Beyond the Shock: Another source of misinformation

Tazzy

POWER TO THE PEOPLE

We are getting somewhere. I just received the below from Douglas Feil.  Also below is the attachment he talks about requesting suggestions !   

Carol57 - would you have, know where to get the emails from the specialists you suggested. Dont know why they cant just phone and ask... but whatever !

I was thinking of directing him to the National Lymphedema Network www.lymphnet.org. Non-profit org. But would love other suggestions as I am sure you have some.

Binney - I didn't take this on.. we all took this on.   And yes, if it takes gang action then so be it.

I am still feeling the sarcasm from his "As you have been most helpful" comment... just being cynical I guess and really I dont care what he thinks of me

__________________________________________________________________________________
Michele,

I am working on this as we speak. The video has been pulled from our website and from YouTube. It is still live on www.beyondtheshock.com, but we are getting that resolved by next week. This was very difficult.

In regards to reaching out to the individuals mentioned below. Did you happen to have their emails? A rep from our Programs Dept, was trying to locate this. Our other source at this time concerning information about breast cancer is NCI www.cancer.gov.

Since you have been most helpful, I would be very curious as to get your thoughts about our revised script. It is in the attached document. We still have to get this approved by our medical experts, but I'd be interested to hear your suggestions? We address this topic very briefly, but in addition, perhaps you may suggest a resource we could direct women to that I'm not aware of?

Thanks,

Douglas Feil
VP of Programs

Below is the attached document which I copied and pasted for you.   He would like input and suggestions.

What is Lymphedema?

Lymphedema is a chronic condition that is caused by a disruption or damage to the normal drainage pattern in the lymph nodes. It most often causes swelling of the arm, but it can also affect the breast, chest, and sometimes even the legs. The swelling, caused by an abnormal collection of too much fluid is called lymphedema. Removing the axillary lymph nodes raises your risk for developing lymphedema.

The risk of developing lymphedema continues for the rest of your life so it is imperative that you are aware of these risks. Often it is best to learn about preventative measures for lymphedema before surgery so you will know the signs and symptoms to look for and can discuss treatment options with your physician.

After lymph node surgery, if you experience unusual and painful swelling, you should immediately notify your doctor to monitor it. There is no cure for lymphedema, but your doctor can take steps to reduce swelling and maintain that reduction. With proper health care, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema.

carol57

Tazzy, thanks for staying with this!!  Great outcome!  I'm not at home where I can access my contact list from the recent NLN conference I went to, where I might find some email addresses.  Perhaps Binney, Kira, Becky, or OneBadBoob have resources and can check.  If no one gets them to you tonight or tomorrow, I'll be able to see what I have on Friday morning, and if I find the email addresses, I'll PM you with them.

Binney and Kira will surely add thoughts for responding to that script.  When you answer back with those ideas, be sure to take him up on his offer of resources to send women to...give him the link for stepup-speakout.org for sure!! 

Carol 

Tazzy

Oh I am like a pit bull, once I get my teeth into something I dont let go

If it has to it can wait until Friday - as long as the proper information gets out there. For sure I will add stepup-speakout.org.

As I mentioned when I joined this thread I dont even have LE at the moment, but a good candidate for it - as any of us are. Pissed me off because had I not known better and went to that site I would've thought hey no big deal its not for life. I am doing everything in my power for prevention, but I think its like us getting cancer a real crapshoot as to who does get it. And it is worrying for us.

So on that note, not having LE as I said, if you feel one of you who is suffering from it, feels you would like to take this over please speak up. I am more than happy to continue... but just dont want you feel I am treading on any toes.

I am off for wings and beer with DH and 2 wonderful friends tonight.  Enjoy your evenings. 

kira66715

The swelling is caused by the accumulation of "lymphatic fluid"--not just too much fluid.

And axillary nodes, need to be defined, as the lymph nodes in your axilla/arm pit that drain your breast and arm.

