upset caregiver: what do these results mean?

Posted by scared2 @scared2, Aug 4, 2021

My spouse was diagnosed with Throat cancer 2 years ago. Since then has been Cancer free, hasn't missed any of the post check ups. Had a ct scan a week and it came back with a small nodule in the lungs. Has a pt scan and cant get the results for another 10 days. I saw the results......"impressions" 1.5 cm spiculated nodule upper lobe intensely hypermetabolic consistent with pulmanary metastines.

2. a smaller 5mm nodule along right major fissure also suspicious.

3.Mild activity w\a nonenlarged mediastinal node and both hilar regions nonspecific-maybe reactive vs metastic.

3.Hypermetabolic activity is noted in a testicle. More testing is needed.

4.hypermetmetabolic activity associated with peribronical vascular ground glass opacification which is likely inflammatory or infectious. No hypermetabolic activity in the throat.
Is this good or bad news?

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@scared2

MondY its only for consultation. It almost sounds like they're not doing a Biosopy and going right to the surgery. I'm not a dr. That's just my guess.
I realize we're not the only patients.
We were just surprised that they went from the palm palmlogists to a surgeon W /o notifying us. Not that we had to be. Itll be another few days of going nuts, and being scared. Not to mention the "what ifs".
2scared

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I’d be scared too if I had to operate with little or no informed like your having to do. I’d find a new doctor. There is nothing wrong with i having a second opinion anyway.

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@scared2

MondY its only for consultation. It almost sounds like they're not doing a Biosopy and going right to the surgery. I'm not a dr. That's just my guess.
I realize we're not the only patients.
We were just surprised that they went from the palm palmlogists to a surgeon W /o notifying us. Not that we had to be. Itll be another few days of going nuts, and being scared. Not to mention the "what ifs".
2scared

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@scared2 If you feel that everything is moving along too quickly, you have the right to say “wait!” Tel the doctor that you need to understand what is going on and what the plan is. And why the pulmonologist is sending your husband to a surgeon. Each doctor probably assumes that the other has done explanations and answered questions. The doctor may get irritated, but he’s not the one having surgery!
Pull out the journal you’ve been using, and start writing what you need to know. Everything! My husband keeps a journal of every visit, what is saiid,etc. You’ll feel much better when you take some control! I know you can do it! Will you let me know how your visit to the surgeon goes?

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@scared2

Yes, our son originally was to be quarantined to the the 21, then I questioned her decision . Then she changed the date till the 29.
The same day my husband has his next covet test, were all going to take one. Assuming its negative, there going to be hand delivered to the school nurse. Our son is 9 years old. No one said anything when I asked about make up assignments. Hes in special Ed, distant learning didn't work out for him last year. We had a hard time to do the school work.
Got the call from my husband's oncologist yesterday, that the dr. Who is going to be doing the procedure will be getting in touch with my husband today or tomorrow.

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Hello @scared2. I am a cancer survivor who has found this platform of God's angels to be very supportive! I urge you to stay connected to them, they will help you on this scary journey you are on. I come to this discussion late, but something you said in this comment warranted me joining. I am a SPED teacher, still teaching, and like many teachers I am still in the throes of teaching during COVID concerns. You probably already know this but - based on your son's IEP he - and you! - have rights to services. Please make sure you are receiving them. Regardless of how your son must now learn - including if it is virtually - he is still entitled to receive the services decided upon by his case conference committee. I hope the school is reaching out to you, as it should, to ensure this is happening. At the very least, they should be offering Google Meets to provide help from teachers, hard copies of assignments if working remotely does not work for your son, modifications of expectations during times of remote learning, etc. This is one area of your life right now that you should not have to stress over, so I hope you are being supported by your son's school! Just because he must learn from home does not mean that it should all be your problem. You and your family will be in my thoughts and prayers. Remember to breathe!!!

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Last week I called my sons pediatrician and explained to him what was going on. He wrote up a letter from cdc and his own expertise. That my son should be able to get back into school. Then the next day my son had a covet test and it was negative. I took that into school and gave it to the nurse, who said "its not going to change anything, hes still out till the 29th. I also mentioned that my husband had been back to work for two weeks. No change, I was so angry that when I got in the car, I was crying.
As far as school work goes, they haven't sent home anything at all!
I asked about it also, no reply. I got a nasty text from the nurse before that saying I shouldn't be texting my child's case manager about trying to get him back in. So I would say I'm not being supported by the school. I don't to much about his Iep, just what. Has to do his academic issues. I'll have to find it, and read it over.

