Update: Help?? 23yo son dx'd with brain tumor referred to Mayo
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 -
I do appreciate your letter, although it did feel like I was being scolded. Speak to others about life in general? This...happens to be my life in general right now. And this board is also a place to get support and share like experiences and to gain information in areas we might not know ourselves.
My question about proton therapy - was not soliciting advice - it is a new radiation therapy and I'd hoped someone might have had some experience with pts going through that.
The poster above just sent me a wealth of info with sites to go to that I might not have run across on my own.
Again - apologies for sounding like I was asking for medical advice or requesting to "consult with specialists".
Please do not feel "scolded".....some of us who work with cancer patients are sometimes reluctant to advise on new therapies for many reasons.
First, we are not party to the staging/histiology of the cancer, or whether it is a primary/secondary/met, the patient's history and medical condition. Second, virtually every MD and many facilities do the same procedure very differently. Variations may have to do with minute tumor shape difference, signs of necrosis/non necrosis. All of these are things that we on the BB, not involved with the care of this patient do not know, and do make a substantial difference in treatment. And the side effects will vary accordingly.
As such, we are often reluctant to comment. Something that may be OP in some places may not in others, and often microscopic variations in positioning may be the difference.
Another point is that biopsy of brain lesions of any type are generally handled through neurology/neurosurgery and not through oncology. I recently worked on one of the few high level oncology ICU (cardioversions, vents, multiple drips, CVVHD, granulocyte transfusions). Oncology will frequently take s/p cardiac onco-related surgeries. But one of the only cases that we did not take back immediately postop was ...a brain biopsy. The MDs were reluctant to even order DC on the staples - 3 weeks post - it falls out of their realm.
I have been a fulltime onco nurse for over 10 years and over a dozen facilities - several in the top 10 in the nation. I maybe see an adult patient with primary (not mets) brain tumor every 18 -24 monthes or so, few and far between. A friend that works neuro sees them much more often. Thus neurosurgery/neurology would probably be a good source for info on biopsy/side effects. Onco is better equipped for the physical (nonneuro) effects of routine rad and of chemo.
A possible source of clearer info would be for you (or your local social worker for the case - all onco patients should have one) to speak to social work at the site/neuro onco for the procedure. They can tell you about postop followup routine, OP care, what the routine is. They also may be the ones (SW at the site) to make various arrangements for housing, FU, and often like a heads up on financial/aftercare issues. Or contact the office/department that will handle the procedure and have them send you the info sheets/books - nurse educators for the dept should have some. My experience at the higher ranked teaching facilities, is that they usually have lots of info sheets/books on procedures. Even with experimental/research issues - there are extensive consent forms that detail any "known" problems or experienced problems.
My heart goes out to you and I will keep you in my thoughts.
And I think that this response was not called for, either.
I certainly could see where the what the OP posted could be seen as asking for some info that might be an issue with TOS. And as we do not have access to seeing faces/gestures, communication is limited on the BB. Some of us have also seen situations on the BB that got blown out of proportion, because we do not have all the data that we need to say what needs to be said - or only hear one part of the story.
If you do not care for what RNsane said, you have merely to say, that you do not feel that the OP was asking for advice but for support. Berating his/ her for his/her perception is inappropriate.
Thank you carolladybelle - for your response(s) but I have to say now to everyone - Please don't let this vere off in a direction I don't need. My 'update' just posted was after a long letter one week ago - when all this was just starting - and my hurting was huge and out of control - I was and am not really asking for specific anything - just support and ideas - such as links - that might enable me to educate myself and pick and choose tidbits that might be of benefit to my son. If the above poster that quickly assumed my only reason for posting was for medical advice...had taken the time to read my original letter - they might have seen what my intention had been.
I do not have the energy to explain myself to anyone right now - and won't do it again. I needed to feel I could write about what is happening - what did happen - what might happen - and just in being able to do so - I feel like I am not so alone. I am in Texas - my son is in North Dakota - his tx so far is in Minnesota - and possibly looking at traveling to where they do proton therapy. It's very difficult for me to know what I need to do on this very day - but I do know I must be able to be with him as he only has his young wife and brand new daughter - and they can't do it all by themselves.
But back to my feeling 'scolded' - I'm sorry, but that was my feeling. You did not need to tell me not to be. It was a feeling. And please don't say to 66busdriver that his reaction to what was said was unappropriate. It was the way he...felt. And I am respectful of what you too felt - in response to both mine, RNsane, and 66bus... - but this is not the direction I need this to go.
and I do not have the energy to get it back on track. I don't want to work that hard and waste my focus.
