tumor recurrence after 20 years; the decision is killing me!

[Debbi]

Hi Carrie-

You have a lot on your plate right now!  As someone said in an earlies post - take it one step at a time. 

It sounds like you have options, which is great.  It seems that a lot of folks on this forum, as well as the ck forum, have had very good experiences with radio surgery.  I would definitely have considered that option if my Ethel had been amenable!  Just take your time to sort through the options.

As for the whole MRI thing - I am VERY claustrophic (yep, I'll opt for the stairs most of the time in order to avoid the elevator!) and found that getting a mild dose of anti-anxiety drug (xanax, in my case) was very helpful. Of course, that means you should have someone drive you, since you'll be a little goofy.  It really does help, though.  And, definitely ask about open MRI!

I'm glad you reached out - you'll get so much support from people of  this board.

Debbi - B minus 24 and counting...

[jerseygirl]

Hi, Carrie,

Sorry you have to go through all those things but you will get through them. I have been in a very similar situation last year. My first tumor, removed also in 1988, was huge and regrowth was monitored for at least nine years before I acted and chose surgery again.  Thankfully, technology has improved tremendously and the second surgery was much easier, hard to compare even.

I watched the developement of radiation but my recurrence was at the brainstem and I  opted for another microsurgery. I had a more serious and difficult situation and my options were severely reduced. My advice to you is research and research, know your tumor configuration, location and the critical structures it is pressing on. It sounds like all options are open to you which is great. Regardless of your choice, I wish you the best! I will PM you about your Mom.

                                                Eve

 

[cmp]

Karen--I see that we are alumni of the same hospital! And I am definitely coming to understand that once you've had an AN, though it's healthy to "move on", it's not very smart to try and move it completely off your radar (which had my strategy these past 2 decades, even with facial asymmetry and dry eye conspiring to remind me about it daily!) I haven't yet reached a decision, but after hearing so many very different stories, am feeling a little more comfortable with the uncertainty (On the other hand, I'm still not happy waiting till May 28 for info from the radiation oncologist my neurosurgeon referred me to--first appt he has available--and may consult with another radiosurgeon in the meantime...)

Debbi--I see that your AN is roughly the same size as mine; was it the position that ruled out CK for you? And I see that your surgery is right around the corner--I'm sure you are very relieved to have the waiting almost over! I wish you a great result and a speedy recovery!

Eve--I have been thinking that I'd like to know more about the tumor location and how it differs from last time. Of course, the fact that Shands (where I got the '88 surgery done) has DESTROYED MY RECORDS (I kid you not) has made doing a comparison impossible. At this point, on a longshot, I'm trying to get my records from Ohio, where we lived for several years before moving to Massachusetts, and where I remember having my records forwarded for the one followup appt I had there (I really did think that this tumor was a one-time thing Did your neurosurgeons volunteer the info about position, etc, or did you have to pump them? Also, thanks so much for your PM, which I will be responding to!

Thanks again, everyone, for all your support and information. I feel so much more grounded and ready to tackle this than I did when I first posted!

[sgerrard]

but after hearing so many very different stories, am feeling a little more comfortable with the uncertainty...

That, Carrie, is the voice of a true AN'er. Getting comfortable with the uncertainty seems to be what it is all about. 

It is nice to see your picture, and I should say the same to Debbi, who posted hers recently as well. Apparently the thing to do now is get yourself a blog...

As for position, I got a hold of a copy of the MRI on CD, and promptly spend some time exploring it. They come with software that will let you roll the mouse wheel and move through the pictures in sequence, so you are basically exploring your own brain. Very cool, if you like that sort of thing.

Don't spend all of your time doing research, remember to continue with regular life as well - it is easy to get obsessive about it. Leaving it alone from time to time helps you absorb and digest all the information, and keeps your stress level down as well.

Take care,

Steve

[jerseygirl]

Carrie,

Everytime I went to the neurosurgeon, I asked him what cranial nerves are involved and what critical structures the tumor is pressing on. I could see on the CD and MRIs that the longest point of the tumor is attached to the brainstem. That is how I learned about the location. Those nerves and critical structures is what gives you the side effects when the tumor is removed and separated from them. My neurologist, for example, said that with this tumor I might have difficulties walking. Well, I never had any issues with the tumor although my right leg (AN side) felt funny at times. After surgery I do, although it improved tremendously and I now walk normally. There is still something remaining but it is going away and it has only been 9 months, so I am still recovering.  I do everything slow and steady: tumor growth, recovery after surgery...

