Phone consultation - House Clinic

[judyl]

I had my phone consultation with Dr. Miller at House, who said my tumor margins could not be clearly determined because my latest MRI (May 2018) was done without contrast, so she could not definitely tell if there was any growth. She suggested my next MRI, which I'm planning to have done this month, be completed with contrast. She also said if my growth averaged 1 mm. per year, and I wait 10 years, it will be much larger and surgery would be riskier due to the size and my age (I'm 64 now). 

She's not a fan of radiosurgery because it usually doesn't reduce the size and it still can grow. Then if surgery is needed, it is even more challenging after radiation.

I was hoping to avoid contrast but in light of her comments, and the size/location of my AN, I am thinking I will have it done, at least this time. I will send it to House after the MRI, but if there is growth and anyone is recommending treatment, I will seek out another opinion, perhaps at Johns Hopkins.  I live in the Philadelphia area.

I also wanted to mention that my 20 minute conversation with her was longer than my visit to Dr. Willcox at Jefferson who charged me for the visit. 

Judy

[rupert]

"She's not a fan of radiosurgery because it usually doesn't reduce the size and it still can grow. Then if surgery is needed, it is even more challenging after radiation."

This forum has many people that have had surgery and their tumor grew,  so  did she give you any information on tumor growth after surgery?  House is very biased on surgery.  Not that it is a bad thing, you just have to remember you're never going to get another recommendation from them other than surgery. Rate for regrowth are the same for surgery as radiation. Small but, can happen.

"usually doesn't reduce in size"   Another biased opinion.  Many people's AN reduce in size after radio treatment. In my case the AN reduced in size by half over 8 years.

Surgery after radiation can be more challenging?   Maybe, or maybe not.  Even doctors from House have said that in the hands of very experienced surgeons it wouldn't make a difference.  Some tumors are just naturally harder to remove no matter.  Every case,  and every one is different and there is just no way to know until somebody works on it.

I would highly suggest more opinions

[judyl]

Thank you for your comments. Believe me, I went into the phone call with my eyes wide open. I am aware House favors microsurgery, as does Johns Hopkins, while Jefferson and Pittsburgh lean more toward radiosurgery.  I would honestly like to avoid both if possible.

I'm glad to learn that your AN did reduce so much in size following your procedure. Do you mind sharing where you had it done, the current size, and any residual symptoms you had after the radio?

The whole point of my post was to share my experience and, and of course, learn from others.

[ANSydney]

I wonder who favors/leans towards observation.

[rupert]

judyl,  I'm not sure what their reasons might be for bias one way or another at different facilities. Excuse my candor on the subject.  Maybe House doesn't have radiation equipment so recommending that would send their patients elsewhere.  Who knows.  I can only speak for UPMC in Pittsburgh.  They have many fine surgeons there and that's where I had my treatment.  Their surgeons who specialize in AN's, I felt were very qualified and they reiterated that they do about one AN surgery a week.  They also ran through all options including watch and wait and radiation.  I did not see a lean either way.  The same with my consult with the gamma knife center. So I would disagree somewhat that Pittsburgh leans one way or another, I didn't see it.  That was 8 years ago.   All options were again brought up.   For me personally, I would feel very uncomfortable being presented just one treatment option knowing there's more available.
 My AN at diagnosis was 2.2cm by 1.6cm outside of the ear canal.   It is much smaller now by half and has receded off the brain stem .  I do understand and you should to that individual results may vary.  My hearing was gone at diagnosis but, my balance has improved.  It was never that bad but, I did have some episodes of vertigo at times.  All is good now.  There's many. many good surgeons all across the Country.  I understand completely how hard this all is.

[notaclone13]

I have heard that Vanderbilt is following about 300 patients on W&W, so I feel that they have a preference for observation. Perhaps Mac84 could comment on this further. When treatment is necessary their strength is surgical approaches, although they are capable of performing radiosurgery as well.

[Citiview]

One thing to keep in mind is that the growth of the tumor may be slower than 1 millimeter per year and also it may be dormant some years. Also some of them stop growing. So it's hard to say how big something might be in ten years.
If a person chooses conservative management, or observation, at the beginning, they can always change their mind later if things progress and there are new symptoms or a lot of growth.

[ANSydney]

One thing to keep in mind is that the growth of the tumor may be slower than 1 millimeter per year and also it may be dormant some years. Also some of them stop growing. So it's hard to say how big something might be in ten years.
If a person chooses conservative management, or observation, at the beginning, they can always change their mind later if things progress and there are new symptoms or a lot of growth.

Hear hear.

[Citiview]

There's a lot of good info here about quality of life.

It mentions that many vs do not grow.

https://thejns.org/view/journals/j-neurosurg/122/4/article-p833.xml

My comments have nothing specifically to do with House, just a discussion about quality of life, necessity of treatment etc.

Mayo is working on the ten year quality of life study right now. Maybe the results of that study will be helpful for the next generation.

Recently I spoke with someone who's been in watch and wait for over twenty years and they know of someone who's gone longer.

Not saying that's the norm but it does happen.

[ANSydney]

Cityview, that is a great paper. I have read it before, but it's good to re-read it again.

Figure 1 is a good summary for quality-of-life following which of the three choices are taken. The overall ranking is that with regards to quality of life, Observation comes first, Radiosurgery comes second and Microsurgery comes last.

I love the paper's conclusion, at the end of paper (with my emphasis underlined):

Overall, the HRQOL differences following observation, microsurgery, and SRS are small. The diagnosis of VS, rather than treatment strategy, most significantly impacts patient quality of life. Therefore, further improvements in patient counseling regarding realistic long-term expectations of disease, as well as offering pre- and posttreatment psychosocial support, may provide the most impact on HRQOL improvement for patients with VS.

Since a significant number of tumors do not grow after the time of diagnosis, and because intervention does not appear to confer an HRQOL advantage over observation, small- and medium-sized VSs should be initially observed, while active treatment should be reserved for patients with unequivocal tumor growth or intractable symptoms that are amenable to treatment. As disease-specific HRQOL outcomes following SRS appear to be minimally better than microsurgery, we believe that SRS should be offered to those with growing tumors and minimal symptoms, while microsurgery should be considered for patients with symptoms associated with mass effect, enlarging cystic tumors, or in cases of patient preference. Moving forward, studies assessing HRQOL in VS patients should prioritize use of validated disease-specific measures, such as the PANQOL, given the significant limitations of generic instruments in distinguishing between treatment groups and tumor versus nontumor subjects.

It looks like those of us in the Observation group is the way to go unless there is "unequivocal tumor growth or intractable symptoms". My tumor has not grown in the 2-and-a-bit years since diagnosis and my symptoms are mild.