Stage 4 in the peritoneum lining and 2 out of 16 limpth nodes.

Larryv2.0
Larryv2.0 Member Posts: 10
edited March 2014 in Colorectal Cancer #1
Stage 4 in the peritoneum lining and 2 out of 16 limpth nodes.

The Cancer has spread to the peritoneum lining. The Oncologist at Central Baptist in Lexington Ky. told us that in his 20 plus years, he has never seen anyone live more than five years with this.

We are looking for anyone who has experience with this and, preferably, a hospitable that is looking for a strong, young woman who is willing to be a test subject in an experimental treatment.

If you don't know anyone, PLEASE call your DR. and ask if he or she knows of any such hospitals!

I have BCBS insurance and have been told that if we go to a hospital that is not "in the network" we would have to pay 30%, do any on you all have any thoughts on how this may effect us? Could the they just bill us?

I am including my original post below:

My wife has been diagnosed with coin cancer.

She is 35 and we have two home schooled daughters 7 and 3.

It all started in May with constipation we thought it was her diet and the constipation was mild. By mid June she was having increased constipation and pain practically everywhere between her ribs and hips. She went to our Dr. but could only get in to see the Nurse Practitioner. The Nurse Practitioner did an ultra sound and found a kidney stone and she also said that she had Colitis Because she could see "inflammation" in her coin.

We went to a urologist and the Ray confirmed a kidney stone. she was given some meds. and passed the stone. The passing of the stone relieved much of the pain but in July we had to go to the Dr. because the constipation and pain continued and steadily increased. The Dr. (a real Dr. this time) ordered a CT Scan and it confirmed his suspicion that she had Gaul Stones. The Gaul Balder was removed in mid July (I cant remember the dates) and after sufficient time for recovery, still no relief.

By mid September she was back at the Dr's' office. This time he said that it could be irritable bowel or colitis and sent her to have a scope (colinoscpy?) to help him make a diagnoses. The apt with the scope Dr. (I don't remember what they are called) was for OCTOBER 31ST! that was the earliest open appointment available!

After a very bad weekend (lots of pain) we pulled some strings with a nurse and got her an appointment for the following Wednesday (9/26) and called her Dr. who finally ordered her some medication for the pain/spasms. the medication worked and the pain and constipation were gone. I am thankfully that he was reluctant to prescribe medication because we may have not found out about the cancer for a long time.

The Colin scope Dr. told us after the procedure that he was "virtually 100% sure she had Colin cancer and scheduled us to come in the following Monday for the results of the biopsy and blood tests. We pulled some more strings and got the results the next day by phone, and scheduled an appointment for a PET Scan and a surgeon for October 2nd. The blood tests did not indicate any elevated something or other and no enzymes that would indicate that it had spread to the liver.

The PET Scan? the surgeon said that it didn't indicate that the cancer had spread but when I asked "so this is stage 1?" he said that he couldn't know for sure until after the surgery. The first available date for surgery is October 16th.

We called the Dr. who made the initial diagnoses and asked for another referral because we weren't comfortable letting it go that long. He said that that was a reasonable time and that the surgeon was very good and that he didn't think we could get in anywhere else faster.

I called another Dr. and the earliest apt we could get was on the 10th, I haven't called him back.


What should I do?

Comments

  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #2
    Hi Larry,

    My husband (49) was dx in Jan 06 with stage 4 Colon Cancer. He had his first surgery to remove the tumor, they found that it had spread to the peritoneum wall (3 nodes out of 19). We were at that time refered to a Oncology doctor some 2 hundred miles from where we live (Dr. W. Temple out of the foothills hospital in Calgary). My husband was a good candidate for the proceedure that you talked about earlier, they call it the "Sugarbaker Protocol" here in Canada. I asked the question almost 2 years ago , and no one had heard of this surgery - I believe this surgery saved my husband as he is currently NED.

    The surgery that my husband had lasted about 9 hours. As I am sure this is standard procedure (depending on what they find) I will tell you what they did to my hubby.

