• From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 778

Topic: Stereotactic radiation

I don't know how this works for others, but I wanted to post in this section for anyone who is given this as an option:
I received stereotactic radiation in June/July on the single tumor and the lymph nodes that are active with 2 different mutations of CC. The radiological onc said Monday that he couldn't have asked for a better outcome. Since I am inoperable, I have to live with cancer.
So here are the results of the PET nd CT scans:
The CT has some clips blocking the results due to the embolizations so we ran a PET scan. It showed "mild uptake". and they did not record numbers. The onc says the reason they didn't record numbers is because the cells are barely more active than "normal" cells. I take that as good news.
There will come a time when the cells start becoming active again. It might be months: it might be years. I'm praying for the years. Right now we are going to treat it as a "chronic illness" and watch with CT scans every few months.
I just wanted to share the news for anyone that is given this as an option. The best part is that it was 5 visits, not many many visits. I am maxed out in those areas: I can never receive radiation to those areas again, but the results are wonderful. I also know that it might not work as well for others as it did for me, but it should give you hope.

Kris

Don't just have minutes in the day; have moments in time.
  • From: California
  • Registered: Mon, 20 Aug 2012
  • Posts: 281

Re: Stereotactic radiation

That's great news, Kris!  Thanks for sharing your experience and results.  That really is nice to know that the stereotactic radiation is working so well!  How is that administered?  Did they open you up surgically or just make tiny laparoscopic incision?  Or is it like external beam?  Also, were your "clips" from chemo embo or radio embo?
It's hard to change gears and just accept the mindset to treat this as a "chronic illness", but that's what it is in reality.   I hate that they say you can not  to repeat the radiation to those areas later if needed.  My sister is in a similar situation, but being offered radioembolization. She was only diag. in Aug and has had only 5 chemo treatments so far, but they need to move fast on the tumor in her portal vein.  They at first said chemoembo, then quickly ruled that out and moved to radioembo as the next step. They said that radiation to that area closes the door to resection/transplant forever and it's a "one time only" option for the tumor in her portal vein (it's right where it branches into the left and right), but it sounds like it can definitely buy her some time.  Like you, she is in decent health, relatively young (50) and has much to live for!   Peace to you and again, so glad that you had some success! It DOES give hope!

Willow
  • From: Basking Ridge, NJ
  • Registered: Thu, 14 Mar 2013
  • Posts: 115

Re: Stereotactic radiation

Hi Kris,

I'm a new member and just saw your post from last November.  I am going to be starting stereotactic body radiation therapy (SBRT) soon and was happy to see your positive results.  Am wondering how you are currently doing?  Any advice you can give me regarding this treatment - side effects, etc. - would be greatly appreciated.  I was told I would have 3 to 5 treatments.

Mary

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 778

Re: Stereotactic radiation

Hi Mary:
The radiated areas are still nice and quiet. There are no clearly defined edges anymore so that's good. Unfortunately, I just found out it has spread to yet another node. I am hoping to be able to get stereotactic radiation on this one, too. I meet with the doc on Monday.
I had no side effects... Just a little tired. It was nice to only have to have 5 treatments. Where are you going?

Kris

Don't just have minutes in the day; have moments in time.
  • From: Basking Ridge, NJ
  • Registered: Thu, 14 Mar 2013
  • Posts: 115

Re: Stereotactic radiation

Hi Kris,

Good luck with your appointment on Monday.

I am being treated at Memorial Sloan Kettering in NYC.  I have an appt on Monday with the surgical oncologist to discuss putting a spacer in between my stomach and liver to keep the radiation away from my stomach. At that time he will be putting in the gold seeds in the tumor in preparation for the SBRT.  I'm hoping he will give me a surgery date on Monday and it will be soon so I can start the SBRT.

Mary

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 778

Re: Stereotactic radiation

Mary:
What great news! I go there, too, although I get my radiation at fox chase in Phila because its much, much closer.
I hope you get nothing but good new on Monday. I meet with my rad onc again on Monday, too. The cancer as spread again and I just hope that I can get rad because it worked so well...
Who is your onc and surgeon? I apologize if I know this, but my mind is like a rusty sieve...

Kris

Don't just have minutes in the day; have moments in time.
  • From: Basking Ridge, NJ
  • Registered: Thu, 14 Mar 2013
  • Posts: 115

Re: Stereotactic radiation

Hi Kris,

I had my chemo at the Memorial Sloan Kettering satellite office in Basking Ridge, NJ.  My oncologist was Dr. Passalaris there.  The surgical oncologist I'm going to see is Dr. Yoon at Sloan in the city.  The radiation oncologist is also in the city.  Her name is Dr. Goodman.