"Only 20% chance of tumor swelling and increased symptoms from radiation"?

[free2be]

I had a consult with a radiation oncologist today. He told me that only 20% of AN radiation patients (he does LINAC) get tumor swelling that causes an increase in symptoms. I reiterated this statistic back to him twice and I wrote it down to be sure I heard him correctly. This does not seem to be even close to what I have read and researched.

Any thoughts on the accuracy of this statistic?

[Jim Scott]

Connie ~

I'm not sure there is a reliable figure available for post-radiation swelling.  Of course, swelling that produces an increase in symptoms is the key.  However, based on what I've read here and elsewhere, I would guess the 20% number is generally accurate.  I underwent tumor debulking prior to (26) FSR treatments and experienced some slight swelling (visible only with MRI images) within six months of the procedure, although I did not have any swelling-related symptoms.  Big difference.  

Jim

Note: I moved this thread from AN Issues and deleted your duplicate thread, here. 

[RAB]

I'm assuming that I had swelling after my GK treatment which caused my sudden hearing loss attack.  My Dr. told me it was rare.

[MLB57]

Hi Connie,

I had LINAC at Mass General Fall 2007 and  didn't actually see my first MRI images (year later) but Dr Loeffler confirmed everything was progressing as he had anticipated--I didn't ask to see the scan as he had interns with him during my visit and i got sidetracked. My next MRI was 1  1/2 years after that first post-radiation scan and this time he couldn't wait to show me the difference between the scans--and wallah!!--my 1 cm tumor showed immense swelling (looked like a big white blob) after the radiation and this latest scan showed a tiny black spot--he then explained that my AN had swollen after radiation but now has shrunk to approx 8mm (from 1 cm pre-radiation)... 

I had no symptoms as a result of the swelling--my hearing had deteriorated long ago after my surgery in 2001.

So I agree with Jim that the swelling really only becomes problematic if you have increased symptoms--I believe at one point during the radiation I had asked Dr Loeffler about swelling and he said it does happen and that steroids are given but apparently it is not a major concern as the swelling can be easily controlled/stopped.

So I'd say the bottom line is if you have increased symptoms during/after radiation you certainly should let your MD know...

Best wishes, and don't ya just love this summer?!?!   

Mary (aka Grammy Mary-- "Mimi" to my grandson Matthew)... 

[free2be]

RAB and Mary

Thanks for your feedback. It just seemed that I have read so much on the forum about increased symptoms after rad and swelling that it was very likely to occur. I will be glad to learn it doesn't happen all that often.

Mary, I'm hating this summer. I'm in the mountains! of north GA and it's been 85-90 everyday since I can remember. The days I go to town or have to go to Atlanta for AN appointments it's been hotter. Last Friday it was 104 plus humidity in Atlanta. I left FL to get away from this kind of heat, but I'm feeling like someone transported me back without my authorization!

Connie

[jb]

I've seen estimates in that range, some up to 40%.  They might be asymptomatic, though, like Jim said.  I had significant swelling with increased balance and hearing issues, but it resolved over time.  You probably get more folks posting on here that are experiencing problems which makes it seem more common than it really is.  That's my theory anyway. 

[MLB57]

Hii Connie,

We New Englanders have had an unusually hot and humid summer--As long as my AC is working I won't complain as soon enough we will be complaining about the snow/ice/cold!!....But I do sympathize with you as your heat and humidity is much worse than ours here! 

Hope all goes well for you on your AN treatment journey... 


Best always, Mary (aka Grammy Mary and "Mimi" to grandson Matthew)...

[annamaria]

This article shows higher rates (29%) as well as what the volume increase could be (up to 188%).

Annamaria

= = = = =

J Korean Neurosurg Soc. 2007 Oct;42(4):286-92. Epub 2007 Oct 20.

Long-term Outcomes of Gamma Knife Stereotactic Radiosurgery of Vestibular Schwannomas.
Kim KM, Park CK, Chung HT, Paek SH, Jung HW, Kim DG.

Department of Neurosurgery, Seoul National University, College of Medicine, Seoul, Korea.

