Just when I was relaxing .....

[CHD63]

Three years ago this week, a 2.6 cm acoustic neuroma was removed from my left side, via retrosigmoid (suboccipital) approach.  The first MRI at six months stated that there was "some enhancement .....may be due to post-op change or residual tumor."  MRI at one year stated "enhancing area .....compatible with a residual intracanalicular tumor."  MRI at two years was not done with narrow slices, but the impression was "stable MRI of the brain."  So I relaxed.  Now the recent MRI (at three years out) states "enhancing mass seen ..... measuring 1.3 cm .....consistent with recurrent acoustic neuroma."

My neurosurgeon wanted a current audiogram, which I had done last week.  Wonderfully, my hearing is the same as it was last year and the year before.  Therefore, my neurosurgeon wants to wait for any further surgery until I have experienced significant hearing loss and then he would recommend doing a translab approach to completely remove the tumor.

I am troubled on a couple of fronts ..... what was the size of the enhancement at six months, one year, and two years?  How much did it grow in the past year?  Do I really have to wait for further hearing loss (which he said is inevitable anyway with a growing tumor, even if I do nothing) or facial nerve involvement before seeking additional treatment?

OK, here's the dilemma ..... I had massive doses of radium in my nose when I was a kid, following a tonsillectomy/adenoidectomy (still remember the awful burning).  Does that preclude having any current radio-surgery treatment?  Are there any stats out there on radiation treatment of recurrent tumors?  Any different side effects from radiating a regrowth as opposed to initial tumor?

My initial tumor was a rapidly growing one ..... from not seen to 2.6 cm in about 15 months ..... so I was told that radiation was not recommended on fast growing tumors.

So there you have it ..... just when I was relaxing .....

Clarice

[Chris P]

Clarice,

   I am sorry to hear about your problem.  I do not have any knowledge to offer I just wanted to let you know we are pulling for you and that all will go well.  Have you thought of getting a second opinion.  I did that at one point and it really helped me .  It may help you decide what to do next.  Hang in there. 

Chris P.

[TJ]

Clarice

I am so sorry to hear about the regrowth.  Although I can't offer any advice, you have shown me that once in this wonderful world of AN's we always need to keep our guard up.  Please keep us informed on your journey.

Best of Luck

TJ

[wwarr]

Clarice,

I want to tell you to keep your chin up!!! I am so sorry you got this news of regrowth.  It is the news we all dread to hear but I do know that you can do this! You have offered so much encouragement to so many and I want to give it right back to you at this moment!! I am sending you a big hug!!

Do you have to wait until facial nerve problems could arise?  I understand the hearing aspect of waiting especially if they're planning on removing it via a translab but I understand your concern with facial nerve problems.  If you had a fast growing tumor in the past, aren't they concerned with the possibility with this tumor regrowth?  Can you get a second opinion of what course you should pursue.  Go with your gut feeling.

Hang in there!  My thoughts are with you.

Wendy

[Jackie]

Clarice,

So sorry that you have these new issues to deal with. You are such a vital part of this forum and have been so generous with your love and advice,
seems so unfair that you have to deal again with this dilemma. You must get answers to your questions before you can make an informed decision.
Perhaps another fresh opinion would be helpful??? I will keep you in my prayers,
Blessings to you,
Jackie

[CHD63]

Many thanks Chris, TJ, Wendy, and Jackie for all your comments and prayers!

Yes, I am mulling over whether to send my MRI(s)/Audiogram(s) to another medical center for an evaluation.  Main thing I have to keep in mind is whether I want to sever ties with my neurosurgeon (whom I respect and trust) if I opt to go out on my own with another approach to treatment.

I really did not want to walk this road ...... but then, none of the rest of you did either!     Whatever happens, we are on the same (but at times with very different variations) journey.

Clarice

[moe]

Oh Clarice,
I'm so sorry to hear of this. The thought of having to go through it all again....
We are here for you-hang in there, and think positively. You are a great inspiration and source of comfort for so many.
Maureen

[Jim Scott]

Hi, Clarice ~

I'm sorry to learn about the apparent re-growth of your AN, 3 years after your removal surgery.  This is every AN patient's greatest concern and when it occurs, it has to be discouraging.  However, you obviously realize that being worried may be natural but accomplishes little and you're seeking a solution that will work for you.  That's the sensible approach and I'm not the least bit surprised that its the one you chose.   At this point, I wouldn't be so presumptuous as to offer specific advice  but I wouldn't rule out another surgery.  Still, radiation still seems like the logical approach but your concerns about the prior radiation you received as a child are quite relevant.  A federal advisory committee recommends that the lifetime radiation exposure be limited to a person's age multiplied by 1,000 millirems (example: for a 65-year-old person, 65,000 millirems).  Frankly, I'm not conversant with radiation measurements and they seem rather arcane to me but I'm sure you'll soon be posing your radiation questions to a radiation oncologist, who should be able to offer you the answers you need to have to plan your next move on addressing this newly-discovered tumor re-growth.  Whatever the future holds Clarice, I'm confident you'll face it with an accurate mixture of aplomb and common sense.  You'll certainly have my unequivocal support and the support (and prayers) of everyone that posts/reads on these forums.  I know that I can state with confidence that we all wish you success as you venture forth on yet another quest to rid yourself of your obdurate AN.     

