pure crime. Breast cancer has become more relevant in the younger age groups. We are exposed to many toxic
chemicals and components we are not even aware of.
I believe all women must be conscious of the threat of bc.

Best,
Jean

[Mtngrl]

Leah,

Good job! Thanks for doing that, and thanks for the clear and fascinating report about your experiences.

[SusanN]

I "applaud" you Leah...WAY TO GO!!! :)
Dense breasts...hmmm...I wonder how long this 2.7cm tumor has been here...all I EVER heard was "your breasts are so dense!"
I could only smile when I read about how he was impressed with your "spunk & joy of living!" I know about it...!!! :)
What I'm learning...THANK YOU SO MUCH FOR YOUR VOICE!!!

[StephN]

Yes, I second and third the "well done" and applause.

I did have mammograms and for 10 years before I found my lump got the letters saying there was nothing concerning on my test, with the added info about having dense breasts and the warning verbiage that some 10% of tumors are missed by standard mammograms. This was well before there were breast MRI's and even the ultrasounds were not that good.

We now have the MRI's and much better ultrasound imaging, but there is still a high population of us females who have dense breast tissue.

So flogging the issue so many here have had as a problem are not wasted words.

P.S. I am very glad to hear the Montel is changing his focus and wanting to air some more worthwhile fare.