Author Topic: How long between diagnosis and actual treatment?  (Read 3396 times)

Debbiemg

  • New Member
  • *
  • Posts: 9
How long between diagnosis and actual treatment?
« on: September 23, 2014, 01:13:11 pm »
My husband was diagnosed with an AN (2 cm) on 9/12/14 following an MRI. We have an appointment with one surgeon this week (Portland, ME), and with another on October 6 (Boston). We have not decided whether we will be getting more opinions beyond that. As you all know, it is pretty overwhelming in the beginning.

I am just curious...generally how far out do they tend to schedule surgery or radiation? (We don't know which route we'll be going at this point.) We're not sure if they are going to say that they can take him in a week or two, or if they tend to book surgery months away. I realize everyone's different. But it would be interesting to get a sense of whether or not this is all going to happen soon (meaning the holiday season will be a wash out!) or after the first of the year.

Thank you.

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: How long between diagnosis and actual treatment?
« Reply #1 on: September 23, 2014, 02:52:27 pm »
Hi Debbiemg and welcome .....

So sorry your husband has been diagnosed with an AN.  However, it sounds like you are doing all of the right things by gathering information and opinions.

As for how quickly treatment can be accomplished, much of it depends upon the schedule of the treating physician you choose.  Additional factors on the timing are whether you have debilitating symptoms or rapidly changing symptoms, how fast you can achieve insurance approval, etc.

In my case, my first surgery was three weeks after diagnosis  My second surgery was three months after diagnosis of regrowth.

As I am sure you have read, typically ANs are slow growing so usually a patient has sufficient time to schedule surgery/treatment when it is mutually agreeable between the doctor and the patient.  If you happen to experience a rapidly growing one, most physicians will accommodate an earlier treatment.

Many thoughts and prayers for good advice and satisfying treatment.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

kmr1969

  • Full Member
  • ***
  • Posts: 120
Re: How long between diagnosis and actual treatment?
« Reply #2 on: September 27, 2014, 07:36:16 pm »
My diagnosis was on July 2nd and surgery took place on November 13th.

In between I met with 2 docs who specialized in GK and 3 docs who specialized in surgery.

Because my tumor was almost 3 cms before diagnosis, I needed to do something relatively quickly.

You didn't say how large your husband's tumor is, but I'm sure you've been told or read that in most cases these tumors tend to be slow growers and therefore you don't necessarily need to feel rushed to make a decision.  A very small tumor may in fact lead to a watch and wait decision which could go on for years if the little bugger behaves himself.

So don't feel rushed, but on the other hand don't use this as an excuse to procrastinate.

Do your homework, make your decision, and when you are ready get it done and get on with rest of your life.

Best of luck to you and your husband,

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

v357139

  • Hero Member
  • *****
  • Posts: 535
Re: How long between diagnosis and actual treatment?
« Reply #3 on: September 30, 2014, 08:15:06 pm »
Mine was 2.7 at diagnosis and I waited one year.  That was too long for mine, which turned out to be fast growing.  But at 2cm, as long as symptoms are not getting progressively worse, you should have some months to decide, if you need to.  You should also ask the doctors you met/meet.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!