definition of regrowth vs. swelling?

[jak1]

I had CK in 5/2011 and my original tumor was 2.7cm at its largest measurement.  I had MRIs every 6 months and every MRI the tumor decreased for 2 years and then became 1.9cm at the same measurement location.  Next, we waited a year for an MRI thinking that the tumor was shrinking and dead.  I just got back the MRI report and the tumor is larger in all dimensions and now 2.1cm for this particular measurement. The other 2 measurements are also larger by 3mm and 4mm.

I realize measurements can be very subjective and same with report/MRI translations and so I am still waiting for my neurosurgeon to get the actual MRI disc and give me his thoughts when he has all the facts.

I know it is normal to swell (larger) and then shrink.  Has anyone had a tumor shrink and then swell? Or is it possible to ever get larger after decreasing and not be regrowth?

[PaulW]

I believe that ANs with a cystic portion can shrink and swell a few times after treatment.
Was your AN cystic at all? You need to discuss this with Stanford I would think.
Just remember Stanford's 98% success rate at 5 years, and it can take 5 years before they become stable or shrink

[Alison]

Hi, sorry to hear that, it must be concerning for you.

I've just posted my post year MRI discussion in the thread " swelling post gamma." My AN has swelled, by 3.5mm, then gone done a bit but still larger by 2.5 mm on pre treatment size, now at 17mm.

I had linac SRS single dose in the UK. I asked the neurosurgeon if the AN can swell, go down but then swell up again. He said yes.

I asked if mine was cystic but he evaded answering that, but said basically if the tumour has swelled then gone down a bit, you can get cystic degeneration although he didn't see any on my MRI. Swelling causes fluid build up, ie oedema and when it goes down you are left with some fluid where the this has happened. I hope I got that right!

So I suppose if it swells again , it could be fluid. Although one worries what is swelling and what is growth. Hope yours is not growth. Let us know how you get on.

Alison x

[jak1]

Stanford got my actual MRI and we are going to change the MRI frequency to every 6 months for now.  The tumor is still unstable after almost 3 years and has indeed increased in size by 2 mm from last MRI.  However, it is still much smaller than the size before treatment.

I have so much confidence in Dr. Chang and this institution.  When I interviewed all the doctors to make a decision, I was thinking if I was in medical school and not prepared for a test than who would I try and cheat from? Not who was the nicest, or most respected or best office, etc.. Anyway, I was emailed back at 5:00 am in the morning my time (2am west coast) just to show you how busy they are and how dedicated this guy is. I am so happy to have made this choice.

I am very happy he did not knee jerk jump and just blurt out surgery like my ENT when he saw the MRI summary report.  I suppose it goes to show that you should wait for the experts to translate and measure the MRI instead of a report reader that does not specialize in AN's and measures non-standard shapes different every time.

I know my symptoms have worsened in the last few months and possibly my doctor is trying to be calm and not panic my situation.  These tumors are slow growing, so for now - MRI in another 5 months to see how it is changing and hoping it is just unstable and not regrowth.

will keep you posted..

-JAK