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Cancer Centers. Are they worth it?

JasonD
Posts: 1
Joined: Sep 2009

I'm currently going through what started as head and neck cancer in 2006. Now it has spread throughout my body. My doctors have told me that I have been though 5 treatments and they really have not put a dent in it so more than likely a sixth treatment won't help. Basically they are saying sorry there is nothing else that we can do. One of my doctors is from home which is a small town and my other doctor is from the Mayo Clinic. I was really impressed with the staff and doctors at the Mayo clinic and they do have an excellent reputation. I was just wondering if any body out there has had experience with any of these cancer only centers? And would they be worth checking into? I don't want to give up on this fight against cancer yet.

Hiedi's picture
Hiedi
Posts: 19
Joined: Oct 2009

I don't believe anyone should give up, especially your primary Dr's.
Seems like the are overwhelmed themselves and don't have the knowledge
on what to do next. I've heard good things about the Mayo Clinic and sounds
like a step in the right direction. I know when I found out I was informed to
seek medical attention from a special cancer center myself. Considering the rarity
of it. Thank God I'm close enough to the Cleveland Clinic that I dont even mind the 2 hr drive anymore. Although for the best experts on cancer I would travel however long it takes.
Hang in there and try to stay positive (I know its hard) but never give up!!!
Best of Luck to you

Hiedi

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Jason, what have you got to lose, you've come this far. I think cancer centers are a better place to be than the local hospital. Many sponsor clinal trials that you may qulify for.Many of these are atno charge.

hisnibs
Posts: 5
Joined: Oct 2009

Even in Cancer Centers, make sure the doctors are talking. Make sure they are listening to you. Make sure they include important people in your life like your current GP.

My situation may become worse than when the cancer was there because Doctors are too busy to hear you and overlook things. I had to tell my doctors that if they are not listening to their patients then they were in the wrong business.

jeb54321
Posts: 22
Joined: Sep 2009

I'm in Boston, so I had a dozen or more places like Dana Farber available to me. The feedback I got on the big centers was that they are more "interested" in rare cancers. I envisioned one of the characters in "Grey's Anatomy" going from room to room trying to find the "interesting" cases and skipping by the "routine" stuff, and my impression was that my cancer was one of the "routine" ones, if such a thing is possible.

In the end we opted for a smaller suburban hospital that was partnering with Massachusetts General, and was delivering the same services that the big centers were delivering, but in a much more personable, comfortable setting, where I felt the doctors were personally invested and very intimately concerned with me and my outcome. Also, during radiation, you go in daily for many weeks, and the suburban hospital was much closer and easier to get to.

I don't have any regrets. The close contact to MGH meant that they had all the latest information. For example, my brother is close to the medical community in West Virginia. He questioned my treatment program, and it turns out that my docs had the latest information on HPV and had adjusted their treatment, whereas the clinic in WV was still going by older protocols.

But there's no doubt that where I went had access to the latest information and the treatment equipment needed for what I had, versus used whatever they had available because that's what they had handy.

And that was another impression I had. It's just not 1000% clear to me that doctors automatically treat each case like a once in a lifetime event. For example, in my perfect world if a doctor did the research, knew that a different clinic were more appropriate for me, then he would recommend that I go there. My experience is that its up to me to do that research and make those decisions on my own. I can't rely on a doc to know everything - instead I have to talk to a lot of docs and make the tough decisions on my own.

So, at the very least, I'd recommend talking to places, getting second and third opinions, and at least answering for yourself the questions you are asking us here.

-jim

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