Hi everyone,
I'm new and recently received my results from a LDCT with contrast this morning. They didn't confirm a benign nodule or scar tissue. What was said was my primary doctor wants a repeat scan in 6 months. So maybe I didn't ask the right questions during the phone call.
So let's go back to February 21, 2020 when this all started. During a ct scan of my cervical spine the radiologist noted in his report a partially imaged nodule in the right upper posterior apical lobe. Size stated was a 4 - 5 mm nodule. This wasn't told to me during a follow-up visit with my former orthopedic doctor. After numerous doctors visits, pt and then having to have steroid injections bilaterally at L5. (Which didn't resolve the pain) Then having to have a left SI joint injection. (Which didn't produce any results either) I sought out another orthopedic doctor over an hour away. On November 18, 2020 I provided him with a 124 page medical report along with over 400 images of just my cervical spine. He was skimming through the report and pulled out the page with the incidental finding. He asked me if I was aware of this nodule and the location? Of course I said what nodule and where is it again? I had absolutely no knowledge of this nodule and where it was located. So he made a copy and handed it to me to immediately take to my primary care physician. Which I did the following morning. I then had an appointment with my primary for the following Monday. At that appointment he read the report and he looked at me and said I'm ordering a LDCT scan with contrast. Which I had yesterday afternoon. Sorry so lengthy.....
Which brings me to this mornings phone call. If it was a benign nodule or scar tissue wouldn't they have stated as such?
Everything is happening so fast so I honestly didn't know what questions to ask..... If anyone can add anything that I should have asked or a small list of questions to ask would be extremely helpful.
Thanks,
2015harleystreetglide
(Debbie)
Reply # - December 16, 2020, 01:57 PM
Hi Debbie, Welcome to Grace.
Hi Debbie,
Welcome to Grace. I'm sorry you're having these issues. There is no way of knowing if a lung nodule is benign by just looking at a scan. Cancer can only be diagnosed by looking at tissue through a microscope (from a biopsy). People get lung nodules all the time that are benign, much more often than cancer. So it's most likely not cancer. It's pretty standard to watch it to see if it grows, hence rescan in 6 months (some docs would initially rescan in 3 months but there's no standard in timing scans). So the first question I'd ask is has it changed in size. Getting an exact comparison to the original scan may not be feasible since the first said partial image but a general comparison is probably possible. A nodule under a cm (10mm) would be difficult if not impossible to capture a biopsy from and doing surgery to find out it's a benign nodule carries a lot of unnecessary risks. So you watch and wait.
Our faculty are oncologists and aren't pulmonologists who work up and diagnose lung cancer so there's no special insight to be gleaned from them. My husband had a malignant tumor in his apical lobe. They are unlike normal lung tumors in the way they grow toward the outside of the lung into the chest wall. The damage (and pain) that occurs begins much earlier in its course so they are found earlier. The damage can involve the brachial plexus, ribs, and/or cervical spine.
I think I would want to know if the nodule has changed in size. If it appears to have grown ask about redoing the scan in 3 or 4 months instead of 6. These types of tumors are rare so if you're not a pulmonologist or lung cancer specialist you may not know about them. So ask your doc if she knows about them. You may want to see a pulmonologist to get their opinion.
Finally, if it hasn't changed in the almost 10 months since it was first seen it probably isn't going anywhere, and rescanning in 6 months to make sure it stays put is reassuring. I hope that's the case.
All best,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hi Debbie, Welcome to Grace. by JanineT GRACE …
Reply # - December 16, 2020, 09:14 PM
Thanks Janine. Last November
Thanks Janine. Last November and December nothing showed up on the numerous ct scans I had. In February this year it showed up. This little hitchhiker in my lung is located right upper posterior apical lobe. I've been diagnosed with C6 nerve damage left side. Plus cervical radiculopathy, spinal stenosis and spondylosis. So it's a guessing game at this point. That scan the report was a guess at size 4 to 5 mm. I did ask the size and it was 5 mm. I don't know what the shape was in February as it was only partially imaged. I didn't ask if it was round or shaped funny or weird on Tuesday. Maybe I should have. My risk factor is high. COPD, smoker of 42 years, yes I know thats horrible. Not sure if lung cancer runs in our family. I had asked my mom if anyone in our family ever had lung cancer. She said she couldn't remember. And she is our last link to any family history. I thought our great aunt, my grandmother's sister (mothers side) had lung cancer. My mom couldn't remember. It was 1975 when she passed away. So I'm just going with no family history of lung cancer. I'm going to request a copy of the report. Just to satisfy my curiosity. I'm a show me person. I need to see it and hold it in my hands. I'm not stressing at this point. I would like to have gone over the report with him to get feedback from the findings. And maybe a little bit of an explanation overall. But I'm not a doctor / specialist.
