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Cannedy

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Happy to have found this forum thanks for the comments and support I've read so far. Had an interesting journey so far in a short time. Am waiting on mediastonoscopy surgery in two weeks. Had several procedures and tests and hopefully upcoming will give me answers. I'll write another post

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Very early 40s female went to ER because clinic told me to, felt like I had a lump in the middle of my chest, dry hacking cough no sputum, very tired. Went on for a week. ER first said may be pulmonary embolism as my ddimer was positive. Did CT scan and x-ray, no PE but I had a "spot" on lung. Radiologist thought it was TB but pulmonologist said not. History of melanoma when I was 30. They did blood tests etc and eventually put me in isolation while results came back. Had a CT guided needle biopsy it came back inconclusive but, according to doctor, surrounded by white blood cells that surround cancer. TB results came back as latent TB negative sputum and negative blood for active. I had a petscan which shows two approx 1.5 inch neoplasm in right lung and five neoplasm in vertebrae. The highest SUV was 8.9 very close to mediastum windpipe heart etc. Another in lower middle . Don't remember SUV for second and then spine was around 3.5

 

 

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Pre subcarinal mediastinum and right thoracic perihilium 27mm x 36mm SUV 8.9 (viable neoplasm)

Thoracic-lumbar vertebrae 3.1 SUV ("""")

Right mid posteralmedial hemothorax pulmonary parenchyma right lower lobe 12mm 2.3suv ("")

Enhanced uptake on fourth, eighth-nineth thoracic vertebrae , and fifth lumbar verterbrae

 

 

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I had pneumonia and antiobiotics cleared that up. I have a lot of.pain in chest and then spine behind chest when I breath, rib pain and increasing back pain

The high metabolic activity could be inflammation and the spine activity "could be anything" according to pulmo. He said best case scenario I have active tb. Somehow tests may have shown false negative. However it seems very interesting that I would have higher SUV in spine if I merely had inflammation in lungs. Oh they tried to do bronchoscopy first before needle biopsy but I am allergic to lidocane so they couldn't complete it. This waiting is hard. Of course I am imagining the worst. Also have what looks like subungual melanoma on two nails

 I 

 

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It says at bottom if conservative management approach is undertaken ...basically redo petscan in 9-12 weeks. I looked up the term conservative mgmt in lung cancer and can only.find a reference to palliative treatment. Essentially I'm just wondering of course if this all is an indication of cancer , active TB or inflammation from pneumonia 

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Hi, Cannedy, and welcome.

I don't really have any ideas about your test results.  Are you having a biopsy of the spots on your nails?  We aren't medical professionals here, so it's likely nobody here will know any more than your doctors do.

My guess is that "conservative management" means watching and waiting, which is actually pretty common when trying to diagnose.  When my nodules were first found, I was scheduled for a repeat scan three months later.  At that point there was no change, but when I went for my annual scan the next year, one nodule had changed in size and appearance such that they were reasonably sure it was cancer (I did not have a biopsy; my nodule was very small but suspicious enough they wanted to remove it no matter what.

And, post-surgery, the only "treatment" I'm having is semiannual scans to monitor for any further changes.

Yeah, waiting sucks.  It's one of the most frustrating things about testing.

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Thank you for your reply. I am glad, it seems at least, you are doing well. I think they'll do a biopsy if I mention they are still there. I guess my regular doctor could refer me to a dermatologist. My pulmo seemed interested but that area didn't seem to light up on petscan. I think they are most worried about the neoplasm with an 8.9 SUV . My spirits were pretty good until I read the petscan report now I'm doom and gloom. I'm sure all feelings are normal. I'll certainly keep you updated thank you

 

 

 

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Hi Cannedy and welcome! 

My situation was somewhat similar to LexieCat's. I was "watch and wait" for a while and then ad surgery to remove what turned out to be  a Stage 1 adenocarcinoma. No further treatment needed at this time, just CT scans  every 6 months. I wish you all the best and encourage you to hang in there. Waiting for results is really the pits.

Bridget O

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Happy to hear of your success. What a frightening thing , nice to speak with others who have experienced some of the same procedures and tests. I don't know what to do to distract myself as I don't feel like doing anything but I think I'll focus on some positive interests. Hope you have a nice evening 

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Cannedy,

Welcome here.

The nodule in your right chest/lung with an SUV of 8.9 is worrisome, but it is not necessarily cancer.  It is small (2.7 cm x 3.6 cm) and may indeed be a residual from pneumonia.  Lung nodules result from many causes.  Here is my go to resource for explaining the causes from the Cleveland Clinic.  I don't have a clue about the spots on your nails that look like melanoma and a dermatologist is indeed the best discipline to sort that out.

Given your recent pneumonia and no biopsy a conclusive cancer diagnosis is not available, even with the SUV result.  So conservative management -- waiting to see indications that the nodule grows -- is indeed and unfortunately the best non-surgical approach.  I'd try not to worry because the nodule is small and your recent pneumonia is an explanation for the SUV.

Stay the course.

Tom  

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Thanks Tom, hope I'll have great news to report. Appreciate the information. If nothing else, I'll have a wealth of reading under my belt . Hoping for the best. I've always thought I could get through anything but this waiting is a true challenge. Many thanks and have a nice day

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I just wanted to chime in here, Cannedy. I just finally had my PET scan a couple of weeks ago (after pneumonia, pulmonary embolisms and a large mass in my lung on CT that they weren't sure about). They made me wait 6 weeks after I got out of the hospital. I smoked for 40 years. The PET scan was clear - the mass had disappeared, there was no cancer. It showed lots of little uptake spots on my bones where I have lots of orthopedic problems, though. FDG uptake doesn't necessarily mean cancer. 

They wouldn't be making you wait so long if they really thought it was cancer - at least not an aggressive, fast-growing cancer. Either they're really not sure, or they think it's a very poky, slow-growing little lump(s).

I should leave this place, but I got so interested in people's stories in the six weeks I sweated out the wait. The folks on this site rock!

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