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scan results are in...

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

Met with oncol. this A.M. cancer has not spread to liver but they found a4mm spot on the left side of my lungs and a 5mm spot on my right...my pet scan is thursday, hopefully its nothing! they are trying to send me to the CLEVELAND CLINIC..she said it is top notch..Anyone had any dealings with them? I am in for an 8 month ordeal i guess.... chemo and radiation daily for 6 weeks before surgery and another 6 weeks of both following... my chemo plan is XELODA how is that??? and a 5fu whatever that is...and she mentioned oxeloplaten, i dont know if thats spelled right...my C.E A. was4.3 normal is3.0 I have no idea what that is.. Ive got alot of internet searching planned for today!!! thank-you again for all your responces, its overwheming to know that there are soooo many wonderful people in the world!!! I hope no one gets tired of my questions! thanks again from sault sainte marie Michigan... as far north you can go at the canadian border! big tigers fan !! ill talk to you all soon !!! thanks and god bless all of you!

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Hi Mark and welcome.

To be honest, the treatment is generally the same wherever you go unless you are a special case or didn't respond to those.

I wasn't rectal cancer, but know that rads and chemo are generally the first line of defense with surgery, if the tumor remains after rads, later.

You'll know more once you get your CT results, but let's just hope/ pray it's early stage and you can be quickly cured.

Again, welcome!

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

So, I guess you have rectal cancer? (That's what I had.) I don't know whether or not you should ask to go somewhere else. Maybe you're okay where you are. Perhaps you could ask your current oncologist what he recommends? I'd guess the U. of M. in Ann Arbor would be a possibility, since it has a distinguished medical school.

--Greg

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

First of all, don't run around on the net and start looking at statistics and stuff, they will scare the crap out of ya..They are 2-5 years behind time and the medical field now is so much more advanced now than what it shows in cyberspace. This (and your Drs ) will be the only place you will need to learn everything you need to know on care, treatment regimens, side effects, etc, down to pooping . We cull nothing, we hold nothing back, so you do the same. Be bold , vent, cry, rave, laugh, whatever you want in here is accepted. We are a huge family and we welcome you in (sorry you have to be here). You will find that you will be up to speed on a lot of your treatments and meds taken before you realize it just spending time here. It is a place of unlimited knowledge, and someone in here has been through anything that you might go through, so just ask.

Also, they will be on soon enough to offer up suggestions on the best places and why they suggest those.

Mine was very low...So, don't be surprised if they recommend or inform you that a colostomy may be very probable...Its no big deal, I have one and its a piece of cake.....anyway, this will be what you make of it. PATIENCE is the key to this journey. Don't count on anything big happening all at once, this is a journey of small victories and we don't build ourselves up to have the bucket kicked out from under us. Take your time and be patient and always ask in here if your not sure what is going on. We will keep you on top of everything to do and everything to expect, and let us know how the scan comes out.........Buzzard

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

HI, I'm so sorry to hear you have been Dx. It's normal to have chemo and radiation as pretreatment to surgery for rectal cancer. But first I would get a second opinion at a good hospital like sloan kettering, MD Anderson or one in your state that is top notch. It's worth the extra effort. I'd also make sure you use a colorectal surgeon when researching for a surgeon. They do laproscopic surgery. You may need a iliostiomy temporary but that really isn't bad at all. You are young so you can give it a good fight and win. I would read the survivor stories from the colon club (http://www.colonclub.com/). Look at their colendar for 2010. All survivors and very inspiring. God bless you and keep you strong.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Actually, Shawn Felty died in December.

Julie 44
Posts: 479
Joined: Oct 2008

Hey there welcome to our club.....Ok first you need to sit down and relax for awhile..I know you feel like a deer caught in headlights....First things first.......Find out what your doctor says..What treatment he recommends,how long the treatments will be,find out what the CAT scan says(get a written report of this) Then get a folder just for all of your papers pertaining to this..Keep them ALL.....Next call a reputable cancer inst..and get a second opinion..Bring all your papers with you an ask questions..ASK ASK ASK....Write it all down or bring someone along with you to help remember things....Then when you go home sit down with your family and or friends and go over everything......Alos feel free to ask us here on the board cause like Buzzard said we have all been here and done that on one point or another....I find it to be of great importantace to get a second opinion if for nothing else than peacse of mind or if you are not happy with what that doc says than go t another doc..YOU MUST BE YOUR OWN ADVACT!!!!!!!!!we are here for you so know that you have many well wishers behind you...Keep us posted on whats happeningand good luck JULIE

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

thank-you!!!hopefully tomorrows cat scan is o.k. its nice to have everyone care.....

k1
Posts: 220
Joined: Dec 2009

sorry duplicate

k1
Posts: 220
Joined: Dec 2009

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%3A+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

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Welcome to the board. Sorry I didn't see you post earlier but we were up in Mid Michigan over New Years and just got back. Like everyone said, ask away, nothing is out of bounds and you will find more information here than anywhere. Don't look of stats, they are depressing and out of date. That being said, I noticed the Big D on your shirt, we are also in Michigan, Livonia and West Branch to be exact.

We are currently being treated out of Oakwood Hospital in Dearborn. Just worked out that way. We had a top notch surgeon, everything went very smoothly and the care and staff was excellent. Our oncologist is also in Dearborn, and he has done very well by us. Things happened fast for us so to be honest, we didn't shop around when we found out about George's cancer. Colonoscopy was 3/27, all tests, CT's, appointments with surgeon, oncologist, etc. were done and George was in surgery on 4/2/09 and home recouperating on 4/8/09. George's internist made things happen very quickly by making all the calls for us. Geoge's colon cancer was in the transverse colon so there was no radiation, just surgery followed by chemo.

In doing my research for a second opinion, Karmanos Cancer Institute jumps out at us, they are doing wonderful stuff there and of course the University of Michigan in Ann Arbor. Both are in the top 100.

We spend a lot of time in the mid Michigan area (West Branch) and they have a new Seaton Cancer Center there where a neighbor is receiving radiation for Lymphoma but I don't think his oncologist is there, he just receives his treatment there. I don't have experience with Seaton so I can't advise you on that.

Our surgeon was a board certified colorectal surgeon. I think it is important to get a board certified colorectal surgeon rather than a general surgeon because that is all they do, that is their specialty. George's surgery was laproscopic and he was up and walking the next day. That being said, some on the board did use a general surgeon with good results. Guess it depends on how many of this type of surgery have have done.

There are others on the board in Michigan so hopefully they will respond also.

Take care and ask anything that comes to mind - Tina

zenmonk
Posts: 198
Joined: Nov 2009

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

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Sorry to hear about the spots on your lungs, Mark.

Xeloda IS 5FU, just in pill form. Oxi (oxaliplatin) is a strong drug but I made it thru 12 tx's just fine and I'm a lot older than you. It has loads of side effects. At $16,000 every treatment, you'll be worth your weight in gold. (Oxi contains platinum.)

5 FU and Oxi together are called FOLFOX.

You're probably talking more than 8 months because of the lung involvement. What ever it takes! Right?

zenmonk
Posts: 198
Joined: Nov 2009

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.

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