Key to long term survival for Stage 4

Sounds like maybe you are

Sounds like maybe you are fustrated.

I am sorry.. my drs talked about surgey from the very first diagnosis.. I was always told what I had was operable and controllable once we found the mets.

Why did they not want to operate on your tumors? I wish i had something to offer you here... but you know nothing ventured nothing gained.. ask them about surgery.. you have nothing to loose.

Tedd -

Re:
 "I do not appear to be a candidate for surgery, so my outlook
isn't real good.  I think that explains a lot about how my ONCS
have approached my treatment....."

Oncologists specialize in  chemicals, surgeons specialize in surgery;
why are you asking Oncologists about surgical procedures for cancer?

Make appointments with a few surgeons and get a few other opinions.

There are new surgical techniques, RFA, etc., that may be what you
really can use.......  Surgeons are usually much, much more objective
than most Oncologists!

Get some other opinions ASAP!

Better health to you,

John

Hi Tedd
Not knowing much of

Hi Tedd

Not knowing much of your situation, but it does sound as if you could benefit from a second or third opinion.  It will not hurt to try.  Not sure where your tumor/s are, but perhaps going to either a major cancer institution with surgeons who see this daily or a specialist in your needed surgery, such as a colorectal surgeon vs. general surgeon if you have not already been to them.  

I have also heard many many stories of people being told they are not candidates but become excellent candidates after chemo for a period of time.

Sending positive energy and good luck to you!

 

surgeon vs. oncologist

Ted, I agree with a lot of posts on here. I'm being treated by U of Michigan Health System.  They have recently discovered two tumors in my liver (via an MRI). The process at UMHS is to send my case to a tumor review board (composed of surgeons and other doctors).  I am going today to talk to the surgeon to see if surgery is an option. Even if he says surgery is not an option I may pursue an appointment with John Hopins Liver Tumor Center as they specialize in this type of surgery. 

Good luck with the fight!!!

And God be with you

Phil

There was a woman at the Colon Club...

who had to consult with several surgeons before she found one who was willing to operate (in her case, she had distant lymph nodes involved...not sure why, but most surgeons don't want to operate in this situation).  She did finally get someone who would give it a shot, and has been doing well since that surgery (same month I had my last surgery...Dec. '11).  So far, she's lived about a year longer than her doctors anticipated.  Are you able to talk to someone who is a very experienced crc surgeon?  That might make a difference.  And as others have said, I really don't think most oncs know what is possible in the surgical realm.  AA

tachilders said:

I typed out one reply, but

I typed out one reply, but the site wasn't responding and I lost it.  I will try and recreate it, and give some more info on my case.  In June of 2012, I had a colonoscopy (due to symptoms consistent with IBS, IBD, and/or CRC which included multiple trips to the bathroom and triuble passing stools) and they found a tumor at the rectosigmoid junction.  It was large enough that the doctor couldn't even get the scope past it, so he had the colorectal surgeon look at it and took a biopsy.  When I woke up, they told me what they had found, and recommended a follow-up appointment with the colorectal surgeon in a couple of days.  A friend of mine was there with my wife, and he suggested I ask them to do a CT scan that day, as they would likely have to do one anyway prior to surgery.  The docs agreed, so I drank the contrast stuff and had the CT scan of my abdomen.  They sent me home, but I was in so much pain from the colonoscopy prep and drinking the CT contrast (remember, I had a major blockage of the colon) that I ended up in the emergency room at 3AM Saturday morning.  The colorectal surgeon decided that I needed to stay in the hospital and have surgery ASAP, which turned out to be Monday as they were waiting for me to pass everyhting out of my colon, plus it was swollen to like 2X nirmal size due to the colonoscopy prep.  Anyway, the plan was a laproscopic resection and reattachment to remove the tumor, with the possibility of a full incision and colostomy bag placement.  After about 30 minutes of surgery, the surgeon went out and told my wife that the tumor was not operable at all (it had spread out of the colon and was near my spine and bladder), and that all he could do was the colostomy and refer me to the oncologist.  He also mentioned that he saw some liver tumors and tumors in my omentum/peritoneum.  All of this was done at the local hospital in Kalamazoo, MI and not at any sort of large hospital specializing in cancer, mainly due to the blockage and risk of colon rupture.  Who knows what they would have been able to do different at a larger or more specialized hospital, but that is water under the bridge.   I then met with the local oncologist, and went to Northwestern in Chicago for a second opinion from an oncologist there.  Both seemed to agree that I was not a candidate for surgery, and also agreed on the chemo regimen (FOLFOX + Avastin).  Northwestern is supposed to have a cancer board (that I assume has surgeons on it) that reviews cases, but I have never talked to anybody there other than my oncologist.