I'm not sure whose emails he's trying to get: he has his "experts"--does he want a specific actual expert's email, because we can get most of them.

Reading the information from the NCI is good, but he has to understand it and put it in layman's terms, which he has not.

Lymphedema is a chronic condition that is caused by a disruption or damage to the normal drainage pattern in the lymph nodes. It can also occur as an inheritied condition. In breast cancer treatment, the lymphatics are damaged by surgery, radiation and some chemotherapy. It most often causes swelling of the arm, but it can also affect the breast, chest, trunk and sometimes even the legs--if there is damage to the nodes that drain the legs. The swelling, caused by an abnormal collection of (too much fluid) lymphatic fluid is called lymphedema. Removing the axillary/arm pit lymph nodes, as well as other breast cancer surgeries, radiation and chemotherapy raises your risk for developing lymphedema.

The risk of developing lymphedema continues for the rest of your life so it is imperative that you are aware of these risks. Often it is best to learn about preventative measures for lymphedema before surgery so you will know the signs and symptoms to look for and can discuss treatment options with your physician.

After lymph node surgery, if you experience (unusual and painful swelling) swelling in your arm/breast/or trunk or any symptoms of heaviness, aching, tightness or pain, you should immediately notify your doctor to monitor it. There is no cure for lymphedema, but your doctor can take steps to reduce swelling and maintain that reduction. With proper health care, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema.

Suggested changes in italics.

Who are they looking for if they have "experts" on their payroll?

THANKS TAZZY! You are the MOST helpful, the rest of us are just shrews.

Kira

The risk of developing lymphedema continues for the rest of your life so it is imperative that you are aware of these risks. Often it is best to learn about preventative measures for lymphedema before surgery so you will know the signs and symptoms to look for and can discuss treatment options with your physician.

After lymph node surgery, if you experience unusual and painful swelling, you should immediately notify your doctor to monitor it. There is no cure for lymphedema, but your doctor can take steps to reduce swelling and maintain that reduction. With proper health care, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema.

kira66715

The swelling is caused by the accumulation of "lymphatic fluid"--not just too much fluid.

And axillary nodes, need to be defined, as the lymph nodes in your axilla/arm pit that drain your breast and arm.

I'm not sure whose emails he's trying to get: he has his "experts"--does he want a specific actual expert's email, because we can get most of them.

Reading the information from the NCI is good, but he has to understand it and put it in layman's terms, which he has not.

Lymphedema is a chronic condition that is caused by a disruption or damage to the normal drainage pattern in the lymph nodes. It can also occur as an inheritied condition. In breast cancer treatment, the lymphatics are damaged by surgery, radiation and some chemotherapy. It most often causes swelling of the arm, but it can also affect the breast, chest, trunk and sometimes even the legs--if there is damage to the nodes that drain the legs. The swelling, caused by an abnormal collection of (too much fluid) lymphatic fluid is called lymphedema. Removing the axillary/arm pit lymph nodes, as well as other breast cancer surgeries, radiation and chemotherapy raises your risk for developing lymphedema.

The risk of developing lymphedema continues for the rest of your life so it is imperative that you are aware of these risks. Often it is best to learn about preventative measures for lymphedema before surgery so you will know the signs and symptoms to look for and can discuss treatment options with your physician.

After lymph node surgery, if you experience (unusual and painful swelling) swelling in your arm/breast/or trunk or any symptoms of heaviness, aching, tightness or pain, you should immediately notify your doctor to monitor it. There is no cure for lymphedema, but your doctor can take steps to reduce swelling and maintain that reduction. With proper health care, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema.

Suggested changes in italics.

Who are they looking for if they have "experts" on their payroll?

THANKS TAZZY! You are the MOST helpful, the rest of us are just shrews.

