Second opinion

MAC58

Hi all, just wanted to share my experience today as I went to a different RO for a second opinion. First RO was elderly, didn't answer my questions and didn't explain why he was ordering 33 rads and that 28 of them were to be concentrated on my lymph nodes from the collarbone and down under the arm. I didn't want to increase chances of lymphadema and had read of many of you on this site that had far fewer rads for more serious cancers.

So, we come to today, totally different experience! The patient representative sat with us and xplained the entire process, we watched a short movie about radiation and how it works, then we talked to a nurse and then finally the doctor sat down and explained everything again and answered every question we had. Best of all, he said I only need 20 rad treatments and the only lymph nodes radiated were the ones on the specific area of the one affected node. I feel like I'm breathing for the first time in weeks.

Of course still waiting for oncotype score to come back, which was a total screw up by oncologist office, they ordered the tissue from the wrong hospital and never followed up. So, I wasted almost a whole month waiting for a score that was never ordered. Well, I called California myself this time and know they received it Tuesday. So, I will be following up on that myself this time!

All I keep thinking about though is that if I just accepted the doctor at the first office I would have had 13 un necessary treatments and on a much larger area than needed. So, just be your own advocate and good luck and love to you all.

Maryan

sdianel

so glad you got 2nd opinion! You got this!! Hugs!

Georgia1

Great news!

nonomimi5

Follow your instinct. I also had a second opinion for a surgeon and picked the one I felt more comfortable with. I started my rads today. Only 16 sessions - I insisted on the accelerated therapy b/c I have summer plans. My Onco type was 17 - no chemo. So grateful! Crossing my fingers for your Onco type, too. Got my blood tested yesterday for the hormone therapy options.

Mimi

MAC58

Mimi, that's why I was happy about 20 as opposed to 33, we are taking the whole family on a cruise to celebrate our son graduating law school. Hopefully, we can celebrate radiation being done too.

nonomimi5

congratulations. I really believe you need to look at all options and ask for it. I think sometimes they give us extra treatments because they can. I'm sure they make more money that way. I was determined to find a way to travel with my son this summer to visit colleges and to take him to college baseball showcases. I may be fatigued after the rads but I'm gong to suck it up. So happy you can take your family on the cruise. Congrats to your son and good luck with your rads.

Mimi

MAC58

Mimi, let me know how your rads go