Thanks for the heads up!
2scared

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@scared2

Last week I called my sons pediatrician and explained to him what was going on. He wrote up a letter from cdc and his own expertise. That my son should be able to get back into school. Then the next day my son had a covet test and it was negative. I took that into school and gave it to the nurse, who said "its not going to change anything, hes still out till the 29th. I also mentioned that my husband had been back to work for two weeks. No change, I was so angry that when I got in the car, I was crying.
As far as school work goes, they haven't sent home anything at all!
I asked about it also, no reply. I got a nasty text from the nurse before that saying I shouldn't be texting my child's case manager about trying to get him back in. So I would say I'm not being supported by the school. I don't to much about his Iep, just what. Has to do his academic issues. I'll have to find it, and read it over.

Thanks for the heads up!
2scared

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This is making ME mad!! You should not be treated this way - and by the school nurse? Sounds more like the school bully! In my state and school district, a negative COVID test gets a quarantined student back in school, so I don't understand why they are not allowing your son to come back in person. And you have every right as a parent to contact your son's SPED case manager or TOR (Teacher of Record) any time you want about anything. You can also request a conference at any time. So please do not let this nurse intimidate you. Shame on her! Your state should have a parent advocacy/liaison organization that can help you with this, where a person would be assigned as your advocate and can help walk you through the steps to get this resolved. You could request this liaison to attend meetings with you, as well. You have the right to bring whomever you wish to meetings! Even with your son going back on the 29th, you should request a statement be added to his IEP stating he will receive hard copies of any work should he be quarantined in the future. That IEP is a legal document! I'm sorry, but this is a huge pet peeve of mine - schools are supposed to help families, not make things worse, especially when you are going through so much other stuff right now. Please keep me posted.

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Take it from someone with thirty years experience in the school system, polkagal is right on, get yourself an advocate, better yet if you have friend who is a lawyer have them come with you. Talk to the principal and the superintendent.The IEP is a legal document what polkagal told you to have documented on the IEP is excellent advise. That nurse sounds like a Dork. Don’t her push you or your son around.

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@polkagal

This is making ME mad!! You should not be treated this way - and by the school nurse? Sounds more like the school bully! In my state and school district, a negative COVID test gets a quarantined student back in school, so I don't understand why they are not allowing your son to come back in person. And you have every right as a parent to contact your son's SPED case manager or TOR (Teacher of Record) any time you want about anything. You can also request a conference at any time. So please do not let this nurse intimidate you. Shame on her! Your state should have a parent advocacy/liaison organization that can help you with this, where a person would be assigned as your advocate and can help walk you through the steps to get this resolved. You could request this liaison to attend meetings with you, as well. You have the right to bring whomever you wish to meetings! Even with your son going back on the 29th, you should request a statement be added to his IEP stating he will receive hard copies of any work should he be quarantined in the future. That IEP is a legal document! I'm sorry, but this is a huge pet peeve of mine - schools are supposed to help families, not make things worse, especially when you are going through so much other stuff right now. Please keep me posted.

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Just know saw your reply. He went back on the 29th. I was told that the district nurse had her fingers In it to.The funny thing we got the school news. Letter, and got the reward for employee of the month.
The only way he could have came back the 21 is if we isolated him from his dad. The nurse told me that last week.

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@becsbuddy

@scared2 If you feel that everything is moving along too quickly, you have the right to say “wait!” Tel the doctor that you need to understand what is going on and what the plan is. And why the pulmonologist is sending your husband to a surgeon. Each doctor probably assumes that the other has done explanations and answered questions. The doctor may get irritated, but he’s not the one having surgery!
Pull out the journal you’ve been using, and start writing what you need to know. Everything! My husband keeps a journal of every visit, what is saiid,etc. You’ll feel much better when you take some control! I know you can do it! Will you let me know how your visit to the surgeon goes?

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The surgeon said he couldn't operate due to my husband's lung capacity, he only operates if the patient is at 40 % and above. We heard alot ifs from the surgeon. He went for his 2nd ct scan today and 2nd physical. Just in case IF its not cancerbut an infection. His primary dr, gave him his physical and noted once again about pre cancer lesion on my husband's arms. There hasn't been any other symptons of cancer. They haven't checked his nails for lack of lines or the chubiness of the fingernails.

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@scared2

The surgeon said he couldn't operate due to my husband's lung capacity, he only operates if the patient is at 40 % and above. We heard alot ifs from the surgeon. He went for his 2nd ct scan today and 2nd physical. Just in case IF its not cancerbut an infection. His primary dr, gave him his physical and noted once again about pre cancer lesion on my husband's arms. There hasn't been any other symptons of cancer. They haven't checked his nails for lack of lines or the chubiness of the fingernails.

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@scared2 it must be so frustrating for you. So many things are making everything even more confusing. Is there someone you are able to talk to?

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