Guidance & what to expect

[KSgirl]

Hi, I am a 41 year old with a complex medical history. I am looking for some guidance and idea's on what I might expect with a recent development in my health that those of you here may have experience with. 

 

I have a history of Pulmonary embolism (2) and embolic shower to the brain. I am also immune compromised with Chronic Variable Immune Deficiency. I have been told by my medical team that this puts me into a higher risk category for certain cancer's and other disease. I am also guilty of being a long term smoke (I know, I know, I am trying desperately to quit). 

 

I was in the emergency room in March 2016 for shortness of breath & a resting heart rate of 157. A CT angiogram was done to rule out another embolism. The only abnormal finding at the time was "small borderline mediastinal and hilar lymph nodes are noted, but not pathologically enlarged. Borderline hilar lymphadenopathy is noted."

 

My hematologist recommend a follow up CT scan at 3 months, only because I am immune compromised. The follow up CT scan was abnormal.

 

It showed

 

Soft tissue: "An enlarged right precarnial lymph node measuring 1.6 cm AP by 2.3 cm transverse by 3.1 cm craniocaudad. This had previously measured 8 mm AP by 1.8 cm transverse and thus has enlarged in the interval. A right paratracheal lymph node measures 1.6 cm AP by 9 mm transverse by 2.1 craniocaudad. Previously this had measured 9 mm by 1.7 cm and is similar. No other mediastinal or hilar lymphadenopathy is appreciated.  The impression stated is that "the precarnial node appears to be pathologically enlarged now, and there is a stable appearance of borderline right paratracheal lymph node. 

 

Lungs: "Interval development of an 8mm x 9mm subpleural nodule at the medial aspect of the right lung apex. This is of uncertain etiology. There are subtle area's of groundglass density and hyperlucency seen throughout the lungs which may represent poor inspiritory effort and area's of air trapping that have improved since previous study."

 

My hematologist said he "hopes the lung nodule is a pocket of infection, & the lymph nodes are just reacting to that, but the lymph node is highly suspicious." He decided to skip a PET scan and go straight to a biopsy called an EBUS.

 

Would it be common for lung cancer to present with just 1 or 2 enlarged lymph nodes? I am a little confused about the sudden appearance of the lung nodule. I haven't been ill since early March. How concerning is this? From your own perspectives, what can I expect going forward? My EBUS procedure has been scheduled for next Friday, July 22nd. 

 

I appreciate any thoughts or suggestions. I find I do much better mentally/emotionally when I have a basic understanding of what is happening and what to expect. Thank you in advance for your time and sharing of experience! 

 

 

[Tom Galli]

Welcome here KS.

 

I've not heard of a lung cancer diagnosis consisting of just enlarged lymph nodes.  That doesn't mean it can't happen.  I'm also not a doctor so my opinion counts for little.

 

Chest congestion from infection will cause enlarged lymph nodes, but you indicate your last illness was early March.  I've had persistent lung infections (since achieving a NED status) with scans after and these scans showed enlarged lymph nodes.  I recall one event where the illness was over for about 6 weeks and I still had enlarged lymph nodes.

 

As to what to expect, an EBUS is a very common procedure and is minimally invasive. You'll have anesthesia; perhaps not general but you shouldn't feel anything. A preliminary pathology report should be available shortly after completion of the procedure. You'll normally be kept under anesthesia till the pathologist determines if the sample is definitive enough for identification. It is my experience that one is told the results of the preliminary pathology report prior to discharge from the procedure. The results should be conclusive.

 

I hope things go well for you next Friday.

 

Stay the course.

 

Tom

[KSgirl]

Thank you for your input, Tom. My doctor, who is usually very personable and willing to sit down an talk with me, was just coming off a week long vacation, was running late, and was also not feeling well when I saw him, so I didn't want to pepper him with questions. I appreciate your experience and thoughts. It helps a great deal to know more on EBUS procedure. The nurse for the pulmonalogist (he is doing the procedure) did say I would be under a general anesthesia, which makes it a little less anxiety producing to know. 

 

I think what concerns me, is that the lymph node enlarged during the interim, when I had not been ill. If it had remained stable as the other, I don't think it would concern me as much. I did have a significant lung infection in September of 2015 that required 5 days in the hospital. I did repeated rounds of antibiotics through February. I suppose it is possible and logical the infection didn't completely resolve, and I am relapsing into it & it just isn't causing symptoms yet, which I had not previously considered. 

 

Thanks again! 

[Bruce u]

Hi KS

I had my upper left lobe removed in 2007 and have been NED since. In March i had a CT scan and Ground Glass Opacities sowed up in 2 lobes of my right lung. I had Pneumonia before that and the Radiologist said it may be infection and recommended another CT in 4 months for comparison. I had it last Friday and got my results Monday and it was resolved so must have been infection. I was finding the lymph nodes on both sides of my chest but that has gone as well. So hopefully it is just from an infection.

[KSgirl]

Hi Bruce, thanks for your response! I am glad the lobectomy worked for you. It always amaze me what our bodies can handle. I am hoping it is all just due to a past or current infection. It isn't cancer until it is diagnosed, and if it is, I will probably wish I spent this time enjoying life rather than fretting over something that I can't change. Life is difficult enough as it is.  

[Bruce u]

If you can put it out of your mind and enjoy life it would be great. Just after my lobectomy I had a touch of the flu and was automatically thinking the worst. I told my oncologist about it and he looked at me and asked " you never had the flu before you got cancer?"