Regrowth after radiation?

[gbly]

Good day all,
I suspect there is a thread that exists, but I can't find it.  I can find threads on regrowth after surgery, but not the radiation (maybe one, but can't find it again).

1. Is there anyone that had radiation and then had regrowth? 
2. If you had regrowth how long after your treatment?
3. Was your AN considered rapid growth?
4. What was your way forward, Surgery or another round of radiation?

I have a virtual appointment tomorrow and I can't really find a definitive answer on the above. I would appreciate anyone's journey and any other items I am not thinking about.
Thank you

[gbly]

I am guessing that no one has had regrowth issues since all quiet on the forum.

Anyway, I am going in Tuesday to start the radiation journey. Ready to get this party started and only thinking positive thoughts.
Would like to hear anyone's recommendation for relaxing and any recommendations on the days of radiation. I am still waiting for updated schedule, redo my MRI on Tuesday.  But looking at 3 - 5 treatments and will keep you all posted.

If I am reading several peoples forum, you all got steroids right after treatment or only is you saw the swelling at the 3 - 6 month mark?
Anyway appreciate anyones recommendations.

Found April 2019 - .4 cm left ear
symtoms hearing loss
Aug 2019 MRI - .5 - .7 cm
Aug 2020 MRI - 1.6 cm - double in size

[mwatto]

Hi I am almost two years post CK and just had shrinking so far - next MRI in October. I had no steroid (3 sessions CK) and I dont think I have even had swelling - no side effects so far. (Some bnerve twinges in ear but medical cannabis and melatonin troches helping a lot with that.)

[gbly]

Replying to both. Thank you and this forum is good to get everyone's story, it is so helpful.

Good luck in October, please keep us posted on your October MRI.

I will give a day by day in here as well, it was great reading everyone's journey, what helped me decide in the end.
GB

[Greece Lover]

I do know that regrowth after radiation is possible because my surgeon told me he sometimes has to do surgery on those tumors. I think its pretty rare, however.
good luck in your journey.

[richcooks]

It has been 10 years since I had my FSR treatment.  No regrowth.  I only need to get an MRI every two years now.  My treatment resulted in me keeping my hearing in my right ear  Tumor was 8 mm. 

[gbly]

Thank you all for your response.

I start the CK journey tomorrow with a new MRI and getting my face mask.  Then the following week will move into the radiation. I know they will map it and let me know 3 or 5 treatments.

I am actually very excited about moving forward and feeling very happy with my doctor. I am seeing Dr. Jaboin at OHSU in Portland.  Absolutely loved his personality and view on getting through the process.  I have been extremely fortunate.  I have not seen anyone that has gone to OHSU but I have had a wonderful experience with Dr. Gupta and Dr. Jaboin.  I highly recommend if you are in the PNW.  I will post the journey so that future AN'ers can see OHSU as an option as well.

Again, thanks and ready to get this party started!

[mwatto]

Good luck GBL I think CK was right for me. No regrets - was told if down the line it regrows which is very unlikely they will zap it again. My oncologist has 30 years experience and serves on a number of international panels. The rest of the team also has many many years experience. A good team is key to success. Surgery was a riskier option for me.

[gbly]

Thank you all,
Just had my mask made,CT and a new MRI done, great staff.

However, I misspoke, I am not getting CK, I am going to get Proton Therapy.  Very excited about that and what I have read from the results.  I have read up on it and understand the differences of CK and Proton Therapy, but as the doctor and staff described it, the next level. Feeling very fortunate to be at OHSU and the opportunity to get Proton.

I will start or update the PT journal so that others can read it if and when they have to move that direction.
thank you all again.

[bacrane2]

Hi,

I just saw this as I've activated my account again because of just finding out about possible regrowth after 5 years after cyberknife treatment. 

1. Is there anyone that had radiation and then had regrowth? Yes
2. If you had regrowth how long after your treatment?  5 years
3. Was your AN considered rapid growth?  initially the first year it was diagnosed, it was a watch and wait; one year later growth was too quick and cyberknife was recommended which I did
4. What was your way forward, Surgery or another round of radiation?  I'm still sorting out next steps.  If I do have to do another procedure to stop regrowth, it would most probably be another cyberknife type treatment because I'm in my 70s and though healthy, brain surgery would be considered too risky. 

I hope this helps but I unfortunately don't have any definitive information for you. 

Best of luck with your decision.

Bev

[tsaff88]

I haven't checked in for a while.

I had regrowth starting one year after the gamma knife. A year later I underwent translab surgery.  That was in 2012. Since then there has been no regrowth. After six years of annual MRIs I finally didn't have one this year.

The regrowth was not rapid.  Nonetheless, I had the surgery as soon as possible to put a stake in the AN.

All these years on I still have balance issues and periodic dizziness. Last year a flight to a high altitude location followed by a week stay set back my balance. I was quite nauseated every day. I was able to alleviate the nausea by taking meclazine daily. I've had an increase in visible auras that may or may not be connected to the surgery. I have bouts of wonky head, and my short term memory is not as good as it was before surgery.

On the plus side I no longer have a tumor growing into my brain.

[gbly]

tsaff88,
Thank you for the post and glad you found to get it taken care of.  Very frustrating but strong decision on your part. I was rapid growth in the beginning so very nervous that the radiation will work.  I really appreciate your post, and wish you balance and no more dizziness as well as the other symptoms.  It is always interesting what our new normal is compared to the before.