Has radiation helped stop your tumor from growing?

[phx]

I'm curious. I had an unsuccessful surgery with %15 removal. Doctors said it was too risky considering the place it is located. The tumor's about 2.9 x 3 x 1.9, I think. If the radiation did help, did you get numerous treatments between years and how long has it been since the last treatment? I just had my follow up MRI for radiation on Monday and will be seeing my neurologist next week. I'm hoping to hear good things. Thanks everyone!

[ppearl214]

I'm a little confused by the question but will attempt to answer based on my personal experience.

I had Cyberknife almost 5 years ago.  My AN was 1 cm at the time of treatment (it had grown since initial diagnosis).  My last MRI done at the 4 yrs mark earlier this year showed that mine actually shrunk a bit.  Shrinkage of AN via radio is not a common occurence but, can happen.  Goal of radio is to stop further growth of the tumor, not to shrink it but some shrinkage is reported (as in my case).  I had one CK treatment, done over 5 days for a total of 30Gy.  As of today (knock on wood), the AN is under "control", no further enhanced growth (as previously noted), has lost its shape (more like a "blob" now) and dr's have deemed me a "done deal."

Hope this has helped answer the question.

Phyl

[Jim Scott]

phx ~

As I've recounted in previous posts, I had a tumor resection ('debulking') then FSR in a planned, two-step procedure in 2006.  The FSR (fractionated stereotactic radiosurgery) was administered in 26 separate daily 'treatments' and was effective in not only stopping the tumor's growth but led to it's eventual necrosis (cell death) and some shrinkage.  I suffered no adverse effects from the radiation.  I trust this information may be useful to you.

Jim

[phx]

I'm sorry for being unclear. What I'm wondering, for example is: someone has a tumor, gets radiation, and later on finds the tumor has grown a little. What happens then? Radiation again? Or is it that the tumor will not grow anymore. Having the tumor not grow anymore would be a blessing. Thoughts?

[ppearl214]

oh, no worries..... thanks for the clarification.

Ok, will only share what I know and hoping others chime in as well.

I believe in the case of Cyberknife (CK), you can be re-radiated if need be (one of the many reasons, for my situation, that I chose it).  Now, I thought other modes of radiation could be redone, possibly GK and I'd have to do further research on that. 

I know of some that had radiation that did not work... come to find out that down the road, there AN's did continue to grow and most opted, at that point, for surgery (possibly for their own personal choices as well as previously-chosen modes of radio could not be redone).  Recent AN'er here that comes to mind for this type of scenario is StoneAxe (Bob).  He had Proton radiation at MGH in Boston.... and due to continued growth, had surgical removal done (also at MGH).

It's one of the risks we take in any AN treatment option...... regrowths.  Now, I know of jcinma (Jane), who had an AN surgically removed, then had radiation on the remaning bits of it... then, had another AN grow (a 2nd one.... not the same one regrown, to the best of my knowledge.... she is best to confirm this).  Regardless of AN treatment options chosen, we unforutnately walk in shoes that we remain on our toes down the road..... for radio patients, it could be in the back of our minds "will this continue to grow after treatment?"... it could be (for AN'ers as a whole) "will I develop/grow another AN?" or even for surgical "did they get it all and if not, will the remaining bits continue to grow?".  Unfortuneately, for some, its all part of this journey.....

not sure if this helped... I haven't had enough coffee yet this am.

Phyl

[Tumbleweed]

I had CK 28 months ago. My tumor swelled 33% in volume after CK but then shrank 59% by the next followup MRI. It is now significantly smaller than it was at the time I was treated -- especially along the oblique transverse axis, where it had been pressing mildly on my brain stem but has now receded 24% in dimension. My AN looks virtually the same in the MRI I had last week compared to the series taken last December. So, in all likelihood it has stopped growing and shrinking and will remain this size from here on out.

Best wishes,
TW

[Jim Scott]

I'm sorry for being unclear. What I'm wondering, for example is: someone has a tumor, gets radiation, and later on finds the tumor has grown a little. What happens then? Radiation again? Or is it that the tumor will not grow anymore. Having the tumor not grow anymore would be a blessing. Thoughts?

This is strictly speculation but in the majority of cases where radiation does not halt tumor growth, I believe the AN is surgically removed, although further radiation could be an option, unless the risk of bringing the patient to dangerous levels of radiation are present and the doctor and/or patient opt for surgery as a safer alternative.  However, in almost every radiation case, including my own (FSR), the tumor initially swells in reaction to the radiation, then, in a successful radiation scenario, the AN begins to show necrosis (cell death) and shrinkage.  This is what happened in my case.

Jim

[Tumbleweed]

However, in almost every radiation case, including my own (FSR), the tumor initially swells in reaction to the radiation, then, in a successful radiation scenario, the AN begins to show necrosis (cell death) and shrinkage. 
Jim

This is certainly my impression based on reading other people's experiences on this forum. But it should be noted that Dr. Chang puts in the minority his patients whose tumors develop swelling. I can't remember the exact percentage figure he put on this, but it was definitely under 30% for "swellers" (my off-the-cuff term). Not to second-guess Dr. Chang, but I've been surprised in retrospect that his figure was so low. It seems a lot of radiation patients -- myself included -- have complained about the effects of swelling on this forum.

Best wishes,
TW

[tichinose]

If I were to do it over again....i would not do radiation and do another surgery...even my kids feel radiatiom was a waste of time and money when they see me...

[koch]

My doctor at the gamma knife center at Tufts told me that if he were to be too conservative in attempting to spare my hearing, it might not affect the tumor enough.  He added that it would not be possible to repeat the procedure later.  I have no idea why.  Good luck!

[JLR]

Hi.. I asked my doctor ( Dr. Haas, Chief Radiation Oncology) if the CK proves unsuccessful, can the CK be repeated...he said NO.