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Post by busy on Feb 23, 2022 22:13:37 GMT
I mentioned a friend of mine was recently diagnosed with thyroid cancer. She also has a couple other ongoing health issues that need to be treated, and is seeing different specialists for each of those. All the medical providers are on staff at the same hospital, and while they all have access to her records across all the specialists, they don't really seem to review them. It's a top tier hospital in NYC and they are all highly regarded specialists, but she is feeling overwhelmed and uncertain if anyone is taking the full scope of things into account. There's a lot of "well for my portion of your treatment, I recommend XYZ, you'd have to ask your [other specialist] about anything else." And then that specialist says basically the same thing, but none of them are explaining to her why or why not she should proceed with treatment XYZ before or after cancer surgery/treatment and what, if any, are the additional risks or benefits with doing so, given the various conditions she needs treatment for.
Her medical situation is suddenly quite complicated and it feels like she needs a professional on her side, looking out for her holistically. Is that what patient advocates can do? Or is there some other role in the medical realm she can hire to help guide her through making all these decisions as a fully informed person? Both she and her husband have more questions than answers at this point, despite asking a ton of questions of the various doctors.
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Post by Darcy Collins on Feb 23, 2022 22:26:36 GMT
My one experience with a patient advocate was regarding billing issues - I can't see that individual doing what you're looking for, but it may be different at different hospitals. A specific cancer institute my family member used had care managers that did some of what you're talking about - this may be tough as terminology is probably quite different across states/hospitals. If nothing else the patient advocate should be able to direct her to the right person in that facility. Best of luck to her!
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Post by ~summer~ on Feb 23, 2022 22:29:15 GMT
She might want to involve case management at the hospital.
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Post by elaine on Feb 23, 2022 22:39:36 GMT
At Walter Reed what she would need is a case manager. A patient advocate mediates disputes between patient and the doctor/hospital. It may be different in the civilian world, but I’ve used both at Walter Reed.
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Post by revirdsuba99 on Feb 23, 2022 22:43:50 GMT
Case manager. She should ask, even tonight. She has the right to proper coordinated care particularly with thyroid issues. The thyroid almost runs the whole body sort of!
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Post by busy on Feb 23, 2022 22:53:44 GMT
Thanks! I’ll suggest she ask about a case manager.
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Post by peanutterbutter on Feb 23, 2022 23:25:59 GMT
She can also call her insurance to see if they offer complex casemanagement services.
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Post by Zee on Feb 23, 2022 23:29:46 GMT
What she needs is a cancer navigator. Most hospitals have them nowadays, and I'm surprised no one has mentioned one to her at a top-tier hospital. Generally, the surgeon's office makes that contact.
A patient advocate doesn't do this type of job and where I work, neither does a case manager, though things could be different elsewhere. But either of those people could help her find a cancer navigator if her doctors' offices can't help. The minute I had a positive biopsy, I was matched with a cancer navigator. Even though I'm a nurse, there are lots of things I don't know about cancer. She was wonderful, as was my surgeon.
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Post by cindyupnorth on Feb 23, 2022 23:33:43 GMT
I'm not even sure a case manager could help with that, but she could try. Usually our case managers are more about helping with discharge plans or organizing appts. She needs a main Dr to be the captain so to speak. I think often a family member sort of does that. I get it though, the whole thing is overwhelming. I have been doing it for my dad. He has oncology, nephrology and urology on board, but urology steers his treatment since it's bladder cancer.
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maryannscraps
Pearl Clutcher
Posts: 4,791
Aug 28, 2017 12:51:28 GMT
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Post by maryannscraps on Feb 24, 2022 0:00:34 GMT
When DH was dealing with a complicated unknown disease, Mass General appointed one Dr. as the point person. While they were diagnosing, it was the neurologist. When they decided it was systemic, it was his oncologist. She coordinated his care and all the specialists. She handed him off to the stem cell transplant dr. and took back his follow up after. They were very clear about who was in charge of his case and made sure we always knew who to contact for information. Since he saw about 15-20 specialists, it was really important to know.
We didn’t have a navigator, but everyone went through the point dr. We were told she took his case and his care was all assigned through her.
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Post by withapea on Feb 24, 2022 0:04:26 GMT
I have an oncology nurse liaison. She is awesome. I don’t have to utilize her often but when I need her she’s there and very helpful. She’d be the person I’d go to in that situation.
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Post by revirdsuba99 on Feb 24, 2022 0:24:28 GMT
The important thing is that she speak to someone to get them all coordinated. There are too many things that can affect other issues. Someone needs to "be in charge" and now!
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