SRS treatment for spinal tumours

• By Beverly2
• Posted August 29, 2008 at 10:10 pm

I'm so glad to hear that the surgery is over and he's home. What an answer to prayers!

No ideas about SRS. We've never been that route.

Take care!

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• By TJ7334
• Posted August 30, 2008 at 12:48 am

Someone who is very special to me has VHL. He's battling various tumors at this time, the most serious of which is somewhat similar to that of your son's. Any surgery involving the spinal cord is, obviously, very risky.

I read your post concerning SRS and began researching. Mount Sinai Medical Center has apparently successfully used SRS to treat spinal tumors. http://www.medicalnewstoday.com/articles/71239.php

Many articles that I read seemed to encourage SRS for spinal tumors. Look at the section of this article on Spinal Radiosurgery http://theoncologist.alphamedpress.org/cgi/content/full/9/2/188

I'm planning to continue researching and if I find anything that appears helpful, I'll post. Please do the same. Thanks.

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• By TJ7334
• Posted August 30, 2008 at 1:27 am

http://vhl.org/stereo/

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• By Myway
• Posted August 31, 2008 at 11:44 am

Thank you!

I have written to a couple of consultants in the States who said they are willing to look at my son's scans, one of whom deals particularly with SRS and the spinal chord, so I am in the process of speaking with our neurosurgeon here requesting that he sends them as soon as possible.

I will now go and have a look at the websites that you have listed!

Thank you again!

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• By Myway
• Posted August 31, 2008 at 11:58 am

Me again!

Just read briefly the two articles mentioned above, they both indicate that SRS is possibly a way forward, but it would appear that they are more related to metastic tumours as opposed to the vascular benign tumour that is common to VHL. These tumours bring their own problems as they swell when treated with radiation, which within the spinal column, is not very favourable as there is little room to move!

We shall keep researching and I too will share any information that I find with you!

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• By TJ7334
• Posted August 31, 2008 at 12:35 pm

I've just started reading more about SRS. We all become very determined to find answers when those we love are faced with challenges. My dear friend has 7 hemangioblastomas as a result of vhl: 4 thorasic, 3 lumbar, 1 cervical. The one at T-11,T-12 is pressing against a nerve and causing terrible pain. Different doctors offer different opinions as to whether he should proceed with surgery, but none seem to suggest SRS.

There just has to be a reasonable option for him. No one should live in pain, yet I understand the suggestion of avoiding spinal surgery at almost all costs. I'll keep reading. You do the same. We'll share our findings.

Thanks!

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• By hollied78
• Posted August 31, 2008 at 10:46 pm

I've had SRS for two tumoirs- one in my spinal cord around T5 and the other in my brain stem. Results have been very promising. My neurosurgeon told me that the hope is that the tumors will stop growing and if they get smaller that is an added bonus. They also said that SRS works best when the tumors arenot causing symptoms because they may not get smaller. My tumors were treated with SRS 6 months ago and the spinal lesion has stayed the same size while the tumor in the brain stem shrank by 30%. My SRS treatments were done at UCLA.

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• By Myway
• Posted September 1, 2008 at 12:55 pm

Thank you for your response, it is promising that the SRS you received would appear to be holding the spinal tumour and has shrunk the brainstem tumour.

My son has also had SRS a couple of times now for tumours in the cerebellum and on the brainstem, one shrivelled and died the other shrank which has given him some time. He now has a further two which will require attention in the near future, one again on the brainstem the other in the cerebellum and has a cyst. We have been told that because of the open surgery my son has had to date the brain will have shifted and therefore they are not willing to do SRS because of the danger of radiating the same area twice - not a good idea!!

It is SRS for spinal tumours that we have no experience of, we too have heard that it is preferable for them not to be symptomatic (which my son is - to what degree is unknown as they believe the tumour and syrinx he has just had surgery for were also playing a role in his symptoms, his recovery has been amazing but he still has weakness in his left leg, balance problems and a tingling sensation in his left hand - it is early days though?! Only two weeks?!) because of the swelling that can take place after SRS. We have also been told to air extreme caution with SRS on spinal tumours and that is why I am trying to gleen as much information from people such as yourself, second opinions and my own research into this, as I possibly can prior to the meeting with the consultant - then we can ask the right questions!

Good luck, I hope that all keeps going well!

