Regrowth questions and scared

[katherine]

After 7 years from surgery I thought I was done with AN and on my way to being as normal as possible, but my tumor has regrown to 1.2 cm.  I know I am naive, but I didnt think it possible to have to go through this again and I am distressed.  The doctors want to do radiation to kill the growth.  I don't know where to begin on research and am worried because my first surgery was so hard on me.  I read some comments from people who had responded to other messages,but I dont know how to contact them.  Could someone give me some guidance who has had a regrowth.  Thank you.  Katherine

[Omaschwannoma]

Hi Katherine,

I am three years post microsurgery and cannot help you with "regrowth" issues you are having.  I'm sorry to hear this and surely understand your concerns about revisiting surgery.  To contact others here in the forum on a more personal basis just "click" on the symbol "personal message" located below their "online name" and that will get you to where you want to be.  Hope this helps and no doubt others will be responding with "regrowth" comments for you.

[jerseygirl]

Katherine,

I had a regrowth and I thought what I went through the first time was unimaginable, scary, left me with too many issues and just way too much for me and my family. I am happy to say that the second time around was a thousand times easier although it was not nothing and the first surgery matters (for better and worse). Having said that, radiation is a viable option for you depending where the tumor is located. I would start by learning what the tumor is, what it is pressing on and what each surgeon proposes, be it microsurgery or radiation. I am sure you would rather not deal with it! Don't we all! However, in the end, chances are overwhelming that you will be OK.

                       Eve

[Mtn Gal]

Katherine,

I am so sorry to hear that your tumor has regrown.  What type of surgery did you have seven years ago?  Did they remove the whole tumor?  I know they sometimes say "we got it all", but there can be a couple of cells left and they can start to regrow.  Did you have any symptoms with the regrowth?

My doctor told me they would keep giving me MRI's until we reached the seven year mark and if it had not started to regrow by then, it probably wouldn't and they would release me from their care.  I guess they don't know everything.  I am 19 months since my retrosigmoid surgery and mostly about 98% back to normal.  I am blessed with no complications except for single sided deafness, occasional wonky head feeling, and I'm learning to live with these. 

There is a lot of info about radiation treatments on this site, so I'm sure you will find a lot of answers to your questions.  You have options for treatment, so take time to study and evaluate each one and you will find what is best for you.   

I understand how upset you must be, as any of us would be too if we received news of regrowth, especially after seven years.  Keep your chin up and know that you can find support here and we do care about you.  You beat this thing once, and you can do it again.   Take care and keep us informed on your situation.  You will be in my thoughts and prayers.

Mtn Gal
 

[Jim Scott]

Hi, katherine:

Like all the previous posters, I'm sorry to learn that you have a AN re-growth.  This is something many AN surgical patients fear.

Unfortunately, tumor re-growth does occur.  It is quite problematic for surgeons to totally remove every cell of the tumor, as it resides in a place that is both hard to see and reach and of course, some sensitive, important nerves are often very involved with the sticky tumor substance making 100% removal almost impossible.  Sometimes, just a few cells left intact can regrow into another acoustic neuroma, although this is relatively rare, but obviously, not unknown.

I would assume (and hope) that you'll be a candidate for (non-invasive) radiation treatment of your 'new' AN  but your doctor will have to make that determination.  Meanwhile, try not to become too anxious over this unpleasant development because there is a very good chance that you'll not need surgery, again. 

Jim

[cookiesecond]

Hi Katherine,
I certainly echo the previous posters sentiments and will  keep you in my prayers. I sure hate that you are having to face all of this. Please remember we are here for you.I am also intersted in the facts surrounding your first surgery. Did the doctors think they had removed the whole tumor?
I was a surgery patient and of course we all fear hearing the words new growth. I really thought by 7  years you would be in the clear...
Please keep us posted and try to remain positive.
Love and prayers,
Lynn

[Jwh]

Hi,

I was rediagnosed last January with a regrowth and was six years post op at that time.  I had retro. surgery  performed and was told by the drs. that it was 100% removed.  I did have serial MRI's performed after the surgery and was told I had scar tissue.   I guess not!  My regrowth is 8 mm and I'm in the wait and watch mode.  I recently had my six month follow-up MRI which showed no growth.  I will opt for surgery again and do the Translab Approach.  I'm not comfortable with radiation as I'm only in my early 30's.  (That is only my opinion on it).  I know that many people have done gamma knife and have been very happy with it.

It took me some time to get use to thinking about this crap again but I've come to terms with it.  Give it time  to sink in and you'll get things sorted out.  If you have any questions, please let me know.