Again thank you Janine.
In reply to Hi Debbie, Welcome to Grace. by JanineT GRACE …
Reply # - December 16, 2020, 09:05 PM
Thanks Janine. Last November
Thanks Janine. Last November and December nothing showed up on the numerous ct scans I had. In February this year it showed up. This little hitchhiker in my lung is located right upper posterior apical lobe. I've been diagnosed with C6 nerve damage left side. Plus radiculopathy, spinal stenosis and spondylosis. So it's a guessing game at this point. That scan the report was a guess at size 4 to 5 mm. I did ask the size and it was 5 mm. I don't know what the shape was in February as it was only partially imaged. I didn't ask if it was round or shaped funny or weird on Tuesday. Maybe I should have. My risk factor is high. COPD, smoker of 42 years, yes I know thats horrible. Not sure if lung cancer runs in our family. I had asked my mom if anyone in our family ever had lung cancer. She said she couldn't remember. And she is our last link to any family history. I thought our great aunt, my grandmother's sister (mothers side) had lung cancer. My mom couldn't remember. It was 1975 when she passed away. So I'm just going with no family history of lung cancer. I'm going to request a copy of the report. Just to satisfy my curiosity. I'm a show me person. I need to see it and hold it in my hands. I'm not stressing at this point. I would like to have gone over the report with him to get feedback from the findings. And maybe a little bit of an explanation overall. But I'm not a doctor / specialist.
Again thank you Janine.
Reply # - December 17, 2020, 03:01 PM
The nodule's done nothing for
The nodule's done nothing for 10 months that's an excellent sign that this is benign. It happens a lot. Most people who smoke or have smoked have nodules in their lungs that do nothing after they show up. You'll know that as time goes by and the scans don't change.
Lung cancer is rarely caused by family genetics. When you hear about mutations in lung cancer they are talking about gene mutations that aren't hereditary. Feeling guilty about smoking isn't helpful. Mortality isn't something you understand when you start, at least I didn't anyway. BTW, I quit the day my husband came home from the hospital with his diagnosis and he quit the day he went into the hospital. Our faculty would tell you the same. Don't be ashamed.
I just had a thought. We get a lot, a lot of people who post on here probably with cervical radiculopathy that think they have a pancoast tumor (a tumor that starts at the apex of the lung and grows into the chest wall. My husband's was. I have had cervical radiculopathy for years and when my husband explained his symptoms (before that got bad) I told him it was prob what I have. His explanation of it sounded like what I have. But the pain down his arm was from the brachial plexus, not his neck. Use your body's knowledge to judge any symptoms that might come up on that side.
It's important to talk to your doctor about it, maybe get an opinion from a pulmonologist. Unlike other lung cancer where it can grow without notice because your lungs have few nerve endings, a tumor that grows at the apex of the lung will let you know (cause symptoms) if it grows. But again, if it's done nothing for 10 months that's an excellent sign that this is benign. It happens a lot. Most people who smoke or have smoked have nodules in their lungs that do nothing after they show up. You'll know that as time goes by and the scans don't change.
I'm hoping for no change, and yes, waiting is the hardest part :(.
Janine
Hey Debbie, That bike is a big! Its been several years now that the heaviest thing I ride is a scooter. Do you ride still?
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to The nodule's done nothing for by JanineT GRACE …
Reply # - December 18, 2020, 05:38 AM
Not a lot anymore. With my
Not a lot anymore. With my spine in its current condition I can roughly tolerate getting up in my truck. Lol. On occasion I do but not I use to. Living on the east coast of Florida there are a lot of nice places to ride. So we generally take the truck. On a good day we may go out for lunch or an early dinner. But we don't go far. I've always wanted to take bikes to the keys. Hopefully next spring or early summer. If my back is up for the ride.
