20 radiations

So, I finally have 20 radiations under my belt... and now my skin is burned, my muscles start to hurt, and my fatigue is back to the level of my chemo days. 

I was given numerous creams, pads, ibuprofen --- and the question is always there -- is it worth it? Why do I have to have 30 radiations, even though I had a complete response (no cancer cells were found after chemo and operation)? 

I ask: If I didn't get a complete response, how many sessions would be required? Still 30.

Per Dr. Google: By what percentage does radiation reduce recurrence of breast cancer?

"Radiation does not appear to prolong survival. Even though it does significantly decrease the chance of the tumor coming back, after 10 years it was only a 10 percent recurrence rate without radiation. With radiation, it would reduce the recurrence rate to about 2 percent."

Finally, I met with my doctor and managed to get more specifics -- 24 sessions are treating my clavicle area (as they can't operate here) and the breast, and the last 6 are just the breast.  So I am thinking of doing another 4 and then being done with this, stopping at 24 total instead of 30.

Half-way point

I am at the half-way point in my radiation treatment --- the 15th session out of the required 30! 

Most people in my radiation wait room get to celebrate and leave around this mark (average treatments are 12 to 15 sessions), so now I am starting to see new faces and I am becoming the "old-timer" in the group.

I have tried to figure out why I am getting double the average sessions considering that I had a "complete response" to the chemotherapy, but the only answer I got was -- this is the protocol based on the studies for triple negative breast cancer. And, yes, there is currently an ongoing study to figure out if patients with complete response actually need less radiation instead of a lot more -- but as it is ongoing, we are still following known protocols.

Scheduling tests

It seems that according to the protocol there is a litany of standard tests that are done prior to finalizing the specific treatment from MRI, to bone scan to CT scan.

It turns out, I have to be the one calling to set up MRI and CT (originally I thought that the nurse would be scheduling them up, same as blood work or genetic test), but it wasn't explained up front. So I called back the hospital on Tuesday to figure out if there is anything else required from me and was asked, by the way, have you scheduled your scans?

An hour on the phone, if not more and I was still unable to schedule anything. Had to drop the call as Max was calling from school and then decided in frustration to think about it tomorrow.

That turned out a good thing. An hour later, probably because I dropped the call, a nurse called and finally got an MRI scheduled for Saturday via emergency entrance.

Now that I am on the inside of the system with the cancer diagnosis it is strange to see how the hospitals create these additional rules and requirements. The few, I think, unnecessary appointments that take up lot of wait time --- required meeting another nurse in order to just schedule a biopsy, or for genetics 101 long chromosome explanations instead of quick blood test; but no roadmap or guidelines regarding numerous scans that are important and not easily arranged, most require different infusions (iodine, radioactive solutions, etc) and have to be scheduled and managed by YOU...