hi all,

following suggestions to my earlier post, i have been looking for a treatment centre in los angeles that takes a multidisciplinary approach. i've come across "city of hope" (http://www.cityofhope.org/) on the web, and wonder if anybody out there has more direct knowledge of it.

or, is there another centre in los angeles that you might recommend?

this is for my sister who's currently undergoing chemo, after surgery and radiation, because of recurrence.

thank you for any info.

be well.

gita

City of Hope is a comprehensive cancer center - one of only 3 in California the other 2 are Stanford and UCSF.
http://www.nccn.org/

Loma Linda, which is in So.Cal., offers PBT which might be a consideration also.
http://www.llu.edu/proton/

My personal feeling is I wouldn't go anywhere but a comprehensive cancer center (I went to UCSF myself), I might make an exception for Loma Linda because of the uniqueness and possibilities of PBT.

Hi,

UCLA is the top hospital and top cancer hospital in the West per the recent US News and World report. The Jonsson Cancer center is second to none and is a Comprehensive Cancer Center. Lots of clinical trials in many cancers.

http://www.cancer.mednet.ucla.edu/index.html

I had squamous cell carcinoma treated with surgery and tongue reconstruction with a radial forearm flap. This proceedure is rarely done and only in Southern Cal. at UCLA. I don't need rad. or chemo but have had a family member get both there. Let me know what kind of doc you need and I will give you a name if you wish.

There are far more comprehensive cancer centers listed on the NCI site, which appears more up to date, than the NCCN listing that I frequently refer to. Here is a link to that list:
http://cis.nci.nih.gov/fact/1_2.htm

Not that there is anything wrong with the NCCN list but this will give you more choices.

Thank you Howard for pointing that out to me.

hi gary and howard,

thank you for your replies.

my sister was first at Harbor UCLA. that's where she got her surgery and radiation. the approach so far has been sadly miscalculated or callously incompetent. (this i'm sure has a lot to do with money, a topic which probably demands a separate thread.) based on the experience so far, we're convinced that she should be treated by a multidisciplinary team given how quickly the cancer is spreading and the multiple issues to consider in terms of her response to the treatments so far.

i'm not sure if there is a substantial difference between "city of hope" and "johnsson centre"? my sister has an apporintment at "city of hope" for next week. i guess the question now is whether we should also look into "johnsson"? what do you think? in terms of their approach to treatment, what factors should we take into account here?

be well.

gita

I am speculating here but I would imagine that your experience should be relatively similar at both institutions. Part of the decision will be largely intuitive also - what does your heart tell you is the right path? What is your confidence level based on meeting the team?

Having a second local comprehensive cancer center is luxury that many don't have. I will admit that I didn't feel compelled to go the Stanford after meeting with people at UCSF (both local CCC's in my area).

You may wish to surf the site of both centers to see what exactly their specialties are. One of them may place more emphasis on head and neck.

thanks for suggestions, guys.

at least from their websites, "city of hope" seems to be more patient-oriented as they have much more accessible info in terms of admission processes and treatment approaches than jonsson offers. not entirely a good reason to rule them out, but something tells me that this could be indicative of the "attitude," and we're just so sick of medical professionals who treat patients and their families like morons.

question:
in a multidisciplinary centre, do you still have a primary phisician? if so, how do you decide what this primary physician's specialization should be (i.e. a surgeon or a medical oncologist)?

be well.

gita

In my case, the "primary" if you can call him this was a medical oncologist. He ordered all the labs and his nurse coordinated all other tests and appointments. I stil see the otolaryngologist (ENT) every 7 weeks after 7 3/4 months post treatment. I only schedule appts with the med oncologist as needed.

I hope this helps.

Ed

My experience was the same as Ed's - my oncologist was the primary.

Gita,

My oncologist became my primary care physician starting shortly after my diagnosis and continuing on for the past 15 years. I still see him a minimum of 2x a year -- sometimes more frequently if I have any symptoms he feels he needs to investigate.

Cathy

hi all,
thanks for your responses. we're settling with a medical oncologist as primary physician. we've decided that if there is going to be any more surgeries involved the decision should be made through a multidisciplinary consultation unlike the first time when the surgeon pretty much acted on his own. live and learn. what i don't quite get is why you have to pay such high price for what you learn. i keep thinking there needs to be a manual to guide people through these processes, and i believe people who have first-hand experience are the best to write it. i've learned much more from reading posts on this board than i did from all the material i'd read on various medical establishment documents. thanks again.

be well.

gita

Gita-

You're not kidding there should be a REAL manual! In Ed's case (Uptown's my other half), we came across many a stumbling block and black holes of information. We (I say that like I had something to do with it, sorry!) endured some horrible side effects and fear and frustration until one day I very nearly laid on the floor screaming (since Ed was too doped up on duragesics and radiation brain fry - not to mention it made me feel like I was being pro-active instead of a spectator) telling them I just KNEW Ed wasn't the first to have some of these symptoms... He had third degree burns weeping from countless radiation treatments that they threatened to stop if it got "too bad". Suddenly they pulled out this mini aresenal of single copied pages with a tidbits of information. I found that for a mere three bucks, I could have spared him the anguish (and nights of sobbing from the severity of pain). Imagine! A thing called Domboro Soak! In our case it was a miracle!

My list goes on and sometimes I think about how rotten a caregiver I was that I didn't know/follow up faster or more thorough so I could spare him and others.

Now I'm sort of on a mission now to be a patient advocate. In a lot of ways Ed's been SO blessed and in turn, me too.

Susan

They DO have a manual - it's called "Living Well With Cancer" by Katen Moore and Libby Shmais. They are both oncology advice nurses and do a pretty good job of telling you what to expect and how to cope with it. They really cover it well. I found the book invaluable. I am sure that there are others but this one worked well for me. They even cover alternative treatments as well (from an adjunctive perspective).

The book Gary likes is available in 1-2 days from Amazon, use the link at the top of the first forum page to get to Amazon, and it helps the foundation. $14.95. While I haven't read it, Gary's recommendations have been really good in the past.

Amazon.com
The cruel irony of cancer treatment programs that cause additional pain--both physical and psychological--prompted two concerned women to write Living Well with Cancer. Oncology nurse practitioner Katen Moore and medical researcher Libby Schmais present a comprehensive resource for those who suffer from mild to severe side effects of chemotherapy, radiation, and drug treatments associated with cancer.

Conversational yet never wordy, their extensive