I have an appointment as of last week to see a radiation oncologist. It will be on December 23 or as I like to call it Christmas Eve, Eve. I called back and talked to the office. I was processing thoughts of the consult I will be having with the doctor.  I am thinking do I really need to see a radiation oncologist. The margins were clear as of the last surgery. Would I want to radiate normal cells, since the amount they took out; nothing was found. Also, since the doctor doesn’t treat sarcoma patients on a normal basis. That is an assumption I have because sarcomas are rare, and this is not a sarcoma specialist. Also, to be considered to be a hospital that is a sarcoma center, it must meet certain criteria.  Unfortunately UMC is not one. But that doesn’t mean the doctors are not qualified to treat a patient with one.

I have to weigh my options. This goes back to having a pheochromocytoma, and applies to this as well. I know of too many stories of patients dealing with inadequate treatment options with pheochromocytoma. So, I have to be careful. I know of patients with sarcomas, that are in a similar boat. Since, I am not a sarcoma center with a team of specialists. I have to be my own advocate. No offense to any doctors. They would do the same thing.

I don’t want any unnecessary radiation. I rather save that in case there is a recurrence and it is better to do that then.  I think there is a certain point where you cannot radiate that portion again. I would hate to have to go through a few weeks of daily treatment that was not necessary. Once again this is where second opinions, do wonders. I ignored getting a second opinion about having the next surgery. I just went with it, and decided it was the best option. Otherwise take time off from work. Then I might have to wait two to three weeks to get into another appointment at a distant hospital.  Spend money on flight and hotel plus additional doctors bills. Then with all the time I spent going through the time consuming process(The tumor was removed, so since it is not there. My options are different than if I presently had it). So, if it was diagnosed at the original biopsy correctly, I would have considered a better location. But I digress I wanted to stay local. Traveling takes it toll, and the continued process for additional appointments. After all that, if additional surgery was the best option. I just wasted the time for a date to be scheduled. Thus I have to wait longer.

So, to radiate or not radiate. I choose not radiate. My opinion might change once the doctor tells me otherwise. The risks, side effects, and the task of going through treatment, can take a toll on a person. That is one reason. The other reason if it is even necessary with the particular sarcoma that I had removed.

Another thing, I do need to adequately prepare for this consult. This is where I need to have all the questions prepared beforehand for the visit. If treatment is necessary, the next appointment is to setup all of this up. All this right before Christmas. I could wait. But I rather get this all out of the way now. Because once the burden is lifted about the appointment. I know I will feel much better.

In conclusion, It will affect at what time I leave for Christmas break. I just rather know and be able to enjoy the time off. This was quite a long post to wade through, if you read this far. But you have to consider your own health. Be your own advocate  when you are given options. There are others out there. So, choose wisely. You will be glad you did. For now I will roll with the ones I have now.




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