Hello and newbie for my husband

Rdhbond

good day, I am so glad to find this group and want to send you all good healing vibes today and everyday. I'm looking for some help and feeling a bit overwhelmed, and by but, I really mean bit as my husband was recently diagnosed with colon and rectal cancer 

 ,but not yet staged. his pcp said he'd refer him to a radiation oncologist but I feel like some steps here are missing. Any recommendations on some good clinical team and process recommendations. We live in the nyc area. My husband just wants to be told what to do next and I'm trying to get as much information available so he can make some informed choices, any recommendations and referrals would help greatly. I thank you. 

Trubrit

Welcome

I am happy to welcome you here, though not happy that it means your hubby has Cancer. 

There is always so much going on when you are first diagnosed.  

Others may have better advice, but here is my two pennies worth.

First, how was your husband diagnosed and by whom?  I have to look up pcp, as I am not familiar with that term (I'm foreign - thats my excuse and I'm sticking to it).... Well, looking it up didn't help.

 Normally, we see people going straight into radiation when their Cancer is at the early stages; but you say your husband has not been staged as of yet. 

If there was a Colonoscopy and biopsies taken, then they should be able to stage from that. 

My first suggestion - which you may already have done - is to get a nice, workable notebook and start writing down all of the questions that are running through your head. Also, keep a note of everything that you are told and by whom, dates and all. 

I would want to know everything, and it sounds like you do too. 

You need to know how the Cancer was diagnosed. What stage it is. If surgery is needed. Why you are not being reffered to an Oncologist as well as a Radation Oncologist. Be bold in your questioning.

As for NYC, we have some fantastic members here who are treated there, and they will surely share their advice. 

This is a wonderful site. Lots of love, advice, support. There are patients and caregivers, probably in equal numbers. You have found the right place for sure. 

Sue - Trubrit

 

Easyflip

I've heard

great things about Sloan Kettering. If you go there I'm sure you'll be in very good hands. Good luck on your journey and I'm glad you found this site. Best wishes!

Easyflip/Richard

db8ne1

PCP = Primary Care Physican

Hi,

Sorry to hear about your husband - but the folk here can offer a wealth of info.

Generally a tumor is found during a colonscopy given by a GI Doc.  The GI and PCP often work together to get you in with a radialogist/oncologist (or team).  The staging can be done in a couple of ways.  Mine was done by the GI doc when I had an EUS (Endoscopic (Internal) Ultra Sound).  That shows how deep (mine was T3) the tumor has penetrated the colon wall - and also shows possible lymph nodes involved.

From my experience, the radiologist will want to do a CT of the chest/abdomen/pelvis to make sure that there are no apparent mets.  The reason for this is that mets will change the treatment plan.  I had no mets so the radiologist wanted to do 6 weeks of chemo/radiation to shrink the tumor and target the lymph nodes.  The reason for this is that shrinking the tumor makes the removal easier and can spare one from losing their rectum and/or needing an ileostomy or colostomy.  (Although they never know if you will need one until they do the surgery and see what's what...). After shrinking the tumor, they surgically remove the cancer and surrounding colon and do an "anastomosis" - to reattach the ends of the colon.  After recovering from surgery, they may do "clean up" chemotherapy for another 6 months - depending on the initial stage of the cancer.

That was my experience, anyway.  Some have surgery first - especially if the tumor is impeding bowel movements and causing pain.

As Turebrit indicated, make sure you take lots of notes and write down all of your questions (so you don't forget them during the appointments).

Best of luck in your journey!

J

lilacbrroller

Easyflip said:

I've heard

great things about Sloan Kettering. If you go there I'm sure you'll be in very good hands. Good luck on your journey and I'm glad you found this site. Best wishes!

Easyflip/Richard

MSK?

Hi. Welcome to the board. I agree with Richard/Easy Flip. If you have good insurance, go to Memorial Sloan Kettering (MSK) in NYC.  they are a comprehensive cancer center and offer some groundbreaking, curative treatments for MCRC.   A Dr. Nancy Kemeny specializes in liver pumps which deliver chemo directly to the liver, if it has metastacized there.  I had a Dr in NYC who recommended Mt. Sinai as well for certain treatments. 

As Sue/Trubrit has said, the first thing the doctors do when they find a lump after a colonoscopy is to biopsy it to determine if it is cancerous. If it is, the next step would be to order full body scans (head, chest, abdomen, pelvis, usually) to determine if it has spread anywhere - either a pet scan or a CT scan is what is usually ordered.  If you are seeing a surgeon, a concurrent in-depth scan of the tumor area might also be ordered to determine spread in the immediate area, as a precursor to any surgery and to save time. 