Thank you again! :o)

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• By beccaloo
• Posted September 1, 2008 at 5:56 pm

Am I correct in that because I had radiation treatments and maxed out on the dosage for my age, size, etc, I am inelligible for SRS? I think I am, but I too have a benign clump of stuff in a syrinx at T7. When my neurosurgeon tried to remove it back in 2001/02 (sorry, I had so much surgery during that/those years it's a bit blurry) the sensors connected to my feet that tracked the sensation in my legs and feet went nuts according to him, so he sewed me up and we moved on to treat the other problems VHL was causing. We've been watching good ol' T7 since then with yearly MRI's - actually we just went to every other year MRI's - to watch and see if it grows. Meanwhile, yep, it pushes on the nerves in my spine and causes a lot of pain. I'm on a lot of meds to keep the pain bareable but we know I'm going to have to act on T7 at some point, either when it grows (which is pretty likely) or when I get to the point that I can't stand the pain anymore. VHL: the ultimate Wait And See Game.

:o)
Rebecca.

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• By TJ7334
• Posted September 1, 2008 at 10:02 pm

I've found a few older articles that seem to indicate that SRS is not often suggested for spinal tumors in VHL patients, although some articles say that it is occasionally done just the same. I would like to know the current trends and practices. Would anyone suggest that I email some of the authors from the older relevant articles to see if there is a chance they would respond to give me an update as to suggested medical procedures in these cases?

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• By Myway
• Posted September 2, 2008 at 9:15 am

Hi!

I don't know about reaching a limit with radiation, all I know is that my son's last two SRS treaments were in almost the same place as these two that they are watching at the moment and that there is too much of a risk in zapping them as there is a chance they could zap the same area twice. . . . . . and you're right VHL is THE ultimate wait and see game!

It does no harm to write to the authors, they can only say no! It would appear that SRS for spinal tumours in general is becoming more frequent, but because VHL tumours are made up of blood vessels greater caution has to be taken - but from what I have read it doesn't mean that it can't be done. It's just the timing, the size of the tumour they treat, if symptomatic and they swell then the symptoms surely will get worse, and I believe that the spinal chord and surrounding nerves aren't very good at recovering, I could be wrong though. This is why we are asking so many people for their opinion, reaching out for answers and questions to ask the consultant before embarking on a journey that could lead to more problems than it will solve.

We have been told that our son will end up in a wheelchair because of this tumour, so it is how long will the journey take - years we hope, but with the current scans showing growth and the symptoms he is displaying we aren't so optimistic. We have been told that we can either wait for nature to run it's course, try to remove the tumour and most probably destroy the spinal chord at that point or now we have the suggestion of SRS. Will SRS end up with the same result as surgery and as fast, or will it buy our son some extra time? Will it create more problems than it will solve? I am not sure anyone can answer these questions, but we look for knowledge and seek guidance.

I believe in hope, medicine is moving forward every day and in moving forward we are moving closer to better treatments and ultimately a cure.

Thank you!

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• By TJ7334
• Posted September 2, 2008 at 12:10 pm

What you've read sounds very similar to my readings. I'm just curious about how doctors go about making a decision to either use or not use SRS. I'll write some authors soon and post if I hear anything back from them.

This may be very basic for you, but I'm a novice here so I'll share what I have learned in hopes that everyone can expand on it. I've read that there are three types of SRS:

(1) Cobalt-60 (photon) = Gamma Knife®. Non-invasive surgery for brain tumors that are < 3.5cm.

(2) Linear accelerator (linac) = IMRT=CyberKnife®. Non-invasive surgery for tumors throughout the body. One time is for <2.5 cm. More than once for larger tumors which is called fractionated stereotactic radiotherapy.

(3) Particle beam (proton). The last article I read said that there were only 6 of these machines in the US. This procedure is apparently very controlled and accurate with far less collateral damage than with other radiation procedures.

I'm particularly curious about #3 as well as when any of these procedures are used successfully on vhl patients. Does anyone have additional information?

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• By beccaloo
• Posted September 2, 2008 at 2:11 pm

Yep. There's that dreaded word: Cyberknife. I had just regular run-of-the-mill radiation where they zapped my brain stem (When they zapped that part I got this odor of chlorine like we used to use in the summertime for our pool, which, according to the tech people have all kinds of different sensations when you zap the brain. Makes sense to me!) and spinal cord. About a year later cyberknife was all the rage and I asked my neurosurgeon if that was an option and he said it would've been but my body's had the limit of radiation that it can take. That was about 6 years ago and I'm still having radiation side effects which, again, according to my dr., can come pretty much at any time and in any severity b/c that's how the radiation effects the body. For me I noticed suddenly my right leg which had been stronger was now weaker. My dr. said that was the radiation and he while he was purty sure it wasn't going to get better (no weightlifting would help b/c the damage is permanent) he really didn'tknow if it'd get worse or in say, 2 years suddenly my right hand might feel weaker. So I said, "Okay, I get it. So basically what it boils down to is I, and others who've received radiation, have kind of a low grade radiation sickness?" "Yep. And you can't be zapped anymore b/c the body can only handle so much and you're maxed out. So no more zapping and no cyberknife."

