Author Topic: Newly diagnosed and researching treatment options  (Read 9661 times)

rupert

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Re: Newly diagnosed and researching treatment options
« Reply #15 on: February 01, 2010, 06:28:56 pm »

  Lalehjg,

  I would agree with Larry and seek some other opinions.    One of the main reason some doctors recommend against radiation at younger ages is  that the data only goes back 10-15 years.   They know the data on surgery for 30+.    No one really knows the effects and results in the future so one looks at the past.   

  You were certainly thrown a lot of statistics,   I think if you talk with other CK or GK  doctors you will hear a different opinion.   And if you talk with a couple of surgeons you will get some other options.    Think your brain is fried now!     Just take it methodical,  one at a time.  Ask the same questions and compare to each other.   Good luck.   Bryan

sgerrard

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Re: Newly diagnosed and researching treatment options
« Reply #16 on: February 01, 2010, 09:16:19 pm »
1.  cancer, for a person as young as myself - with long term effects UNKNOWN - chances: 1/100 to 1/1000 in 20 years or so - likely brain cancer
2.  no chances of shrinking it, size will stay the same
3.  chances of regrowth in my older age, in 20-30 years, for someone as young as myself, and then microsurgery would be a real risk
4.  for the stated radiosurgery control rate is 95 - 98% in 5-10 years:  how does anyone know it's not because a number of these tumors just simply are not growing on their own while still alive?

1. Doctor Medbery of the CK forum once said "If the surgeon starts telling you about the tumor becoming cancer from radiosurgery, politely excuse yourself and leave."

2. So? Actually there is a chance of some shrinkage, but no growth is the goal. No growth is good.

3. 2% chance of regrowth, yes. The last three post-radiation surgeries done at House and reported on this forum went fine. Harder for the surgeon, maybe, but we care about whether the outcome is worse. Even if there is a greater chance of facial nerve paralysis in such cases, your overall risk of facial nerve issues is below 2% - easily better than with surgery.

4. Simple. What percent of ANs that are not radiated grow some in the next 5 years? Way more than 2%.

What's a radiosurgeon? I have heard of neurosurgeons and radiation oncologists. I can't imagine a radiation oncologist would have said those things. There is no more reason to listen to a surgeon's opinion of radiation than there is to listen to a radiation oncologist's opinion of surgery.

By the way, I am planning to last 40 years (at least) from my treatment date. For you it might be 50. Age doesn't make as much difference as they like to think.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

sgerrard

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Re: Newly diagnosed and researching treatment options
« Reply #17 on: February 01, 2010, 09:23:04 pm »
Anyone here about 45 or below who went through CK?  Did your radiation oncologist recommend surgery as well mainly because of your age?

Francesco had CK at age 34, and has a web site describing the whole thing. His latest post is here:

http://anausa.org/forum/index.php?topic=11131.msg128236#msg128236

The vertigo question is a harder one. One good solution to an intractable balance nerve problem is surgery, since it cuts that nerve. It depends on what is going on with the balance nerve, I guess. Tumbleweed had some balance nerve issues, and he has recovered well after CK, so sometimes it works out fine.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Newly diagnosed and researching treatment options
« Reply #18 on: February 02, 2010, 07:12:18 am »

  Lalehjg,

  I would agree with Larry and seek some other opinions.    One of the main reason some doctors recommend against radiation at younger ages is  that the data only goes back 10-15 years.   They know the data on surgery for 30+.    No one really knows the effects and results in the future so one looks at the past.

Hey Bryan

Only FYI for those researching.... GammaKnife (GK) stems back over 40 yrs (developed in the mid to late 60's), thus, there is a track record of AN radio treatments data that is available for the distance.  The stats are especially good, noting overall success rates in the time.  For the "newer" AN radio treatments, yes... they haven't been around as long as GK but initial stats in overall success rates are available.  Steve's post above also noting what Dr. Medbery has shared on the CK forums (please note that Dr Medbery is truly well versed on GK and CK, having performed both for a number of years).  Again, this is only "fyi" for those following along......

For Leleh's question regarding age.... I had my CK in my mid-40's.  In balancing out the pros and cons to having radiation done, for me.... the pro's won out. I can get cancer from smoking, pollutents in water... and even genetics (some here know that I already have a curable form and not related to my AN CK).  We know that many treating dr's will note the "cancer scare tactics" as many are truly not familiar with the current AN radio-treatments available (ie: they are not going to promote what they are not familiar....).   My AN did shrink, as noted on my recent films and as confirmed by my team (pre-CK, the AN was "kissing" my brainstem... now it is not). 

Regrowth can occur, regardless of treatment choice (surgical, noting PattyUT's recent issues of regrowth after intial surgical process or radio, as with StoneAxe after his Proton treatment, etc.), thus, it is pertinent for all AN'ers to continue with head MRI's for the long haul... as there is always a potential for a cell to be left behind (regardless of treatment choice) and it is up to us, as AN'ers, to keep this in the back of our minds (but not to let it consume us) as we do run the risk. 

I did have temp vertigo approx 4-6 mos post CK, which was controlled by low-dose, short term use (approx 2 wks) Valium.  There have been discussions on the CK forums re: short term use of Valium to help the vertigo post-CK.  I know of a few that used it (myself included) and it did seem to help. There are also vestibular exercises that can be done to help the cause as well.

