scan results are in...

Welcome
Hi.

I was diagnosed at Stage 1 with colon cancer, so I can't offer you advice on treatments. But I do want to welcome you to the board and wish you well in your cancer journey. You're at the scary place right now, where you've just been diagnosed and can only wonder what comes next. Trust me, it will get better.

Come back to the board often and let us know how you're doing.

*hugs*
Gail

where to go, what to read
It can be mind boggling at first!

The information on the American Society of Clinical Oncologists (ASCO) website is kept up to date on present and future trends and contains the standard treatment guidelines that practicing oncologists use in clinical practice (search clinical treatment guidelines). It's a good resource and here is the link for new patients trying to find their way through the maze of making choices about cancer care.

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Newly+Diagnosed:+First+Steps+to+Take.

The main ASCO professional website also contains links to statements issued at their annual meetings each May that talk about where their research is headed. Very interesting speech given last May about Stage 2 and Stage 3 disease -- now some oncologists think that Stage 3 is not just a later manifestation of Stage 2 but possibly separate diseases and maybe that's why Stage 3 treatments don't always work the same or prevent recurrence in Stage 2 -- hypothesis coming soon to your next clinical trials!

As for where to go geographically, many studies have shown that people who go to one of the National Institutes of Health designated Comprehensive Cancer Centers have the best overall outcomes and if you live close to one that's a good place to go. Unfortunately many of us do not live close to one and travel can be expensive and time consuming to the point it isn't reasonably practical (travel, hotels, meals etc). The second tier of NIH cancer centers are next and everything they learn at the comprehensive ones is filtered down to practice there eventually. The NIH splits the country into different regions -- in Michigan (sorry, originally thought you said Minnesota) you would be in the Midwestern region, I think. Go here to find the maps and different levels of cancer centers in your region to see what is close to you:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-regions.html#midwest

Between us, my family members have done it all -- one of us has gone to one of the comprehensive national centers/hospitals, one of us has gone to one of the regional designated centers and one of us has gone to private practice oncologist close to home. I do not agree with the statement that the treatment is the same anywhere -- each of these types of cancer treatment centers has its advantages and disadvantages and different levels of new technology and surgeon expertise available to them (and you), as well as a totally different personal "feel" to them. You can feel like part of a "cattle call" at the bigger comprehensive centers, with waits for appointments, but you may get expertise, technology and the latest surgical techniques or experimental treatments available in clinical trials that you wouldn't get close to home at a small oncology group. However, close to home you may get more personal consideration and the ability to go to a followup appointment on the spur of the moment if you need it. You have to decide what you can reasonably afford to do and what you and your family/physicians etc. feel most comfortable with for your situation. You may have to be your own advocate so do the best you can for yourself.

Hope this helps. Good luck to you.

K1

hi
I think the results of your tests and scans and staging will dictate to some degree were you will go. I also had a tumor that was very low. My Dr's opted to operate and remove the tumor before any chemo or radiation. This was done succesfully then I went on my merry way. 11 months later it had spread to my liver-multiple mets to many and large to operate. Avastin, oxalplatin and xeloda shrunk or killed of about 60 percent of the tumors. Became operable and had a liver resection surgery in jun. Now I am stage 4 but currently off chemo and disease free (at least on the scans). Get as much info as you can, learn as much as what you can about what is happening to you. Remember Dr's are like golf players. Some can make shots that others cant. So if one DR tells you no way, there may be another Dr who can make the shot. If you do have a resection and come back clear, monitor your liver closely. There is a portal vein that drains from the rectum into the liver so it has a tendency to spread to there. Please keep us posted I am curious what your staging is. Prayers

hi again
thanks for the update. pet scans are easy money. They make you sit real still for about 45 min then they inject a radioactive isotope then its just like a regular ct scan. No dealings with the cleveland clinic but I have heard they are top notch. Xeloda is ok. It made me feel kinda yucky but its not really that bad. Oxalplatin can be a nightmare. I was ok on it for awhile but then my body just started to reject it. I was hospitilized about 3 times for chemo related issues. Everyone is different. CEA is just a tumor marker test. Its a good test but its not the be all end all. I think someona already addressed this but be careful what you read on the internet it can be depressing sometimes.