Jim

[mk]

Hi Clarice,

Oh, I am so sorry to hear about this development. It may be OK to W&W this for a while, but in the meantime, it wouldn't be a bad idea to get an opinion from a radiation oncologist. Your concern about the total dose of radiation seems perfectly valid, but given that stereotactic radiation is much more focused, it might be like comparing apples and oranges. Wouldn't hurt to ask specifically about it.
When did your doctor say that you should get your next MRI? Can you ask him to have it a bit sooner, so that you can get some idea about the rate of growth (hopefully this time it will be a slow growing one).

My best wishes, please keep us informed.

Marianna

[Kaybo]

Sweet Clarice-
You know that you have been & will continue to at the top of my prayer list!

You know I love you & we will get through this!

K  

[CHD63]

I knew I could count on the support from all of you!  Thanks Maureen, Jim, Marianna, and Kay for your kind words and advice.  I have known about the regrowth for a couple of weeks, but just could not bring myself to post it.  I just sort of felt like I would be letting everyone down ...... when regrowth is every AN patient's fear.

Now I am relieved that I did post so I can feel the warmth of your care and your prayers.  Thank you is a very inadequate expression of how grateful I am to all of you!

Clarice

P.S.  Keep those pieces of advice coming ..... I am taking it all in and I know the answer will become clear.

[sgerrard]

Dang, just when everything was settling down nice and quiet. Clarice, I hope this is A) a glitch, or B) something you can watch and not need to do anything with.

Your questions, though, would be great ones to post on the Cyberknife forum, where Dr. Medbery or Dr. Spunberg would be happy to answer them. Just post it in the Acoustic Neuroma section:

http://www.cyberknife.com/Forum.aspx

My guess is that as Marianna pointed out, the focused nature of AN radiation treatment would mean it is not a problem, and I don't know of any study suggesting that second growths are harder to treat. Also note that life time radiation limits are not so strictly enforced that they over-rule good judgement. Life-saving radiation treatment would not be denied to a terminal cancer patient merely on the grounds that treatment would pose a risk of future cancer, for instance. It is always in the end a question of what is the best approach for your specific case.

Meanwhile, stay cheerful, there is no reason not to be. 

Steve

[Suu]

Yes, I am mulling over whether to send my MRI(s)/Audiogram(s) to another medical center for an evaluation.  Main thing I have to keep in mind is whether I want to sever ties with my neurosurgeon (whom I respect and trust) if I opt to go out on my own with another approach to treatment.

Hi Clarice.  I'm pretty new here but I can see how much you are loved and respected on this forum so my prayers are also going your way.

If you send your MRIs to another surgeon for a second opinion will you need to sever ties immediately with your current doctor or can you simply get a second opinion and go from there whether you want to go with another doctor?

Whatever you decide, it is going to be in your favour and for your wellbeing.  I wish you all the best of luck that I can send.

Hugs,
Suu

[ppearl214]

Clarice

First and foremost.... HUGGLEZZZZ!!!!      

I'm with Steve...... maybe worth checking with the CK forum docs as they are well versed on this topic.  Me still thinks relaxing is in order and hoping the docs (Medbery/Spunberg, who usually answer AN radiation questions) can help the cause.

xoxo
Phyl

Dang, just when everything was settling down nice and quiet. Clarice, I hope this is A) a glitch, or B) something you can watch and not need to do anything with.

Your questions, though, would be great ones to post on the Cyberknife forum, where Dr. Medbery or Dr. Spunberg would be happy to answer them. Just post it in the Acoustic Neuroma section:

http://www.cyberknife.com/Forum.aspx

My guess is that as Marianna pointed out, the focused nature of AN radiation treatment would mean it is not a problem, and I don't know of any study suggesting that second growths are harder to treat. Also note that life time radiation limits are not so strictly enforced that they over-rule good judgement. Life-saving radiation treatment would not be denied to a terminal cancer patient merely on the grounds that treatment would pose a risk of future cancer, for instance. It is always in the end a question of what is the best approach for your specific case.

Meanwhile, stay cheerful, there is no reason not to be. 

Steve

[CHD63]

Steve .....  Thanks for the suggestion about the Cyberknife Forum, I will do that.  I had thought for 2 1/2 years that what was visible on the MRIs truly was scar tissue so it was unsettling, to say the least, to discover it was residual tumor that has now begun to grow.  I will probably watch and wait for awhile ..... I'm just not very good at that! 

Suu ..... No, I  would not have to sever any ties if I get second or third opinions ..... only if I were to act upon any different recommendation.  He does not do radio-surgery and I did not talk directly with him.  However, I feel strongly he would not operate on me if I had radiation and it failed to arrest the growth.

Thanks for the huggles, Phyl!

Clarice