d33f Posted May 28, 2021 Posted May 28, 2021 Through Reddit I've been notified to find support here. So hopefully someone can shed some light on the current situation about my dad with the possibility of lung cancer. First I'll introduce myself. I'm David and I am 35 years old living with my wife and kids together. Furthermore a couple of years ago I've been diagnosed with Aspergers, so that could explain my overthinking ;). I am a full-time software engineer and love technology, science, gaming, cars, astronomy etc. In this case it's about my dad, he is 56 years old and has stopped smoking for 16 years now. My mom (58 now, but suffered a severe heart attack at 42 / reason my dad quit smoking) and I still smoke sadly (though I am smoking less and less for a couple of years, and now I am scared to dead so want to quit as quickly as possible). A couple of days ago my dad called me that he got the results back of his CT scan (with contrast dye).The doctor said they saw an anomaly and he is scheduled to get a bronchoscopy next week. Furthermore they ordered a PET scan the day before the bronchoscopy. The anomaly is the same anomaly which they saw back in 2017. It has grown from a marble to a tangerine size.. Sad part is they also did a PET scan in 2017 but they made a mistake with administering the contrast fluid (they spilled a lot), so I could be that cancer had not been picked up back then. Furthermore he did not receive any follow up scans or appointments. Back to 2021.. A month ago he got struck by the flu and pneumonia, he was very ill (breathless, tired, coughing blood) for more than a week. He went to the GP but the GP said it is most probably a viral infection so no meds are given. At the same time a chest x-ray is ordered. After the results of the chest x-ray they scheduled a CT scan and these are the results we are talking about here. They did not say if my dad should be worried, only that they observed an anomaly which showed highlighted due to the contrast dye. Though the strange part is that the observed mass was dark with surrounding white due to air (normally a dense mass is white and air fluids are dark on CT as far as I know). I've been looking up everything I know about CT scan results and follow up procedures, but to be honest it does not look good :(. Though I have read about false positives (sometimes as high as 33%). I really hope is benign or some leftovers of his recent pneumonia / astma attack. Coming week we hopefully know more after the PET scan and bronchoscopy.. I just can't let the thoughts go that it could be indeed cancer (and something could have been done back in 2017) :(. Something growing from a marble to a tangerine do not bode well.
LexieCat Posted May 28, 2021 Posted May 28, 2021 Hi, there, and welcome. My cancer shows up as white on the CT scan, but if they were sure it wasn't cancer they wouldn't be doing a biopsy. There's really no point in getting too worked up over the various possibilities until you know what's going on. You should know by next week or the week after. The important thing to focus on is that most lung cancer is now very treatable--the exact kind of treatment will depend on the results of the testing. They should also send out any tissue samples collected during the biopsy for molecular testing. One step at a tine--this testing and waiting for results is one of the hardest parts of this whole thing. And I'm totally NOT judging you for being a smoker (I smoked for almost 40 years), but I hope you can manage to quit--this is a disease NO one wants.
Tom Galli Posted May 28, 2021 Posted May 28, 2021 Welcome David, First, let's deal with your dad's testing in the immediate future. A PET scan (explained at the hyperlink) is used to determine if other areas of the body contain metastatic disease. The bronchoscopy will more than likely attempt to biopsy the tumor (anomaly) in the lung. Next, I can't offer an explanation for why there was no effective follow-up from the 2017 PET scan. PET scans can be inaccurate, but I've not read of a 33% inaccuracy rate. The inaccuracy is normally associated with very small tumors. Contrast is normally associated with CT scans, and I've had veins burst while have CT contrast was infused into my veins. Spilling radioactively tagged iodine however would have caused an immediate radioactive decontamination process stopping the test completely. So I think he had a CT in 2017, but the lack of follow-up scans is not good. Masses appear with different opacities, coloration and shades, but a CT scan cannot diagnose lung cancer. Only a tissue biopsy can diagnose our disease. If the bronchoscopy can obtain a tissue sample, a pathologist can diagnose the disease using a prepared slide and a microscope (a histology diagnosis). I'm not well versed in medicine in The Netherlands but it is common in the US after a histology diagnosis for tissue to be sent for further on biomarker testing. If this is available in The Netherlands, I would strongly recommend it be performed. Some types of lung cancer can be very effectively treated, even eliminated by targeted therapy and or immunotherapy. Biomarker testing reveals if you dad's cancer will respond to these new treatment methods. I hope the PET and bronchoscope do not indicate cancer. There are many reasons for lung masses besides cancer. Here is my go to resource on pulmonary nodules. Stay the course. Tom