Kira

carol57

Kira, I had recommended that in her correspondence with him, she suggest he reach out to Andrea Cheville and Janice Cormier. He was referencing 'experts' at Mayo, so I suggested we point him to an LE expert there; and I cannot recall if he mentioned MD Anderson as one of his expert resources, but I thought Janice Cormier would be a logical person to comment on some of his assertions.  He apparently asked for their email addresses --too difficult to network, I suppose-- but I do not have access to either of these women's email addresses until I'm back home on Friday.  If you have them, can you PM Tazzy so she can respond to his request?  He seems sincere in wanting to correct his material.

Carol 

Binney4

Hi, Tazzy,

I sent you the contact information for Drs. Cheville and Cormier in a PM. I agree with Carol that Douglas Fiel seems sincere, and it's really sane of him to ask for your input, since you appear to be the gang leader.

Don't y'all think we want to clarify a bit about therapy? Doctors sometimes DON'T "take steps to reduce the swelling..." And anyway, the step they'd take would be to send the patient to a therapist. Also "proper healthcare" would actually be proper therapy. So how about something like:

"There is no cure for lymphedema, but your doctor can refer you to a qualified lymphedema therapist to reduce swelling and maintain that reduction. With proper therapy, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema."

(My changes are in both italics and bold, because it's the middle of the night and I'm getting bleary-eyed!)

Trust me, Tazzy, nobody is going to feel like you're stepping on our toes--in fact, THANK YOU! As you're only too aware, all of us bc veterans have a stake in this!

Hope the wings were stellar! Sending you cyber brownies for dessert, with all the trimmings!
Binney

kira66715

Why are we doing this guy's work? He didn't have the decency to respond to the vast majority of us. He clearly has resources and cites experts, yet extracts information -- poorly -- from a basic NCI website while saying he has experts. What a sham organization , put out there to help women through the breast cancer experience yet putting out garbage and being horribly unresponsive and ill informed.

carol57

Kira, I hear the frustration in your voice, and you are spot on, of course.  But if we don't correct him, he will let his poor information stand.  Tazzy got a wedge into one door of the world's fortress of LE misinformation.  So we grit our teeth; hold our nose if needed, and do what we can to bandaid what really needs a more comprehensive educational cure.  

kira66715

Carol, I realize that somehow we got through to this unresponsive, unprofessional, uninformed person/organization. I wrote them with my personal email and my credentials as a CLT and other LE credentials and NADA. I wrote them three times.

Any idiot can put out a website, and trademark serious misinformation and then be non-transparent and unresponsive--obviously without any repercussions. And he has the audacity to ask us to do his research!

And he's whining about how hard it was to pull the video. Come on! Your incompetance is no excuse for unmitigated ignorance.

Yeah, I'm ticked off.

Binney knows the founder of this site, and sent an email, no response. 

It's not "After the Shock": it's "This website's behavior is shocking"

Tazzy

Kira, I hear your frustration also, and feel exactly the same way.  Everything you have said is true.  We are doing his work, hard to pull the video from his website - bullshit.  But what I have found in the past is that with these people you get more from them if you come across as being 'helpful' rather than just pissy.  

I am one of these people that if I feel the need write to politicians to ask them why they are doing something.   They are after all our 'servants'.  We pay their wages through taxes.    Sure we can put our frustration in our communications but always be respectful... even if you are seething.  As Carol said, we will do what we have to do.     As long as it gets changed and correct information is out there.   

I have no idea why he responded to me and not any of you.   Maybe my email was the last he received and he thought "Geesh, lets answer this one and get this looney ladies of my back"

I will add the contact info in the email.  Thanks for that Binney.

Anyway.... here is his document with the changes kept in italics.   Let me know of any other's you may want to add/remove.

__________________________

Lymphedema is a chronic condition that is caused by a disruption or damage to the normal drainage pattern in the
lymph nodes. It can also occur as an inheritied condition. In breast cancer treatment, the lymphatics are damaged by surgery, radiation and some chemotherapy. It most often causes swelling of the arm, but it can also affect the breast, chest, trunk and sometimes even the legs--if there is damage to the nodes that drain the legs. The swelling, caused by an abnormal collection of (too much fluid) lymphatic fluid is called lymphedema. Removing the axillary/arm pit lymph nodes, as well as other breast cancer surgeries, radiation and chemotherapy raises your risk
for developing lymphedema. 