The treatment plan would depend on the spread of the tumor, ie surgery only, surgery plus chemo and/or radiation, etc, chemo only.  At the beginning, it's very step by step because it has to be. 

good luck - all the best

Karin

NewHere

Call Sloan Kettering

I was recently diagnosed with colon cancer.  (End of January)  Had resection a little over 3 weeks ago and had robotic surgery.  Considering what was done, pretty amazing how fast I felt pretty good.  Out of hospital in 4 Days.[Note it is colon only for me, not rectal]  Getting a Port next week, then chemo week after.  The general person who did the colonoscapy sent me to a surgeon and said "they are all basically the same when it comes to this type of cancer."  Well I did, and just discussing things with them, no they weren't.  The first surgeon was going back and forth on whether I needed a scan and other things.     When I went to Sloan they immediately sent me for a test to check to see if chemo beforehand was needed.  Walked out of the surgeon's office and up the elevator to another floor.  Stayed long the initial day (about 7 hours) but had my ducks in a row and felt confident.  And meeting with my oncologist last week, I really continue to feel I made the correct choice.

Sloan has a whole team of gastro specialists, including floors where you go to recover after the surgery and also seems some of the chemo.  They have oncologists who only do this.  I thought I was heading towards having to go to chemo for two days straight every two weeks, they have it down to one day (still with a pump for two days, but that is at home) and the pump does not even use batteries.

At the very least you should be getting a second opinion even if you are totally happy with what is going on and what they are telling you.  It is really worth it.  

Take a look here

http://www.mskcc.org/cancer-care/adult/colorectal/colorectal-expert

I have nothing to do with Sloan Kettering nor do I know anyone who works, or has worked, there before meeting my Docs  My GP set me up, he really thought it was the best move.

All I knew was their reputation beforehand.  You maybe able to find other places just as good, but I doubt anyplace will be better.  Not sure how far from the city you are, but call.  And afterwards some things can be done in satellite offices in Westchester and elsewhere.

I am guessing, like anything, you may find people who had a bad experience there, but I cannot be more happy (considering I have Stage III C cancer ) with my choice so far.  As to Staging, the surgery gave the final answer.  Before going in I was pretty sure it was some flavor of Stage III due to suspect lymph nodes on orginal scan.

Good luck with it all and you found a good spot here.  The people here are amazingly supportive and helpful.  If is one of the good thiings with dealing with cancer (meaning the support and the rest)

Fight for my love

I am here for my husband too.

I am here for my husband too. Sorry that you have to be here, but welcome to the forum. I agree with Eastflip, Memorial Sloan Kettering Cancer Center is definitely one of the best. Good luck with the treatments.

Trubrit

db8ne1 said:

PCP = Primary Care Physican

Hi,

Sorry to hear about your husband - but the folk here can offer a wealth of info.

Generally a tumor is found during a colonscopy given by a GI Doc.  The GI and PCP often work together to get you in with a radialogist/oncologist (or team).  The staging can be done in a couple of ways.  Mine was done by the GI doc when I had an EUS (Endoscopic (Internal) Ultra Sound).  That shows how deep (mine was T3) the tumor has penetrated the colon wall - and also shows possible lymph nodes involved.

From my experience, the radiologist will want to do a CT of the chest/abdomen/pelvis to make sure that there are no apparent mets.  The reason for this is that mets will change the treatment plan.  I had no mets so the radiologist wanted to do 6 weeks of chemo/radiation to shrink the tumor and target the lymph nodes.  The reason for this is that shrinking the tumor makes the removal easier and can spare one from losing their rectum and/or needing an ileostomy or colostomy.  (Although they never know if you will need one until they do the surgery and see what's what...). After shrinking the tumor, they surgically remove the cancer and surrounding colon and do an "anastomosis" - to reattach the ends of the colon.  After recovering from surgery, they may do "clean up" chemotherapy for another 6 months - depending on the initial stage of the cancer.

That was my experience, anyway.  Some have surgery first - especially if the tumor is impeding bowel movements and causing pain.

As Turebrit indicated, make sure you take lots of notes and write down all of your questions (so you don't forget them during the appointments).

Best of luck in your journey!

J

Ah! Thank you, J

I figured it was something like a GP. 

Sue - Trubrit