Abstract
OBJECTIVE: Gamma Knife Stereotactic Radiosurgery (GK SRS) has become an important treatment modality for vestibular schwannomas. We evaluated the tumor control rate, patterns of tumor volume change and preservation of hearing following low-dose radiation for vestibular schwannomas in a homogeneous cohort group in which the mean marginal dose was 12 Gy. METHODS: A total of 59 patients were enrolled in this study. All enrolled patients were followed-up for at least 5 years and the radiation dose was 11-13 Gy. Regular MRI, audiometry and clinical evaluations were done and tumor volumes were obtained from MRI using the OSIRIS program. RESULTS: The tumor control rate was 97%. We were able to classify the patterns of change in tumor volume into three categories. Transient increases in tumor volume were detected in 29% of the patients and the maximum transient increase in tumor volume was identified at 6 to 30 months after GK SRS. The transient increases in tumor volume ranged from 121% to 188%. Hearing was preserved in 4 of the 12 patients who had serviceable hearing prior to treatment. There were no other complications associated with GK SRS. CONCLUSION: Low-dose GK SRS was an effective and safe mode of treatment for vestibular schwannomas in comparison to the previously used high-dose GK SRS. Transient increases in tumor volume can be identified during the follow-up period after low-dose GK SRS for vestibular schwannomas. Physicians should be aware that these increases are not always indicative of treatment failure and that close observation is required following treatments. Unfortunately, a satisfactory hearing preservation rate was not achieved by reducing the radiation dose. It is thought that hearing preservation is a more sophisticated problem and further research is required.

PMID: 19096558 [PubMed - in process]PMCID: PMC2588215Free PMC Article


LinkOut - more resourcesFull Text Sources:
The Korean Neurosurgical Society
PubMed Central
PubMed Central Canada
UK PubMed Central

[6pick]

I had a consult with a radiation oncologist today. He told me that only 20% of AN radiation patients (he does LINAC) get tumor swelling that causes an increase in symptoms. I reiterated this statistic back to him twice and I wrote it down to be sure I heard him correctly. This does not seem to be even close to what I have read and researched.

Any thoughts on the accuracy of this statistic?

I completely agree with Jim on this: that you can't use the 20% figure without connecting that figure to "increase in symptoms".

In my consultation with Dr. Chang of Stanford, last Friday (7/29/10), he stated that one of the most difficult things for patients to understand is that the symptoms are not related to the size of the tumor. Now I get why tumors can get so big: 4 cm, 8 cm. Wow. Mine's 2.5 X 1.7 cm and it bugs me. How can a tumor get to be the size of Jim's 4.5 cm? Or Satman's 8 cm?

The other thing he said is that it should take approx. 2 years (that figure may be specific to me) to die completely, and if it dies too fast the symptoms get worse (controlled with steroids), but the point is that there is a correlation between the tumor death rate and the symptoms.


By the way, I've read that there is no universally accepted method of measuring our little beasts, and it makes sense. How do you measure a mushroom? But is there some consistency? One document I have states: Most authors advocate description of an AN's size in terms of the diameter of the CPA component of the tumor as measured in three axes: (1) parallel to the petrous ridge, (2) perpendicular to the petrous ridge, and (3) vertically. But I don't have a clear understanding of where the petrous ridge is (other than in my skull, of course). And the data on my MRI states 25 X 17 mm. So would that be 25 mm along the auditory nerve and 17 mm diameter at the mushroom "cap"? or the other way around? Does anyone have a more clear understanding of this?

[free2be]

In my consultation with Dr. Chang of Stanford, last Friday (7/29/10), he stated that one of the most difficult things for patients to understand is that the symptoms are not related to the size of the tumor. The other thing he said is that it should take approx. 2 years (that figure may be specific to me) to die completely, and if it dies too fast the symptoms get worse (controlled with steroids), but the point is that there is a correlation between the tumor death rate and the symptoms.

By the way, I've read that there is no universally accepted method of measuring our little beasts, and it makes sense. How do you measure a mushroom? But is there some consistency? One document I have states: Most authors advocate description of an AN's size in terms of the diameter of the CPA component of the tumor as measured in three axes: (1) parallel to the petrous ridge, (2) perpendicular to the petrous ridge, and (3) vertically. But I don't have a clear understanding of where the petrous ridge is (other than in my skull, of course). And the data on my MRI states 25 X 17 mm. So would that be 25 mm along the auditory nerve and 17 mm diameter at the mushroom "cap"? or the other way around? Does anyone have a more clear understanding of this?
[/quote]

6pick,

I talked with Dr. Chang very briefly on the phone. He did indicate to me that the rate of death and the increased symptoms were related (somehow, not sure I really got it all) and that slower rate of death is more beneficial where symptoms are concerned. My question is, does their approach attempt to create a slower rate of death or is that just an individual response and there’s no control over it.

What he said to you about the size not being related to the symptoms. Can you explain that further? Is that because it depends on the location and density or how it is wrapped around nerves, etc.? I certainly can understand that, as with lots of things, it’s all about location, location, location. What did he have to say about the location relative to your brain stem? I know we both share that concern.

As for your question about measurement, whew, I don’t know. My longest measurement is what runs inside the auditory canal. I don’t have a 3rd dimension measurement from my reports. I don’t “think” that all ANs even reach the CPA. So…guess I’m no help on that, but interesting question, which sounds like one for your doctor.
Connie

[sgerrard]

Connie and Mark (free2be and 6pick),

I would just like to add a general word of encouragement about radiation treatment, should either of you decide to go that way. There are certainly some questions about it, but if you are a good candidate for radiation, you will most likely do fine with it. It is anybody's guess whether you will have some swelling with noticiable symptoms afterwards, but the usual experience is that the first year is a little bumpy and then it all settles down just fine. I can also highly recommend Dr. Chang and the Stanford group.