The risk of developing lymphedema continues for the rest of your life so it is imperative that you are aware of
these risks. Often it is best to learn about preventative measures for lymphedema before surgery so you will know the signs and symptoms to look for and can discuss treatment options with your physician.  

After lymph node surgery, if you experience swelling in your arm/breast/or trunk or any symptoms of
heaviness, aching, tightness or pain, you should immediately notify your doctor to monitor it. There is no cure for lymphedema, but your doctor can refer you to a qualified lymphedema therapist to reduce swelling and maintain that reduction. With proper therapy, good nutrition, and exercise it may be possible for you to reduce the effects of lymphedema.

 

 

 

Tazzy

Binney... wings were stellar... more stellar were your brownies and all the trimmings

Binney4

Tazzy, that looks good to me.

The sad reality is, how would he (or anybody else) know who's an LE expert? Our doctors don't even know, for the most part. There are few enough doctors in the country who specialize in LE, and it's not a recognized specialty with a directory anyone could access. Shoot, when we get diagnosed it's all we can do to find a therapist, and don't get me started on fitters. It's not an easy thing to find good LE information, and he's obviously come to the right source. Glad he smartened up!

Definitely not a site I'd send anyone to for BC info, considering this trek into the swamp of misinformation. But it's still a site women will stumble on in their search for help--hopefully this will keep them from stumbling OVER lymphedema.

Onward!
Binney

kira66715

Douglas Feil: "learning about breast cancer"--you can view his facebook profile, from their site http://beyondtheshock.com/users/111 

Oh NO!, "Beyond the Shock" is marketed as continuing education for nurses--you subscribe to nurse.com and you can get one credit hour for watching this misinformation.

http://ce.nurse.com/ce650/beyond-the-shock-videos/

He markets this on iTunes as "Dr" Feil

What a large group of staff they have, I do wonder what their budget is and what they're selling--it appears to be education for nurses

http://www.nationalbreastcancer.org/about-nbcf/nbcf-people

The provide funding for a breast cancer vaccine--where do they get these funds?

http://www.nationalbreastcancer.org/nbcf-programs/breast-cancer-research

Charity Navigator gives them a 4 star rating: they have a budget of 11 million dollars.

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8776

With a budget of 11 million dollars, you'd think they could pay for their own research. Wonder where all that income comes from? They have 9 million in assets.

Reportedly, their mission is education and discounted mammograms.

And, on Charity Navigator, they score higher than bc.org.......

Tazzy

kira... what a sleuth you are !   I still never think of googling people or checking them out on facebook.. DOH !  lucky you do.

So instead of going through your link for his FB page... I just went into FB and typed his name in.... seems he's also a budding musician - here's the link should you be interested.

http://www.facebook.com/#!/DouglasFeilMusic

I've read your post kira, but  not checked all the links out - little tired today, went out for dinner with DH, had a busy day and its only 8.40pm.....who stole my energy

I will check out your links tomorrow and also respond to him.  does seem hard to believe that with a budget of 11 million they'd be able to find out a few emails as suggested by us.   And also get experts who know what they are talking about.

He's pissing me off because I think he's being quite condescending to us now.. and that's without looking at the links you attached.

Ok enough.  Cant go to bed being pissed off

Goodnight ladies, sleep well.   

Tazzy

This guy must know someone high up to get the job he is in.... really !  

I am going to send the email and attachement Monday... after conferring with our experts

You'd think that if his MIL is a 2 time survivor she'd be able to give him the correct information. 

Anyway ladies... hoping you are having a wonderful weekend.  My DH is off with his buddies on a 'fishing' weekend so I am having a 'me' weekend. 

