When do I need a follow-up MRI?

[Patti]

I had SRS in November 2015 for a regrowth (see signature) with a doctor I am not happy with.  My last MRI, 6 months ago, showed no change.  I have an appointment scheduled in March with this doctor for a follow-up, yet I don't feel any different. Should I find another doctor/facility now or do I have to stick with this one because his facility has all the MRI work? Can I wait another 6 months to see another doctor? It is a long trip into Manhattan for just a check up when I have nothing to report.

[ANSydney]

Patti, you bring up a few interesting points.

Firstly, you should always get your MRI on disk. You can then have a good look at your tumor. The disk will have measurement tools so that you can check the measurements. I discovered yesterday that my radiologist has completely got the measurements wrong. He would have gotten a more accurate answer if he used a random number generator! (Hopefully nobody has had treatment based on numbers from one source without checking themselves.)

If I were you, I would get a follow up MRI after SRS at 6 months (which you did), 1 year and 2 years. If there is no growth I would stretch it out to at 5, 10, 15 years. after a while I would try to get scans done without gadolinium compound as gadolinium is a heavy metal and although it is chelated, some of it does stay in the body. (You want to have good kidney function.) I'm looking into this for the future as I'm happy to have frequent MRI's but not frequent gadolinium compound.

For follow up MRI's I would get a local facility and have the previous MRI's sent there.

[alabamajane]

Patti,
You shouldn't ever have to stay with a doctor you don't like nor trust ,,,, it's your  life and health and decisions to be made,,,,

 you can and should get your MRI test(s)  on a disk so you have control of it and can take to whomever you choose to read and discuss,,,  most of us are not qualified to look at it and determine what it shows,, I encourage you to do that with a doctor,,,

I didn't have radiation so can't speak to timeframe of follow up MRIs, your doctor will advise you. If you find a new doctor you are comfortable with, I'm sure he/she will decide what timeframe is best for your situation.

Good luck and I wish you well with your quest to find a new doctor you are comfortable discussing your future treatment.     

[ANSydney]

I agree alabamajane, we are not qualified to interpret MRIs and the final say is always by the appropriate professional.

Sure, look at your MRIs, measure all you want, get familiar with it, but do not rely on your findings. If they match the doctors great and your understanding is good, if not ... revise your education for next time if interested or rely more on the doctor. Your body, your choice.

I personally am going down the revise my education until my observations match those of the doctor. May not happen first time around, but it will happen. The more sets of eyes that examine the MRI the better. The fact that a neurosurgeon yesterday got vastly different tumor size (with which I concur) to the radiologist's report is reason for concern.

[alabamajane]

I'm not totally convinced that differing measurements is such a concern or even that it's uncommon,,
I believe there are many patients who encounter this once the neurosurgeon looks at MRI. I know I did,,

I believed mine was one measurement from the radiologist report only to find it was much larger once neuro looked at MRI. He stated it isn't unusual for there to be differences. It's due to the manner that each professional uses to determine size. Basically, what is actually being measured,, just in the IAC or the entire tumor if it extends into the CPA,,

And really, we shouldn't get "too hung up " on size alone or growth,, location of the tumor and symptoms and personal preference as to treatment or not,, are just as important issues in my opinion ,,
But back to topic for Patti,,, yes most definitely find a doctor you are comfortable with!! And sooner than later,   

Jane

[Patti]

Thanks for your input. So if I switch doctors will it be a problem getting my MRIs from him and to another doctor?   

[ANSydney]

Your new doctor will be able to request (and get) the MRI send across.

[alabamajane]

You can also request a copy of the MRI on disk yourself,, I do each time I have it done before I leave the test. I have it done at a hospital..  Even  the first time I had one done, I did not request it then so just had to go to medical records Dept and request them burn me one. Took about 15 min maybe.

But new Dr can request it after you fill out medical records  release form at the office.  You just want to do that before your appointment so he/she has it at appointment time.

[theshawn65]

Do not stay with a doctor you don't like or trust. Remember they are human just like you, put their knowledge in your head and ask yourself if you would expect bowing....

All MRI locations can give you a CD of your images. If they don't offer one, demand one, you are paying for them, you own the images, not them. As others have said, another doctor can request the images from prior doctor.

Good luck.

[PaulW]

As you had radiation for regrowth and you originally had a larger tumour, it is very likely your tumour is more aggressive than others. I would definitely listen to your doctors advice on the frequency of MRIs which could be every 6 months for quite some time. If you don't like the doctor seek out another one. My doctor doesn't live near me I just send a copy of my MRI electronically to him and I don't even get charged for the consult!

[Patti]

I've been so indecisive about this.  Laziness also is a factor.  I decided that I wanted to have the MRI done at the same facility, which I am doing this Thursday.  I go back to get the results the following Tuesday.  While there, I can sign release forms to find a new doctor.  Truthfully, I don't know where else to go.  NYU Langone?  Cornell Weill? Any suggestions?  My guess (hope) is that there will be no emergency.  Thanks again for your input.

[Patti]

Well, You will be happy to know that my instincts (which I wasn't listening to) were right.  Again, they (Montefiore) do not have my blood work.  I had to call them to find that out.  I could not get the MRI done.  It finally made my decision.  I will be getting in the mail a request for records to sign.  I am sending them to Cornell-Weil to have everything looked at.  I will proceed from there. It took me a while to make this decision.  I hope it all works out.

[alabamajane]

So sorry you could not get the MRI and are having such problems,, but I think it will be good to find another doctor with whom you hopefully can have a better relationship,,,

I can't help you in choosing a facility up that way though,,, but others on here can.

Best of luck and keep us posted,,