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NO says everything's "stable" but is it reall?

sadinholland
Posts: 226
Joined: Apr 2011

Ok so I posted yesterday that my husband had an appt. today. The NO said his scan was great and stable. I am so happy for that. He said the weak legs/knees have nothing to do with his cancer or treatment and we need to see his primary care doctor so we have no idea what is causing the legs and knees to give out. Anyway, I get home and read the results on the mri and am totallly confused. It says there is an area of postsurgical volume loss????Does anyone know what that means? It says there is a peripheral enhancement and moderate meningeal enhancement overlying the surgica site, decreased since last study???? Mild to moderate adjacent flair changes ?????ex vacuo dilatation mildly progressed?????? Few small areas of adnormal intensity involving subcortial and periventricular white matter?????? I am not allowed to ask questions at the doctor visits, per my husband or I will no no longer be allowed to go back with him. He says it's his issue and if he ever becomes unable to ask questions, that's when I can open my mouth, otherwise just sit there and if there is something he wants to ask about HIS situation, HE will ask. Any help would be greatly appreciated.

Thank you!

connsteele
Posts: 232
Joined: May 2011

It's always interesting to compare what the docs say to you and what their reports say. When we transferred our son back home, we got all his records from his initial dx and treatments in VA. While no outright discrepancies, certain info was not communicated.

I would love to have similar reports each time we visit his new NO at Ohio State, but as our son is 34, we can't do that. The request for records have to come from him, and truthfully, he's not sharp enough to do this. It's hard when you're dealing with an adult who is suppose to make the decisions but not really sharp enough to do so in his best interest.

As for the confusing terminology in his latest MRI scan, is there a Medical School nearby? If so, you may be able to go to the med school's library and ask for help in looking up those terms, and what they mean. That way, you're not violating confidentiality laws. Just seeking information about certain medical terms. Of course, there's always the internet, but we know that it's not always current or correct.

I always wonder about different docs communication styles. Some want to lay it all out, good and bad, no sugar coating. Others communicate with kid gloves. I think we have to be open with the docs, and let him/her know how much info we want.

We have taken the approach with our son of not asking "how much time?", which we can only be answered with our son in the room. As a result, nothing has been said about that. The only thing they've said is that treatment will not cure the cancer, just slow things down.

Any more pointed questions will have to come from our son. So far, he hasn't asked that question. But as postings to this site attest, doctors' timelines are just subjective. We've all read here about those who have beaten those odds.

sadinholland
Posts: 226
Joined: Apr 2011

Connsteele,

You and your son should contact a lawyer and have papers drawn up for a living will and also for power of attorney as well as other papers to give you permission to get information, make decisions if he is not able to etc. Bothe my husband and I have done this.

sadinholland
Posts: 226
Joined: Apr 2011

Does anyone know if hot flashes have anything to do with brain tumors?

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