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Just found Out

2 years 2 weeks ago #52398 by Jack R
Sara Anne,

Thank you; all any of us have is our experiences, our opinions and a willingness to share with others. Like you I am not a MD, but a retired Firefighter-Paramedic.

I also hope that people learn and make insurance choices that best meet their needs. It is such a critical choice to make; a wrong choice an cost you thousands of dollars in avoidable medical expense.

For those with Medicare in states with a "HICAP"program - "Health Insurance Counseling and Advocacy Program" can talk to non-sales people and discuss their health situation and receive some informed help in deciding on a secondary plan if desired. https://www.hicap.org/ or talk to the local Social Security/Medicare office for a referral.

It is a scary place, the insurance market. There is no one-size fits all.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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2 years 2 weeks ago #52391 by sara.anne
Good Morning, Jack! I re-read what I wrote(above) and was relieved to see that I had said "IMHO" (in my humble opinion) since, indeed, it is only MY opinion. I HAVE to chose my own doctors. I have five physicians that I see regularly and only two of them are in the same PPO program. I do not need prior approval for any medical appointment or procedure, as long as it is prescribed by a physician.

Having been on a medical school faculty (although I am not an MD ) I am not comfortable unless I have checked out a potential doctor's education, residency, post-graduate training, and certification. Pretty picky! Have a friend who moved to a different part of the country and had to chose a new insurance plan. "Everyone" recommended Insurance XXXX since it was "so reasonable." She signed up and found herself in a PPO. She had an accident her first week in her new residence, fell, and broke her foot. A month later she had over $4000 worth of bills since the hospital and doctor that her family rushed her to was not in her plan. She later sent me a copy of the list of "approved in-plan" primary care docs and asked me to check them out and help her pick one. Of the 12 on the list, NOT ONE WAS A US-TRAINED MD! I do realize that this is an example of a pretty poor plan ....ie, "cheap," and there are many much better.

Choosing an insurance plan or supplement is a very personal decision. I guess I would change my advice to "be careful and research ALL the options" and then pick the one that most meets your needs! The friend I mentioned above is a very intelligent woman, yet she had no idea what a PPO (or even a Medicare Advantage) plan was. She just signed up for a "supplement" and assumed it would pay her bills.

I would hope that discussions such as ours would lead others to THINK about what they are buying in choosing insurance. Surely one size does not fit all!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Jack R

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2 years 2 weeks ago #52390 by Jack R
Sara Anne,

I would like to ask about (opine on) your comment, above, regarding doctor or clinic choice and insurance plans, "You do NOT want a PPO."

I am unclear why a PPO would not be a good choice. What am I missing here?

I am on Medicare (thank goodness,President Johnson and Congress in 1965) previously on medicare disability, now retired and have a PPO secondary medical plan. PPO is more expensive than an HMO, but on my (high-end) plan my medicare deductibles and co-pays tiny. I can choose any doctor I wish; while it is best (lower out of pocket cost ) to see "preferred providers", I have a long list from whom to choose. I was unhappy with Kaiser many years ago, as well as other captive type HMO plans chosen by my then employers. I never again want to be forced into seeing "the" one specialist on an HMO list. I am simply happy with the PPO options.

Anyone changing insurance needs to see if their doctors and facilities are on the insurer's approved lists, and realize that lists change all the time. Cost is always a factor, as is the hospitals and other medical facilities in the plan, along with making sure that one's medication are on the plan's preferred list.

Choosing insurance is a tough call. Thus I inquire about any PPO problems.

Thanks for all your advice, from which I have benefited greatly.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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2 years 2 weeks ago #52387 by sara.anne
Have you received the pathology report? What is your exact diagnosis? That would help us give advice!

The first bit of advice is to take a deep breath and slow down a bit. You have a lot on your mind right now, and urgent as cancer can be you do have time to think about this logically and make some really good decisions. Your cancer has been there for a long time and a few more weeks will not change things!

If you are on Medicare and want the freedom to make your own decisions as to where to go for treatment, you need to find a traditional Medicare supplement with no limitations on your choice of physicians and hospitals. Of course, this will probably be the most expensive, but IMHO it is worth it. You do NOT want a PPO. Kaiser has a reputation for excellent care, BUT except in unusual circumstances it is within their own system and it is very difficult to go out of it.

Without knowing your exact diagnosis, it is difficult to make recommendations. Based on general reputation, among the very best places for bladder cancer treatment are Memorial Sloan Kettering in NYC, Johns Hopkins in Baltimore, MD Anderson in Houston, USC in Los Angeles ...just to list a few.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: dani

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2 years 2 weeks ago #52381 by Henriz
It is hard sometimes to get the right doctors. If you can get one of the doctors recommended on this site, that is the best thing to do. I went through several doctors and had to change a couple. Some are just not caring and at a time like this, you need a doctor that really cares about you. Recommendations are good.

I wish you the best of luck. This is a scary time. Try to keep a positive attitude. Beating this is possible. This group is very encouraging and can answer many of your questions.

Henri in Granbury, TX

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2 years 2 weeks ago #52380 by Patch papa
I received the news 7 days ago, had a TURBT 10 days ago it was blocking one of my ureters.
I'm looking if folks don't mind for some advise. First of all my provider is terrible on communication between the surgeon and oncologist or any member of cancer treatment team. I spent 3 hours on the phone today asking a treatment plan be put in place and how soon can I get started (guess I need to suck it up).

My question finally is I'm looking to actually relocate during treatment to a true bladder cancer treatment center as described on this web site. The ones I found so far is Sloans in NY, mayo clinic Jacksonville,
John Hopkins, Ucla, university of Texas.
I'm on Medicare and there one carrier in the state that offers PPO (present carrier is Kiaser, HMO they will not let go out of their system but their professional protocol to working, communicating, and planning is frightening)
I have until Dec 5 to change to Humma PPO, so right now I'm calling all of the facilities to if they take this particular PPO. Any advise, any recommendations for other treatment centers.

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