Thanks,
Jen

[Larry]

katherine,

I'm sorry to hear of your situation. i had middle fossa surgery 5 years ago and was told that theu got it all out - yeah right! another lie (just one of many i received) anyway, 2 years ago, it was discovered on an MRI. I am currently in watch and wait mode as my regrowth has not grown significantly in the 2 years. i try to forget how big it is now, i think its 9mm but i can't recall.

Since my surgery 5 years ago, I have had debilitating headaches every day. i have not had a headache free day (not one). i swore black and blue following my surgery that i won't go through that again. I am staying in watch and wait mode until my re-growth starts to either have an impact on my health or goes into a growth spurt. Even then it will be radiation treatment for me.

I have listened and absorbed the many comments and advice by other posters on both radiation and surgery (best reference are those who have undergone the process) and decided that radiation would be better for me.

Everyone's situation is different though. You need to consider the following.

1. Can i mentally cope with watch and wait - knowing the an is inside me?
2. Not sure if you have any hearing in your an side but if you do, you will lose it with follow up surgery but there is a chance to retain some with radiation
3. radiation treatment has a small risk of turning the tumor malignant
4 maybe a higher risk of facial paralysis with surgery (not too sure on this one though - needs research)
5 dollars - I know shouldn't play a part but the financial consideratioon should be compared at least - depending on your financial position etc etc
6. Choosing the method of radiation (single shot or fractionated)
7 choosing the surgery method (3 different types but with a regrowth it would probably be trans lab)
8 have a look at the specific topics in this forum and then email the appropriate people.

i don't mean to frighten you more that you already are re the above but it's not that scary when you sit down hard focussed and say - do i want another op -if no then, its radiation treatment - the only decision then is - which one. Thats of course if you can handle watching and waiting which is the preferred method.

email me by hitting the icon below my picture if you need any more comment

Laz

[lori67]

This may be a dumb question... but I'm going to ask it anyway... is regrowth a concern post translab also?  It seems like a lot of you have had retrosigmoid and I'm not really as familiar with that.  I was also told "we got it all" but now I'm starting to wonder if this is a possibility.

I have to see my doctor tomorrow and I guess I'll ask him at that point, but figured I'd ask anyway.
Lori

[jerseygirl]

Lori,

Translab has the least chance of regrowth, much less so than retrosigmod. This is because the surgeon "see" the field they are operating in better and remove the hearing apparatus in the process. The recurrences are more possible in the cases where hearing and facial nerves are completely preserved. This is because the surgeons leave a few cells behind which may or may not be visible on the MRI either not seeing them or hoping they won't grow. Another potential site of recurrence is brainstem which the surgeons are afraid to damage and which big tumors squash. My problem was primarily brainstem followed by the facial nerve. I had a really big tumor the first time.

                  Eve

[jcinma]

Hi Katherine,
I had retrosigmoid surgery back in 1993 for a 1cm AN. Post op report stated total removal. I had an MRI 1 year later that showed nothing. In 2004 the AN side of my face started to go numb and a follow up MRI showed a 3.2 regrowth.  I was scared beyond belief as I was an 'educated consumer' and I had a terrible time for a few years after my surgery with severe headaches.  I only wanted radiation but was not a candidate as there was some brainstem compression. I  had the tumor debulked in 2005 to preserve the facial nerve and then follwed up with FSR.  Post op after the second surgery I have not had any headaches!! I so understand your worries and fears having been there myself. I was more frightened the second go round. You have all options available to you, check them all out.  If I can be of any help I am here for you-
Jane

[katherine]

Thank you to all who have responded to my request.  I am overwhelmed with the support and advice.  I feel like I can get through this again by doing my research and praying that God gives me the strength.  Thank you again.  Katherine

[lori67]

And Thank you too, Eve.  You were right. My doctor said it's not an issue with translab since they basically took everything out. He said that as long as my one year follow up MRI is clear, I'm done!!  Well, with him anyway.. there are stilll the hearing and PT issues..

Thanks.
Lori

[Angela]

I'm not comfortable with radiation as I'm only in my early 30's.  (That is only my opinion on it).  I know that many people have done gamma knife and have been very happy with it.

i now 'watch & wait' my "possible" regrowth and am told that radiation can easily zap it, if needed after my next mri. 
i too am concerned about the effects of radiation, including secondary cancers.  i'd be interested to hear your opinions.

[Larry]

Hi guys,

I'm not quite sure that Translab gives a better result (re-growth) than the others statsitically but theoretically it should.

Even though i had Middle Fossa, I had clear MRI's 1 and 2 years post op. It was the third year that it grew back so my advice is to have annual MRI's because if you leave it and it has grown back for some time, you could be facing a more invasive procedure than if you caught it early. My growth almost doubled in size in 12 months after being dormant for 3 years. So they can take on a rapid growth spurt


laz