CancerCompass message board discussion started by Patti I. on 9/5/2001 http://www.cancercompass.com/message-board/message/all,278,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ When I was a baby, my Dad died of a rare form of cancer, the physicians involved have since died, and medical records have been destroyed. Is there anyone out there that may be able to help me to track down the info I am looking for??? Patti I. Wed, 05 Sep 2001 00:00:00 GMT To Patti, In reading your message, I could not tell if your father died before or after he was told that he had a rare cancer. I am being treated for a rare blood disorder called polycythemia vera which is considered a pre-leukemic blood disorder, very rare and hard to keep under control. Could this be what your father had? shirley p. Fri, 07 Sep 2001 00:00:00 GMT Patti: After rechecking with Medical Records, it appears that you may need to track down the nearest cancer registry (a service found in a large hospital) to the medical facility where your father died. This service tracks by diagnosis all cancer deaths. You should contact the city government or the medical facility itself to locate a registry. If you still don't find what you are looking for, try contacting Noreen at (847)872-6459. She is the cancer registrar for our facility and she may be able to give you another search avenue. Good luck, Kim Cancercompass Fri, 07 Sep 2001 00:00:00 GMT Patti: After rechecking with Medical Records, it appears that you may need to track down the nearest cancer registry (a service found in a large hospital) to the medical facility where your father died. This service tracks by diagnosis all cancer deaths. You should contact the city government or the medical facility itself to locate a registry. If you still don't find what you are looking for, try contacting Noreen at (847)872-6459. She is the cancer registrar for our facility and she may be able to give you another search avenue. Good luck, Kim Cancercompass Wed, 12 Sep 2001 00:00:00 GMT I originally started with cervical cancer then this large cell apparently broke off and went into my portal vein. It decided to stop and spread in my liver. I am in stage 4 and receiving chemo. I am looking for someone else who may have had or currently has this situation. I am told this is rare, so I am looking for information. Apparently my doctors have only seen one, maybe two cases, like mine. Please respond. stephanie r. Sat, 04 May 2002 00:00:00 GMT My Name is Darcie, I have Protein S Defiency, it is a clotting disorder. I've been told that I could develop forms of blood cancer. I was diagnosed in 2000. In 2003 I was dianosed with a Pheochromcytoma yet another rare condition. It is a tumor of the adrenal glands, but mine was located on the bottom of my aortic artery and not the kidney glands. I have had the surgery to remove the tumor and also another tumor located behind it called a paraganglioma. With the grace of God all turned to be non cancer but yearly tests and scans for the next 5 years until the will say you re cured. Not a lot of information out there on either of the two or even if the two could be related. Darcia Wed, 19 Jan 2005 00:00:00 GMT Dear Darcie S, I also have Protein S Defiency along with my daughter and several other members of my family. I have had it for 16 yrs.now. I was just wondering how did you find out that this blood disease could lead to cancer of the blood and how long ago did you find out it could lead to cancer? My doctor has never told me anything about this. Now I am a little scared because cancer also runs in my family also. Tammy s. Sat, 02 Apr 2005 00:00:00 GMT My mom has such a rare cancer, only 1-3 people per million get this. It is Adrenocortical Carcinoma. It is a tumor of the Adrenal Gland. She was diagnosed in 2004, had surgery, and then again in 2005 and now 2006. She is recovering right now. We see the oncologist tomorrow. There isn't too much out there, beside my mom has crohn's disease which limits her, and she is a young 70. Mitotane has been suggested, has anyone taken this. They want to give her Doxil but too many harsh side effects she can't afford to get sick and activate her crohn's. I feel like I am living a nightmare. If anyone out has ever had this cancer I would love to hear from you maybe there is something we haven't looked at. God bless to all, and stay strong. Marie Faccia Bella Mon, 24 Jul 2006 00:00:00 GMT Dear Marie, I hope your mom is doing well. It can not be easy for her with crohn's as well as the cancer. I have just finished with my first bout of surgery. I had a 29cm mass from the adrenal gland. It surrounded my kidney, and they had to take it, my gall bladder with stone, a scrapping on my liver, and they restructured my vena cava. Now I face chemo, but my oncologist doesn't seem to be in a rush to start as there is no protocol for this type of cancer. I wish I knew more and had the ability to ask the right questions. Have you had any luck with nutritional aids? I do best emotionally with prayers. I hope your mom is getting tons and tons of them. This must be very hard on you and your family. I know the other side too, as my mom died of Signet ring cell cancer 2 years ago and my son in law has Salivary gland cancer. I guess I just wanted you to know you are not alone, and bless you and your family, susan Susanlyn Tue, 22 Aug 2006 00:00:00 GMT Are you concerned that you may end up with the same? Have you thought about prevention in watching your diet and adding supplements to help the body fight off free-radicals? We take Reliv supplements as both sides of our family have had major problems including cancers. My husband and I do not want these conditions for ourselves or our children. Good luck on finding your information on your father, but meanwhile make sure you take care of yourself.Be BlessedDe Potogoldde Sat, 07 Apr 2007 00:00:00 GMT Updating those who may be interested.  