Saturday, June 02, 2012

Watchful Waiting

On May 31st, I had my much awaited appointment at Johns Hopkins. It was crazy driving to and from Baltimore, a 2 hour drive took at least 3 and a half hours. I was very thankful to have Ian with me to drive and be a note taker. Not to mention the support he gives just by being there! He has missed other appointments in the past because of deployments and I am grateful when ever he is able to be with me.

As soon as Dr. Ball walked in, I knew I liked him. He then took the time to go over my thyroid cancer history. And not just a brief overview, really get into the meat of it (thumbs up for tackling that!). It took over half an hour to get through my entire history and Dr. Ball not only looked at my copy of my medical file but also listened to what I said (thumbs up for understanding that I know my disease!). As we talked, Dr. Ball talked to me as an intelligent and educated woman (thumbs up!). I have never liked when doctors use all the simple terms with me, I want to know exactly what is up and how to talk about it. Having this doc treat me as a valued member of my care sealed the deal that he is the guy for me.

So the news I got was not fantastic, but it wasn't bad. We are in a "watchful waiting" mode. I'm in a gray area with my thyroid cancer right now. My Tg (tumor marker) isn't high enough to indicate there is bulk disease but there is in fact disease that just can't be found yet. So there isn't any treatment to be done at this time. You can't do surgery if you don't know what to take out and doing chemotherapy isn't an option right now. If my Tg continues to rise, oral chemo will be an option, but that may be years down the road.

Radioactive iodine, the treatment I've had in the past, is not a good option either.There are signs that my disease has become RAI resistant. I also had 3 stout doses of RAI so there's a good chance it won't work anyway. I have to admit that I am not sad that this choice is experience with RAI was not pleasant.

I had a very thorough ultrasound done on my neck, about 45 minutes of pictures. We will likely do an FNA (biopsy) of at least one lymph node but both Dr. Ball and I suspect that it will come back clean. Better to be safe than sorry.

I also learn that I had extranodal extension (spread outside the lymph nodes) with my original tumor and lymph nodes in subsequent surgeries. Because of this it is much more likely that I will have nodes pop up with disease in the future. I will be having regular testing done to watch for this using CT and/or PET scans, maybe once a year. I will likely have ultrasounds through in there as well. My Tg will be monitored through blood work, with and without Thyrogen a couple times a year. It's a good thing that this cancer is slow growing but it's also frustrating! You have to wait for it to make it's move but the waiting could be years...for a girl who isn't so patient this is not a great place.

So that's where we are at. Watchful waiting. And while I'm not thrilled with the idea of more waiting, I have a plan in place and that is exactly what I need. To know that I am being cared for by an excellent physician who is committed to my health.

And the best part is that watchful waiting doesn't interfere with my life or running!


Jackie said...

The other good thing is that while you are doing that "watchful waiting" you are actively watching your boys grow up!! Enjoy!!

genderist said...

Welcome to my world of "watchful waiting". Sending lots of love your way.

The Mom said...

I am so glad I found your blog! I ran with you to the top of the Naval Academy bridge in the Zooma race this past weekend. Thank you so much for sharing your story with all of us. You are truly an inspiration of strength and determination. Would you mind if I add a link to your blog on my review of the race this weekend? Here's the link to it:
Thanks again! - Sarah

Liese Kaye said...

So glad I found your blog/you found me on Twitter! (: I am just starting my "fight" - FNA has been declared indeterminate, but the cells look exactly like FTC according to the doctor. Figuring out a course of action now, but I'm going to try to start running again after about 15 years in the middle of it. (: You're very inspirational with all you juggle - thank you! :D