    They opened him up and had to cut away alot of the wall (lining - this is what holds all your organs in place) because there were so many seedlings attached to it. They told us they would have to remove any affected organs, but they found they only had to remove his gallbladder and appendix. They then fill the cavity with hot chemo heated to approximately 115 degrees, this is swished around inside for 90 mintues, they then suction it out and close you up. They insert 4 tubes (with suction cups) - ( 2 under the rib cage and 2 lower down. They then fill the abdomine with this hot chemo and leave it in you for 23 hours, they they suction it out and leave you dry for 1 hour, then fill you up again. This went on for 5 days straight. For the first day my hubby said he felt lots of pressure from the chemo, but I am sure it also had alot to do with being swallen from the surgery as well. He also came out of the surgery with a permenet illostomy, as they had to remove pretty much all of the colon (a small price to pay for your life).

    I don't know whether my hubby would be here today if not for that surgery. I highly recommend it.

    ((((Hugs))))

    Sue
  • houseofclay
    houseofclay Member Posts: 63
    #3
    First, I am sorry to hear of the situation you and your wife find yourselves in right now. Peritoneal mets are a challenge and the key for you guys right now, is to find a surgeon trained in this area. Dr. Paul Sugarbaker is a pioneer in this field and he practices in Washington, D.C. He has trained other doctors around the country, though, and his office might be able to suggest a doctor closer to home. His office number is 202-877-3908. One common treatment plan for peritoneal mets is debulking surgery (taking as many of the tumors out as possible) with hyperthermic intraperitoneal chemotherapy (HIPEC). Again, I would find a doctor who has done this surgery many, many times to discuss your wife's situation. As far as the insurance situation goes, I would find the doctor you want to see first and then contact his office about whether your insurance company is going to cover whatever treatment plan is needed. I think investigating this first before a clinical trial makes the most sense. Feel free to contact me offlist at aclay@ccalliance.org if I can do anything else for you. Andrea, Information Specialist, Colon Cancer Alliance
  • Larryv2.0
    Larryv2.0 Member Posts: 10
    #4
    houseofclay said:

    First, I am sorry to hear of the situation you and your wife find yourselves in right now. Peritoneal mets are a challenge and the key for you guys right now, is to find a surgeon trained in this area. Dr. Paul Sugarbaker is a pioneer in this field and he practices in Washington, D.C. He has trained other doctors around the country, though, and his office might be able to suggest a doctor closer to home. His office number is 202-877-3908. One common treatment plan for peritoneal mets is debulking surgery (taking as many of the tumors out as possible) with hyperthermic intraperitoneal chemotherapy (HIPEC). Again, I would find a doctor who has done this surgery many, many times to discuss your wife's situation. As far as the insurance situation goes, I would find the doctor you want to see first and then contact his office about whether your insurance company is going to cover whatever treatment plan is needed. I think investigating this first before a clinical trial makes the most sense. Feel free to contact me offlist at aclay@ccalliance.org if I can do anything else for you. Andrea, Information Specialist, Colon Cancer Alliance

    thank you! I am calling ASAP
  • vinny3
    vinny3 Member Posts: 928 Member
    #5
    I am confused. Your wife had gall bladder surgery in July but nothing was noticed then about possible peritoneal carcinomatois (cancer spots in the abdominal cavity). Usually they try to look around while they are in there. Was it laparoscopic? On what basis are they determining that it is in 2 lymph nodes and in the peritoneal lining? It may be but it just seems unclear. The CEA is not a real accurate marker but it seems it might be a little elevated if she has cancer and it has spread. I would recommend getting copies of the reports of all the tests, including the blood tests and scans. Even if you are not able to fully interpret them they are essential when getting another opinion and if you have them you don't have to depend upon your doctor's office making sure they have sent all the reports. In the case of the scans another consultant would usually want to see the actual pictures as well so you would need to pick those up prior to seeing someone else.

    I am hopeful that the cancer has not progressed as far as they have indicated. But it is helpful to know that there are major cancer centers like MD Anderson, Sloan-Ketterling, Mayo Clinic and others who have experience with all degrees of cancer, and procedures such as the Sugarbaker procedure described in the other posts.

