Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 276269 times)

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #360 on: December 29, 2015, 03:36:52 pm »
I waited too long for radiation.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #361 on: December 29, 2015, 04:39:10 pm »
I waited too long for radiation.

Hi...
So sorry to learn of your predicament and I note that your post indicates that the size of your AN is now 'ineligible' for GK treatment. However the current dimensions of your AN appear to be still within the range suitable for GK treatment as tumours up to 4cm have been considered suitable for such treatment. It would be of interest to learn what your consultant has concluded.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #362 on: December 29, 2015, 07:57:42 pm »
Hi,

Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.

Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.

It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.

Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery. 

I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.

In my unique situation with an aggressive AN, only surgery is now recommended.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #363 on: December 30, 2015, 05:25:27 am »
Hi,

Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.

Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.

It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.

Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery. 

I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.

In my unique situation with an aggressive AN, only surgery is now recommended.


Hi again Mc...

Many thanks for your succinct response and very best wishes for a successful outcome.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #364 on: January 02, 2016, 09:40:19 am »
Hi,

Yes, I was thinking along the same lines; however, I was informed that since my tumor is aggressive (grew 5mm in as many months) that I am no longer an excellent candidate for radiation.

Aggressive AN's almost always need salvation microsurgery after some point after radiation treatment, as radiation can take up to 3 years to start working.

It is my understanding that, as you mentioned earlier, radiation can successfully be used on much larger tumors, but that is only if the tumor hasn't demonstrated aggressive growth in the MRI history.

Trust me, my heart absolutely shattered when I heard this news and "read the writing on the wall" that I would need microsurgery. 

I'm not about to second-guess the advice of world renowned top radiation specialist. In my opinion, a person must possess a lot of integrity to suggest surgery when they could just as easily
"cash the radiation check" that I was so eagerly willing to do.

In my unique situation with an aggressive AN, only surgery is now recommended.


Hi again Mc...

Many thanks for your succinct response and very best wishes for a successful outcome.

Regards

Derek

Mc...

I have re-read your original post in this thread and have to admit to having some concerns relevant to your decision to opt for microsurgery particularly so should I or anyone else have the unfortunate same circumstances befall them in the future. With that in mind I have consulted with a renowned states based Doctor who is a Radiation Oncologist with almost 40 years experience and who specialises in the Cyberknife process. I outlined the situation that you currently find yourself in and his response was (quote) "It could be treated with GK or CK. I see no reason why that growth rate should change things" (unquote)

I considered it incumbent upon myself to obtain professional clarification so as to assist others who may have to contemplate treatment options in similar circumstances.

As before Mc...my best wishes to you for a successful conclusion.

Regards

Derek

Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #365 on: January 03, 2016, 06:03:58 am »

I considered it incumbent upon myself to obtain professional clarification so as to assist others who may have to contemplate treatment options in similar circumstances.
 

Derek


Likewise.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

rupert

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #366 on: January 03, 2016, 11:14:13 am »
Can you describe what you mean by extension in your AN measurements.

As far as treatment, as been said many times. It's what feels right to you and what you feel is best for you.  That said,  lets say you weren't diagnosed in 15 and you were just diagnosed now and radiation was mentioned as a good option for the size of your AN?  We just have no idea how these things will grow or not grow.  It may not do anything for years nobody really knows. For what it's worth it doesn't matter if it's your thoughts or a renowned doctor it's just guessing as to what it will or will not do.  Please take this with a huge grain of salt, it's just based on years of being around this forum.  In reality, the chances of regrowth are going to be the same no matter what treatment you go with. 

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #367 on: January 03, 2016, 11:27:27 am »
Coming late to the conversation...  The MRI that revealed the 5mm growth...was done it done at the same place as the original MRI for diagnosis?   I feel it important for consistent measurements one must use the same machine, same tech, same Radiologist. 
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #368 on: January 03, 2016, 01:45:07 pm »
Trust me when I tell you that I've done my research since my diagnosis on June 26, 2015. I have a college degree and I understand the bias in statistics, etc.  Obviously, I would much rather have CK than traditional microsurgery if CK is what is best for success. Naturally, I want to do what's best for me, for the long run, instead of having complicated "salvage microsurgery" after failed radiation.

Derek, there are only a few world renowned stateside CK specialists with almost 40-years experience. It sounds like were talking about the same doctor. The other doctor with that many years experience specializes in gamma knife.

