Cancer patient would like to know other cancer patients opinions?

Question

I am looking for responses from cancer patients who don't just trust their Dr's automatically. People who are keeping up on advances and researching for themselves. I moved from AZ to CA and now have the worst doctor ever. I have to tell her how to do her job. She does not schedule me for CT's as needed, and has not harvested my stem cells. I am stage 4, low grade, fast growing Non Hodgkin's Lymphoma. I should be given a CT every 6 months and know this. But she does not want to do anything.

So what I am wondering. Where do you feel the best Dr's for cancer are located (what state and city). I am on a fixed income and may be able to afford moving just one more time. So if I do so, I'd like to know that others with my condition are truly happy where they are and think the Doctors there really put the patient first and fore most.

Answer 1

I wish you the best on finding one!

Answer 2

Go to a comprehensive cancer center . . they are located in every US state and are the top cancer facilities in the nation and sometimes the world. They have all the latest research and information available and treat many cancer patients. You can locate a comprehensive cancer center online at the National Cancer Institute:

NCI: cancer centers list

http://cancercenters.cancer.gov/cancer_c...

You may also wish to connect with other patients with your type of disease. You can try:

ACOR: Non-Hodgkin's Lymphomas Support Group

http://listserv.acor.org/archives/nhl.ht...

ASCO: Non Hodgkins Lymphoma Information

http://www.cancer.net/patient/Cancer+Typ...

Sorry that you do not have a doctor that you feel you can trust. You need to keep looking around for someone you are comfortable with and someone who will listen to you.

Good luck.

Answer 3

My husband has the same cancer. He is going to Philadelphia. One of the top is Fox Chase in Philly and U of Penn, Abramson Cancer Center in Philly. We are very happy with the treatment and tests he has been getting.

You need a PET scan every few months.

The top cancer center in the US is Memorial Sloan Kettering in NY.

Answer 4

It's your life and your health, so do what is best for you, and it sounds as if moving to another doctor would be best.

Most cancer doctors are good at their jobs, otherwise they wouldn't be allowed to see patients.  However, it sounds as if your cancer is a special case, and therefore I would suggest you ask around for the best person to treat you.  Have you thought of asking an oncology nurse?  You needn't say why you want to move (the nurses probably know anyway) but they will give you good advice.  Or talk to another patient?

Best of luck - but if you feel something isn't right - we are usually the best at diagnosing ourselves!  

Verite R

Answer 5

I’m sorry you are having such a problem. There are good and bad doctors everywhere, but you should never stay with ANY doctor you don’t trust or cannot communicate with. At the very least go to another oncologist who is not in the same office. You didn’t say where in California you moved to, but I work for several hospitals in LA County and the best hospitals for you here would be City of Hope, Kenneth Norris, UCLA and Cedar’s. In Orange County try Loma Linda or UCI and San Diego County try Scripps. I hope this helps. Best wishes.

P.S.: It is important to have a copy of all your medical records with you as it makes things much faster and easier.

Answer 6

It's useless to have a doctor that you don't trust or like.

She will not be the only doctor in your area, so call about to get a new one. Explain to them why you need a new doctor. Moving shouldn't be your only answer.

Answer 7

I researched everything when I was first diagnosed. I spent lots of time asking the doctor why he was doing this, and what about that instead. It's all part of the process for some of us.

The point I got to is that before my pathology came back, he had already successfully guessed the nature of the results and the proper course of treatment. How? Gee, probably because he does it for a living, has treated hundreds of cancer patients, and knows what the heck he's doing.

I stopped spending so much time doing research. Even if I spend 100 hours doing research on the Internet, that is not a fraction of a percent of the time he spent in medical school, specialty school, residency, and practicing medicine. Seriously. Most of the "research" I ever did had no relevance to my situation. That's the difference between being a doctor, and a person with a search engine.

I trust my doc. He earned that trust. If yours has not, then please, by all means, move on and find someone better. There are doctors out there who deserve to be trusted.

Answer 8

With doctors I believe in a trust but verify relationship. If there is no trust, then just get a new doctor.  

Answer 9

I was treated for cancer and cured I might add at Loma Linda University Medical Center in Loma Linda California... I think it is a great place... the hospital and doctors there are Seventh Day Adventist... I am not a particular religious person, but the medical professionals at loma linda were the best and most careing i have ever seen.  I can not say enough good things about them/// they were simply great..I prostate cancer.. I dont know how they would be with hodgkins.... or i dont know if your close to loma linda.... if you are, I think it is a great place