A disclaimer here: my opinions have nothing to do with politics. Those who know me know I am NOT a political being. My opinions are about people and their healthcare decision-making.
……………………………….

At least a dozen people have asked me what I think of Elizabeth and John Edwards decision to keep campaigning despite the recurrence of her breast cancer.

My answer is: it’s not up to me to pass judgement! It’s THEIR decision, and I hope only that it’s based on good partnering with her doctors, good advice, and plenty of research into the possibilities.

Watching the Edwards on TV, and reading about them in the press, have raised some of my own emotions from my cancer near-miss. Occasionally I still have some post-traumatic stress reaction — a melt down at a movie, or while reading a book, or hearing someone else’s story. Anyone who has been diagnosed with a death sentence (or who has loved someone with that diagnosis) knows how devastating it can be. I can’t begin to imagine how it feels to have licked it the first time, and then have to go through that again.

The most important impact such upsetting news has, I think, is that you find yourself realigning your own priorities. The reality check of a death sentence helps you better understand what’s really important to you. It’s no longer about things like, “before I die, I want to learn to scuba dive, and see the pyramids.” It’s more like, “I have only limited time, and this is what I want to do with it.”

I instantly found myself with two priorities: family and loved ones first, then work.

For those few months before I learned I had been misdiagnosed, I spent so much time with my loved ones! I was single and not dating anyone at the time. I was lucky in that both my daughters and my parents were living nearby, and we got together several times each week. They were so loving and supportive and that was so important to all of us, to be able to spend that time together. And when I got the final confirmation of my misdiagnosis — we were all together to celebrate, too.

Close behind spending time with my loved ones, and like Elizabeth Edwards, I threw myself into my work and my diagnosis-related research. I was manic in my work at the computer, following through with my instincts that something in my diagnosis was horribly wrong, terribly askew. And I kept up with my workload. I didn’t tell clients about my diagnosis, because I was self-employed and couldn’t afford to lose business. That frenzied approach did two things: first, it allowed me to scour all the information out there to prove my misdiagnosis. Second, I earned more money for my business in 2004 than any prior year! All that work was simply a coping mechanism, albeit a fruitful one.

For right now the Edwards seem to have chosen to put work first and family second. Because Elizabeth’s cancer can be contained and controlled for now, it makes sense to them to do so. It’s not up to any of us to second guess their decision because it’s precisely that: THEIR decision.

My guess is, as time goes on and the cancer spreads, which it will eventually, that their priorities will begin to shift more to family first. They seem to be loving and caring and dedicated people. I can’t imagine it will be any other way.

We need to support them — and I’m not referring to politics here — I mean in the caring way we would for fellow human beings who have a tough road in front of them.

We need to give them credit — because they’ve taken their decision-making and responsibilities seriously, as all sharp patients should.

And we need to thank God that we aren’t in a position to have to make the same kinds of decisions. There but for the grace of God….

	………………
	Want more tools for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tips.
	………………

Earlier this year I shared with you the story of my mother-in-law Helen who, after many months of stomach upset, was diagnosed with ovarian cancer. Because she went so long without a diagnosis, despite complaining of vague symtoms for more than six months, her options are few. At 86 she had surgery, but once they saw how extensive the tumors were, they simply closed her up and told her there was nothing they could do except send her to chemo. She chose not to put herself through chemo. Now she is not doing well and we continue to see her decline. It breaks my heart.

There are a handful of gynecological cancers women need to be concerned with: cervical, ovarian, uterine and others. Name a woman’s reproductive body part, and there’s a threat of cancer associated with it. The problem is that almost all of them are advanced before they are diagnosed. Granted, the symptoms can be vague. In my mother-in-law’s case, she had what she — and her doctor — thought were gastro-related problems. Except that upper GIs, lower GIs and other tests found nothing.

However! (and this is a big however) WHEN the doctor thinks to test for these female cancers, they don’t have to be so difficult to diagnose. In the case of my mother-in-law’s ovarian cancer, a blood test would have indicated what they needed to know. I’m not familiar enough with the others, but I’ve already alluded to the biggest problem: “WHEN the doctor thinks to test” for them.

And that’s the real crux of the problem. Gynecologists may be more inclined to check a woman for these kinds of cancers — but with only vague symptoms, it’s often NOT a gyn a woman visits when she has problems. GPs, internists, sometimes gastroenterologists — they rarely think to test a woman for female reproductive cancers because they know so little about them.

I share all this — and bring you a ray of hope. Last week I heard from Nancy Keelan, a former gynecological cancer patient herself. Despite a 25-year career as a registered nurse, despite suffering for years with very specific symptoms for endometrial cancer, Nancy’s gyn never did diagnose her correctly. Eventually she found herself hospitalized, and another doctor diagnosed her. After treatment for her cancer, Nancy is in remission and now crusades to enlighten other women, and the people who love them, to these invisible cancers. But she lives with the possibility of returning cancer every day, not unlike Elizabeth Edwards.

