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Advice Please


DRock

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Background:  54 yr old female.  Thyroid cancer in 2014, heart disease/open heart surgery 2016, Diagnosed with Multiple Sclerosis in 2017.

My mom passed away 25 yrs ago at the age of 49.  She wasn’t feeling well, went to hospital on a Tuesday, chest X ray showed nodules in her lungs.  Two days later, on Thursday she had a biopsy, she died that night.  An autopsy revealed that her body was full of cancer, the primary tumour from her lungs.

My journey so far.  I have had two CT scans and a PET scan. 

I have two 13mm nodules in my right upper lung both Hypermetabolic, irregular, somewhat spiculated.  PET scan indicated one nodule absorbed    the tracer with SUV of 5.6

Extensive mediastinal and periportal lymphadenopathy in addition to a splenic focus

A focus of uptake in the descending colon 15mm with SUV of 10

I had a biopsy one week ago and am awaiting the results.  The radiologist told me that if the biopsy comes back inconclusive, they could try a second biopsy or remove the nodules.  Last week’s biopsy was one of the most painful experiences I’ve ever had.  The Dr accidentally hit a nerve and I had severe pain for the next 24 hrs.  I do not want to go through that again.

Given the above, if the results are inconclusive, is it unreasonable to want the nodules removed?

I don’t know anyone that has been on this journey, that’s the reason I’m reaching out.  I’m hopeful that the biopsy will be conclusive but I also want to be prepared if a diagnosis isn’t possible.

Thoughts?

Thank you 🙏🏼 

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Hi DRock,

I'm glad you found us-- welcome!

I am sorry to hear of you nasty biopsy response. What, exactly, did they biopsy? Who did the biopsy? I hope, a pulmonology specialist? 

What I wonder is what's up with the lymph nodes. Did those get biopsied?

4mm on nodes is usually the standard for action; I think removal depends on the location.

But then there's the colon. I wouldn't want to make a decision on one situation without speaking with an oncologist about the whole picture....

This waiting period is very very hard. There's not much that can alleviate the worry. Maybe this would be a good time to start some research about finding a lung cancer specialist?

Hang on, and please keep us posted.

Karen

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Hi Karen,

Thank you for your reply 🙂

A biopsy of both nodules was taken, two samples were obtained.  The doctor who did the biopsy is a radiologist.  The lymph nodes were not biopsied and I don’t know what’s going on with them, all I know is that there is extensive lymph node involvement in the middle of my chest.  Possible inflammation?

Both of the nodules are 13mm.

I live in Canada and patients here don’t usually see an oncologist until they are diagnosed with cancer.  The doctor that has been heading this investigation has been a thoracic surgeon.

I’m hanging … lol 😂 

Thank you!

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