Educate Yourself

Posted by & filed under Beating the Beast.

Rodney Warner, Esq

Rodney Warner, Esq

What You Have, What To Do About It

When I was diagnosed nine years ago, the internet was a very different place. Not nearly as polished. Search engines weren’t as good. Hour after hour I’d search, and read, and search, and read. When the possibility of lymphoma was brought up by my doctor, I went to the internet, looked up the symptoms. And I had most of them. It was like someone turned on a light. This mystery illness that had tripped me up for a while, then threw me in a ditch, finally had a name.

The internet is a tremendous resource, and it’s expanding every minute. Most of those I’ve talked to about researching their illness report the same experience I had: an unquenchable thirst for knowledge, hours of research, then the point of diminishing returns. You don’t want to learn any more. You either can’t find anything new, anything you can understand or the news is just too depressing to read any longer.

OncoLink is an excellent resource, but there are many others. These are some that I’ve used….

If you really want to drive yourself nuts, try MedlinePlus. You can learn about cancers, drugs, supplements and herbs and clinical trials. For those of us who are truly crazed for information, there’s PubMed . It’s an incredibly powerful source of information, but unless you’re a doctor, it may not make much sense. It’s a database containing thousands of medical journal articles. Give it a try .

Who Should Treat You, Where

We ask so much of doctors. They have to be brilliant, well versed in the latest treatment and research, warm, sociable, understanding, compassionate and gifted at communicating with their patients. That’s all we ask. Good luck finding that doctor. You’re not perfect, I’m not perfect and neither is every doctor.

How to pick a doctor? There’s no right answer to that question. Whoever is treating you will probably recommend someone. I suggest asking your doctor, if you were in my shoes, who would go to? You can ask someone you know who’s been treated for cancer. Find a support group for those with your cancer. Who are attendees going to see? Who would they suggest? Who would they avoid?

What I look for in a doctor is humility. If you’re considering a doctor, and he/she thinks he/she knows everything, keep looking. Oncology is an art, not a science. Each patient is an experiment, each person will react to treatment his/her own way. The doctor may have a good idea how you’ll respond, but only time will tell.

Ken Miller at Tufts Medical Center in Boston was my allogeneic bone marrow transplant doctor. As of 2003, he’d been doing transplants for about 35 years, and I was about transplant number 1500 for him. I asked him what he’d learned in the past 35 years. He replied, “I’ve learned how much I don’t know.” That may not have been the right answer for you, but that was spot on for me. I think humility is a good thing.

There are plusses and minuses to being treated at a major cancer center. I’ve been treated at bigger, and smaller, hospitals. I’ve been happy at both. If you have a rare, or advanced, cancer, you might want to give a second look at a major cancer center. But don’t assume that because your local hospital isn’t big and world famous, you won’t get state of the art care, or the doctors are less qualified. Maybe they just don’t want to work at a big hospital, in a big city. If you’re undecided as to where to get treatment, check out this really good article on cancer center advertising.

Talk to different doctors. You may feel the Big Cancer Center Treatment Plan would be right for you, but the logistics of going back and forth would be a pain. You could talk to the Local Cancer Center doctor about what you want and find you can get the same treatment closer to home, with less hassle.

Who Could Help

If you’re blessed with friends and family willing and able to help, let them. Don’t play the martyr. Don’t be proud. Be gracious. If someone cares about you, they’ll want to help. They won’t be able to cure you, but they want to do something. Refusing their help will be denying them the opportunity to feel good. You get help, they feel good. It’s a win-win.

If there’s a number of people wanting to help, appoint one the Project Manager (PM). If someone tells you they want to cook meals, mow your lawn, bring your kids to little league practice, drive you to the doctor, walk your dog, give them the name and phone number of the PM. You will tell the PM what you need help with, when. The PM will coordinate your needs, with the help your friends and family will supply.

If you feel the need, ask your treating physician if there any nearby support groups you, and/or your caregiver, can attend. Having attended many myself, a well run group can be a big help and sometimes, will leave you laughing. Talking to those on the same path, to people who’ve been there-done that, can help allay fears.

Two organizations you should look into are Gilda’s Club and the Wellness Community. They provide free networking, support, educational and social activities for cancer survivors, care givers, family and friends. Their national organizations merged, but local chapters are independently run. See if there’s a chapter near you, click here.

If you’re feeling overwhelmed and that your emotions are getting out of hand, talk to your physician. Getting psychological help doesn’t carry the stigma it used to, but for some it may be difficult to ask for. Don’t be afraid to ask for help. During my treatment, I was seen by health care professionals ranging from social workers to a psychiatrist. If you do get help, and medications, make sure your doctor knows what you’re taking. Some meds don’t mix well together.

What do you need to know? What has your knowledge quest been like?


One Response to “Educate Yourself”

  • Lois

    “What do you need to know…. What has your knowledge quest been like?”

    Mine has been an 8-year quest. Here is an example of today’s episode for me:

    After reading this morning’s Oncolink posted article (Androgen deprivation therapy in prostate cancer may be associated with cardiovascular risk — Eric Metcalf — Tuesday, February 2, 2010 (Last Updated: 02/03/2010), this is my train of thought as a breast cancer patient treated with doxorubicin and thus subject to possible cardiac damage:

    Is the use of doxorubicin and/or trastuzumab damaging to the heart because of the increasing toxicity to the heart, or is the REAL culprit behind the increased damage simply the lowered levels of the hormone(s), including testosterone? Are the women who have the greatest heart damage from treatment also those who have the lowest levels of hormones due to the destruction of hormonal production by the doxorubicin and/or trastuzumab? Would it help the women whose EFs are dropping to be given supplementation with testosterone, to be able to complete the doxorubicin plus trastuzumab?

    As a breast cancer patient who participated in the trial for the use of testosterone by breast cancer patients, and who has remained without evidence of disease as a HER2+++ patient for 8 years and never received trastuzumab, I wonder…. I continue on low-dose testosterone…

    Searching the net, searching the net….


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