I hope everyone has a wonderful Christmas! And we all can look forward to a better 2021!
In reply to The nodule's done nothing for by JanineT GRACE …
Reply # - December 18, 2020, 05:39 AM
Not a lot anymore. With my
Not a lot anymore. With my spine in its current condition I can roughly tolerate getting up in my truck. Lol. On occasion I do but not I use to. Living on the east coast of Florida there are a lot of nice places to ride. So we generally take the truck. On a good day we may go out for lunch or an early dinner. But we don't go far. I've always wanted to take bikes to the keys. Hopefully next spring or early summer. If my back is up for the ride.
I hope everyone has a wonderful Christmas! And we all can look forward to a better 2021!
In reply to Not a lot anymore. With my by 2015harleystre…
Reply # - December 23, 2020, 04:32 AM
Pancoast Hello my names
Pancoast
Hello my names Nicky 39 - non-smoker - male
About 2 weeks ago I had irratating pain in my right shoulder which lasted abou 1-2 days and sleepless night cause of it. The pain slowley declined then noticed I had a ache in my upper right back but thought it was just cause I always slept with my arm under the pillow plus my posture is poor so stopped sleeping like that and started sitting a bit Bette also and the ache reduced the pain was In my upper and lower scapula. Then a few days later I started poking at my other scapula on the left side and noticed the ache was also in similar place there also but wasn't sore just sore when poke it. Started getting shoulder pain on both shoulders and my right pinky is tingling but again not overly painful just when I poke them. So tried getting a hot water and putting it on my back and messaged the pain out and it sort of worked as couldn't feel the pain for a while after that but like I say there's not much pain from them just when I poke them. At the Moment my shoulders have a burning feeling in them I took ibuprofen this morning which slightly help the shoulder ache.
And can you get these tumors in both lungs as notice most symptoms seem to be on one side.
Any feed would b helpful
cheers
Nicky
In reply to Pancoast Hello my names by Nickyloon
Reply # - March 3, 2021, 08:48 PM
Hi Nicky
Pain in the back part of my shoulder started in July 2020 and by the time my Pancoast Tumor was diagnosed in October the pain was unbearable. When the Pet Scan was done it showed the tumor had caused destruction of the 2nd and 3rd ribs with a fracture of the 2nd. No amount of pain medicines touched the pain, even Oxycodone. It was the radiation treatments that stopped the pain overnight.
Dee
Reply # - December 23, 2020, 01:45 PM
Hi Nicky, I would suggest
Hi Nicky, I would suggest that you read a few forum threads from people who think they may have a pancoast tumor because they have pain and numbness in that area. You will find that there are many and none have returned to say they have cancer. As a matter of fact, I have pinched nerves in my spine that cause pain and numbness from neck to fingers, depending on my physical activities (beginner's yoga from a trained pro is amazing for my type of problem as well. PT as well can be effective). See a doctor and get her opinion. It makes sense for Debbie (OP) to be cautious she has a nodule in the area where pancoast tumors are found. Even her's is probably not but having a nodule and pain makes sense to keep an eye on.
I hope you are better soon.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hi Nicky, I would suggest by JanineT GRACE …
Reply # - December 23, 2020, 02:05 PM
My anxiety is absolutely
My anxiety is absolutely through the roof as well which probably won't help things, If you don't mind but do you know if you only get PT on one side of lungs or can't they affect both at once
Reply # - December 23, 2020, 02:12 PM
Nicky, I'm going to move this
Nicky, I'm going to move this conversation to the other thread where you commented. I think it will be more appropriate there. :)
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Nicky, I'm going to move this by JanineT GRACE …
Reply # - December 23, 2020, 02:44 PM
JanineSorry didn't mean to
Janine
Sorry didn't mean to post it on this page
Reply # - February 7, 2021, 12:47 PM
Nickyloon, never feel you
Nickyloon, never feel you need to apologize here. :)
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.