Thanks for the info on the neurology direction. I really don't have a clue as to the many directions I might seek advice - friendship - and simply a cyber hug. And I won't apologize again for not knowing the right wording to use.
You might have simply suggested I post under neurology, that there might be information that could be helpful.
But please - if you don't have something you feel might help me right now - don't tell me that I'm doing or saying something wrong. There's just no rulebook I've seen on how to feel in this situation -
again, bless all of you who have responded with kind words and ideas. You don't know what this means to me!
I know how you feel, Ashera. Not about your dear son, but about not having the energy to redirect a thread that's taken on a strange life of its own when all you wanted was some sympathy.
You're in my thoughts, as is my son. And please, keep us informed in spite of the mishugas.*
I know how you feel, Ashera. Not about your dear son, but about not having the energy to redirect a thread that's taken on a strange life of its own when all you wanted was some sympathy.
You're in my thoughts, as is my son. And please, keep us informed in spite of the mishugas.*
Yiddish for craziness
Ah! Yiddish I should know already...Ashera (Hebrew for Blessed & Fortunate)
Ashera - My prayers are for your son and you during this time. I hope you get all the information you need for your son. My mom has to go in to see a surgeon for a biopsy on a lesion in her right breast next Tuesday. I am scared too, she is going the day before her 65th birthday. Please keep us posted on your son. {{{{{HUGS}}}}}
Ashera - My prayers are for your son and you during this time. I hope you get all the information you need for your son. My mom has to go in to see a surgeon for a biopsy on a lesion in her right breast next Tuesday. I am scared too, she is going the day before her 65th birthday. Please keep us posted on your son. {{{{{HUGS}}}}}
Thank you for your prayers - and know mine are back with you and your mom! Please let us all know how she does...
Will the military send your son to MD Anderson? Or, is that not included in his health care? You are in my prayers.
Take a deep breath, let it out, and hang on for another day. I have found that cancer tx is a roller coaster ride. You have ups and downs. You're not in control and you're scared; however, you can't jump off the ride when you want to. Reach deep down into your soul and find the strength you never knew you had and hang on. I know you can get through this chapter of your life. Just being there and caring and offering help will mean the world to your son and his family.
caroladybelle, BSN, RN
5,486 Posts
Please do not feel "scolded".....some of us who work with cancer patients are sometimes reluctant to advise on new therapies for many reasons.
First, we are not party to the staging/histiology of the cancer, or whether it is a primary/secondary/met, the patient's history and medical condition. Second, virtually every MD and many facilities do the same procedure very differently. Variations may have to do with minute tumor shape difference, signs of necrosis/non necrosis. All of these are things that we on the BB, not involved with the care of this patient do not know, and do make a substantial difference in treatment. And the side effects will vary accordingly.
As such, we are often reluctant to comment. Something that may be OP in some places may not in others, and often microscopic variations in positioning may be the difference.
Another point is that biopsy of brain lesions of any type are generally handled through neurology/neurosurgery and not through oncology. I recently worked on one of the few high level oncology ICU (cardioversions, vents, multiple drips, CVVHD, granulocyte transfusions). Oncology will frequently take s/p cardiac onco-related surgeries. But one of the only cases that we did not take back immediately postop was ...a brain biopsy. The MDs were reluctant to even order DC on the staples - 3 weeks post - it falls out of their realm.
I have been a fulltime onco nurse for over 10 years and over a dozen facilities - several in the top 10 in the nation. I maybe see an adult patient with primary (not mets) brain tumor every 18 -24 monthes or so, few and far between. A friend that works neuro sees them much more often. Thus neurosurgery/neurology would probably be a good source for info on biopsy/side effects. Onco is better equipped for the physical (nonneuro) effects of routine rad and of chemo.
A possible source of clearer info would be for you (or your local social worker for the case - all onco patients should have one) to speak to social work at the site/neuro onco for the procedure. They can tell you about postop followup routine, OP care, what the routine is. They also may be the ones (SW at the site) to make various arrangements for housing, FU, and often like a heads up on financial/aftercare issues. Or contact the office/department that will handle the procedure and have them send you the info sheets/books - nurse educators for the dept should have some. My experience at the higher ranked teaching facilities, is that they usually have lots of info sheets/books on procedures. Even with experimental/research issues - there are extensive consent forms that detail any "known" problems or experienced problems.
My heart goes out to you and I will keep you in my thoughts.