US cancer centres tripled advertising expenditure in 10 years. How do you choose which centre to attend?

[AussieNeil]

A research team found that total consumer advertising spending by 890 US cancer centres increased from $54,229,849 to $173,510,900 over the 10 years to 2014. Hematology Times full article (free registration): hematologytimes.com/p_artic...

Thankfully there are two recommendation lists to aid any US CLL patient needing treatment, so don't let centre advertising sway your decision. Be guided by the experiences and recommendations in these two lists:

1) CLL / NHL Doctors endorsed by Dr Sharman: cll-nhl.com/p/cllnhl-doctor...

'The criteria for getting on the list include 1) I've personally met or worked with them on a research project 2) They have to have a specific disease interest in CLL/NHL beyond just the occasional patient that comes into their clinic. 3) I could feel comfortable telling a friend that if they lived close to this doc - I would endorse them for their care. In a few cases that left me with some areas where I didn't have a good doc to recommend. In such cases, I allowed academic reputation alone serve as one last benchmark for making it onto the list.'

2) Doctors recommended by CLL ACOR forum patients. Note that because this list is from patient recommendations, a listed specialist may be recommended because the patient developed a good rapport with the specialist and not a reflection on how well the specialist kept up with fast changing CLL treatment options. It may also contain out of date entries: acor-cll-help.wikispaces.co...

This second list is more international in scope too, so if you live outside of the USA, check it out.

Neil

Photo: Bottlebrush; an Australian native.

[wroxham-gb]

Do they grow wild there Neil?

Lovely shrub and photo.

Sue

[AussieNeil Partner Administrator in reply to wroxham-gb]

Yes they do, but they are more readily found as street trees. The native honeyeaters and parrots love their nectar, so having a few in your garden is an excellent way to attract these entertaining and attractive birds. Bottlebrushes are members of the callistemon and melaleuka family. Check out the photos on the right of this article: en.wikipedia.org/wiki/Calli...

Neil

[wroxham-gb in reply to AussieNeil]

Thanks Neil.

Sue

[Hidden]

This is an interesting question. I apologize for the long response.

My decision was made easy as I live in Houston. However, I started out at another hospital when I had my thyroid removed due to papillary cancer. At the same time their lymphoma specialist looked at my CBC and said that I had CLL. Further testing confirmed the correct diagnosis. I was initially stage 0. When it ramped up to stage 3, we discovered that FCR was not an option via the FISH test and at the time ibrutinib was not approved as a first line treatment. My new neighbor was a retired MD Anderson oncologist who told me about the cutting edge research being done in CLL/SLL. He convinced me that I needed a CLL specialist and MD Anderson was a no brainer. In other words you would have to be crazy not to go to MD Anderson. He was right. The doctors and nurses that I see spend their career researching and treating CLL/SLL patients. They have access to all the drug trials and the latest thinking. They are brilliant. The PA's who perform the Bone Marrow biopsies specialize in this. This is all they do. They are superb. The lab technicians just draw blood all day. You do not feel the needle. Everything is kicked up several notches. It is an all out attack on the cancer. The doctors assure you that they have a plan b, c and so on.

A year and half later, my retired neighbor who pointed me in the right direction told me that his Houston friends who have cancer routinely ignore his advice and do not go to MD Anderson. They pay for mediocre treatment when they could pay the same and get access to the better treatments and the latest research. Maybe the cancer centers do need to advertise.

[wmay13241]

Consider adding Dr. James Kochenderfer, NIH, to your list. You could footnote his name by saying NIH is mainly involved in clinical trials.

[AussieNeil Partner Administrator in reply to wmay13241]

Sorry, this community doesn't maintain the list, so we can't add your recommendation.

Anyone wishing to recommend their specialist (if not already on the list) can do so by joining the ACOR CLL list and emailing their recommendation. listserv.acor.org/scripts/w... (no e in listserv)

Neil

[MsLockYourPosts Passed Volunteer in reply to wmay13241]

I'm not sure that you can specify who you see at NIH. Usually people go there to be part of one of the trials. I don't think that their doctors have regular practices as well. wmay, do you see him as your ongoing specialist, or as part of a trial?

[wmay13241 in reply to MsLockYourPosts]

Clinicaltrials.gov will, for each trial, tell you the name and contact information for the Principal Investigator (PI). In my wife's case, the PI was Dr. Kochenderfer. And you are right - in general NIH doctors won't become your primary oncologist.

[MsLockYourPosts Passed Volunteer]

Re: the ACOR list - If you have input about doctors, particularly outside the US, or know of a doctor who has retired or changed location please let the list managers know if you are on the ACOR list. You could always post it here "for the ACOR" list if you aren't and one of us can send it in.