I learned from talking to the neurosurgeons that whenever there is a recurrence, usually some cells are left on the nerves and structures to avoid damaging them. Thus, whenever hearing or facial nerves are preserved, the chance of recurrence goes up. Brainstem is another source of recurrence because in the old days the neurosurgeons left the tumor capsule on it to avoid any damage. That is probably why I had a line enhancing on the brainstem that was visible on the MRI for years before it actually became a tumor. Another way to get a recurrence is when the neurosurgeon cannot reach the tumor. My original neurosurgeon confessed to me years later that he left a piece attached to my brain because "it was hard to reach and friable". He was afraid to trigger the bleeding if he touched it. Maybe, he was right, I do not know. It is surely dissapointing to go through another surgery again after watching that tumor for years.

                  Eve 

[Debbi]

Hi again, Carrie-

Yes, you are correct that it was the position more than anythign else that dictated the course of treatment.  I talked to one surgeon who does CK and another who does GK and they both felt that the risk associated wtih post-treatment swelling would be too great given the fact that "Ethel" is snuggled up to my brain like an evil twin!  And, I'm okay with the decision to have surgery - it feels like the right decision.

Steve, yep, the blog is fun.  I really started it as a way to get stuff out of my head (ha, isn't THAT ironic!) and on paper.  It is mostly therapy for me, but I find that others enjoy checking in on my progress, too. 

I'm posting a pre-surgical question elsewhere - look forward to hearing from som of the "posties."

Springtime in NJ - ahhhh
Debbi

[4cm in Pacific Northwest]

Carrie,

My heart truly goes out to you. I can completely relate to being of the “sandwich generation�
http://en.wikipedia.org/wiki/Sandwich_generation
… and trying to balance the needs of looking after ones self. I compare this to when a steward on a plane explains the importance of putting on your own oxygen mask before assisting others. If you do not take care of yourself you cannot care for others.

There is more and more a leaning to a multiple step process in AN treatment of debulking a tumor surgically and then later treating it with radiation (gamma knife etc) later “if� there is re-growth. I understand that one of the gurus in this debulking and the post micro-surgical radiation treatment is actually Dr. Chan at Stanford.
http://www.stanfordhospital.com/search/PhysicianDetail?doc=2077
…as he is in the heart of the Silicon Valley and works within the latest developments in technology. I am wondering if it might be worth assembling copies of all your MRI's and send them to him - for his opinion.

I am pretty sure now, based on my reading and research, that the start of my tumor was not necessarily from a childhood head injury but probably more so the 1970’s radiation level x-ray used to take a picture of my skull later- and subsequent x-rays. Now with digital imaging we know the radiation exposure is far less than it was in our youth. I also completely empathize with you concerns with radiation exposure as this is one I have for myself too. However remember that cyber and gamma knife techniques are very precise and radiate to one specific area- unlike the x-rays and scan of earlier years. Technology has so far advanced… over the last decade.

To this day I still question how much stress releasing hormones contribute to tumor growth (or re-growth) … and it sounds like you have much stress.

You need to put your oxygen mask on first or you cannot be helpful to those in you care. As hard as this may seem- you need to primarily look after your medical needs… and build a support network for you. Currently it sounds like you are the support network for everyone else… but you need to identify who can be there for you.

Also I am questioning the time-line you were given. It is my understanding that AN tumors are slow growing?

Try to see the forest from the trees and see if you can get some more outside medical professional opinions as to what you can do… and how time pressing this re-growth treatment really is.

Here are some success stories I have book marked (as I too may need these later if I have re-growth). I have decided to mentally prepare that this could be a reality for me too – even if 99% of my tumor was removed. Maybe you might find these helpful?

http://anausa.org/forum/index.php?topic=5530.0
http://anausa.org/forum/index.php?topic=5469.0
http://anausa.org/forum/index.php?topic=3143.0
http://anausa.org/forum/index.php?topic=5166.msg46454#msg46454

Maybe contact those ‘posties’ with a personal message and get their perspective.

Cyber HUGS,

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