    ****
  • Larryv2.0
    Larryv2.0 Member Posts: 10
    #6
    vinny3 said:

    I am confused. Your wife had gall bladder surgery in July but nothing was noticed then about possible peritoneal carcinomatois (cancer spots in the abdominal cavity). Usually they try to look around while they are in there. Was it laparoscopic? On what basis are they determining that it is in 2 lymph nodes and in the peritoneal lining? It may be but it just seems unclear. The CEA is not a real accurate marker but it seems it might be a little elevated if she has cancer and it has spread. I would recommend getting copies of the reports of all the tests, including the blood tests and scans. Even if you are not able to fully interpret them they are essential when getting another opinion and if you have them you don't have to depend upon your doctor's office making sure they have sent all the reports. In the case of the scans another consultant would usually want to see the actual pictures as well so you would need to pick those up prior to seeing someone else.

    I am hopeful that the cancer has not progressed as far as they have indicated. But it is helpful to know that there are major cancer centers like MD Anderson, Sloan-Ketterling, Mayo Clinic and others who have experience with all degrees of cancer, and procedures such as the Sugarbaker procedure described in the other posts.

    ****

    The gal bladder surgery was done laparoscopicly.

    The pathology report stated that out of 16 lymph nodes tested, there was cancer in 2.

    We have a folder that we keep copies of the pathology report and PET/CT scans etc.
  • vinny3
    vinny3 Member Posts: 928 Member
    #7
    Larryv2.0 said:

    The gal bladder surgery was done laparoscopicly.

    The pathology report stated that out of 16 lymph nodes tested, there was cancer in 2.

    We have a folder that we keep copies of the pathology report and PET/CT scans etc.

    Thanks. I had been confused as from your note I thought she still hadn't had her colon surgery. But it appears she did. What type of surgery did she have and what location was the primary colon cancer in? I assume at that surgery they noted some metastatic implants (spots of cancer) in the peritoneal cavity (outside of the bowel and other organs). If that is the case you may want to go ahead and call the number for Dr. Sugarbaker and see if there is someone he has trained in your general area or consider going to see him.

    ****
  • themis01
    themis01 Member Posts: 167
    #8
    I am sorry to hear about your wife. My mom had the peritoneal spread. She had the Sugarbaker protocol by Dr. Sugarbaker at Washington Hospital Center. Based on your wife's age she would be a good candidate for this procedure at one of the hospitals that does it. This procedure has saved many lives. I hope this helps.
    Erika
  • sistertheresa
    sistertheresa Member Posts: 1
    #9
    CanadaSue said:

    Hi Larry,

    My husband (49) was dx in Jan 06 with stage 4 Colon Cancer. He had his first surgery to remove the tumor, they found that it had spread to the peritoneum wall (3 nodes out of 19). We were at that time refered to a Oncology doctor some 2 hundred miles from where we live (Dr. W. Temple out of the foothills hospital in Calgary). My husband was a good candidate for the proceedure that you talked about earlier, they call it the "Sugarbaker Protocol" here in Canada. I asked the question almost 2 years ago , and no one had heard of this surgery - I believe this surgery saved my husband as he is currently NED.

    The surgery that my husband had lasted about 9 hours. As I am sure this is standard procedure (depending on what they find) I will tell you what they did to my hubby.

    They opened him up and had to cut away alot of the wall (lining - this is what holds all your organs in place) because there were so many seedlings attached to it. They told us they would have to remove any affected organs, but they found they only had to remove his gallbladder and appendix. They then fill the cavity with hot chemo heated to approximately 115 degrees, this is swished around inside for 90 mintues, they then suction it out and close you up. They insert 4 tubes (with suction cups) - ( 2 under the rib cage and 2 lower down. They then fill the abdomine with this hot chemo and leave it in you for 23 hours, they they suction it out and leave you dry for 1 hour, then fill you up again. This went on for 5 days straight. For the first day my hubby said he felt lots of pressure from the chemo, but I am sure it also had alot to do with being swallen from the surgery as well. He also came out of the surgery with a permenet illostomy, as they had to remove pretty much all of the colon (a small price to pay for your life).

    I don't know whether my hubby would be here today if not for that surgery. I highly recommend it.

    ((((Hugs))))

    Sue

    Hope is a blessing and God is good! Thank you Sue for sharing your story.

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