(speechless)

[AlaskaAngel]

Found on the Mayo Clinic website:

"Breast tissue can be tested for HER2. But routine testing of all breast cancers for HER2 protein at initial diagnosis isn't recommended because the results don't affect treatment decisions. However, if the cancer returns or spreads (metastasizes), a doctor will likely recommend testing for HER2."

http://www.mayoclinic.com/health/breast-cancer/AN00495

[Becky]

This is incredibly ludicrious. I can't believe this would be on the Mayo clinic site. Especially now with the advent of adjuvant Herceptin.


Maybe someone should let them know its there if they have a comment section. Sometimes older parts of a website aren't updated and sometimes, people don't even know that bad info is out there.

Becky

[AlaskaAngel]

Well I thought that too, Becky, but the weird part of it is that the spokesperson mentions 2005 in what he has to say so it can't be old info.


A.A.

[CherylS]

Wow, AA, you said it, speechless. As a Minnesota girl who grew up with Mayo in Rochester this just stuns me. Don't know what to say. I even talked to them on the phone last spring and was going to go there to receive Herceptin if my onc. here in Minneapolis didn't agree to it. That comment just doesn't make sense or align with what they are doing there at all, but I clicked on the link and saw the 2005 date just like you said. Wow, speechless.

[Lolly]

Even more perplexing is the statement earlier in the text of the article:

"...Trastuzumab (Herceptin) — a drug that targets HER2 — may slow the growth of the cancer and even decrease its size. Herceptin may be used as a treatment by itself or combined with chemotherapy. A study published in 2005 also found that Herceptin can reduce breast cancer recurrence by as much as 50 percent..."

Apparently the right hand doesn't know what the left hand is doing!

<3 Lolly

[sassy]

I found a place to contact them by e-mail and sent one with a link to this response asking them to review the information as many of us on this site well know the advantage of early testing and treatment of HER2+. Maybe we should all e-mail them. I go back and see if I can post a link.

Sassy
________
Novana Residence Condo (http://pattayaluxurycondos.com)

[sassy]

Let see if this works:

http://www.mayoclinic.com/health/contact-us/contactus

Sassy

It works.
________
MEDICAL MARJUANNA DISPENCERIES (http://www.dispensaries.org/)

[AlaskaAngel]

Thanks, Sassy! Hopefully they will figure out what the problem is!

Just to put this in the record for posterity:

ASK A CANCER SPECIALIST

HER2-positive breast cancer

Q.

A friend of mine has "HERS" breast cancer. What does that mean?
Terry/ Arizona

A.



You're probably referring to HER2-positive breast cancer — a breast cancer that tests positive for a protein called human epidermal growth factor receptor-2 (HER2), which promotes the growth of cancer cells. In about one of every three breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation can occur in many types of cancer — not only breast cancer.

HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. They're also less responsive to hormone treatment. However, two treatments that may be effective against HER2-positive breast cancer are:

<LI class=doublespace>Trastuzumab (Herceptin) — a drug that targets HER2 — may slow the growth of the cancer and even decrease its size. Herceptin may be used as a treatment by itself or combined with chemotherapy. A study published in 2005 also found that Herceptin can reduce breast cancer recurrence by as much as 50 percent.
Certain chemotherapy medications, such as combinations of anthracycline drugs (doxorubicin, epirubicin).
Breast tissue can be tested for HER2. But routine testing of all breast cancers for HER2 protein at initial diagnosis isn't recommended because the results don't affect treatment decisions. However, if the cancer returns or spreads (metastasizes), a doctor will likely recommend testing for HER2.

[al from Canada]

"You can't always judge a book by its cover."

Al

FYI, the guy who answers the Q's:
http://www.mayoclinic.com/health/biography/SB00036

[AlaskaAngel]

Given the prominence of this institution and the physician, I have to ask the question as to how prevalent this perception is among his colleagues. Is there any interest among us here in having some kind of more formal dialogue between this website and that institution, in behalf of the women being treated under that policy?

AlaskaAngel

[Liz]

In August I went to Mayo since my surgeon was leaving for a 2 week vacation in Europe and we had yet to find the primary tumor in my breast. (I detected the cancer by discovering a very large lymph node.) Within a day they found the tumor and scheduled surgery. I had not even heard of HER2 cancer. They did the testing for this automatically. Thank goodness since it was discovered that I was HER2+++.


Liz

P.S. Mayo is a wonderful facility!!

[Unregistered]

The guy who answers the questions at Mayo needs to " get with the program".
As someone pointed out-- guess the left hand doesn't know what the right hand is doing !!
It's pretty scarey to think that the pros, so called, are skewing the facts of the trials with his " slant"--
Carol

[Ginagce]

....to those who contacted Mayo to let them know that they've got bad info out there. It's so important.

I sat in once on a breast reconstruction session on breastcancer.org. One of the discussion leaders was a prominent bc surgeon here in Philadelphia. She, along with another prominent surgeon from Johns Hopkins, answered questions and talked about DIEP surgery and how wonderful it was that they had found a way to reconstruct using tissue without taking muscle.

When I called that surgeon's practice to see about the surgery, the person answering the phone told me "we don't do that type of surgery because we don't think it works". And that was at a NCI cancer center here in Philadelphia.

The reality is that DIEP involves a lot of microsurgery so many many plastic surgeons are just not capable of doing it.

Made me wonder how many women took that as gospel and had another type of reconstruction that was not their first choice.

I did have DIEP but I had it done in Baltimore. I highly recommend this type of reconstruction and am still appalled at that response.

Thank god there are groups like you out there to educate people and when necessary, protect them.

I will email the mayo site too, just in case the strength in numbers theory applies here.

