Saw this great article in today's Wall Street journal about cancer patients getting assigned a personal nurse-navigator.
Boy could I have used one. WSJ is fussy about linking to it's online content if you are not a paying subscriber so I don't know if this direct link to the article will work for OCF.
Just in case it does not, here is a summary of what they do
Good news is that starting in 2015 cancer centers must offer similar patient navigation services to meet new accreciation requirements
[quote]How nurse navigator Colleen Sullivan-Moore helps patient Judith Nakamura after her breast-cancer diagnosis:

Explanation
The nurse navigator walks through the diagnosis again with pictures and charts, answering questions Ms. Nakamura didn't think to ask the doctor when she first got the news.

Scheduling
The nurse navigator sets up oncology, surgery and radiation appointments for Ms. Nakamura, working around her job schedule. 'She gets you in to see your doctors,' Ms. Nakamura says.

Support
After both of Ms. Nakamura's surgeries, the nurse navigator is waiting in the recovery room. Ms. Nakamura says she was 'the only one I felt comfortable sharing my fears with.'

Information
The nurse navigator tracks down Ms. Nakamura after doctors learn that a first surgery hadn't cleared her cancer and she would need a second operation.

Advice
Ms. Nakamura's nurse navigator provides tips on how to treat burns from radiation, when and where to purchase a wig after chemotherapy and other suggestions related to her treatment.[/quote]

Here's the link: When a doctor isn't enough - nurse navigator

Until then, guess all new patients have to rely upon OCF.
Keep the faith
Charm

A navigator is a great idea! Every patient should have an in-house advocate to help them get thru everything smoothly.

Great topic and definitely needed. This sounds like Alex's cancer co-ordinator who did all these things and was my first point of contact. Whilst she didn't do any training herself, she answered our questions, explained side effects, and organised for us to talk to others (eg PEG training and "you have cancer 101") who were nurses or social workers. Unfortunately, our cancer co-ordinator was on training wheels at the time and a lot of stuff slipped through the cracks. However, we forgave her because she was always in the ward cooing and checking on Alex after his procedures and operations suffered as a result of his complications associated with chemo induction.

She is clearly seriously overworked though, and we have been cut loose. Because Alex has NED for 12 months they consider him off the patient list until such time as one of the check ups reveal something to investigate (which won't happen I hope). This proves to be VERY aggravating because he is still underweight, still has a PEG (and we can't get anyone to remove it) and still suffers side effects that we think are hormone related. I have taken the whole issue outside the cancer clinic back to the GP who has been wonderful but doesn't understand what has happened to Alex and what the ongoing issues might be unless I tell him.

And this is where OCF craps all over any clinician, cancer co-ordinator or anyone else working in the area. Thanks to those who have been through it all, we have been given coping mechanisms, time frames and reassurance every step of the way. No glossy brochure could ever have prepared us for the breadth of the difficulties these side effects would have. Unfortunately, in my opinion these brochures are all about staying upbeat as much as possible so whilst they mention all the side effects they don't go anywhere near the true impact for some people. As they are designed to educate already terrified people, I can understand this, but it is not terribly helpful when you are halfway through treatment and know what mucositis REALLY feels like. And none of the brochures mentioned what Alex calls the "foam" and others call "phlegm".

The difference between OCF and cancer brochures is like staring at a doodle vs the Mona Lisa

I seem to have gone off topic a bit...again

I had all of my treatment at the Porter Cancer Center in Denver (I was also born in Porter's Hospital). I had the most awesome team of doctor's that communicated every appointment, treatment, meeting with each other and my PCP. Part of the team was a nurse navigator who helped me through the maze of paperwork, the appointments, answering questions as they came up and she filled out all of the paperwork for grants that I applied for. Another part of my "team" was a counselor and her services were provided for free by the cancer center. She also runs a support group that meets the last Tuesday of every month! I can't imagine anyone else ever taking care of me! And when I lost my insurance over a year ago, my surgeon still insists on seeing me every other month to at least examine me and scope my throat and neck to make sure that nothing is going on and he does it all for nothing! He also came to our walk on 7/9/11!! He's very excited that I will be on Medicare come January!! There are an awful lot of angels out there! Especially here!

Cathi

PMH in Toronto assigns a nurse practitioner to every patient undergoing rads. mine was awesome though I only saw her three times. (if I had needed her I would have seen her more) mostly she dealt with peg issues... But she also worked out of the rads clinic there. She was a great go between at first when I had issues with my rads guy. But he definitely tried to cut her out of the picture when she tried to advocate for me. I realized this was causing a problem for her so I apologized and dealt with him myself. It would be better if the practitioner was provided for you from outside the facility. That way they could be impartial without repercussions. But they are a great help.

That sounds like it would be really helpful. I don't have a nurse navigator but the research coordinator does a lot of those things for me. She schedules all of my treatments, labs and appointments, comes to at least one of my appointments each week to check in on me and has been very helpful with answering my questions or referring me to the right people to ask. It's one of the nicest parts of being in this clinical trial. Just not having to deal with remembering to schedule all these appointments is such a gift right now.