The general notion of delivering CK treatment in 3 or 5 doses instead of 1 is that doing so is more gentle, which may help with hearing preservation, and may reduce swelling and rapid tumor death in some cases.

I am coming up on the 3 year mark in September. My AN is history as far as I'm concerned, and I like it that way.

Steve

[6pick]

I talked with Dr. Chang very briefly on the phone. He did indicate to me that the rate of death and the increased symptoms were related (somehow, not sure I really got it all) and that slower rate of death is more beneficial where symptoms are concerned. My question is, does their approach attempt to create a slower rate of death or is that just an individual response and there's no control over it.

What he said to you about the size not being related to the symptoms. Can you explain that further? Is that because it depends on the location and density or how it is wrapped around nerves, etc.? I certainly can understand that, as with lots of things, it's all about location, location, location. What did he have to say about the location relative to your brain stem? I know we both share that concern.

As for your question about measurement, whew, I don't know. My longest measurement is what runs inside the auditory canal. I don't have a 3rd dimension measurement from my reports. I don't “think” that all ANs even reach the CPA. So…guess I’m no help on that, but interesting question, which sounds like one for your doctor.
Connie

Connie: My interpretation (please remember I'm no authority) about the necrosis/symptoms question is that if the tumor dies too quickly, the symptoms could be enhanced. So to use my case as an example: (I have tinnitus and disequilibrium) my tinnitus could increase in volume and my balance could get worse - until my "alien" dies. And I think you are correct that the slower death for the tumor would be preferred. But I don't think I'm clear about your approach question. To me, approach is about how the surgeon accesses the tumor (Retro Sigmoid, Middle Fossa, Translabrynthine) and so they'd be cutting it out and death rate is pretty much instantaneous.

Size/symptoms: He didn't really elaborate. He just said that people think that if it's bigger, there should be worse symptoms. That just ain't the case. But that's about all he said except that people have a difficult time relating to that and he finds it challenging to convince them. Maybe your statement about how the tumor is wrapped around the nerves, or how it's attached or something like that is more the cause of the symptoms.

Measurement: yeah, I've been given only two measurements, too. Like many, mine started inside the canal and blossomed outside - so it's mushroom shaped (or it looks like one of those plant watering gizmos with the bulb on one end, well actually more like an incandescent light bulb - you know?)

Maybe if you PM me we could pound this out . . .



Steve:
Thanks for your encouraging words. It turns out I AM a good candidate for CK and I'm probably going to go that route. Color me a lot less wishy-washy at this point but I'm leaving my options open.

Mark

[free2be]

Well, for what it is worth, I will add to this thread that I have made my decision. I have talked to Dr. Chang and they are going through the process of getting me set up for CK at Stanford. So, if all goes well, insurance and all that, CK at Stanford is what I will do. I am relieved that I have made the decision; not so relieved when I think about the trip and procedure happening in a month or 6 weeks, but there's no point in putting it off. The sooner I get it treated, the sooner I can start recovery, the sooner I will be well and can get on with my life. This limbo business if for the birds!

Steve, thanks for the encouraging words. I feel I will be in good hands.

Mark, I'll send you a short PM; if you want to chat about this more I'll be glad to do so. It's a lot to take in and sort out with no really "great" solution. But...we go on.

Connie

[6pick]

Connie, that's great that you've made a decision. It's the hardest part, wouldn't you agree?
A month or six weeks, huh? Maybe I'll see you there. Molly and I stay at the Red Cottage Inn. A very pleasant place, all considered. Nice pool, nice little patio good bed and clean.

Good luck,

Mark

[annamaria]

I’m researching heavy-duty what I should do (for 3 months now), but my observation so far is that one shouldn’t PROBABLY believe everything one get told vaguely by a doctor who is not focusing 100% of his/her time/effort/specialty on AN/meningioma issues, without a specific reference to some recent medical paper from a reputable institution -- I was happy to download several med-pub papers at $50 each (plus looking at hundreds of free abstracts), to get the REAL data on this stuff with keen import to me and my life, without having to rely on someone with vague, probably old, data that is generalized and/or simplified… it’s you QOL (Quality of Life), so it’s worth going to the original medical research/papers.

http://www.ncbi.nlm.nih.gov/sites/entrez is the most fantastic and authoritative resource out there… if you learn how to read the medical literature … try the site with the keyword “acoustic neuroma” (“meningioma” for me) and look at all the papers published in the past 3 years …

Annamaria