Ginagce

[Marlys]

I sent the following message to their web site :

-----Original Message-----
User Selected: feedback
Message: I just read an article dated 2/6/2006 in which the
specialist states that all breasts tumors should not be tested for Her2. I question the veracity of this as I am Stage 1, IDC, lumpectomy, 1.5cm tumor, negative sentinel node, HER2+++, ER+++, Pr+. Following A/C times 4, Radiation times 30, I am now on Herceptin every 3 weeks for a year. Since
25-30% of all breast tumors are HER2 positive why not find out before there is metastasis and treat prophylacticaly?

This is their reply"
" Thank you for your e-mail to MayoClinic.com. We have information on our site regarding HER-2. I am including the URL to an article that might be of interest to you:

http://mayoclinic.com/health/breast-cancer/AN00495 (javascript:ol('http://mayoclinic.com/health/breast-cancer/AN00495');)"

Duh! This is the same article I was referring to. I hope others got a better answer.

Marlys

[AlaskaAngel]

I don't how many people make a difference here, or whether we had the help of one or more of the doctors on the board, or maybe Joe and Christine, but it helped and I thank everyone for making a difference. I did as well contact a Mayo Clinic doctor about it that I know that tries very hard to help people.

-A VERY happy AlaskaAngel

[sassy]

Glad to see they changed response---I would hate to think someone would use the previous misinformation and not be tested.

Sassy
________
Vape info (http://johan-luis.tumblr.com/)

[MCS]

all.


Cannot believe! don't they have an editor? don't they have meetings? actually I think it's embarrasing

MCS
(maria)

[CherylS]

I don't want to bash Mayo, it is a wonderful institution. Has anyone tried clicking on that link now? It's completely gone! Is there a new response somewhere?

[CherylS]

just answered my own question. We do that alot around here don't we? I went back to Alaska Angel's original post and clicked on it. There is the revised statement. Good work all.

[Maggie]

"We do that alot around here don't we? I went back to Alaska Angel's original post and clicked on it. There is the revised statement. Good work all."
Cheryl


May I second the "good work all," and add my thanks to all of you for the advice and knowledge you share on this board. Your awesome!

Maggie

[AlaskaAngel]

I'm bringing this old thread forward briefly for consideration of another piece of misinformation that remains online at Mayo. I think Mayo is a great place for treatment, but the problem of misinformation online is still there. Granted, the link I'm concerned about indicates it is a response dated 2002, but for those who are new to bc or less familiar with the lingo or English language, I still think this dated stuff should be designated as OUT OF DATE INFO, or removed. I think this is the same doc that is quoted who was involved with the previous problem that was removed. The thrust of his commentary here (that treatment generally needs to start in 12 weeks) is fine, but the complete lack of any mention of trastuzumab as well as the legitimate exploration of ovarian ablation/hormonal manipulation as a possible alternative just doesn't cut it.

http://www.oncolink.upenn.edu/experts/article.cfm?c=3&s=13&ss=22&id=1780

"Chemotherapy and tamoxifen remain the standard and unwavering recommendations for this patient."


Comments?

-AlaskaAngel

[suzan w]

WHAAAAAAAAAAAAAAAAAAAAAAT???!!! Yikes!

[Rich66]

This must be why so many medical professionals warn about information "from the internet".
;)

[sassy]

I clicked on the link to the doctor and posted a request to remove the outdated and now erroneous treatment protocol, listing a link to the post and a link to this thread. I also requested a reply to my message if possible. We'll see if anything happens.

Maybe if everyone would post a message to the doctor it might get some attention.

Lets try to effect a change once again!

[AlaskaAngel]

To correct my own comments -- this doctor's post is from the Ask the Expert section of the Abramson Cancer Center at the University of Pennsylvania, not Mayo Clinic this time, under Oncolink.

I too sent a request in for correction, so let's hope it doesn't take as long for Abramson to deal with it as it took the Mayo Clinic last time.

A.A.

[AlaskaAngel]

As of today, no change has been made online in this link:

http://www.oncolink.org/experts/article.cfm?c=3&s=13&ss=22&id=1780

Quoted in full to preserve accuracy of content for the purposes of this thread:

Dear OncoLink "Ask The Experts,"

I have been diagnosed with invasive, stage T1c N1 M0, high-grade breast cancer. I've had lumpectomy and axillary node dissection with 3 positive nodes. My receptors are positive as well as the HER2/neu positive. I am 7 weeks post surgery and have not yet started chemo as I am not totally convinced that I want to have it. The doctor said that chemo should be started 3-6 weeks post surgery. I figure it will be about 2 more weeks before I'm done researching alternative possibilities (I just started) to see if I can avoid the chemo and RT. My question is, what negative consequences am I facing by delaying chemo until I am confident that it is the only way out?? I have not been able to find info on this subject, and I feel that I have the right to explore other options without accepting the first thing that is offered to me. Please explain.

http://www.oncolink.org/images/answer.gif
Kevin R. Fox, MD (http://www.oncolink.org/experts/ask.cfm?c=7&id=36), Assistant Director, Clinical Affairs and Associate Professor of Hematology/Oncology at the Abramson Cancer Center of the University of Pennsylvania, responds:

In general, chemotherapy should be started within 12 weeks of the diagnosis. There is probably little harm in waiting a couple of additional weeks, but it must be understood that nothing except chemotherapy and tamoxifen, together, have been researched well enough to be considered "adequate" alternatives.

Chemotherapy and tamoxifen remain the standard and unwavering recommendations for this patient. Also, after a lumpectomy, the addition of radiation therapy is considered the standard of care. Without radiation, the risk of a local recurrence is very high and the addition of radiation therapy decreases the chance of a recurrence significantly.