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Posted 11/19/2021 4:11 PM (GMT 0)
I have a question regarding the use of nurse navigators in healthcare. When my wife’s breast biopsy was determined to be cancer, she was notified, on a Sunday, by her personal physician and was immediately assigned a “nurse navigator.” This person contacted her right away and made a series of appointments to walk her through consultations with medical professionals including a surgeon, oncologist, radiation therapist, geneticist, nutritionist, and several others. The nurse navigator attended every appointment, as did I, and took notes, asked questions we wouldn’t have thought of, and offered constant reassurances. The nurse navigator was there for the surgery, the chemotherapy, the months of infusions, and also did the legwork to get special pricing for some of the drugs. That was all very helpful.

Three years later, at the same hospital, I had a prostate biopsy. I was supposed to receive a call with results in 3-4 days and after almost 2 weeks of hearing nothing, and not getting my calls to urology returned, I pulled the results up in the patient portal and used Google to explain what all that terminology meant. I finally got in to see the urologist and was told “you have cancer, read this book, it will explain your treatment options, call when you have made a decision.” That was it. My decision was to travel 5 states away for treatment.

The question is, have any of you been assigned a nurse navigator? If so, what was your experience?
Posted 11/19/2021 4:58 PM (GMT 0)
Your experience, at the time of your diagnosis, explains why you pursued treatments five states away.

They really left you IN THE DARK ... without a flashlight ... without directions ... and without GUIDANCE.


Conversely, it sounds like your wife's experience with a nurse navigator is a sterling example of the integral role a navigator can play in one's healthcare treatments.

My experience with a nurse navigator occurred shortly after I was diagnosed.

The "early chemotherapy plan" had just been recommended, after clinical trials showed a benefit to pursuing chemotherapy upfront, for cases like mine.

I was the first fellow at my treatment center to pursue these treatments upfront, following diagnosis.

A lead nurse oversaw all the infusions --- explained all the chemotherapy protocols --- checked in with me frequently --- offered advice on mitigating side effects ---- provided support ----spent time with me during the infusion process --- allayed some of my worrisome thoughts and fears ---- and always telephoned me the next day after every infusion.

She was there every step of the way --- for those four months of treatment, and follow-up care afterwards.

As I think back, I would say she was definitely a LIFELINE for me, during those treatments.
.
She was, indeed, a dedicated NAVIGATOR. She was there when I needed that support during my chemotherapy infusions.

In a different way, there's always SUPPORT shining through on this forum --- on a daily basis.

I know the local children's hospital here ALWAYS assigns a nurse navigator to each child & their family.

Some experiences to share ----
CYCLONE --- # Iowa State University
Posted 11/19/2021 5:01 PM (GMT 0)
No, I also never had a group of people bring me dinner each night and little presents for weeks. The women have the social thing going a lot better than men. My wife seems to get a lot more attention than I every did for her breast cancer. On the other hand, when we do the same thing such as knee surgery or colonoscopy, it is the same.

The closest I have seen is the "hospitalist" that fits between specialists when you go to the hospital for some sort of emergency. They can be pretty good or not at helping the patient out with their visits.
Posted 11/19/2021 9:44 PM (GMT 0)
Hi Vince, Sorry your didn’t get more timely results. In Western PA we have two large Medicare Advantage Plans and over the years we’ve had very good results from both. Although they don’t always use the “Nurse Navigator” terminology we’ve received a lot of help that may fit that definition. When I was diagnosed with PCa we explored treatment options and they even assisted us to go out of network (out of state) for SBRT when we could not find a local provider doing SBRT for PCa locally. When my wife had a very severe case of pancriatitus with necrosis we had an RN representative from the insurance visit with her daily and was always available to assist us with treatment questions and concerns. They also provided valuable help with the five total joint replacements we’ve had between us.

If you have an Medicare Advantage Plus Plan or an Insurance provider you may also be able call on them for assistance. On the back of our insurance card we have a Members Assistance phone number as well as two more numbers for Pharmacy and 24/7 Nurse assistance. Good luck. Terry
Posted 11/19/2021 10:23 PM (GMT 0)
Vince,
Glad your wife had such great care. That's pretty outstanding.

For us guys, maybe it's more often "just suck it up dawg."

