Update: Help?? 23yo son dx'd with brain tumor referred to Mayo

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Mayo this week has been wonderful! Can't say enough about the care my son has received on the beginning journey of diagnosis for a brain stem tumor - but we're not really there yet...

My son has spent the week at Mayo - and is now on his way back home to Grand Forks for a few days.

He saw Drs who ruled out MS - He saw Drs who confirmed the tumor is pressing on cranial nerves and is affecting both eyes -

He was told three options right now before proceeding with more tests:

Do nothing - wait and see -

Radiation without a biopsy

Biopsy, followed with radiation and possible chemo -

Saw two neuro radiologists today - said they might proceed without a biopsy but would rather he confer with a neuro-radiological-oncologist to hear pros/cons of a biopsy - risks involved - risk/benefit etc. That is scheduled for next Wednesday.

The tumor is very large - in a very hard to reach place for biopsy.

Anyone have info on radiation on this area of the brain? Side effects - etc?

Tx will last 5-6 weeks. After next Wednesday's appt - he'll know more - and radiation could start the week after next.

Anyone with info on biopsy in this area? I assume it's in pt procedure - how long as in pt?

Also family in Houston is talking about the Proton Therapy at MD Anderson and I understand there are two other places in the US that does this. Mayo does not. Anyone with experience with this? I'll post this question separately -

Been a long week -

Thanks again for any info and continued kind words and prayers.

Looks like I'll be coming to Mayo for a while in the near future -

__________________

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Just glad to hear from you. I've been wondering how you and your son are faring.

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Just glad to hear from you. I've been wondering how you and your son are faring.

Thanks for checking on me! Just posted an update under oncology. He's on his way to Mayo - again - this weekend to start radiation. Biopsy not possible.

They are thinking and proceeding along the idea this is a brain stem glioma - and radiation is the first line of defense - so we will see where we are in a couple of months.

I'm going up on Friday and staying til the 30th - Might just talk seriously to Mayo while I'm there! Been wanting to get out of this horrid heat and go somewhere so cold my lips fall off! -41 wind chill in Grand Forks! At least he'll be warmer in Rochester!

Again - thanks for sharing your concerns and being there...

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I'm keeping a good thought, Ashera.

Let's hope your screen name is true.

:)

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Specializes in Mental Health, MI/CD, Neurology.

Wow, I'm so sorry that things just can't be simple for you guys. I am glad that you are happy with the care you are receiving at the Mayo though. Imagine the horrible frustration if you were not.

You, your son and the rest of your family hang in there, hon. :kiss

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Another update for so many that have asked -

I just returned from nearly 2 weeks in Rochester MN at Mayo. What an incredible place! I cannot say enough good about every single person I met -

My son is finished his 3rd week of radiation yesterday - three more to go -

I learned a lot - met a lot of really nice Radiation Techs, a Radiation Oncologist and they shared so much information. I was able to take awesome pictures of the room where the 'zapper' was - the form for his head that clamps down to the table - learned how many beams he's given each day (6) where they go into his head - crown, back, temples, behind each ear.

He started on Compazine, and two days ago began dexamethasone, which thankfully boosted his appetite for not only food...but for his beautiful wife who arrived for her 10 day stay with him before returning home to their baby.

I liked everyone of his professionals except the Social Worker we met with the final day of my stay. She came up to me later in the waiting room, while my son had gone in for his tx - and she began discussing something the three of us had talked about from the meeting earlier - All this was common stuff - and there was no 'violation of my son's personal stuff...' as I'm quick to pick up on as I am most careful myself - as we all are....but she said something right out of the blue - which seriously bothered me and still does. I shared with her that in a future meeting with my son - she might bring up whether or not he might like her to arrange a visit with a chaplain - as he and I had some rather deep conversations about beliefs, religions, or lack there of of both - just ...stuff...that most any 23 yo might wrestle with.

I had listened to him, even asking if he would like to find someone to talk with while I was there to help him - he declined, but I know it's rattling around in his head.- Anyway, since this topic had not come up during his appt with her that day - I thought to mention it to her. She said she was thinking of a particular chaplain there that might be a good resource for him - very open, down to earth 'real' without a religious slant of one particular viewpoint. But then she tells me "If I accomplish one thing with your son during his stay here...it would be to get him to accept his prognosis."

BLAM - I took a breath - and looked at her and said..."and just what do you feel my son understands his prognosis to be?" She mumbled something alone the lines of "oh, I'm not really sure - I don't have my notes in front of me but I review before each appt." I did not comment further - and then my son walked up and we left.

My son is doing better than I am. He is scared, he is pacing himself with what he has to deal with in his head - he is being hopeful, he is being realistic, he is talking about 'stuff' and then he's not talking about all the what-if's. He is taking each day at a time right now - and for the next three weeks that is all he has to do. And I think he is doing a wonderful job. But for a 'professional' to breeze up to a family member and say something like this - it was way out of line. I know she's not my target - but for a few short minutes I was very, very angry at that comment.

We DON'T KNOW what the prognosis is. It is not good - but the bad part may not be for a very long time. It's not next week - or maybe even this year -

I'm exhausted. I'm back in Texas - I'm way too far away - I need to make some changes in where I live and where I work and how to make it all happen yesterday. Got my MN nursing license in the mail while I was gone - so I have that ready in a hurry - And yes - the prognosis probably sucks - and yes, the most this radiation might do is... maybe slow down or incapacitate the tumor - but, as the oncologist said - the tumor will always be there - it won't disintegrate - and a dead tumor can cause as much trouble as an active one - it can still press on nerves - and it might be a year before we see if there is a change in his vision - and that is one of the things that scares him the most - not being able to control his eye movements -

But he has moments of being very upbeat, positive, and so do I - and with all the wonderful support I've received here - it just might all work out -

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take a deep breath and don't let anyone rob you of your attitude and hope

if your son is into it ask him if he would like a blog, talk with this chaplain

and encourage ddil to do same

this is going to be a rough time and there will be times when you feel that you are holding on by your toe nails..but time will pass and yo hae our prayers of a good outcome

love you and your fly

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Specializes in Nephrology, Cardiology, ER, ICU.

ashera - thanks so much for the update. I wanted you and your son to know that you are in my prayers and positive thoughts are being sent up to Minnesota, if my frozen hands can type this - lol! It's very cold in IL oday too. No one knows how long we have on this earth - every day is a risk for everyone. Having something so devastating happen is another chance to make every single moment count. Please take care of yourself too.

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