Lots of questions can you help!

broderick78 · February 2006

In late December a friend of mine was diagnosed with Adenocarcinoma of the small intestine. They also found it had spread to his liver. With in 4 days of him being diagnosed he became very sick and was hopitalized. He was unable to eat or drink, so they did a scan and found a tumor in his upper small intestine. They did surgery and once they got in, the doctors said the tumor had already wrapped around the blood vesels and they did not want to remove the tumor because of the risk he would bleed too much. So they cut the intestine below the tumor and rerouted it. With in a week he got worse and lost a lot of weight, and still wasnt able to hold anything down, so they went in to surgery again and found that his sutures had busted and they had to fix that problem. Then 9 days later he was having some more problems and pain and they found another blockage, so again they went in and found this time it was scar tissue that was blocking him up. They scraped what they could then ran pepsi and coke a cola through his feeding tube to clean him out. The doctors told him that he was not well enough for chemo or radiation, and said there was no hope for him.
Now his wife and I have questions?
The only PET Scan that he has had done was in December, and they also ran his CEA levels. They told us that in December his levels was at 1.?. Why havent they ran anymore test since his first diagnoses?
He has never seen an onocoligist, only the surgeons. Why didnt they have an onocoligist come in and see him while he was in the hospital?
We have asked the Doctors these questions and they havent really given us an answer.
They sent him home with hospice Thursday, and so many people have told us stories of hope but its hard to believe there is hope the way the doctors are talking to us.
One man came to a benefit we had, and told us he had the same thing and had 11 tumors on his liver and with chemo he has been doing great. So when we approached the doctor about this story he told us that Tony had alot more than 11 tumors on his liver. Is this why he is considered unhopeful?
Can anyone give us some info on Cancer Centers that deal with this type if cancer?

scouty · February 2006

I don't know where you live but get away from those docs you are seeing and get a second opinion........surgeons only cut, they don't have a clue about chemo and chances. If I were you I would call the Cancer Treatment Centers of America (there are 4 in the US, do a search to find them).....you can call them 24 hours a day I believe. They are one of the few places that combine alternative treatments with some of the traditional practices.

Good luck to you,

Lisa P.

lfondots63 · February 2006

Hi Broderick,

Like Scouty I think you should get a second opinion. I think you should do like she said and also call your regular doctor to see if they know of a oncologist. I know of others that have done chemo to shrink tumors. Good luck and we will keep him in our prayers.

Lisa

CAMaura · February 2006

scouty said:
I don't know where you live but get away from those docs you are seeing and get a second opinion........surgeons only cut, they don't have a clue about chemo and chances. If I were you I would call the Cancer Treatment Centers of America (there are 4 in the US, do a search to find them).....you can call them 24 hours a day I believe. They are one of the few places that combine alternative treatments with some of the traditional practices.

Good luck to you,

Lisa P.

I too hope you get a second - and maybe third opinion - and fast; and I am very sorry to hear your anxiety and frustration.
But, I sincerely and strongly disagree that surgeons only cut and know nothing about chemo and or chances.
Doctors cannot be lumped into categories anymore than people can be. There are great, good and poor in all fields and specialties - and many collaborate to bring the best level of care to the patient.
There is no reason why your friend's wife should not be able to have consultations - or a roundtable discussion - with the surgeon, gastro, oncologist...or whomever is most appropriate.
You are wonderful to ask questions on her behalf. You can always call the hospital administration as well to be directed to an oncologist or to find out how the second opinion procedure works for your friend's particular medical group. Spend an hour on the phone - it will be worth it, and you will be moving in a direction. You can press for follow-up answers and/or appts within, say, a two-day period and make sure that people understand your needs; and you (or your freind's wife) can personally transfer any needed paperwork to fill a new doctor in about pathology reports, scans, etc.
All the best to you and I hope that good, clear answers come you way.
-Maura - who will never EVER discount her surgeon or make blanket statements about how one specialty will act - or what they know. My surgeon's brilliance and dexterity was and remains an integral part of my care - from diagnosing to staging, to surgery, to consultations about chemo to post-treatment care.

Betsydoglover · February 2006

Hi - you sound like a great friend. I urge you all to please not give up already before you have even really tried to treat this disease.

Your friend should see an oncologist. If there is some wierd reason his current docs are not recommending one, then PLEASE take matters into your own hands. Find an oncologist and go for an opinion. Maybe even find another and go for another opinion. But you should not just be listening to surgeons and internists - you really need an oncologist in the mix.