Figures: always a day late and a dollar short!

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• By joyceg98
• Posted September 3, 2008 at 4:14 am

This is an area I know very little about, but from the looks of this conversation, it looks like it's time to assemble some guidelines, if possible, for the use of SRS in the spinal cord.

One key observation is the one MyWay makes above, that most of the successful treatments of tumors in the spinal cord are of solid tumors and mets, not hemangioblastomas (hB). As we know from experience in the brain, hB respond differently to the treatment and must therefore be handled much more carefully.

The team I know that has the most experience with SRS and hB in the spinal cord is at the University of Pittsburgh in Pennsylvania, under Dr. L. Dade Lunsford, who writes:

"We are happy to review individual patient requests for consultation based on their sending us the pertinent clinical information and imaging studies or arranging for a direct face to face consultation.

"Such information or requests can be sent to me via Charlene Baker, B400 UPMC, Pittsburgh, Pa. 15213. Our website is www.neurosurgery.pitt.edu."

I have asked them to help us prepare an article for the next newsletter, in January.

Your questions will help to shape that article.

Thank you!
Joyce

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• By Myway
• Posted September 5, 2008 at 1:32 pm

I have written to Dr. Lunsford who has kindly said that he will review my son's scans which is fantastic! I wrote to the consultant here requesting for them to be sent, so now we wait, hopefully it won't take too long as time is precious!

In the meantime I have carried on searching the web for information, and the article on the VHLFA website regarding SRS held some interesting information and should be looked at! Beyond that I haven't found anything different to help answer our questions and to give feed back on - which is why I am hopeful about Dr. Lunsford reviewing my son's scans.

It would be great if an article could be put together in the next newsletter, as this is a very grey area as to what is right and what is not, and as this form of treatment is becoming more common for solid tumours etc so it is being offered to 'us' but hB' in the spinal chord behave so differently we need to have a clearer picture.

I will keep you posted!

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• By joyceg98
• Posted September 7, 2008 at 5:55 pm

Great! Please let us know what you learn -- I will appreciate your help in compiling that article. Just having the right questions is an enormous help.

All the best,
Joyce

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• By Myway
• Posted September 29, 2008 at 12:34 pm

Hi!

As promised I said that I would let you know what questions we asked and their answers - as best I can.

First, we spoke to my son's oncology consultant as he has carried out the two SRS treatments for brain tumours in the past, and it was him who had put forward the possibility fo SRS to treat the large tumour embedded in the middle of my son's spinal chord.

We had huge concerns about going forward with this the biggest cause for concern being the amount of swelling that would occur as this is a big tumour - I am not sure of the size but we do know that it is sizable - and the damage the spinal chord could suffer due to the swelling but also the intensity of the radiation as the tumour and the spinal chord are almost one it is so embedded.

We were right to be concerned, as we were told that, upon discussion with colleagues, it had been decided that due to the size and how embedded it is in the chord SRS was far too risky.

Simply put, SRS would be to severe, and would most certainly cause damage to the surrounding spinal chord, the size of the tumour to great meaning that the swelling caused by SRS would bring it's own set of problems.

An alternative has been put to us - radiotherapy. This will entail daily treatment Mon-Fri for 6 weeks. The reason this has been put forward is that unlike SRS radiotherapy delivers a much smaller amount of radiation, allowing the surrounding tissue, spinal chord in this instance, to recover before the next treatment. We have been told that this will not shrink the tumour, at best it will stop the tumour from growing any further - we hope.

There will still be some swelling with this, so my son will be put on a course of steriods to try and control this.

Second we spoke to my son's neurosurgeon about the suggestion of radiotherapy. He agreed with the decision, as although surgery is a remote possibility, it will destroy the chord at that point, therefore not really viable until there are no options left available to us. He felt radiotherapy is my son's best chance at retaining the mobility he still has, and agreed that SRS would not have been a wise choice.

Third - I wrote to NIH/NINDS and also to Dr. Lunsford, both parties were more that happy to review my son's scans, but we feel confident that the direction our consultants here are taking is the best. I still have the option of sending the scans, and would do so if I wasn't confident in the outcome of out discussions.

So tomorrow we have a planning appointment, another opportunity to ask questions about radiotherapy and to air any further concerns. We will also get the start date for treatment. I will post again as time passes to let you know how treatment is going.

Please keep my son in your prayers.

Thank you

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