Released from care 5 yrs after surgery

[Gloriann]

I don't know what is normal following radiation.

I had surgery, so was wondering how other doctors handle their patients following a surgical removal of the tumor.

I may get the chance someday to find out what happens after radiation because I may need to have this residual tumor taken care of. I am considering Gamma Knife, but right now I am in a "watch and wait" mode.

During the past 3 months I have had two different doctors giving me very different opinions about what I should have done. One said Gamma Knife and the otherr said a second surgery.

Next week I am going to be seeing the neurosurgeon who removed my tumor to see what he thinks I should do. He is the one who released me two years ago, saying all he saw was scar tissue on the MRI's.

It appears that he was incorrect, but I would have just loved it if he could have been right, that all this is, is scar tissue.

This has been a very interesting experience with this tumor, an experience that I thought I could put behind me, but don't think so,  not yet, maybe someday?

[marg]

My neurosurgeon just released me on Wed.  saying that I never need to see him again...and I never need an MRI again (unless I have a problem).  I asked heim about the questionable change seen by the radiologist...since I had read the rssults too.. (radiologist said could be scar tissue or residual tumor)...Dr. said " You are fine .. it's gone".  I am not quite so sure - so I plan to ask my ENT for another MRI in  5 years  - just to check on things.
     I don't think it is really ever over.
marg

[Gloriann]

Marg

Since your surgery was only a year ago, it seems like your surgeon would not be releasing you that soon. I have read where it takes at least 3 years to be sure the tumor is not coming back and most doctors seem to have their patients (following surgery) coming back the rest of their lives, from what I gather reading this forum. Seems like after 3-5 years they may have them get MRI's every 2 or 3 years instead of every year, if nothing shows up.

I think you would be wise to have more MRI's done, since it has only been a year since you had surgery.

[leapyrtwins]

Marg -

I agree with Gloriann.  One annual post op MRI just doesn't seem like enough.  I had surgery in 5/07 also and recently had my 1st annual MRI.  After my doc reviewed the results with me he said "remember you need to have another MRI next year". 

I know all docs are somewhat different, and I'm not questioning yours, but you may want to get additional MRIs.

Just my opinion,

Jan

[Kaybo]

Marg~
I was released by the doctor that did the surgery - but not until after 5 years!  I still have my PCP do MRI's every few years...1 year out seems VERY soon!   

K

[marg]

Thanks -all of you..... I totally agree and plan to have more MRI's ... I guess waiting 5 years is too long - I think I will ask my ENT (who discovered the brain tumor in the first place) to set one up for me next year.  My "gut feeling" was that my neurosurgeon was sending me off too soon.  Thank you SO much for the imput.
Margaret

[Gloriann]

Hello everyone!

I am sorry it has taken me this long to get back to you, but we went on a two week vacation after I saw the doctor in Memphis and just got home 2 days ago.

The doctor in Memphis said he does not recommend any further surgery for this "residual tumor" (as he called it), and that Gamma Knife is definitely the way to treat it, if it continues to grow.

 Nothing was said between us about why he released me two years ago. He may have recalled our phone conversation from that time. I was very honest with him 2 years ago about how upset I was, but I saw no need in bringing that up.

The main reason I went back to see him was on account of the other surgeon (ear) telling me recently that I should have another surgery done instead of the Gamma Knife. Now I have had 2 different neurosurgeons telling me that Gamma Knife is the way to go.

All of the doctors have told me that nothing has to be done right away since the tumor is so small, to give it another year at least and have another MRI done. Dr Robertson (from Memphis) said it is not impossible for these tumors to stop growing on their own.  There can also be different measurements made from the MRI's from different doctors and radiologists, I found out, so I guess I have to take that into consideratin, but I don't need to wait too long and have the tumor grow too large for the Gamma Knife to be effective either.

So, this is where I am right now- "watch and wait".

[sgerrard]

Hi Gloriann,

I am glad to hear that you have a reasonably definitive answer now. Your recent doctor sounds sensible, and watch and wait, with an eye on radiation if and when needed, makes a lot of sense. Hopefully you can put your mind at ease for a while.

Steve

[Gloriann]

The doctor I just saw in Memphis is one of the two surgeons who operated on me back in 2001. I was thinking if I ever did have to have another surgery, I would prefer going back to him, instead of trying to use someone completely new.

He really upset me two years ago when he released me and said he only saw scar tissue on the MRI's. Then after I returned home (to Louisiana) and read the MRI report for myself is when I learned there was a residual tumor. I talked to him over the phone about it and found out that since he did not agree with this report he did not contact me about it, even though he received the report after I left his office. This is what really upset me, to think that if I had not read the report myself I would have just walked away with no more MRI's and still not know what is going on.