Nancy lives in New Rochelle, NY and speaks to groups throughout the NYC metro region. If you are a meeting planner, or a human resources manager, or are looking for a speaker who will have a huge influence on your group, I know Nancy would love to help out. If you contact me (blog@everypatientsadvocate.com) I’ll be happy to put you in touch with Nancy. (She doesn’t have a website or I’d just link you.)

No matter where you live (even if you can’t invite Nancy to address your group) — please take this blog post as a warning. If you or a woman in your life begins to complain of vague symptoms, and they are located anywhere within her torso or between her hips, find a gynecologist who will test her for any of the female cancers.

And don’t delay. This is life-saving advice no one can afford to ignore.

	………………
	Want more tools for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tips.
	………………

Earlier this year I shared with you the story of my mother-in-law Helen who, after many months of stomach upset, was diagnosed with ovarian cancer. Because she went so long without a diagnosis, despite complaining of vague symtoms for more than six months, her options are few. At 86 she had surgery, but once they saw how extensive the tumors were, they simply closed her up and told her there was nothing they could do except send her to chemo. She chose not to put herself through chemo. Now she is not doing well and we continue to see her decline. It breaks my heart.

There are a handful of gynecological cancers women need to be concerned with: cervical, ovarian, uterine and others. Name a woman’s reproductive body part, and there’s a threat of cancer associated with it. The problem is that almost all of them are advanced before they are diagnosed. Granted, the symptoms can be vague. In my mother-in-law’s case, she had what she — and her doctor — thought were gastro-related problems. Except that upper GIs, lower GIs and other tests found nothing.

However! (and this is a big however) WHEN the doctor thinks to test for these female cancers, they don’t have to be so difficult to diagnose. In the case of my mother-in-law’s ovarian cancer, a blood test would have indicated what they needed to know. I’m not familiar enough with the others, but I’ve already alluded to the biggest problem: “WHEN the doctor thinks to test” for them.

And that’s the real crux of the problem. Gynecologists may be more inclined to check a woman for these kinds of cancers — but with only vague symptoms, it’s often NOT a gyn a woman visits when she has problems. GPs, internists, sometimes gastroenterologists — they rarely think to test a woman for female reproductive cancers because they know so little about them.

I share all this — and bring you a ray of hope. Last week I heard from Nancy Keelan, a former gynecological cancer patient herself. Despite a 25-year career as a registered nurse, despite suffering for years with very specific symptoms for endometrial cancer, Nancy’s gyn never did diagnose her correctly. Eventually she found herself hospitalized, and another doctor diagnosed her. After treatment for her cancer, Nancy is in remission and now crusades to enlighten other women, and the people who love them, to these invisible cancers. But she lives with the possibility of returning cancer every day, not unlike Elizabeth Edwards.

Nancy lives in New Rochelle, NY and speaks to groups throughout the NYC metro region. If you are a meeting planner, or a human resources manager, or are looking for a speaker who will have a huge influence on your group, I know Nancy would love to help out. If you contact me (blog@everypatientsadvocate.com) I’ll be happy to put you in touch with Nancy. (She doesn’t have a website or I’d just link you.)

No matter where you live (even if you can’t invite Nancy to address your group) — please take this blog post as a warning. If you or a woman in your life begins to complain of vague symptoms, and they are located anywhere within her torso or between her hips, find a gynecologist who will test her for any of the female cancers.

And don’t delay. This is life-saving advice no one can afford to ignore.

	………………
	Want more tools for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tips.
	………………

A press release put out by Dr.Score.com says that the #1 indicator of patient satisfaction with their doctors is the amount of time the doctor spends with them. More time spent equals higher level of satisfaction.

Well — of course!

I can’t imagine too many folks are surprised at this. My email from patients backs this up 100%. The study was conducted with input from more than 5,000 people, and the Dr.Score folks were actually surprised to learn that wait-time (waiting room) wasn’t the biggest complaint. (I find that hard to believe.)

They state that doctors, in order to increase the amount of time they spend with patients, will either have to decrease the number of activities they undertake between patients, or they will have to decrease the numbers of patients they see.

Well — of course again!! But don’t hold your breath.

Don’t forget — the almighty dollar is still the goal. Overhead costs, staff salaries, kids tuitions, fantastic vacations, and hefty mortgages are still demanding satisfaction. There are few doctors who are willing to take a hit on their incomes just so they can spend a few extra minutes with their patients.

Patients — take note! Your satisfaction with the service your doctor provides will be higher if you feel as if your questions have been answered. The best way to make sure that will happen is to be as prepared as possible ahead of any appointment. Make lists of questions. Look up definitions. Have a good sense of what it is you need to know. If you are better prepared, you’ll be more satisfied.

	………………..
	Want more tools for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tips.
	………………..