Anyone decline chemo and rad treatment?

Hondo

Skiffin16 said:

Radiation Related
Not at all to dismiss your ordeal....but, how do they actually know that all of the effects that you are having were caused by the radiation?

I know once I reached 40, I started having differeing issues which were just age or heriditarily related. Now that I'm 57, I have even more issues, but those aren't that uncommon in persons my age with no cancer or radiation in their backgrounds.

I know that radiation to the H&N can cause Thyroid damage, but usually that shows up within the first few years.

I'm no medical professional by any means, and I'm not trying to second guess any of you or your MD's concerns....just curious what or how the effects were determined to be related to the radiation you had 15 years ago?

Thoughts & Prayers,
John

Are all Doctors the same

Every time I go to see a doctor they always tell me I have radiation side affects. I know a lot of what is going on with me is due to the radiation, but not all of it. I am to a point now when I go to see a new doctor on there form when it ask if you ever had cancer I put NO.

Got to learn to work the system I guess
Hondo

palmyrafan

Skiffin16 said:

Radiation Related
Not at all to dismiss your ordeal....but, how do they actually know that all of the effects that you are having were caused by the radiation?

I know once I reached 40, I started having differeing issues which were just age or heriditarily related. Now that I'm 57, I have even more issues, but those aren't that uncommon in persons my age with no cancer or radiation in their backgrounds.

I know that radiation to the H&N can cause Thyroid damage, but usually that shows up within the first few years.

I'm no medical professional by any means, and I'm not trying to second guess any of you or your MD's concerns....just curious what or how the effects were determined to be related to the radiation you had 15 years ago?

Thoughts & Prayers,
John

Delayed Radiation Effects
I was treated at the Cleveland Clinic and Dr. Suh told us then that it was not uncommon for radiation effects to take years to show up. He said that depending on the location of the radiation, once we age, it could affect us differently. He told us that as I aged, it would probably show up first with the adrenals (check) and the thyroid (check). He also predicted that I would undergo early menopause, which I did. I was only 34 at the time of radiation, younger than most of their patients for the type of tumors I have. He said that the amount of radiation I had, the location, my age, etc. all played a factor in putting off the long-term side effects. He indicated it would take about 15 years for the first side effects to show up and he was spot-on about that. I had radiation in January-February of 1996 and my first problems showed up in January of this year. We had totally forgotten what he said until we talked to him again. He remembered me and he also reminded us of what he had said.

But again, it depends on the location of the tumors and radiation, your age, your overall health, etc. My issues are in direct correlation to the radiation that I had. The doctors have stated that the issues I have now should not have shown up "due to older age" for another 15 or 20 years.

Skiffin16

palmyrafan said:

Delayed Radiation Effects
I was treated at the Cleveland Clinic and Dr. Suh told us then that it was not uncommon for radiation effects to take years to show up. He said that depending on the location of the radiation, once we age, it could affect us differently. He told us that as I aged, it would probably show up first with the adrenals (check) and the thyroid (check). He also predicted that I would undergo early menopause, which I did. I was only 34 at the time of radiation, younger than most of their patients for the type of tumors I have. He said that the amount of radiation I had, the location, my age, etc. all played a factor in putting off the long-term side effects. He indicated it would take about 15 years for the first side effects to show up and he was spot-on about that. I had radiation in January-February of 1996 and my first problems showed up in January of this year. We had totally forgotten what he said until we talked to him again. He remembered me and he also reminded us of what he had said.

But again, it depends on the location of the tumors and radiation, your age, your overall health, etc. My issues are in direct correlation to the radiation that I had. The doctors have stated that the issues I have now should not have shown up "due to older age" for another 15 or 20 years.

Still Having a Hard Time Buying This
Again, I'm not in anyway making light of you, your MD or the situation....

But of everything I have researched, the MD's that I have communicated with, or even here on the internet, I have found nothing to support this.

I'm not sure of your specifics, and your specific type of radiation or treatment. Everyone is different and react differently. But to have the ability to predict that someone will have side effects exactly 15 years in the future to the month...it's just hard for me to buy.

Again, I'm very sorry for your health problems and everything you have and are going through. Like I said,I'm no MD by any means,so I accept that I could be totally off.

But if this were common and so precise and with such regularity, I can't help but to believe there would be a lot of information out there. Not to mention that if it were such a high probability of getting these various ailments later in life, I presume that would lead to developing different protoculs (which it may of have depending on your specific type of raditation. IMRT and other technology beginning current,but around at the time that you had radiation also.

Call it bad luck, age, hereditary, coincidense or whatever...I just don't accept it that this is all related to the radiation. Unless your entire upper body was exposed during radiation treatment.

Please do not take this personal, and I do appreciate your comments, experience and history. Obviously someone that is a 15+ year survivor has a lot to offer.

Very Respectfully,
John

palmyrafan

Skiffin16 said:

Still Having a Hard Time Buying This
Again, I'm not in anyway making light of you, your MD or the situation....

But of everything I have researched, the MD's that I have communicated with, or even here on the internet, I have found nothing to support this.

I'm not sure of your specifics, and your specific type of radiation or treatment. Everyone is different and react differently. But to have the ability to predict that someone will have side effects exactly 15 years in the future to the month...it's just hard for me to buy.

Again, I'm very sorry for your health problems and everything you have and are going through. Like I said,I'm no MD by any means,so I accept that I could be totally off.

But if this were common and so precise and with such regularity, I can't help but to believe there would be a lot of information out there. Not to mention that if it were such a high probability of getting these various ailments later in life, I presume that would lead to developing different protoculs (which it may of have depending on your specific type of raditation. IMRT and other technology beginning current,but around at the time that you had radiation also.

Call it bad luck, age, hereditary, coincidense or whatever...I just don't accept it that this is all related to the radiation. Unless your entire upper body was exposed during radiation treatment.

Please do not take this personal, and I do appreciate your comments, experience and history. Obviously someone that is a 15+ year survivor has a lot to offer.

Very Respectfully,
John

Side Effects
Dr. Suh did not predict the year and month. What he said was, it is not uncommon for people who had the same type of radiation that I had (traditional, face mask, screw your face to the table type - before the modern version) to have delayed side effects. He said it could take upwards of 10-15 years for many of the more serious side effects to show up.

Dr. Suh is more than competent when it comes to what he does and knows. He wasn't fresh out of med school or an intern. In 1996 he was already in charge of many aspects of the radiation department and had been around the block a few times.

As for the radiation itself? I had it at my carotid artery, left optic nerve, skull base, and at various points around my skull (including the hypothalmus which was almost destroyed).

I maxed out on radiation around my optic nerve. I need more surgery / radiation in that area, including the optic nerve chiasm but I have maxed out on radiation at those locations. In order for the radiation to be effective there, I would require too high a dose. I stand a 60%-70% of losing my vision if I have more radiation in that location.

I don't take offense at people who don't understand what is going on with. The only people I take offense with are the ones who tell me that my doctors didn't know what they were doing or that they wouldn't have done the surgery and/or radiation the way it was done. Dr. Joung Lee (neurosurgeon, Cleveland Clinic), Dr. Suh (Radiation Oncologist, Cleveland Clinic), and Dr. Pierre LaVertu (ENT, Cleveland Clinic, now of Case Western University) all saved my life.

I also understand that for the newer people who have been diagnosed, it is hard to believe sometimes what the doctors tell you. That is why I can't reiterate enough about getting more than 1 opinion when it comes to something so vital, including radiation. Which we did. Trust me, no one was more surprised than my husband and I when all this started showing up in early September and came to a head in January with 2 hospitalizations.