So it probably seems strange that I would go back to a doctor who did this, but I have to remember that after he did agree to look over all my MRI's again, when we talked on the phone two years ago. It took him a long time to get around to doing this and in the meantime I saw another neurosurgeon closer to my home, who was not sure if it was just scar tissue or recurrent tumor 2 years ago, but this year has said since it has grown he believes it is not scar tissue only. The surgeon in Memphis did finally get around to re-looking at my MRI's two years ago and sent me a letter stating he was really not sure if it was a recurrent tumor or not and that further MRI's were recommended. By that time I already had the appointment with the other neurosurgeon closer to my home.

I put this all out of my mind for two years, then had another MRI done this year in March, which showed a little more growth.

Bottom line is: both of the neurosurgeons I have seen (Robertson and Nanda) have recommended Gamma Knife as the way to treat this tumor if it continues to grow. Only my ear surgeon (Gardner) has recommended a second surgery.

I have been on a roller coaster ride with this since the first week of April, but I am going to give it a rest now, until the next MRI, which will be in the spring of 2009.

Thanks for all the support I have been given here.

[marg]

Hi Gloriann,
    Again I agree with you about the frustration.  When I got my 1 year MRI report ...which I also read.  It says that they can't be sure if the "shadow" where the tumor was is scar tissue or residual tumor.  My neurosurgeon said the "tumor is gone and you don't need to see me again unless you have problems".  I told him I had read the report - and what did he think of the MRI tech. saying it could be "residual tumor".  My Dr. said "you're fine... it's gone.... you don't need another MRI unless you have problems".   In the last couple of weeks I have come up with 2 thoughts   about this.  1.  I am going to have MRI's on a regular basis (every year  or so to make sure that nothing comes back) for the next couple years...and then every couple years ...because since I am already SSD, have no balance nerve on that side  and have tinitus I wouldn't know something was wrong until it was really bad  and 2.  I will go to someone else if I do have 'any more problems'.  Gloriann, this is your body and continue to be proactive.... no one will care about you and you health as much as you do !  My problem is that I get so busy taking care of the "immediate, urgent" medical needs of my parents and my husband's mom that I don't always take care of myself....I plan to change that... I only have one life too and I have to take care of my health.
marg

[Gloriann]

Marge
I think you are very wise to plan on having more MRI's because just look at how many people on this forum have their tumors grow back. If there is any doubt I don't understand why a doctor would not want to make sure.
You are probably correct in thinking that you would not know something is wrong until it was really bad and the tumor would be too large for Gamma Knife by the time you realized something was wrong. The reason I say this is because it was only the last few months before my surgery that I had symptoms other than just the hearing loss.
My tumor was 4 cm at the time of my surgery and the bad symptoms came only a few months before that.
Take care!
Gloria

[marg]

Thanks Gloria.... hope you can take a deep breath and just enjoy life for the present (that's what I try to do)....I don't want to waste my days by living in fear that the tumor will come back...if it happens I will deal with it then.... I do not want to let fear steal my joy in the present.
marg

[cmp]

Gloria,

Glad to hear you are settling on a treatment decision and can now have some peace of mind till next spring--sounds like you really need it! Also, there's no need to secondguess why you'd return to your original surgeon if need be--that's your decision and yours alone, and if that's who you'd be most comfortable with and confident in, then it would make perfect sense for you to choose him. (I'm glad that you're not facing another surgery, though! And I hope you can stay in watch and wait for a while and catch your breath...)

Marg--Just wanted to echo what everyone's said here about staying current with those MRIs, and that you are wise to do so iin spite of your doc's poor advice. I believed my large AN to have been totally removed in 1988, and only had 3 follow up MRIs over the years (both because I had moved out of state and wasn't really in anyone's care who might have requested the test, and also because I had no idea it was necessary) and apparently the stray cell or two that was left behind regrew and started causing symptoms 20 years later!

I just had my regrowth removed at the end of June, and my current neurosurgeon will follow me at what he calls "doubling intervals"--ie every 6 months in the first year, then every year, then every 2, 4, 8, 16 years as long as there are no symptoms and the films come back clean. I think that sounds about right--not an unnecessary number of MRIs, but also no "release from care" that involves not keeping track at all.

Carrie

[Maverell]

I am sorry to hear of your shock after being told you were clear. I was told after 5 years that I would never need another scan because, as has been already said, the chances of regrowth are the same as any other person getting one. Although, after reading the posts on this forum I am not so sure.

Keep your chin up.

[Gloriann]

I thought I would try and get people caught up on what has taken place since I posted this. I had another MRI done in 2009 which showed NO GROWTH, but my 2010 MRI showed MORE GROWTH and it seemed to have picked up speed, increasing in size, so I had GAMMA KNIFE done in December of 2010. I had a few side effects, but nothing bad and am feeling good now, but I will not know if the Gamma Knife did the job until my next MRI is done in June.