Chat Monday !

kira66715

bump for Cinnamon

kira66715

Well, they changed the text, it now reads:

Lymphedema
Removing these lymph nodes raises your risk for developing Lymphedema, a condition that usually causes abnormal swelling of the arms, but can also affect the breast, chest and legs. After lymph node surgery if you experience unusual and painful swelling, you should immediately notify your doctor. 

Just found out that they give money to Lillie Shockney of Johns Hopkins, the "expert" who has written that NO patient at Hopkins has ever gotten LE from a SNB. 

And she just wrote to an exceptional, smart, wonderful woman who posts on this board, reiterating her beliefs, and why LE wouldn't be included in a quality of life for survivors program.....

To put it in perspective:

bc.org raises 3 million a year--Dr. Weiss is paid 211,000

the NLN raises 300,000 a year

The National Breast Cancer Foundation raises 11 million. They could do a lot of good with that money.

(The financials are all on the internet for these charities.)

cinnamonsmiles

Wow. So is that person saying because that particular doctor never saw someone get LE from an SNB in their practice, it can't happen???

I would like to tell her to kiss my ass because I got LE and post mastectomy pain syndrome from sentinel node removal!!!

I say all of us that got LE from a SNB flood her with emails. 

I just looked and she is NOT a doctor. She is a nurse. 

Edited to add: I just did some digging around John Hopkins Lymphedema website. Near the end, it states that patients undergoing a SNB, are not offered the same information offered to those that get axillay node removal because the chance is very slim for someone getting a n SNB to get LE.

Where the hell do they get their info? Obviously they are too busy to read the LE Forum of breastcancer.org and see how many of us got LE.  

kira66715

Here's what Lillie Shockney wrote recently:

For those having sentinel node biopsy only, it is a rarity here to determine lymphedema and the need for precautions is far far less than for someone who had an ax dissection. Actually to date we have only had 2 patients develop lymphedema that I am aware of among the thousands who have had sentinel node biopsy here. many thousands.  

Lillie D. Shockney, RN., BS., MAS
University Distinguished Service Associate Professor of Breast Cancer
Depts of Surgery and Oncology
Administrative Director, Johns Hopkins Breast Clinical Programs
Administrative Director, Johns Hopkins Cancer Survivorship Programs
Associate Professor, JHU School of Medicine, Depts of Surgery, Oncology & Gynecology and Obstetrics
Associate Professor, JHU School of Nursing
601 N Caroline Street, Room 4161
Baltimore, MD 21287

www.hopkinsmedicine.org/breastcenter

And may I add that at the university where I teach, you have to have a higher degree and a whole lot of publications to become an associate professor. Kind of makes Hopkins look like they don't care about the facts.

kareenie

Lillie Shockney is also a two time Breast Cancer survivor.

http://www.hopkinsmedicine.org/avon_foundation_breast_center/team_approach/our_team/leadership/lillie_shockney.html

kira66715

Yeah, but she didn't get LE, so it doesn't exist. And the National Breast Cancer Foundation gives her money.

Jane Armer has presented to her, but obviously she couldn't comprehend what she heard....

Tazzy

I only checked in today whilst DH is finishing up some work... Thanksgiving here.   WTF ????

Seems to be a lot of charlatan's out there.  shame they never think to ask women who are suffering with lymphedema.

Have to get ready now to go over to friends for more Turkey.   Looking forward to reading about this.  

Hope you all manage to have a good Monday.

vlnrph

As of a few minutes ago, the LE video is still menued on Beyond the Shock website but it flips you to the Surgery topic if you try to view it! The few question/comments posted by "patients" appear to be genuine but one gal shared that her surgeon downplays the risk (sound familiar?). Another person referred the inquirer to bc.org for better information...

Tazzy

Hi ladies,

I have received a PM from the Mods... Beyond the Shock wrote to them.  Let me know if you have seen it, otherwise I'll copy and post for you.

