“Dear Cancer.gov: You Dropped the Ball. Now, Pick it Up!”

On August 13, 2013, I posted to this blog about going to the web site cancer.gov, the web site of the National Cancer Institutes, to learn what I could about the cancer with which I was diagnosed in July: fallopian tube cancer. It is the most rare form of female reproductive cancer, but still, I expected that of all the web sites that offer cancer information, this would be one of the most informative.

Unbelievably, I found no listing for fallopian tube cancer. With that, I was immediately activated, and launched into researching who headed this outfit. In my experience in the business world, it’s easy to find lieutenants who can say, “no”. It’s always much better to go to the general who can say, “yes”, and make it stick. So, I went hunting for the big guy or gal.

I found that the director of the National Cancer Institutes was and is Dr. Harold Varmus. I obtained his e-mail address and, on Aug. 16, 2013, wrote him this message:

Dr. Varmus: 

As a newly diagnosed patient with fallopian tube cancer, I was quite dismayed to see that this type of cancer is not listed on the web site of the National Cancer Institutes. I am writing to respectfully request that it be added as soon as is practicable.

In the research I’ve conducted on fallopian tube cancer, I have learned of its comparative rarity; however, I have also learned that in some cases, cancer that was incorrectly labeled as ovarian cancer originated in the fallopian tube and thus, should’ve been categorized as fallopian tube cancer. Therefore, the incidence of FTC may be more common than once thought. Please refer to this press release appearing on your own web site, cancer.gov:

http://www.cancer.gov/newscenter/cancerresearchnews/2012/OvarianCancerInKnockoutMice

You are probably (hopefully) aware that, unlike ovarian cancer, fallopian tube cancer presents with symptoms that can lead to early detection. In my case, as a post-menopausal woman, “spotting” led me to see my gynecologist, then to a series of tests, then to a gynecologic oncologist, and then to the operating room, where FTC was ultimately confirmed. 

Awareness of my own body and a proactive attitude were my allies; other women might not be so fortunate, but if your web site even mentioned FTC as a women’s cancer, information about this disease and it symptoms might raise awareness and save lives. 

Inasmuch as cancer.gov is a vital, national source of information about cancer, that fallopian tube cancer is not listed as a cancer type is inexcusable. I await your response to this message containing assurances that fallopian tube cancer will be listed, and the time frame in which such will occur. 

Thank you for the life-saving work you are doing through your web site; I hope you will agree that adding this type of cancer will only save more lives.

Regards,

Cissy Beasley

On the same day, Aug. 16, 2013, I received this response from Dr. Varmus:

Thanks, we agree.   FTC is mentioned in the PDQ entry for ovarian cancer but warrants its own. My colleagues at the NCI will take care of it ASAP.  Thanks for drawing our attention to this.

I wrote him immediately and thanked him for his speedy reply and for his commitment to adding this information to cancer.gov.

Over the months after receiving his positive response, I checked cancer.gov and never found the listing. I excused this by thinking that this was a very large organization and such changes don’t happen overnight. Moreover, by this time, I was fully engulfed in chemotherapy, and my attentions were trained on coping with the rigors and challenges of treatment. While the listing for fallopian tube cancer has remained in my consciousness, I had not been checking the site for a listing. Today I went there.

To my dismay, I discovered no listing for fallopian tube cancer. Now, almost a year after my final treatment, and in full possession of my energy and determination, I hopped right on e-mail and wrote Dr. Varmus the following message, with his response following:

Dear Dr. Varmus: 

I am replying to you via your message to me on 8-16-13 regarding your assent that fallopian tube cancer should be added as a separate type of cancer on your web site, cancer.gov.

Since our correspondence last year, I have undergone and completed chemotherapy and as of today, I am doing very well. With treatment occupying all of my attention and energy since I contacted you, I put the matter of whether or not fallopian tube cancer really had been added, per your assurance, to the back of my mind.

Today I checked cancer.gov, and, to my great disappointment, I do not find it listed. Either I’m looking in the wrong place, or it has not been added. If you can direct me to where I can find it, if it is there, I would appreciate it. 

In the interest of helping alert and inform other women about this type of cancer, I will remain vigilant in checking that your site lists fallopian tube cancer as a separate type. The web site of the American Cancer Society lists fallopian tube cancer as its own type; even though that is hugely helpful, where cancer is concerned, there is no such thing as too much information.

I hope your plan to add fallopian tube cancer to cancer.gov will come to fruition very soon!

Thanks and regards,

Cissy Beasley

From Dr. Varmus, 12-1-14:

Ms. Beasley,

I appreciate your drawing my attention to this issue again; I hadn’t checked to see if the promised changes were made.   I have asked Dr. Barry Kramer, the director of NCI’s Division of Cancer Prevention and a leader of PDQ, to work with his staff to make appropriate adjustments and to keep you abreast of the changes.

Many thanks for your advice and constructive comments. 

Harold Varmus

Even though they’ve dropped the ball on implementing the requested and promised addition, I can only imagine the volume of e-mails Dr. Varmus receives. That he has responded to my messages so quickly is pretty amazing! I’m glad to have the name of the go-to person on this, interesting that he is a leader of “PDQ”. I can only hope that means they’ll get this done PDQ!

From July to December 2013, I lived in the world of cancer as a patient, actively receiving treatment. When they removed my port at the end of last December, my fourth surgery of the year, I felt I’d left cancer behind.

With the blessing of what might be called just a glancing blow, and with all my personal resources intact, I feel I must use my skills, abilities and strength to act on behalf of women whose future may hold a diagnosis of fallopian tube cancer. They need to know what I know, and web sites like cancer.gov need to step up and work harder to help them to know if fallopian tube cancer is knocking on their door.

We’re not always, if ever, supposed to know why things happen in our lives…why people come along, why we have losses and gains, and why we get cancer. For me, it seems that I should use my experience as a cancer patient to try to help others. As mentioned in a previous blog post, I have felt chosen for this mission, and with that, I must turn a challenge into an opportunity to learn, grow, and help. To do anything else would, for me, let cancer win. That is not happening on my watch!

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One Response to “Dear Cancer.gov: You Dropped the Ball. Now, Pick it Up!”

  1. Raymond says:

    Cissy,
    Your determination and desire to help others is truly an inspiration! Thank you for continuing to share.

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