The Assertive Cancer Patient

Cancer Survivors Project

I just found this one, on a list of sites that The Cheeky Librarian e-mailed to me:

Cancer Survivors Project

I'm kind of amazed it didn't turn up before, when we were talking about better after care for cancer survivors and people living with cancer. (See After Care.)--Actually, now that I look again, I did have a link to the "providers list" on this Web site in an earlier post.

I've just started looking at the Web site, but here's what the organization says about itself:

The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer.

CSP is committed to making available information regarding physiological and psychosocial late effects of cancer treatment, preventive care protocols, and appropriate health care.

The Web site includes a reading list, although it's pretty skimpy.

There is no info on the Web site about who runs the organization, where it's based, or if it's affiliated with a cancer center or other organization. Does anyone know?

I've e-mailed them to ask.

In the meantime, check it out, and let me know what you think.

@ Jeanne Sather 2008.

Better After Care: Another Opinion

When I was in Tucson for my checkup with Dr. Livingston, I asked him what he thought about providing better after care for cancer survivors and long-term cancer patients like me (I don't qualify as a survivor, because I'm in continuous treatment. Semantics, anyway).

I was thinking along the lines of a new specialty within the oncology field, training some oncologists just to diagnose and treat after effects. But Dr. Livingston has another, and I think better, idea.

He says that individual oncologists should only treat one type of cancer. That will allow them to gain greater expertise in that type of cancer, and then, Dr. L says, oncologists should continue to see their patients after treatment for any problems the patient may be having.

"We need more medical oncologists who specialize in one disease," he said. "Then an oncologist is more likely to recognize late complications of the disease." He should know: Dr. Livingston has been caring for people with breast cancer for at least 25 years, and I have yet to ask him a question he couldn't answer.

Sending us back to our primary care doctors, even with a check-list of possible problems to look for, doesn't solve the problem.

This is a campaign I can get behind: Greater specialization within oncology.

@ Jeanne Sather 2008.

Better After Care for Cancer Survivors

I've been talking about this issue for quite a while, and while I was still in the talking stage, Carver went and did some research for me. Thank you, Carver. (Carver is also hoping to come to the Cancer Bloggers Reunion.)

See Carver's blog

Here's her report:

I did find quite a few. There are quite a few for survivors of childhood cancers and I included some of those but I also found some (far less) for adults cancers.

I was specifically looking for places with teams treating and diagnosing side effects, not the ones with an emphasis on counseling. There seems to be an overabundance of support-group, counseling-type clinics for cancer patients and far less in terms of clinics looking specifically at treating and managing side effects.

I'm not including any that only deal with psychological support. Frankly, when I was trying to get help for my "issues" the only thing that made me think I might need counseling was getting passed from one specialist to another that weren't talking to each other.

I'm not against counseling or therapy, but I do think it can be irritating when you have a specific physical issue, and each new doctor points out that sometimes cancer patients need counseling. I find it interesting that the only specialists who have not brought that up with me are my oncologists. They have a patient counselor who checks in with me and is great, but I mean when I was trying to figure out why I had so many physical problems after my groin dissection. Anyway, below are some clinics I found.

Cancer Survivor Project (provider list)

Yale has a project looking at survivor issues and this includes physician referral

Yale survivorship clinic

Seattle Cancer Care Survivor clinic

Long term survivor program (Baylor)

Roswell Park (childhood cancer survivors)

UCSF (another for survivors of childhood cancers)

Vanderbilt (specifically survivors of childhood cancers)

Reality Check(ups)

I've been having some pretty intense conversations by e-mail with several other bloggers, including Amorette and Lisa, about the need we cancer patients have for better AFTER CARE.

Because, for the rest of our lives, whether we are in on-going treatment, like me, or not, we are going to have health problems, issues, and questions that are related to our cancer. And too many doctors want to send us back to our primary care doctors, who really aren't qualified to figure out these kinds of problems.

Lisa has been struggling with this with her left foot, which has been going numb on her. After weeks of phone calls and e-mails to her various doctors, it sounds like she finally has an answer. Maybe not the one she was hoping to get, but an answer.

Here's her post:

A Dose of Reality

Oh, and it looks like Lisa will be joining us for the Cancer Bloggers Reunion. She's from California. We also have women coming from Texas, Massachusetts, Nebraska, and Ohio, and maybe one or two more states.

@ Jeanne Sather 2008.