301724

Thanks, Tazzy! This goes beyond misinformation. While consumers of information certainly need to be sure to check their sources, those donating to charities need to be careful to do their homework, too - specially pertaining to breast cancer since there are a zillion organizations, some more reputable than others, out there. For info on philanthropy, see: http://www.charitywatch.org/articles/cancer.html.

Tazzy

Here's the email to the Mods - Mods hope I am OK to share ???

________________________________________________

ModeratorsHey, We received a great response from the organization today!! I'l PM the other women the response as well.

Hello to you,

BreastCancer.org reached out to us and kindly explained the key points of frustration that your network has with Beyond The Shock and the incorrect information about lymphedema that was on the website. We would like to work to resolve this issue with you and provide you with an explanation.

We apologize that we were unable to respond to all of your emails. From the many emails received, one individual appeared to be the spokesperson for the network. Due to the volume of emails, we chose to respond to her so she could disseminate the information to others in your network.

We thank you for alerting us to the incorrect information about lymphedema and sincerely apologize for having it on our website. We have removed the video about lymphedema and are in the process of revising both the script and the images. We have spoken with both Dr. Andrea Cheville and Dr. Janice Cormier about lymphedema. We appreciate your recommendations and thank you for connecting us with them. We sent them a revised script about lymphedema and axillary node dissection. They kindly reviewed it and made the appropriate modifications based on their expertise. We will be using the exact script that they sent back to us when making corrections to the subchapter on Lymph Node Removal and Lymphedema.

The National Breast Cancer Foundation provides partial salary funding to patient and nurse navigators for the work they do in early detection outreaches as well as for the work they do helping women with breast cancer through diagnosis, treatment, and survivorship. Lillie Shockney does not receive any personal funding from NBCF. The navigators that we provide partial funding for at Johns Hopkins are all breast cancer survivors and the work that they do is invaluable to women with breast cancer. Lillie is a highly credentialed nurse in the breast cancer world and she works diligently to help breast cancer patients and survivors. She has worked with many breast cancer patients and survivors and we respect her expertise in the field.

We deeply regret that some information on Beyond The Shock was incorrect. We are taking every action rectify this situation. Thanks to this incident, we have learned a lot about lymphedema and the effects that it can have on breast cancer survivors. If you would like to provide constructive feedback or have any questions, we respectfully request that you compile your questions and comments and send them through a contact person that you have selected to correspond with us. Please provide us with the name and email address of the person that you selected and email any feedback or questions to jgottlieb@nbcf.org.

Sincerely,

Janelle Gottlieb

kira66715

So, why is only one person allowed to respond to them? ?????

As survivors, their mission is to assist us. Also, we asked a lot of specific questions about how they spend their huge budget and got no response.

So, we needed the mods to get a reply, we essentially did their work in reviewing their misguided and plain wrong information, discovered that they raise 11 million a year and won't tell us what they do with that money and multiple articles say they use a good chunk of it to over pay the founding family.

I don't find this a victory, I find it patronizing and deceptive, just like the National Breast Cancer Foundation, who are getting rich off breast cancer and not providing any benefit of substance with their huge budget and refuse to communicate with the very women they purport to support.

So glad we could alert them to a mistake in the Beyond the Shock video ,that they sell to nurses.

This is an insult.

I emailed them three times: told them my credentials--have LE, am a CLT, am a professor at a reputable med school, have published chapters in lymphedema textbooks, sit on national LE boards--but I was NOT identified as the ring leader.

And it's clear that they will not answer the real questions of what they do with their money, except line their pockets, and that they will not tolerate any contact from more than one woman with LE.

This is no victory, IMO.

Tazzy

I agree with you Kira.   I wonder why the believed I was your spoke person.... I still think it was because mine was the last email they received.   Again, like other emails received from them, I found it quite condescending.  Also Kira I wonder if they 'ignored' your emails because of your credentials - really I do.   I find this so sad...whether it be from them or another charity/information site.

kareenie

Hee hee maybe we could nominate Kira to be our spokesperson.   They said we could choose one...