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20% survival for Liver mets??!!

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Hi,

Ugh..not a fun afternoon. I went to my first appt with an Oncologist at my HMO. It was disapointing in many respects. I have a referal to go to my local University Hospital for surgery and was hoping to be able to get referred there for Oncology as well. The HMO Oncologist was not at all supportive of it of the referal, saying the HMO is just as capable as doing it as the University.
He says that what I read about the University's 25 member colorectal team is all "marketing".
It sounds like from my response to my post yesterday about this that people seem to think that you can get quality care outside of a major cancer center and that its important to feel comfortable with your Doctor. I don't like this Oncologist at my HMO! Probably partly because he is not supportive of referring me to the UW for Oncology.
Is there any benefit to having all my treatment coordinated at one hospital? I just think it would be weird to have surgery done at the University and then all my chemo and radiation done at my HMO Hospital (who only have 4 Oncologists!). One advantage with getting treated at my HMO though is that it might be more peaceful than being at a large teaching hospital with interns and everyone.
Another reason for bad day is that the HMO Oncologist (grrr) also told me that if my mass in my liver is cancer mets that my survival rate is about 20%!!! That is the lowest I've seen for that. Is that true?

Grrrr...
Maria

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Well, as for having all of your healthcare coordinated at one hospital, I think it is preferable, but not necessary. I had my surgery done at MD Anderson for my liver resection and then I had all the followup chemo and all here in Alaska. You do get some conflicting info. when you go to more than one doctor, but they all essentially follow the same protocols anyway. I think that you should be at an oncologist that you feel comfortable with. Maybe the surgeon can give you a referral? Would that work maybe?
As for the statistics. I had read that about 20% somewhere on the web, but at the time of my liver resection, the surgeon at MD told me it was 50-60%. So that is who I believe! Besides, it really does not matter what the statistics say! You either live or you don't and IMO it is either 100% or 0%. Right? Besides, those stats are based on the "average cancer patient", who is not a 33 year old otherwise healthy individual. Most CC patients are 65 and older, so obviously you are not the "average patient". Forget that and just focus on the fact that you will be OK. Also, if you want, feel free to e-mail me any time here on the site. I am about the same age as you and have been through the exact surgery and chemo you are going to have. I am still alive, too! and NED!

bryancarson's picture
bryancarson
Posts: 47
Joined: Jan 2004

I just had liver a liver resection and doing well. The pathologist called it a curative liver resection. I think that chemo is pretty much regulated across the board. What you would receive at the hospital is probably just the same as the HMO. Now, about the oncologist. Change. You will see him/her every week for months. It's not worth not liking them. I'd change right away. I don't know what University you are refering to. I live in the Seattle area and so assume that the UW is University of Washington. If that is the case. I HIGHLY recommend Virginia Mason. That is where my surgery took place and I had the #1 surgeon in the state for liver mets. He was incredible. All the docs and nurses were amazing. His name was John Ryan. If you are from Seattle, VISIT HIM RIGHT AWAY. Tell him Bryan sent you and that you met me here. He was talented, caring, and exception. With liver surgery, you want the most talented hands you can find. Don't settle for an HMO for this surgery. It's too big a case for those schmuks.

steved
Posts: 835
Joined: Apr 2004

Do not hesitate in doing what you feel most comfortable with in respect to building a team of professionals around you. Seek out surgeons, oncologists etc that you feel comfortable with and who come with good recommendations. Particulalry with liver resection it may be worth finding out who locally has teh best reccurrence rates after surgery to guide your decision (though recurrence rates aren't everything).

If youlook at stats for CC there are some scary ones out there and Susan is right- it is very difficult to relate the stats to your own condition. Keep in mond even if they way the cure rate is 5% no one can say you won't be that 5% so there is always hope and a reason to keep fighting.
Hope this is helpful,
Steve

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

I only have one thing to say...Statistics are for VEGAS! (Right, SpongeBob?)

Stacy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

And the way you beat the odds, Stacy, all I can say is:

WATCH OUT VEGAS HERE COMES STACY!!!

peace, emily who gambled and won big

jana11
Posts: 708
Joined: May 2004

Maria, I am so sorry you didn't hit it off with your onc. I am 34 (Dx at 32 yrs old). Fortunately for me, MD Anderson was covered by my HMO. I live in Houston.

One VERY good reason you should go to UW is because you are so young, the cancer is more likely to be more aggressive; which also makes it more responsive to chemo. Ask your onc how many younger CC patients they have treated. I agree to wanted all the md's to be at the same place, but it isn't essential. You can always get a second opinon at UW and make sure the local HMO is following the right protocol.

AND... radiologist at major centers are better at picking up subtle changes. Make sure you get second opinions on your images/ct scans, etc so that nothing gets missed. YOu have to be your strongest advocate. If you didn't like this doctor get another; insist on referral - if they refuse ask for a written letter explaining why referral isn't necessary. At least, that what I think I would do.

You need to feel you are in good, caring, and healing hands. Think about what would make you feel that way.

As for the 20% - it is a load of crap. Liver mets statistics depend on number, size, location, surgical skill, etc. I had a single lung met resected. The surgeon told me surgery was about 30% cure rate, my onc told me about 40% - but what the others said is right. You are either 100% cured or not. I live my life as if 100% cured, because it is much better that way.

Try to stay positive and fight a good fight, but don't waste energy fighting with the docs. Get one that you feel is on your side.

Best of luck. jana
PS.. is UW in Madison? If so, it is a great medical center!! I went to undergrad at UW-Madison.

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Thanks for all info and good spirits. You all are extremely helpful.

Maria

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