I have been diagnosed with adrenalcortical cancer, last year had surgery to remove 29cm tumor, and other things, was cancer free till Dec 2006 when 3 spots were found, 2 on lung and 1 semi flat tennis ball size in adomen.  In February went to NHI in Bethesada, as they offer a expermential protocol.   Didn't exactly qualify but was given a chemo program I could handle close to home with my doctors. At that time the tumors had increased in size and have another on liver. After two cycles I face scans tomorrow to see if anything is happening.  If anyone has questions I will be glad to reply, or just need a hug, I send them out to you.   God bless you.  susan Susanlyn Tue, 15 May 2007 00:00:00 GMT  On 8/22/2006 Susanlyn wrote:Dear Marie, I hope your mom is doing well. It can not be easy for her with crohn's as well as the cancer. I have just finished with my first bout of surgery. I had a 29cm mass from the adrenal gland. It surrounded my kidney, and they had to take it, my gall bladder with stone, a scrapping on my liver, and they restructured my vena cava. Now I face chemo, but my oncologist doesn't seem to be in a rush to start as there is no protocol for this type of cancer. I wish I knew more and had the ability to ask the right questions. Have you had any luck with nutritional aids? I do best emotionally with prayers. I hope your mom is getting tons and tons of them. This must be very hard on you and your family. I know the other side too, as my mom died of Signet ring cell cancer 2 years ago and my son in law has Salivary gland cancer. I guess I just wanted you to know you are not alone, and bless you and your family, susanDear Susan,Thank you for getting back to me. This is the first time I got to look at it, my mom passed away 12/23/06.  She was a fighter, it was fast, she had little pain.  Mom couldn't do the treatments, the side effects would have been worse because of the crohns. She wanted quality of life and that is what she got.  This cancer sucks, I did find a web page T-GENE. Look into it. If you can't find the site please let me know, I will find it for you. Mom's last onoclogist tried thalidamide, but it was too late for her because it was to far gone the cancer,  but he has a patient on it and it slowed it down, also Sutent was another medication he was looking at. The problem is these medicatins are not for adreanal cancer, so insurances make it hard to get them.  We fought and did get the thalidamide she used it for a short time. Having crohns limited her, but for you it may not, don't give up try something, the side effects may not be bad. Please keep in touch and thank you for your reply.  I will prayer for you, God Bless.  Marie   Faccia Bella Thu, 09 Aug 2007 00:00:00 GMT Hi there,I am living with my family in Ireland. My wife has cancer and the primary was never found. She started with a pain in her lower back, left side and sometimes the pain moved under her chest area. To make a long story short she was operated on on the 8th May and the surgeon said to me when he came out of the theatre "sorry the news is not good". He said she had a large tumor sitting on the pancreas, left kidney, adrenal gland, spleen, aorta, and the bone. He said how he had samples sent off to the lab during the operation and that the lymph of the bowel was also malignant. He said he could do no more only to close her up again. He said the cancer was very aggressive and invasive. At first my wife was diagnosed with adrenal cortex neoplasm. Then there was a difference of opinion between pathologists. Two pathologists thought it was renal cancer and two thought it was adrenal cancer.  I had slides sent to an adrenal clinic in Michigan and to the National Cancer Institute in Maryland. The diagnosis was that it was not adrenal. The cancer was diagnosed as CUP, cancer of unknown primary. Again I heard the word "sorry" coming from both institutes. One pathologist said "Get your support system in place", the other said "Your wife has an incurable cancer". My wife at the moment is very low and has lost all her weight. She has been in bed for three months and has no energy. She has stopped eating but is still taking alternative medicine, drops and spring water. I feel now that she needs something to kill those cancer cells. My question is has anybody used cessium chloride or anything that might help me save my wife. We have a lot of faith and a lot of prayers are been said. Looking for divine inspiration. Packyjoe Sat, 20 Oct 2007 00:00:00 GMT  On 9/5/2001 Patti I. wrote:When I was a baby, my Dad died of a rare form of cancer, the physicians involved have since died, and medical records have been destroyed. Is there anyone out there that may be able to help me to track down the info I am looking for???A copy of his death certificate might indicate the form of cancer that caused his death. Trishpm Wed, 16 Jan 2008 00:00:00 GMT Darcy,I too have protein c and protein s deficiency. I was recently diagnosed with colon cancer but I have never heard of a link between the blood disorder and cancer. Where can I find this information? I am very curious to see if there is any link. Please let me know.Thanks, Sheryl Super01Mom Mon, 26 May 2008 00:00:00 GMT