Author Topic: 3 years W/W, AN slowly growing, health declining. What to do?  (Read 1194 times)

jsteph

  • New Member
  • *
  • Posts: 14
3 years W/W, AN slowly growing, health declining. What to do?
« on: December 07, 2017, 05:04:51 pm »
I'm due for my 4th MRI at about 3 yrs post diagnosis and uncertain about continuing watching and waiting or not. I realize that this MRI will tell more about the trajectory of my AN growth but I'm anxious and would like some input.

First of all, I have had a stiff neck with muscle fatigue,  starting before with my diagnosis, in my neck and shoulders that is taking a toll on my health. I'm often tired and seem to have slowly declining stamina. I think this is probably related to my AN but I don't see this symptom being reported by others. Anyone else have this problem?

Second, in regard to continuing to W/W or seek treatment, I wonder about the possibility of my tumor stopping growth or not in the next year or two. I read studies that indicated that something like 80 or 90% of ANs stop growing or shrink from between 3 and 5 years from diagnosis. The conclusion was that if folks can put off treatment for 4 or 5 years most wouldn't have to have surgery or radiation at all. My tumor was on the small side at diagnosis 3 years ago so I hoped I would have time to test this notion. My last MRI showed growth that was moving from "small" to "medium".  If I wait too long with continued growth, my risk from surgery or radiation may increase not to mention slightly worsening symptoms.

Any thoughts about the studies, if you've seen them? Do tumors really stop growing 3-5 years out?

Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

alabamajane

  • Hero Member
  • *****
  • Posts: 587
Re: 3 years W/W, AN slowly growing, health declining. What to do?
« Reply #1 on: December 09, 2017, 09:06:12 am »
Jsteph,,
 remember regardless of what the studies show, it’s your health and decision to make along with your doctors and hopefully more than one opinion.

There are no guarantees with these tumors and “ results may vary” and usually do.

Hoping for positive results of your next MRI and peace with your decision.
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

jsteph

  • New Member
  • *
  • Posts: 14
Re: 3 years W/W, AN slowly growing, health declining. What to do?
« Reply #2 on: December 10, 2017, 03:18:29 pm »
Thank you both for your quick responses. It's much appreciated.

When I mentioned the conclusions of that study to my consulting physician at House, he had never heard of it and seemed not to have any reason to think that there would be any widespread cessation in the growth of an AN years after diagnosis other than the general variation from on person to the next. I was trying to see if there was a sense, anecdotally maybe,  from the AN community about whether or not this study has some acceptance as valid or not. I saw another post of yours, ANSydney, that seemed to reference the study and I hoped you might have some thoughts about it. I'm glad you responded.

My worsening symptoms are subtle and having some meaningful evidence of a substantial chance of positive outcome by holding out a little longer in getting radiation or surgery would be helpful.  I'll re-read the study and the newer followup and will also look at my MRI's to see if I can measure the growth/changes for myself. I didn't know you could do that!
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

jsteph

  • New Member
  • *
  • Posts: 14
Re: 3 years W/W, AN slowly growing, health declining. What to do?
« Reply #3 on: December 10, 2017, 05:17:34 pm »
ANSydney,

I was encouraged but confused after I read the study. My question was and is: If there is such strong evidence that Ans stop growing some time out from diagnosis, why all the invasive treatment? I can understand intervention for those who would have to act sooner rather than later due to large size at diagnosis or due to intolerable symptoms but I don't understand why folks with tolerable symptoms and small tumors don't wait it out more. Also, I don't see a widespread acknowledgement that Ans stop growing in time. To the contrary, it seems that continued slow growth is the expected norm except in rare cases.

Is this study just not known or is it discounted in the medical community and patient ranks? Until I asked about the study, my doc never mentioned much likelihood that my tumor would stop growing. The question wasn't about growth or not but at what pace it would grow and how long I could wait.

I'm obviously pretty ignorant about all this. Is this a controversial issue?

Thank You.
« Last Edit: December 10, 2017, 05:24:01 pm by jsteph »
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

jsteph

  • New Member
  • *
  • Posts: 14
Re: 3 years W/W, AN slowly growing, health declining. What to do?
« Reply #4 on: December 10, 2017, 05:23:13 pm »
Oh, and by the way...I tried to look at my past MRIs to determine size and changes over time. I can't make heads or tails of the orientation of the many sections, identify my AN in the complicated roarshock (sp?) images, let alone measure my tumor! Either my images are different than yours or you are far more adept than me. No doubt the later is true:).
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

jsteph

  • New Member
  • *
  • Posts: 14
Re: 3 years W/W, AN slowly growing, health declining. What to do?
« Reply #5 on: December 10, 2017, 07:48:06 pm »
For each of my MRIs, I have a dozen, or so, images. Several seem to be horizontal sections (the others, I have no idea what I'm looking at). These are of the entire head with a whole lot of features in grayscale. I expected to see symmetry of features on either side of the sections but this isn't the case. Even with symmetry, I think it would be hard to find the little tumor (the one anomaly in the jigsaw) , without it, it seems impossible. My images don't look anything like what you show in your link.

I'll take another crack at it when I have a bit more time. I do appreciate your help.

Did you have a thought about the question I had regarding the acceptance of Ans usually stopping growth 3-5 years from diagnosis?

James
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

 


anything