As far as my diagnosis/disease, I have mets to both lungs, liver (one large, one medium, many small tumors on all lobes), LNs (not sure how many or where), and my omentum/peritoneum.  The tumors there have been described like grains of sand throughout the omentum.  However, the CT scan reports that I have read have never specifcally mentioned the peritoneal tumors (with regard to size) or anyhting in the liver other than the 2 bigger tumors.  The lung tumors are all 1 cm or smaller in size, and there are about 2-3 in each lung.  The tumor in the colon is also pretty big.  I did 12 FOLFOX tx and 10 Avastin tx, and the tumors had shrunk after 5 tx and then gotten slightly smaller after 12 tx.  I am off oxaliplatin now due to neuropathy after 12 tx, and am continuing on 5FU + Avastin.  It is compltely possible that my mets are so widespread that I am not a candidate for surgery, but I think I need to press that option and talk to some surgeons.  I am willing to try about anything at this point, as just doing chemo does not appear to be a very good plan for long term survival.  I will be going for more CT scans at NW in March and plan to really press my oncologist for more info and maybe even meet with some surgeons there to discuss my case.  I owe it to my wife and kids to do anything reasonable to survive this cancer as long as possible.  Thanks for letting me vent a little bit...

HI Ted,
I could never have

HI Ted,

I could never have guessed you had so much going on .. I can't venture a guess as to what to advise so I will just say i am praying you find some answers and some peace.. I am sure this is a stressfull perdicament.

Stay well..

Donna

tachilders said:

I forgot to mention in the 5

I forgot to mention in the 5 weeks post-surgery that I had to wait prior to starting chemo, my tumors grew "significantly", and the liver tumor had grown enough that it blocked my bile duct and I got very jaundiced (bilirubin was ~10).  I went to NW for a stent to be placed into my bile duct, but they were unable to do it via the endoscope procedure, so I had to stay overnight and get an external bile drain placed the next day, which is basically a tube placed through the chest and into the liver to the bile duct that then drains the bile into a bag that you wear on your leg.  I had this and a colostomy bag for about 4 months, when I finally went back to NW and got a stent placed into my bile duct via insertion through the drain line they had placed before.  At least I don't have two bags anymore!!!  

The surgeon that attempted my colon resection was a colorectal surgeon, but again the hospital where I had the procedure is not any kind of large research hospital or cancer center, so who knows how good/experienced the surgeon was (although he did a good job with the colostomy).  In retrospect, I really wish I had time to get a second opinion prior to that initial surgery, as maybe a more experienced colorectal surgeon would have done something more or different.  My surgeon did take out a few of the omental tumors for biopsy to make sure they were colon cancer in origin.  In all honesty, I got the distinct impression that once he got in there and saw what was going on he thought "holy crap, this is waaaaay worse than I expected", based on how he talked to my wife (and a few others that were there) during my surgery, and his interactions with me after surgery.  He seemed really shook up about the whole thing.  I wonder why they weren't able to tell more from the CT scan they did prior to the surgery.  It seems they should have been able to tell from the scan that I had an inoperable tumor, but maybe the thinking was that they had to go in anyway and do something to relieve that blockage, so they could take a look first and then decide what to do.  Anyway, I guess I'm just looking for any and all options to hang around as long as possible, and surgery seems to be key to that.  I will get a LOT more info out of my oncologists in the next few weeks, and may also start looking into getting a third or fourth opinion, and from surgeons and not just oncologists.  Maybe I just need to hear from more experts before I give up on the surgical option....

 

Tedd 

Not exact
Ted - Cancer is so insidious. We remain hopeful but it is difficult and frustrating.
Today I saw a pulmonlogist. We are scheduling a broncoscopy to check soft tissue
on right side of trachea. I am having this done at our local hospital rather than Northrwestern.
My reoccurence is in the liver but now the focus is a left lung met...
Will have broncoscopy to check "soft tissue " and a couple rounds of chemo.
They tested KRAS and I can do Folfiri.
My brain met was only one tumor and I scan early Feb., for that check.
Its all so overwhelming...Seek another opinion. I know it takes time to do this but you will benefit.
Keep moving forward!
Barb

tanstaafl said:

getting to "yes"

The surgeons want a surgery that is either curative or has good long term prospects.  