Now, for all that I wrote.... please note that "individual results may vary".  For me, I have done very well with CK.... I know of some that have not (enhanced hearing loss, balance issues, etc).  I share here only what my "experience" has been.. and some education (that is backed up by other AN'ers as well as treatment teams, such as Dr. Medbery).  For those researching CK (or other forms of radio-treatments for AN's), I hope my experience notation helps with the research process... but, as known here, I truly do respect all treatment decision processes and final outcomes for all those here and continue to send my wellness wishes to all.

Ok, I had coffee this am.... :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: Newly diagnosed and researching treatment options
« Reply #19 on: February 02, 2010, 09:21:19 am »
Lalehjg,

My comments will be biased coz of my experience but i had middle fossa 9 years ago - have had chronic headaches every day since (loads of different treatments all failing) and lost all my hearing in that ear. 3 or so years ago it grew back. i was in watch and wait. i had radiation treatment in April last year and my last MRI indicated no growth which i was pleased about.

Wow, what a jumble of info you have to sort through. Firstly i reckon you should sack your ENt and his sidekick radiation guy and go to some decent doctors.

The cool hard facts (as close as they are available now) are that with surgery, mortality rates are 1 in 500 - Surgeons won't tell youi that. The chances of cancer from radiotherapy is 1 in 100,000 I think was the last stat i saw.

From my observations on this forum and a caveat - I haven't recorded the stats, but people who have translab surgery seem to have more issues with CSF leak and facial paralysis. Middle Fossa and Retrisgmoid surgery tends to leave after effects like headaches and hearing preservation isn't as good as the surgeons tell you it will be. radiation treatment seems to offer the best results. i think there have only been one or two posters with radiation problems and one of those had numerous other issues.

here's the drum. You have probably done as much research and read enough posts to confuse you. I suggest that you seek another opinion for both surgery and radiation where the two people are not linked and when you ask about statistics or they quote you statistics make sure that they give you their stats. Industry stats are a waste of space. Find out how many ops or radiation treatments they have given. When i got my radiation treatment i asked the specialist for his stats on cancer / facial paralysis, nercosis etc.

laz

 

Just a question on the surgery side I definitely did not do alot of research prior to my AN diagnosis because both my regular doctor's advised me that surgery was the only option I should choose so I accepted their advice.  But now I am not so sure I would have jumped into the surgery and wished I would have done some research but then again if I went for radiation I would probably feel the waiting would have driven me crazy. So I guess no matter what decision we end up making maybe some people would still wonder if what they chose was the right one you have to be completely confident in your choice !!

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

leapyrtwins

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Re: Newly diagnosed and researching treatment options
« Reply #20 on: February 02, 2010, 11:11:05 am »
Pat -

I can't stress enough that people need to be confident in and comfortable with not only their treatment choice but their doctor(s). 

Second-guessing after the fact isn't a good thing. 

Obviously some people don't have treatment choices based on size and location of their tumor, but IMO unless you are certain that you are doing what is best for you, you should stop and re-examine your decision.

In your case, what is done is done.  But for others trying to make their decisions, this is a vital part of the AN Journey.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

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Tod

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Re: Newly diagnosed and researching treatment options
« Reply #21 on: February 02, 2010, 02:33:02 pm »
In some ways, happiness is not having a choice. I am quite relieved not to have to choose between the options. It is further true that the decision is also easier since the docs have made it clear to me that to drill or not to drill are choices that must be made in fewer than six months.

For anyone having to choose, I really believe you have to read all you can, here and elsewhere. You most likely will know you are getting close to a decision that is right for you when all the information, all your understandings, and your doctors are consistent. Yes, some will have different recommendations, but those are really knowledgeable will probably giving very similar answers. If this is not happening, you should consider broadening your collection of doctors you are consulting.

Making a decision that affects the rest of your life is hard. However, you have probably made other life-changing decisions before. How did you handle those?

There is really a lot of good advice here...and it all matches up. I find that comforting. However, no matter what you decide, your journey will be yours and will be different than that of others.  And no one can tell you in advance specifically how different.

Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

rupert

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Re: Newly diagnosed and researching treatment options
« Reply #22 on: February 02, 2010, 08:57:44 pm »

Yes Phyl,  your right.  gamma knife has been around a long time.   I guess I need to be more specific when I post.  I meant to say,  statistics for gamma knife in the time period of the last 15 years in which they now believe they have come up with the optimal dose of gamma rays.   At first they used very high doses and have continually reduced doseage down to where they feel it is the optimum for killing the tumor and the  least traumatic on surrounding tissue.  From my research this dose has been used for about 15 years now.   Sorry for any confusion.     Bryan

ppearl214

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Re: Newly diagnosed and researching treatment options
« Reply #23 on: February 03, 2010, 07:32:18 am »

Yes Phyl,  your right.  gamma knife has been around a long time.   I guess I need to be more specific when I post.  I meant to say,  statistics for gamma knife in the time period of the last 15 years in which they now believe they have come up with the optimal dose of gamma rays.   At first they used very high doses and have continually reduced doseage down to where they feel it is the optimum for killing the tumor and the  least traumatic on surrounding tissue.  From my research this dose has been used for about 15 years now.   Sorry for any confusion.     Bryan

no sweat, Bryan! :)  Again, my post was "FYI only"... no biggie :)  Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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