After about a year on Xtandi I started having some pretty stout headaches, which are listed as an Xtandi side-effect. I sent a message on the patient portal to my MO's nurse about the headaches. She wrote back saying my PSA is undetectable and I should just contact my PCP. Lol! That was my special attention.
Posted 11/20/2021 12:17 PM (GMT 0)
Our local hospital uses a nurse navigator in the lung cancer screening program. Works well.
Posted 11/20/2021 2:01 PM (GMT 0)
I had a nurse navigator assigned to me and had a similar experience. Minimal contact or communication. The doctor at a major university hospital who diagnosed me wasn't much better. He called me with the results rather than see me in person. I tried taking notes but mostly just heard "Gleason 9...almost all cores...very aggressive". And then he told me he was leaving for a vacation/conference trip and would be gone the next 2 weeks. He left me hanging with no tests ordered, no follow-up scheduled and no one to back him up while he was gone. Thankfully my wife got on the phone and, after persistently pushing the clinic to do something, was able to get the bone and CT scans scheduled. She also arranged visits to Cleveland Clinic and a local well-respected urologist that both were completed before my first doctor returned to town. Needless to say, I dropped him.

During this while ordeal, the nurse navigator was non-existent.
Posted 11/20/2021 4:08 PM (GMT 0)
This forum is a pretty good 'nurse navigator'...
Posted 11/20/2021 6:29 PM (GMT 0)

Well said, Sr. Sailor --- well said!

CYCLONE # I.S.U.
Posted 11/20/2021 6:54 PM (GMT 0)

DB62 said...
She also arranged visits to Cleveland Clinic…

That’s where I ended up going. They treated me like I was someone.
Posted 11/20/2021 8:01 PM (GMT 0)
Same experience ar Cleveland Clinic.
Posted 11/21/2021 12:35 AM (GMT 0)
What Sr Sailor said
Posted 11/21/2021 3:23 AM (GMT 0)
"Getting old ain't for sissies"...Betty Davis
Posted 11/21/2021 8:14 AM (GMT 0)
My Gastro Doc offered me a "Care Navigator" service since I'm on Medicare and that Medicare will pay for the service.... I'm pretty sure it doesn't include an in person stuff.
Posted 11/23/2021 8:18 PM (GMT 0)
IMHO
It's because you have a pen is.
The heath care industry cares more about women than men.
After all, our mothers, aunts, grandmas, sisters and daughters are all women.

Tongue only slightly in cheek, mostly true. It's hard but true.
Posted 12/6/2021 5:54 PM (GMT 0)
I'm with Kaiser, and was assigned a nurse navigator shortly after I made my treatment decision. She was great! We never met in person but I had her direct phone number, and she always picked up after a couple of rings. It was a relief to have someone available right away when I had questions. And if she didn't have an answer (which was rare), she'd contact the relevant specialist (urology, oncology, imaging, etc) and get back to me within the hour. A godsend, and it made the whole process MUCH easier!
Posted 12/7/2021 3:48 PM (GMT 0)

Something to share from my experience ----

I check in, each month, with my oncologist at my treatment center.

It's smaller --- with an outstanding staff ---with top-notch doctors and nurses.

It's EVIDENT --- to any patient, family member, or visitor --- that there's TREMENDOUS focus placed on individualized care. I am thankful ...

Conversely, when I needed to knock out 45 radiation treatments --- I chose a large oncology treatment center, because it was near my school.

That way, because of the close proximity to my school, I could teach all day --- and rush over for the last radiation treatment of the day, and not miss time with my students.

While highly regarded, in terms of expertise --- I immediately felt more like "just another patient" --- because it was a large facility.

The difference between the two treatment centers was evident. I almost left after my first appointment there ... but I didn't want to miss nine weeks of school for radiation treatments.

Mayo Clinic had "mapped out" the entire treatment protocol, so they simply had to follow Mayo Clinic's plan. It was like "punching the clock" for 45 days.

There's a multitude of reasons why I am sticking with my smaller treatment center, even though it's farther away.

Best to all ~~~ stay on your path ~~~find your bliss & don't settle for less!

C-Y-C-L-O-N-E - # Iowa State University

Post Edited (Cyclone-ISU) : 12/7/2021 8:52:25 AM (GMT-7)

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