Lung Cancer Diagnosis?

[Scottishwoman01]

Hi everybody,

I am reaching out here as I have no-where else to turn. I am alone in my journey although I have been married to same person for 33 plus years. I had an accident in April (took a tumble down hardwood stairs) and had a number of nasty injuries. The hospital performed a number of scans, one of which found a mass on my left lung, lower lobe (3.7 CMS). I was sent to a pulmonologist  who immediately scheduled a breathing test (PFT) and then sent me the following week to her best friend who is a Surgeon.

This Surgeon has suggested removing the lower lobe of my left lung and then performing a biopsy to confirm cancer... I was also diagnosed with beginning stage emphysema. This surgery will take away 20% of my breathing capacity.

The accident in April caused me to have a surgery for plates and screws in my left wrist as well as a TBI and I now have Post Concussion Syndrome so my thoughts right now are a little scrambled.

Apparently this growth was first seen via X-Ray or CT in 2017 (I was never informed) but was much smaller so in 4 years it has grown. It was described as a "hole" in my lung with potential cancer cells around the margins of this hole so a biopsy would likely be inconclusive. Surgeon wanted to do surgery in 2 weeks after I had a clean blood test from smoking (god only knows I am trying but I am so stressed and alone I cannot find the willpower to stay quit and HATE myself )

I had a PET scan at my request yesterday and here are partial results. Everything else from what I can interpret looks clear. Surgeons office LIED to me about results not being available for 4 days- I got these in my portal in 2 hours. 

Gist of results :

Impression

1. 3.2 x 1.7 cm multicystic lesion with mural nodularity demonstrates low-grade FDG uptake.
2. No scintigraphic evidence for FDG-avid metastatic disease.

CHEST: Multicystic lesion in the right lower lobe measures 3.2 x 1.7 cm on series 4, image 97. There is mild mural nodularity, with uptake along its inferior margin having an SUV max of 1.0. Along its superior and medial aspect, there is a small focus of uptake having an SUV max of 1.8.
 

 My primary care Doctor said an infection could also cause this'd because of my smoking Ihave had more than my share of Bronchitis, pneumonia's etc... I need help! 

My husband has told me he "does not care as I have to many health issues for him to deal with" Basically told me I was on my own which would be ok if I did not have "Post Concussion syndrome". I don't want to worry my adult children but am more than a little stressed and just unsure what next step should be.

Thanks in advance!

 

[LUNGevityKristin]

Welcome! I'm sorry you feel alone but we are here to support you.  But we are not doctors and cannot give medical advice.

First, here is Lung Cancer 101: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101  It will give you lots of answers about next steps, biopsies, etc. 

Does the doctor want you to stop smoking because it could lead to surgical complications?  Please be kind to yourself.  You are going through a lot of stress right now.

When the doctor told you your results wouldn't be ready for a few days they meant because they need to read them and interpret the results.  Many patients prefer not to look in the portal because there is a lot of information that can look scary but really isn't anything to worry about.  The doctor will help make sense of the PET scan findings.  Do you have an appointment scheduled to go over them?  Hang in there!

[Tom Galli]

Scottishwoman,

Oh my, your PET scan does not suggest cancer. I'm NOT a doctor but an SUV of 1.8 is totally normal. Concerning SUV's start at 3.0 and higher. Those between 3 and 4 may not be metastatic. SUV's above 4 are almost assuredly metastatic (cancer) disease. Small tumors generally return inaccurate SUV results, but your tumor is not small and should produce a much higher SUV than demonstrated if metastatic.  Here is a blog I wrote sometime ago that explains PET scans and results.

First relax. Don't jump into surgery. I advise seeing a medical oncologist and pulmonologist before having surgery. These disciplines may offer differing guidance than your surgeon. I agree with your primary doctor's suggestion about infection.

I agree, stopping smoking is tough, but it is something you should do. 

Stay the course.

Tom

[Scottishwoman01]

Thank you Tom. Being in this alone with a brain injury is really hard. I feel rushed and have put a halt to everything right now to give me time to think and explore 2nd opinions (where to start with that?) I agree, the tumor , or whatever it is, is large but I do believe it s from an infection and most likely exacerbated by having severe Covid in March 2020 as well as multiple bouts of bronchitis/pneumonia over the years from smoking.You have given me hope and encouragement and I cannot thank you enough.

2 weeks from lung cancer via CT scan diagnosis to surgery is very quick. FYI, my first appt was with a Pulmonologist who then sent me to her best friend (thoracic surgeon). Oncology doc is my next step!

[LouT]

     Tom's and Kristin's advice is absolutely on target.  You need additional diagnostic work.  Your PET results just don't seem to be positive for cancer.  Also, the real gold standard would be a biopsy, so pushing the pause button to get more information is a smart move.  
     In the event that you do need to have surgery I can tell you that I had a lobectomy in 2019 and am diagnosed as having mild COPD but I recovered from my surgery and continue to do 5 miles/day as I've done for years.  So, please don't count yourself out.  You are dealing with a number of physical (and some emotional) issues at this time so taking time to heal is a good thing.  If this lesion has been around four years and is approximately 1.5" then it is not a fast growing nodule.  Work with your medical team to prioritize the things you need to do in order.  And, of course, a biopsy is the definitive test to better understand what is going on in your lung.  
     You have us here to support and go through this with you so you are NOT alone anymore.  Please keep us updated and ask any questions you may have.  As we better understand what your situation is we can offer more from our own experience.

Lou

[Scottishwoman01]

Thank you Lou! I was told by the thoracic surgeon and the Pulmonologist that a biopsy would be "hit or miss" being that this "cancer" was not a solid mass but more of a hole, and the cancer was on the margins so hitting the right spot on the margins would be hit or miss and possibly be an unnecessary procedure. None of it sat right with me. Removing a lobe based on one diagnostic test (CT Scan) seemed unusual. Again, I have a brain injury and almost went along with it. My Primary Care Dr was the one who suggested it may be an infection. She called me this evening after viewing my PET scan and we are starting a month of antibiotics in case it is an infection. Not sure it can hurt at this stage.

LOL, I agree that the emotional issues are a lot tougher to deal with right now for sure!

 

So happy I found you all, I am climbing out of my sadness and helplessness. Thank you!

[LouT]

I'm glad your primary care stepped in with the antibiotics.  Let's see how that works for you.  But if the "hole" remains after treatment then another thing they can do (which is what they did with my case) would be to do the surgery and remove a small wedge of tissue and have it tested for cancer.  If it is positive they remove the lobe, but if it is negative, they close you back up and no further surgery is done.  So you do have an option that would prevent removing the lobe if it is not cancerous.  So, stay strong, you can do this.

Lou