Radiation shrinking patterns

[SV2011]

Hello everyone,

This is my first time posting . I am 37 years old, i had radiostatic radiosurgery Dec 2011 on my AN. For the first 2 months I had some bad bouts of dizzy spells but battled them through and carried on. Since then i've had bad tinnitus some facial sensitivity, fuzzy head but no balance issues as bad as the first 2 months. I had an MRI scan done feb 2012 (1 yr on) and the tumour was still inflamed. We  decided to wait and see when I reach 18 months. I haven't  had any steroids to alleviate my symptoms and when I mentioned this to my consultant he asked me to get in touch next time I had an episode. I had a real fuzzy head this weekend, and have contacted him, and now he has prescribed me a short course of steroids. I feel much better now and my symptoms have gone.. I am wandering wether to start the steroids or not. I've managed so far without them, however if they will help stop the tumour from remaining inflamed I will happily take them. Hs anyone else had this experience?

[arizonajack]

What I learned from my doctors and from my research is that you can expect swelling of the tumor for 1 - 2 years post radiation while the tumor is dying. However, it's not inflammation and I haven't read anything that would indicate that steroids would have any affect on the normal swelling of the tumor although steroids might help with the symptoms. Make sure you ask your doctor if that's the case.

The following set of images shows you the progress of a tumor over a 36 month period after radiation treatment.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

The dark spot in the tumor shows where the cels are dead or dying and no longer absorb the contrast.

The turning point for shrinkage appears to be between 12 and 24 months.

Have you compared your latest MRI images to the images at the time of treatment?

How do they look?


I keep that set of images because the pre-treatment size and shape of the AN is similar to my own.

But the following site has progressive images of various sized and shaped ANs.

http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO

[SV2011]

Hello

Thanks for your reply. When comparing the MRI images after treatment (feb12) and latest scan (feb13) the tumour has a hole puncture in the middle, and it is bigger (not dramatically bigger) so shrinkage hasn't happened yet. I am just wandering if the steroids aid the treatment of the tumour after radio-surgery or is it used to alleviate the symptoms of the swelling? How important are the steroids for a successful result of radiation.

[Alison]

Hi,
as a post 4 month SRS patient experiencing swelling ( v bad imbalance/ dizziness) I have also wondered about steroids but wish to avoid them too.  Arizonajack, interesting that your research indicates swelling is not inflammation. I wonder how one would differ from the other, or be diagnosed as inflamation anyway?

Thanks for the links too arizonajack, very interesting second link with the images and info.

Alison 

[arizonajack]

Arizonajack, interesting that your research indicates swelling is not inflammation. I wonder how one would differ from the other, or be diagnosed as inflamation anyway?
Alison

I may have worded my comment a little off base.

When I think of inflammation I think of the irritation of healthy tissue which doesn't necessarily involve swelling of the tissue.

The post radiation swelling of the tumor (I think) is caused by temporary expansion of dying cells.

I have seen articles that refer to the swelling as inflammation. I can't give a clinical explanation but I'm not sure I see it that way.

As for the use of corticosteroids to reduce the swelling of the tumor itself, I don't know. Suffice it to say that corticosteroids often carry their own set of consequences so they should be given some careful thought before use.

[PaulW]

My doctor told me that the swelling is caused by the cells dying.
As the cells begin to die they start to lose their ability to control water levels within the cell.
As a result the cells begin to swell. Eventually cell membranes are ruptured, and the cell dies.
Apparently as the cells die they also emit a number of proteins, and these proteins are theorised to cause irritation.

Different countries and centres appear to have different ideas on steroids.
In Europe steroids are used far less often. According to my doctor its debateable as to whether steroids change the long term outcome with AN's
My personal experience with steroids is that you don't want to take them unless you really need them.

[jsanders1379]

Yes, steroids- not to be taken lightly-I developed pretty severe osteoporosis of the spine after taking steroids following my bone marrow transplant... My bone doctor referred to them as "chewing up bone"...

[Anomar11]

Hi,

I wanted to chime in on this.  My course was a little different re: swelling/shrinking as my signature line shows.  My tumor plumped up big time at 1 year, then a little more at 2 year.  It did shrink on year 3 and then  even more at 4 year.  I was nervous at year 2.  Just know that this can be a variation.  I also had wonky head with 2 episodes of bad vertigo.  My wonky head disorientation lasted a good 18 months (starting at 4 months post),  then every day became a little better, until it was gone. 

[JoyNJ]

At the very end of my radiation treatments (25 treatments over 5 weeks, Nov to Dec '12) the inflammation of the area of my AN suddenly got so bad I lost most of the hearing in my affected ear, then developed severe nerve pain under my eye and down to my upper lip.  My doc described it as the tumor area swelling due to the assault of the radiation.  Unfortunately, I have no hearing in my other ear, so it was imperative to treat ASAP.  I did 2 rounds of steroids, the first a low dose for 3 weeks which helped, but not completely and after 4 days off the steroids, the hearing problem and nerve pain returned.  So I took a much higher dose, again for 3 weeks which put me back to my normal...about 60% hearing in my affected ear, and no nerve pain.
 
Osteoporosis will occur with very long-term steroid use, but is not the norm with short-term use. I fully understand doctors and patients having concerns about steroid use, but in my case, these concerns outweighed the very real possibility of losing my only remaining hearing due to damage to the auditory nerve from the inflammation of the tumor.

[Tumbleweed]

I concur with Paul and Joy. In cases of sudden hearing loss (either before or after treatment), steroids can be an effective remedy if taken immediately (within 24 to 48 hours of onset of hearing loss) before the damage becomes irreversible. For dealing with other symptoms that merely cause discomfort, even if it's fairly severe, it's best to avoid taking steroids if you can tough it out. I think a good rule of thumb is: Loss of critical function -> take steroids (immediately); all else -> avoid taking steroids if at all possible.

My two cents only,
TW