Unknown Diagnosis

[VetGrandma]

I had a lung CT 3/2018 that was perfectly fine.  Then I had another 2/2020 and wow! it's like my right lung is someone else's lung.  I have a nodule 6 mm x 6.5 mm in my lower right lobe with tree-in-bud nodule adjacent.  I also have ground glass nodules in my middle right lobe and the middle right lobe is partially collapsed.  I had a follow up CT on 3/20/20 I won't have the report until Wednesday but can get the CD tomorrow.

My question is does this seem like a very fast moving "issue", 2 years from my great CT to this mess of a CT?
What will the next step be in the search to diagnosis, biopsy?
Am I even going to be able to get treatment, if it is cancer, with this pandemic going on?

Thanks in advance for any advice.  Worried a bit!

[Lin wilki]

Yes you will get treatment. My hospital is taking great precautions but I think cancer is a priority. Good luck!

[Tom Galli]

Vet Grandma,

Is two years from no evidence of disease (NED) to CT finds you described fast moving? I wouldn't know. There are so many variables to answering that question. Your next step is a biopsy followed shortly by a PET and perhaps brain scan.

Will you be able to get treatment? I see cars in the parking lot at my oncology clinic so I would think you could be treated.

Stay the course.

Tom

[LouT]

Vet Grandma,

You never mentioned if you were experiencing any symptoms prior to the CT.  The reason I ask is the tumor seems quite small and the tree-in-bud nodules indicate mucous in bronchial tubes, but that can be associated with a number of diseases.  Once you get your results please let us know what they find and then you'll be able to get much more information.

And as others are saying it is very likely that you'd be able to get treatment for cancer during the pandemic.

Lou

[VetGrandma]

Well I had the 2nd CT on March 20.  My VA PCP called and said that in the 30 days since the last CT there "didn't seem to be much change" and that radiology is suggesting getting another CT in 1 year.  I told her I would be more comfortable with a tele-medicine appointment with either the radiologist of an oncologist as I had many, many questions about the reports and that I was concerned about waiting 1 year when I had gone from a clear CT to a bad CT in 2 years time.  She's reaching out to the radiologist.

I have to take my care at the Phoenix VA and they don't seem to have any interest in 1) giving me a diagnosis one way or another, 2) giving me further tests such as a biopsy, 3) do the radiologist suggested ultrasound until at least June when the VA will open their radiology department to non emergency patients again.  It's very frustrating.

As far as symptoms prior to the CT in Feb 2020.  I believe I have but they are very much like my normal life that I wouldn't have noticed.  I am always short of breath, in early 2019 I was put on Symbacort inhaler 2x a day for COPD in addition to my rescue inhaler for asthma.  I have been getting weak legs while walking any distance for about 1.5 years, but just figured it was because I was out of shape and over weight. 

The VA only allows you to see your PCP once per year so it's hard for me to remember everything I've been experiencing during that 50 minute appointment when it's a whole year's worth of medical issues.

So still unknown diagnosis.  I am hopefully getting the two CT DVDs tomorrow from them.  Yes, I will take the risk of driving down to the VA and getting these two DVDs so that at least I can compare them to themselves and to the 2 year old clear CT.

Thanks for letting me vent about the VA Health "Care" System.

If I ever get a diagnosis I'll let you know here.  

[Tom Galli]

VetGrandma,

I understand how difficult the VA medical system is. Here are my tips for negotiating road blocks in the VA system.  Write down the name and department of everyone that tells you no. All VA hospital staff have a name tag that also shows their department. When I run into the bureaucratic minefield, I first call or visit the hospital ombudsman and tell them who is telling me no.  If the ombudsman can't break the log jam, I contact my congressman using the staffer at my local congressional district office. Again, I report names and departments of the people who are telling me no.  Reporting bureaucrats by name has been an effective way for me to get appointments or procedures.  I used a small notebook to record names and departments. Now I use my cell phone camera, holding it like I'm taking notes, but taking pictures of their badge. Sadly, the VA has lots of rules governing access to treatment, and a lot of employees who make up rules as they go along.

Are you a veteran without a service connected disability? Your one PCP visit per year suggests you are. If so, Phoenix is a popular retirement area and the waiting list for VA appointments is long. If you have family or friends in Montana, Wyoming, or the Dakotas, then visit them and go to the VA hospital in those states. The list will be much shorter.

If you are comfortable, private message me for more VA tips and tracks. Just hover your cursor over my name and you'll see the message tab.

Stay the course.

Tom

[VetGrandma]

Thanks for the advice.  All good except the reporting to my congressperson or Senator, they are all worthless and have never returned a call I've left regarding the VA.  I do voice record all of my visits though.

I am 100% service connected.

I can't be travelling at this time but I do have relatives in Wyoming.

I will PM you later if I need some more help.  We'll see what the radiologist says after receiving my PCPs message.

Thanks

Andrea