Yes, it was the exact same "open MRI" machine which I used 5-and-a-half months earlier, and the exact same radiation tech signed off on the report. I need to go to this specific MRI as it's the only OPEN MRI for my size of 6'3 tall, 375, size 16 shoes.

As for extension, it's the part of the tumor extending from the "intracranicular". My tumor went from 3mm extension to 8mm extension in just over 5 months.

I do think the opinion of a world renowned CK specialist who's been doing this for decades has a lot of weight. He could have just "cashed my check" and proceeded with radiation treatment; however, he made a conscious decision to point me in the microsurgery direction.  Getting a "second opinion" after the world renowned expert says "no" feels like I'm asking for trouble. Obviously if you look long enough there will be someone willing to do almost any procedure$$.

Perhaps I should reword my comments and say that according to a world renowned CK specialist I may still be eligible for radiation, but radiation at this point it's highly not recommended given my unique situation of aggressive AN growth. Microsurgery is now recommended.

Best wishes and good luck to all.
« Last Edit: January 03, 2016, 01:55:26 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #369 on: January 10, 2016, 06:09:32 am »
After receiving several second opinions, apparently many surgeons and radiation specialists have a big difference of opinion with regards to the treatment of aggressive or fast-growing acoustic neuroma tumors.

I am not a doctor, but most radiation oncologists put their success rate of tumor control between 95%-98% depending on tumor size at time of treatment; however, with respect to fast-growing "aggressive" Acoustic Neuromas the success rate with radiation drops significantly down between 80%-89%.

This is according to the world renowned radiation oncologists I've consulted with.

While still "good" odds, one has to consider all of this new information when considering microsurgery vs. radiation treatment and whether-or-not radiation still remains a "good" option for your individual case especially while "salvage microsurgery" may very well be likely down the road if treatment failure occurs.

Derek, thank you for posing the question to Dr. Medbery on the CK forum. At the end of the day, it appears there's a 50/50 split from all the specialists I've consulted with in regards to the appropriate treatment regarding fast-growing or aggressive AN's.

Best wishes.
« Last Edit: January 10, 2016, 06:16:02 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #370 on: January 10, 2016, 01:28:45 pm »



Derek, thank you for posing the question to Dr. Medbery on the CK forum. At the end of the day, it appears there's a 50/50 split from all the specialists I've consulted with in regards to the appropriate treatment regarding fast-growing or aggressive AN's.

Best wishes.
[/quote]

Hi Mc...

Many thanks for updating us re your research and your conclusion concerning the conflicting views relevant to the various expert opinions. You certainly have a dilemma and of course the ultimate decision will be a personal one but whatever treatment option you decide upon it will be the right one for you.

From a personal perspective, upon diagnosis in 2002 I was advised to have immediate microsurgery but decided to opt for conservative management following my in-depth research into all aspects of the relevant available treatment options. I am now about to enter my 15th year in the 'watch & wait' mode with a reduction in the size of my AN and thankfully that has proved to be the correct choice. If I was in your position I would continue with 'watch & wait' and have another MRI scan in June. These tumours are so unpredictable that you may well find that there has been no further increase in the growth rate and you could then continue with conservative management with regular MRI scans to monitor the situation. However should the June scan results show that there has been a further increase in the growth rate then I would indeed consider early invasive treatment but I would first go with stereotactic radiosurgery then ultimately opt for excision should the radiosurgery prove unsuccessful. Just my 'few pence' (or cents) worth!

Do continue to keep us updated.

Best Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #371 on: January 10, 2016, 05:43:52 pm »
I agree with what Derek has written.

Rushing into treatment unless there is a real life and death scenario doesn't make sense to me.  I had two AN heavyweight surgeons tell me with urgency that I needed surgery and I needed it sooner than later.  i chose to wait and watch  saving hearing is one item put forth by the professionals to hurry to treatment.  facial paralysis is another scary complication with these tumors - WITH OR WITHOUT treatment.  Have you made any lifestyle changes since diagnosis?  Right now you are most likely scared and stressed.  Brain surgery is no picnic and you need to be sure it's what you need.  Can you wait it out til June 2016?
« Last Edit: January 10, 2016, 06:06:18 pm by LisaM »
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

mcrue

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #372 on: January 14, 2016, 05:46:02 am »
Each case in unique, and as you know every AN is different. Nobody has that crystal ball which can predict how someones tumor will progress.

My case was certainly unique in a few aspects.

