Hello Mike, I enjoyed reading your web page. I am 29 years old and it is not over yet. I was blessed to have 25 healthy years. At age 4 my bilateral Retinoblastoma was cured by having my left eye removed and my right treated with radiation.

As a child I was an over-achiever in school, and although I had a cataract which left me legally blind (whatever that means), I was not transferred to a school for the blind because I was at the top of my class.

What I was unaware of, and what I am afraid the doctors I was seeing in 1996 were unaware of, is that secondary brain and facial tumors are common with Retinoblastoma survivors. It is also reported that those who received radiation therapy are even more susceptible. The head of the radiation dept. at University of Michigan Medical Center took time from his day to visit my hospital room and own up to his department's share of responsibility for my illness. My childhood surgeon followed up for 15-20 years and then said everything is alright and I do not need to continue seeing him. They have only known about these tumors for 5 years and unfortunately I was unaware and nobody notified me to be closely followed.

My tumor was a very rare high grade Osteogenic Sarcoma. It was completely removed on Jan. 3, 97, However there is a good chance that some microscopic cells remained, they don't know, but if so I currently have another tumor forming and growing. The best coarse fo treatment is chemotherapy which I will begin soon. I also plan to combine a holistic approach as well. Most importantly I am keeping a positive attitude and a keen sense of humor. The minds healing abilities are very powerful and now is not a good time for fear or depression.

Obviously there is nothing I can do about what has happened to me. I must do what it takes to be cured. What I would like to do is find a way to get awareness to other adult survivors about this very real threat. My tumor was not found early and was very well developed when it was removed. I nearly died because my doctors could not figure out what was wrong until it was an emergency room situation. There is no way to stop this from happening, but advanced knowledge and early detection could prevent other adult survivors from coming so close to death and this is what I wish for.

My thoughts and prayers go out to you and your family. If you have any comments or questions please respond.

Sends some Email. to Michael Cavanaugh

Thanks for your quick response. I have only been on line for a few days and I have seen a lot of good things and I have seen a lot of garbage. It's good to know that there are people like yourself using the web for such a positive and educational purpose. I know some of these stories can be heartbreaking, but the more you know the better. Please feel free to post my letter. I should have my own web site up soon and I plan to devote a large portion of it to my experiences with cancer.

In answer to your questions, "How do the doctors recommend a person with Retinoblastoma follow up for early detection of these types of tumors?" it seems that the best manner to detect these tumors is through ct scans and especially MRI's. These are the tests that I received. Your choice of doctor is ultimately the most important decision. It sounds as if you are very knowledgeable regarding doctors. I am very fortunate to have the best doctors U of M has to offer. The reason I say this, is because an otolaryngolgist that I saw a few months back ordered a ct scan, saw the same results that the scans showed at U of M and down played it to be a bacterial polyp, nothing to worry about.

All of the doctors who treated me seemed to feel very strongly that radiation played a large role in my secondary tumor. Do keep in mind that radiation therapy in 1972 and what they do now is very different, and my head was subjected to high levels or radiation. They have come a long way to minimize the amount of exposure a person receives.

Again please post the letter! I will give you the address to my web site once it is up, and give you an update when my chemotherapy is complete.

Sends some Email. to Michael Cavanaugh