You say your friend had a CEA and PET in December. I would not spend time worrying about why they haven't been repeated. CEA of 1 is really low - and that low CEA was recorded when your friend had known cancer. CEA is often not a very good marker for cancer. Mine for example was 0.5 following colon surgery, even though we knew from biopsy that I had metastatic cancer to the liver. And since your friend has had no treatments, they probably know all they need to know from the previous PET. (I just had a PET, 2 months after my December PET, but that is because I am NED and off chemo and they are aggressively checking for recurrence.)

I am sorry your friend has been through all this trouble. With all the surgeries it was probably not time to see an oncologist. But in my opinion, surgeons and hospital residents should not be telling your friend there is no hope or what he is too sick for. As Scouty said, surgeons cut. They are great at it and thank God for that. But, please see an oncologist as they are ones who know how to treat the disease. Your friend deserves to have their input into his situation.

Betsy

kerry · February 2006

Run to a second opinion ASAP! If your friend has not seen an oncologist or had a CAT scan or visited any cancer specialist I suggest you get him there right away.

2bhealed · February 2006

hi broderick,

I am really sorry to hear about your friend.

My sister was dx'ed with adenocarcinoma of the small intestine. Her's had adhered to the main artery that feeds the small intestine so her doctors were not able to remove all the cancer. They removed a tumor, I think about 18 inches of her intestine and then scraped the artery as best they could. They then radiated her insides while opened (they lined her ovaries with lead). They gave her so much radiation that the walls were SIX FEET thick!!!! They also gave her some chemo and sent her home to live what life she had left. This was all done at the world renowned Mayo Clinic in Rochester, MN.

She lived four years and had a baby. :-)

I am appalled that the doctors ran Pepsi?? through his system!! Sugar feeds the cancer!!!

Prepare your friend's wife. This is a nightmarish disease. But there should always be hope.

I agree with the others that a second opinion needs to be done post haste. But chemo or radiation is not necessarily the way to go at this point. From my experience with my sister the chemo that she did after she got worse only hastened her demise. So be careful. Chemo is cytotoxic and very hard on the liver.
There are many nutritional choices that can be made to optimize your friend's quality of life.

I cannot believe that an oncologist was not consulted for your friend while in the hospital. If anything, they can help explain the cancer and this situation.

Again, I am really sorry about your friend. I have walked on both sides of the fence as a caregiver and as a survivor. I much prefer the survivorship. Watching someone you love go through this is pure hell.

peace, emily

broderick78 · February 2006

2bhealed said:
hi broderick,

I am really sorry to hear about your friend.

My sister was dx'ed with adenocarcinoma of the small intestine. Her's had adhered to the main artery that feeds the small intestine so her doctors were not able to remove all the cancer. They removed a tumor, I think about 18 inches of her intestine and then scraped the artery as best they could. They then radiated her insides while opened (they lined her ovaries with lead). They gave her so much radiation that the walls were SIX FEET thick!!!! They also gave her some chemo and sent her home to live what life she had left. This was all done at the world renowned Mayo Clinic in Rochester, MN.

She lived four years and had a baby. :-)

I am appalled that the doctors ran Pepsi?? through his system!! Sugar feeds the cancer!!!

Prepare your friend's wife. This is a nightmarish disease. But there should always be hope.

I agree with the others that a second opinion needs to be done post haste. But chemo or radiation is not necessarily the way to go at this point. From my experience with my sister the chemo that she did after she got worse only hastened her demise. So be careful. Chemo is cytotoxic and very hard on the liver.
There are many nutritional choices that can be made to optimize your friend's quality of life.

I cannot believe that an oncologist was not consulted for your friend while in the hospital. If anything, they can help explain the cancer and this situation.

Again, I am really sorry about your friend. I have walked on both sides of the fence as a caregiver and as a survivor. I much prefer the survivorship. Watching someone you love go through this is pure hell.

peace, emily

I truly believe that a second opinion is important. They had an appointment Monday to see on onocologist, but Tony said that he was not prepared to go, also he is unable to get in and out of a car so hospice is arranging for an ambulance to take him to his next visit.
A G.I. Doctor called his wife today and was going over a few things, and she asked the doctor if he could tell her how many lesions Tony had on his liver, and he told her anywhere from 80 to 100 lesions are on his liver.
He is starting to get red dots all over his stomache, is this a sign that his liver is starting to fail?
I am doing all I can to help Marcia (Tony's wife) through this tough times, and thats why I am on here asking all of you advise. So I truly want to thank everyone on here for all of your help!

Reini · March 2006

Broderick we are very sorry tohear about your friend. We have found a good support group in yahoo groups Duodenal Cancer ( first part of the samll intestine) we are in AUs so cannot recommend a doctor but there are a number of people in the group that are having chemo for stage four small intestine cancer that can recommend hospitals
Good Luck, Belinda

Lots of questions can you help!

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