d33f Posted May 28, 2021 Author Posted May 28, 2021 18 minutes ago, LexieCat said: Hi, there, and welcome. My cancer shows up as white on the CT scan, but if they were sure it wasn't cancer they wouldn't be doing a biopsy. There's really no point in getting too worked up over the various possibilities until you know what's going on. You should know by next week or the week after. The important thing to focus on is that most lung cancer is now very treatable--the exact kind of treatment will depend on the results of the testing. They should also send out any tissue samples collected during the biopsy for molecular testing. One step at a tine--this testing and waiting for results is one of the hardest parts of this whole thing. And I'm totally NOT judging you for being a smoker (I smoked for almost 40 years), but I hope you can manage to quit--this is a disease NO one wants. Thanks for your kind and honest response! I know that I should let it go more until I know more. This is the first time cancer came so close (and made me anxious). I am glad to read here that it indeed is treatable instead in the worst case scenario. Though I don't know how far science has cought up here in The Netherlands compared to the US. Furthermore the more I know about LC the more I question why I started smoking and became addicted :(. But tbh all my thoughts are with my dad and my mom (because she is very dependent of my dad). I really hope it turns out to be nothing or if it's worse than that it indeed can be treated. Thanks again for your warm welcome!
BridgetO Posted May 29, 2021 Posted May 29, 2021 Hi David and welcome. LexieCat and Tom G have given you good information and advice. I don't have much to add. I do want to say that overthinking and anxiety over the possibility of cancer isn't limited to people with a diagnosis of Aspergers. Probably all of us who have been tested for cancer, or who have a loved one who has, have experienced this. Let us know what other questions you have and how we can help you. Best wishes to your father, you and the rest of your family. Bridget O
TJM Posted May 29, 2021 Posted May 29, 2021 Welcome from me as well. You have stumbled on to a special place. Peace Tom
d33f Posted May 29, 2021 Author Posted May 29, 2021 Thank you all for your support! Though I may have some good or at least better news.. Today I had access to my dad's medical files. It seems like sadly he misinterpreted some details. The last comparison was a thorax image from 2014 instead of 2017 and the current thorax showed no abnormalities. Furthermore the tangerine size was not stated by the doctor but the interpretation of my dad (of a zoomed in image I've learned today). So to say the least I seem a little bit more relieved, sure they saw an anomaly on CT but based on the above it will not be as big as a tangerine. Sadly I could not find a report of his latest CT only of his thorax (6th of may).
LouT Posted May 29, 2021 Posted May 29, 2021 Glad to hear that you are more at ease. It's really important to let the diagnostic process run its course and get the final results. If you believe your dad may misinterpret information you may want to see if you, or someone else, can be there for him during his office visits to act as a record keeper and ask questions he may not think of. I hope this is situation is even better than you think. Lou
d33f Posted June 2, 2021 Author Posted June 2, 2021 It seems we received some good news today. My dad had his bronchoscopy today and the pneumologist said that to him it is most definitely not cancer but some kind of infection / congenital defect of the way his lungs are formed. Though they took some samples to see what kind of tissue / infection it is. Tuesday we will receive the definitive results (PETCT etc). I really hope that the pneumologist is right
LexieCat Posted June 2, 2021 Posted June 2, 2021 Sounds like great news to me! Thanks for keeping us posted--we love to hear good news around here.
Tom Galli Posted June 2, 2021 Posted June 2, 2021 How about that! I do hope the PET shows nothing of concern. Stay the course. Tom
d33f Posted June 3, 2021 Author Posted June 3, 2021 12 hours ago, Tom Galli said: How about that! I do hope the PET shows nothing of concern. Stay the course. Tom I agree, but I'll be more comfortable when he does not get called before this week ends (hopefully a sign of nothing serious is being found @ PET).
LouT Posted June 4, 2021 Posted June 4, 2021 Okay...good news after all...let's get all the rest of the test results in and hopefully close a lid on this with a super outcome. Lou
d33f Posted June 8, 2021 Author Posted June 8, 2021 Good news today! All is clear (PET / pathology). I am so relieved!
Recommended Posts
Archived
This topic is now archived and is closed to further replies.