Newly Diagnosed

My 22 yr. old son has been recently diagnosed with atypical carcinoid. The doctor just called to give us the diagnosis. There are no treatment plans yet, which causes so much anxiety, but I try to remember that my hope is in the Lord, and He makes no mistakes.

 The tumor is 8cm present in his lung, and there is also another in his liver. I believe there may be a possible tumor in his colon as he feels so much pain in that area, and the colonoscopy was not complete since the camera could not pass through that area... I am concerned since he has no insurance. We have applied for SSI, but I am not sure how much they will cover with this diagnosis. I'm wondering in the financial aspect of treatment, if anyone has gone through treating atypical carcinoid without insurance? My daughter is helping me research organizations, grants, etc. in order to prepare for treatment.

I am not sure where you live but I would recommend you do alot of research.  My husband has carcinoid cancer - primary in the small intestines and spread to the liver before he was diagnosed.  We were told locally that he was not a candidate for surgery and they were immediately recommeding high dose radiation treatment.  We chose to research before jumping into a treatment.  We live in the Houston area and found a group of doctors in Kenner Louisianna.  He had surgery in August - removed the primary tumor and the largest tumor in the liver.  He is scheduled for surgery again in March and the doctors are telling us he will be diease free after this next surgery... Just be aware that many doctors take a wait and see approach - your son is very young - I recommend be as aggressive as you can.  Has he been started on Sandostatin (Octreotide) injections yet?  This is usually one of the first treatments started. The doctors we use are:  Dr. Eugene Woltering (Oncologist) and Dr. Philip Boudreaux (surgeon) .  You can find their information on the carcinoid awareness website - www.carcinoid.org.   There are a couple other well known carcinoid doctors on this website.  Good luck - let me know if I can be of any other help!!  My prayers are with you!!

 

On 11/28/2007 Live4him wrote:

I am not sure where you live but I would recommend you do alot of research.  My husband has carcinoid cancer - primary in the small intestines and spread to the liver before he was diagnosed.  We were told locally that he was not a candidate for surgery and they were immediately recommeding high dose radiation treatment.  We chose to research before jumping into a treatment.  We live in the Houston area and found a group of doctors in Kenner Louisianna.  He had surgery in August - removed the primary tumor and the largest tumor in the liver.  He is scheduled for surgery again in March and the doctors are telling us he will be diease free after this next surgery... Just be aware that many doctors take a wait and see approach - your son is very young - I recommend be as aggressive as you can.  Has he been started on Sandostatin (Octreotide) injections yet?  This is usually one of the first treatments started. The doctors we use are:  Dr. Eugene Woltering (Oncologist) and Dr. Philip Boudreaux (surgeon) .  You can find their information on the carcinoid awareness website - www.carcinoid.org.   There are a couple other well known carcinoid doctors on this website.  Good luck - let me know if I can be of any other help!!  My prayers are with you!!

 

Thank you very much for your reply. We live in Bergenfield, NJ. My son received his first chemo therapy of Etoposide and Cisplatin at Sloan-Memorial Kettering Cancer Center in New York. His oncologist at Sloan told me that they use the same chemotherapy regimen for small cell lung cancer in treating atypical carcinoid of the lungs. He has not started any octreotide treatment but I am going to ask his oncologist this Wednesday at the regional cancer center in NJ who is continuing his chemotherapy locally. According to the oncologist at Sloan, my son is not a candidate for surgery because the cancer has also spread from the lungs to the liver.

Another thing that complicates my son's situation is his lack of medical coverage. He has applied for SSI but was denied disability benefits for lack of credits. I applied for charity care at Sloan Memorial and at the regional cancer center in NJ. I have also asked for help from our state's board of social services. I don't know if you have heard of cancercare foundation, but I also applied for financial assitance there. I am able to work when my son feels "well" and somebody can stay with him. On other days, I am home with him which means no paycheck coming in. But it could be worse. I firmly believe in God's enduring mercy and faithfulness. So far, He has provided for ALL things that my son needed.

Again, thank you for sharing your experience. I  will pray for continued healing of your husband.