For my wife's 2nd surgery, a radiologist recommended surgery and that helped to turn around the most highly recognized surgeons after several others declined.  Also her CEA data, papers and scans convinced the accepting surgeon that her chemo might have or probably had stopped metastasis.  She uses light daily oral chemo, with lots of off label meds and supplements, every day except surgery itself.  High dose cimetidine still during surgery, and Celebrex (about 7-14 days per the surgeons) !

cimetidine and celebrex
I mentioned this to my oncologist and he was not familiar with prescribing these.
Kind of frustrating.
There is a big difference in the thinking between surgeons and oncologists...
Barb

tachilders said:

I typed out one reply, but

I typed out one reply, but the site wasn't responding and I lost it.  I will try and recreate it, and give some more info on my case.  In June of 2012, I had a colonoscopy (due to symptoms consistent with IBS, IBD, and/or CRC which included multiple trips to the bathroom and triuble passing stools) and they found a tumor at the rectosigmoid junction.  It was large enough that the doctor couldn't even get the scope past it, so he had the colorectal surgeon look at it and took a biopsy.  When I woke up, they told me what they had found, and recommended a follow-up appointment with the colorectal surgeon in a couple of days.  A friend of mine was there with my wife, and he suggested I ask them to do a CT scan that day, as they would likely have to do one anyway prior to surgery.  The docs agreed, so I drank the contrast stuff and had the CT scan of my abdomen.  They sent me home, but I was in so much pain from the colonoscopy prep and drinking the CT contrast (remember, I had a major blockage of the colon) that I ended up in the emergency room at 3AM Saturday morning.  The colorectal surgeon decided that I needed to stay in the hospital and have surgery ASAP, which turned out to be Monday as they were waiting for me to pass everyhting out of my colon, plus it was swollen to like 2X nirmal size due to the colonoscopy prep.  Anyway, the plan was a laproscopic resection and reattachment to remove the tumor, with the possibility of a full incision and colostomy bag placement.  After about 30 minutes of surgery, the surgeon went out and told my wife that the tumor was not operable at all (it had spread out of the colon and was near my spine and bladder), and that all he could do was the colostomy and refer me to the oncologist.  He also mentioned that he saw some liver tumors and tumors in my omentum/peritoneum.  All of this was done at the local hospital in Kalamazoo, MI and not at any sort of large hospital specializing in cancer, mainly due to the blockage and risk of colon rupture.  Who knows what they would have been able to do different at a larger or more specialized hospital, but that is water under the bridge.   I then met with the local oncologist, and went to Northwestern in Chicago for a second opinion from an oncologist there.  Both seemed to agree that I was not a candidate for surgery, and also agreed on the chemo regimen (FOLFOX + Avastin).  Northwestern is supposed to have a cancer board (that I assume has surgeons on it) that reviews cases, but I have never talked to anybody there other than my oncologist.

As far as my diagnosis/disease, I have mets to both lungs, liver (one large, one medium, many small tumors on all lobes), LNs (not sure how many or where), and my omentum/peritoneum.  The tumors there have been described like grains of sand throughout the omentum.  However, the CT scan reports that I have read have never specifcally mentioned the peritoneal tumors (with regard to size) or anyhting in the liver other than the 2 bigger tumors.  The lung tumors are all 1 cm or smaller in size, and there are about 2-3 in each lung.  The tumor in the colon is also pretty big.  I did 12 FOLFOX tx and 10 Avastin tx, and the tumors had shrunk after 5 tx and then gotten slightly smaller after 12 tx.  I am off oxaliplatin now due to neuropathy after 12 tx, and am continuing on 5FU + Avastin.  It is compltely possible that my mets are so widespread that I am not a candidate for surgery, but I think I need to press that option and talk to some surgeons.  I am willing to try about anything at this point, as just doing chemo does not appear to be a very good plan for long term survival.  I will be going for more CT scans at NW in March and plan to really press my oncologist for more info and maybe even meet with some surgeons there to discuss my case.  I owe it to my wife and kids to do anything reasonable to survive this cancer as long as possible.  Thanks for letting me vent a little bit...

get another opinion and

get another opinion and consider HIPEC