Is radiation a good idea

dfs56

Hi - I had a recurrence of an Olfactory Neuroblastoma removed on May 3rd.  My first surgery was Sept 2014 and was misdiagnosed.  It was later

confirmed to be ONB.  The results of my mri from 1 week ago, shows no cancer.  The question is should I have radiation at this time or wait and have it if another tumor develops.  Will having radiation give me a better chance of ONB not returning.  Also,  can radiation be used many times throughout our lifetimes?  My Dr. doesn't think I need radiation or chemo, but is sending me to an oncologist for a second opinion.  Thank you.

stevenpepe

Radiation can be the best

Radiation can be the best option to prevent reoccurrence, even though it causes other side effects that can last a lifetime. I would take your doctor's advice. Your body has limits as to how much radiation it can handle. Generally, they don't radiate the same location twice.

Barbaraek

A second opinion is always helpful

If possible it's great if your case can be heard by a tumor board at a comprehensive cancer center. A multidisciplinary team looks at the case from different perspectives and comes to a consensus about the best treatment recommendations.

Barbara

wmc

I would go with your doctor, no to radiation.

With what I have seen on here and researched there is a maximum total number with  radiation, but I do not know the number.

Bill

Ladylacy

Radiation

While my husband's cancer was different that yours, he did go thru radiation and chemo before surgery.  Radiation did a job on his throat that no one knew about until they did surgery to remove his larynx.  His cancer had not spread anywhere at that time it was first diagnosed.  My regret is that we didn't get a second opinion from a head and neck specialist before treatment started because I feel they would have done surgery first and no radiation.  We were referred to one after they discovered the tumor had returned.  The specialist said it never went away and that the radiation and chemo had no effect on the tumor.  He had so much throat problems from the radiation that eating was almost impossible for him. 

Then a year of being NED after surgery (no further treatment in that year) the specialist found a new tumor at the cervical of his esophagus which was considered a rare spot.  Due to radiation and surgery and the fact that the tumor was basically in the same spot, surgery couldn't be done.  More radiation (in basically the same spot as the first round of radiation and a possibility of the cartoid artery bursting) and chemo on a small tumor with no spread.  Only NED for about 4-6 months and then we found out it was back at the second spot and spread to his right lung.  I have always wondered if the first radiation didn't cause the second primary.  The only thing offered after that was chemo which my husband had already told me he wouldn't do anything more if the cancer returned. 

We were told at the very beginning that radiation on the head and neck was the worse and that many didn't complete it due to the side effects.  And for my husband he was one that radiation did a lot of damage to his throat.  Just remember everyone is different in how they react to treatment.  I had an Aunt who died from esophageal cancer and radiation did a job on her also. 

Wishing you peace and comfort

Bart T

BOTH EYES WIDE OPEN

With some people, the need for radiation is clear, for others it’s something of an option. As any of us who have been through the treatment will tell you, the treatment itself is hard on your body and your spirit, and the side effects last a lifetime. The side effects seem to run the range from minor annoyances to life altering conditions, and either way, your life after radiation will be different, but not in a good way.

If you do need the radiation, get it, but if there is an alternative approach such as wait and see, make your decision with both eyes wide open. Take your doctor’s advice, and seek second or third opinions. Weigh your doctor’s words carefully. Doctors use what’s in their tool box, and if you go to a radiation specialist, radiation is their tool. In my case, I had the radiation and am four years out with no cancer. In terms of activities, I’m back to 100%, but my quality of life took a hit. I have a whole host of issues relating to my mouth and can’t enjoy many foods which I used to love. I will forever wonder if radiation was my best bet. Yet despite that, if I had not had had the radiation and the cancer recurred and killed me, I’ probably also spend a lot of time wondering if I made the right decision.

 I wish you the best. It probably will be the most important decision of your life, so do your research, take your time, get guidance from others, and in the end have confidence in your decision. We all wish you the best.

Barbaraek

Bart T said:

BOTH EYES WIDE OPEN

With some people, the need for radiation is clear, for others it’s something of an option. As any of us who have been through the treatment will tell you, the treatment itself is hard on your body and your spirit, and the side effects last a lifetime. The side effects seem to run the range from minor annoyances to life altering conditions, and either way, your life after radiation will be different, but not in a good way.

If you do need the radiation, get it, but if there is an alternative approach such as wait and see, make your decision with both eyes wide open. Take your doctor’s advice, and seek second or third opinions. Weigh your doctor’s words carefully. Doctors use what’s in their tool box, and if you go to a radiation specialist, radiation is their tool. In my case, I had the radiation and am four years out with no cancer. In terms of activities, I’m back to 100%, but my quality of life took a hit. I have a whole host of issues relating to my mouth and can’t enjoy many foods which I used to love. I will forever wonder if radiation was my best bet. Yet despite that, if I had not had had the radiation and the cancer recurred and killed me, I’ probably also spend a lot of time wondering if I made the right decision.

 I wish you the best. It probably will be the most important decision of your life, so do your research, take your time, get guidance from others, and in the end have confidence in your decision. We all wish you the best.

Well said Bart

you sum it up well. In our case radiation was a must since surgery was not an option. The important thing is to make peace with your decision.

Barbara

phrannie51

I would follow my Dr.'s lead on this....

I don't know if there is a lifetime limit on rads....but anywhere that has had radiation, cannot re-radiated without big time damage....most RO's won't do it.  I had a recurrence in October, 2015....this cancer was right below the radiation line, so I was able to get it.  Had it been within the rad line from before I would have been SOL.

p