Rare Forms Of Cancer

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???

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?

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

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

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.

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.

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.

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

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

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 Blessed

De