I had "suicidal tinnitus" or "catastrophic tinnitus." I was off the charts loud. In most cases, it usually takes 6 - 18 months for newly diagnosed patients with severe tinnitus to acclimate to their new tinnitus (with the help of a hearing aid or masker).

It's been about 4 or 5 months since starting the tinnitus retraining therapy with the hearing aid, and recently I haven't worn my hearing aid in 2 weeks....so MUCH progress has been made indeed.

I started out at 100, now I'm down to 9.

I was concerned if I had radiation treatment that it would kill my hearing nerve, and therefor I wouldn't be able to treat my tinnitus anymore with the hearing aid. This is valid concern, and a reason why some doctors won't treat you with radiation because they're fearing your tinnitus will fluctuate/increase and ruin your quality of life again - making you suicidal.

Most radiation treatments have hearing loss/SSD associated with them, and also increased tinnitus, as a side effect. Some doctors may refuse to treat you if they know you were previously suicidal because of your tinnitus. They may think your quality of life might fluctuate back to the point of being suicidal and so they may recommend microsurgery. Even if they've never spoken to you....just email communications.

Others doctors will evaluate the exact same info and decide your still an "excellent" candidate. Same information ...different opinions from doctors who perform same treatments.

Combine this with the fact my AN was a fast-growing "aggressive" tumor and some radiologists will certainly shy away from treating you. While on the other hand, some doctors will still say you're an "excellent" candidate.

I'll never know if it's more about protecting their excellent local statistical outcomes at their facility, or really for the greater "benefit of the patient" and for protecting my health, or a difference in personal politics.... or on the flip side if they're accepting just for the money. I like to believe most doctors have our best interest at heart (even though I've seen just the opposite with other family members dealing with doctors).

Anyhow, if one CK or Gamma Knife doctor says "No", I can simply go down the street to the next guy who will say "Yes". And they know this.

But is it the right thing to do?

It's such a frustrating position for a measly lay person to be in, not to mention dealing with a brain tumor.

Derek, I apologize for hijacking this thread. I guess I should have started a new topic. The bottom line is, like everyone else, each case is special. Mine shouldn't be used as a general example for all Acoustic Neuromas.

LisaM, it's interesting that you mentioned some of the top surgeons recommended surgery immediately, only to have your tumor not grow and shrink. In my family, our genes make everything in our body grow to the max. I'm 6'3 tall, 370lbs with size 16 shoes.

Lifestyle changes?

It's very difficult to make lifestyle changes when you're depressed and facing a brain tumor, plus a  litany of other LIFE issues. I know I need to lose weight, but it's never easy, especially in Michigan weather.

I think it's best to treat it now before it gets too big and I won't be a candidate for radiation. But then again, even when my tumor is small, some radiation specialist still refuse to treat it. Go figure.

Perhaps I should have kept my mouth shut, and not have asked so many questions   ???

Best wishes to everyone on their journey.


« Last Edit: January 14, 2016, 09:24:47 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #373 on: January 14, 2016, 10:34:30 am »
ANs are indeed a personal journey.  Best wishes for a successful treatment, whichever you chose. 
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #374 on: April 11, 2016, 10:40:23 am »
Hi there 'Cityview'...

Many thanks for your kind comments which are greatly appreciated.

You certainly have had more than your fair share of health related problems and it is to your credit that you have dealt with thyroid cancer simultaneous to your acoustic neuroma which must have been enormously stressful for you and your family to contend with. It is particularly pleasing to know that you have had the 'all clear' relevant to your thyroid problem...well done you!

I have perused your previous posts and it is patently apparent that you have wisdom in abundance evidenced by your constant quest to probe all aspects of AN related matters not least those relating to invasive treatment options. Your posts are full of logical and reasoned argument which is invaluable particularly to those newly diagnosed who are often panic stricken and very liable to making rash decisions which could be regretted at a later date.

I was in similar thought when diagnosed almost 15 years ago and fortunately, just as you did, I decided not to opt for any form of early invasive treatment until I had carried out in depth research, a decision that I am so very glad that I made. I do wish that folks would realise that whatever invasive treatment is eventually opted for they will still be subject of 'watch & wait'  ad infinitum as regular MRI scans will always be required to monitor for tumour regrowth etc. My maxim has always been and will always be, to stay in 'watch & wait' under the guidance of a trusted consultant and with regular MRI scans until and IF circumstances / symptoms dictate otherwise.....oh and I do hope that your cat also managed to survive it's personal health crisis!

Best Regards

Derek



Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.