Bad news for me today I think I am close to confirmed. 3a

[taxmeless]

I posted before about a 8mm nodule found  by lung screen ct. Then had a petct that showed only minimal uptake  on the nodule without any furher findings as per the radiologist at Mount Sinai in Miami Beach. Told to wait 90 days and retake the CT scan. Feeling nervous I consulted with a pulmonologist and flew out to Mayo Clinic in Rochester mn based on my GP recommendation.   They immediately told me the petCT showed an uptake in my right 2 hilari lymph nodes with highest being 4 uptake and the radiologist completEly missed it back in Miami . Heading for a bronchial biopsy of the lymph node tomorrow morning. Feeling dejected to say the least. Very unusual for a 8mm nodule to infect the lymph node. Feeling sunk. Any inight would be appreciated. Also what can I expect going forward with stage 3a (at bestl )lung cancer? Thanks 

[Tom Galli]

Taxmeless (I love that name BTW!),

You've got a lot on your mind with a biopsy tomorrow, so I'll be brief.  Stage IIIA is very treatable and survivable.  I was diagnosed Stage IIIB 13 years ago.  If Stage IIIA, you might have a favorable surgery situation.  You might be a candidate for CyberKnife surgery in two locations. Or a combination of surgery and CyberKnife. So nothing is off the table treatment wise, in my opinion.  Relax.  Try and get some rest.  We'll know more tomorrow afternoon.

Stay the course.

Tom

[taxmeless]

Unfortunately Tom my doctor said if ithe nodes are  malignant surgery probably will not be an option due to hilar nodes location , any advice on treatments? Types of chemo, alternatives. Also, should I travel long distances to go to the best  and fly like here at Mayo or just stay local for convenience and wear and tear on my body , or drive three hours for some thing in between. What have you been though physically over those 13 years? What challenges did you face, when was the last time you had any cancer cells?  Did you have lymph nodes that were cancerous? Best regards 

 

 

[BridgetO]

It's great that you have options for your treatment. Here are some thoughts based on my experience. I have medical insurance with very complete coverage through an HMO. It doesn't pay for outside doctors at all. On a previous (non-lung) cancer, I had some concerns about what my medical oncologist was planning for treatment-- I did like this doctor pretty well, though. I went for a second opinion from a doctor specializing in the rare type of cancer I had. I paid for this opinion myself.  She recommended some specific additional chemo. I went back to my in-program doctor and told her I wanted to do this. She said that, although it wasn't what she would recommend, it made sense, and she respected the opinion of the outside doctor.  I really appreciated her flexibility and we went with the outside doctor's plan.

What I'm getting at with this is that you may be able to get opinions and treatment plans from "the best", such as Mayo, and have them implemented closer to home where you might be more comfortable. Of course, this would depend on having a local doctor who you trust and who is flexible, and also a treatment that's not so innovative that only Mayo can do it.

Best of luck whatever you decide. Hang in there!

[Tom Galli]

Taxmeless (oh I do love that name!),

I would stay at the Mayo to get a definite rule-out of the surgery situation.  I'd get an opinion from a thoracic surgeon and a radiation oncologist, particularly as concerns the possibility of using new radiation techniques (click on the question - what are the different types of EBRTs).  It may be possible to access one or several nodes using these techniques with radiation and to get a good opinion, you'll need to have a very experienced radiation oncologist.

If surgery or cyber surgery is ruled out, then your treatment falls into the category of "standard of care".  This care takes the form of "everybody gets one" to be non-technical.  In reality, it is a combination of drugs and or radiation that has been shown by large population studies to be most effective at eliminating or stopping your disease.  These standards have lines -- first line is the first care routine (drugs and or radiation), the second line is normally only drugs (perhaps a different recipe), the third line and etc.  After my surgery, I went to third line therapy when the cancer metastasized to my remaining lung.  But, it worked.

Since first line standard of care is pretty standard, I'd have it at a small clinic near my home.  I'd even expect second line treatment because lung cancer is persistant. I would undergo second line care at my local clinic.  I would keep contact with a seasoned oncologist at Mayo for a third line care assessment.  At third line and beyond, the intuition and experience of the medical oncologist become very important and the Mayo guys are likely to have that level of experience.

My you ask tough questions: my challenges physically over 13 years of surviving lung cancer?  During chemo, my white counts would drop very low and a cold would turn into a pneumonia at the drop of a hat. (another reason for getting first and second line treatments near your home - aircraft exposure) Still, as a one lung survivor, a chest cold is an experience to endure.  It puts me down quickly and for a long time.  

What challenges did I face during treatment?  My troubling side effect from Taxol and Carboplatin was intense arthritic-like joint pain.  It is not a common side effect but a known side effect and it was three days of burning pain in every joint in my body.  Obviously moving during this period was difficult and I needed heavy drugs to survive the encounter but narcotic medication (fentanyl patches and lidocaine patches for temporary relief) compounded my chemo side effects.  Most people do not get this type of side effect from chemo and there are alternative drugs now that are just as effective but cause fewer side effects.  So joint pain during treatment was my troubling time.  And of course, my most bothersome situation during treatment was waiting for scan results.  It bother me so much, I wrote a book about it -- Scanziety.

My last treatment was a cyberknife procedure in early March 2007 but I still see my oncologist two times a year -- recall, lung cancer is persistant.  We don't use the "c" word or cure word in the lung cancer community but we strive for NED -- no evidence of disease.  That is what I've been since March 2007 but have had some scary scans that looked like reoccurrence. 

No I did not have lymph nodes that were cancerous.  My tumors were in my right main stem bronchus and then after my right lung was removed, I developed three tumors in my left lung.  I do know many who've had both tumors in the lung and lymph nodes and some of these folks had CyberKnife-like treatments to attend to the nodes.  That is why I suggest it as a combination therapy with first line treatment.  I've know many who've had affected nodes that were addressed with conventional first and second line treatments.  And, if you have adenocarcinoma and if your biopsy displays certain genetic markers, you may be a candidate for targeted therapy.  Even if you don't have adenocarcinoma, there are many advances in immunotherapy that address Squamous cell lung cancer, my type.

So, let's find out what your biopsy reveals and proceed from there.

Stay the course.

Tom

[taxmeless]

OK, my last day at Mayo went much better. The doctor ordered a CT scan with contrast a day before the planned biopsy procedure for the Hilar lymph node. It showed that my 7.2MM  (The miami beach hospital radiologist mislabeled the nodule 8MM twice and missed the uptake on the hilar lymph node on pet scan and in my opinion should be fired for incomptence, thankfully Mayo Clinic is a world class hospital and identified it all properly) nodule had shrunk to 6mm since my 1st scan 45 days earlier.  What's more the ground glass attenuation surrounding the nodule had largely disappeared. He reassured me that the 4 uptake on the hilar nodule is most like an infection. A study done in Japan showed cases like mine with a subcentimeter nodule, with a uptake of 4 (mean) in the hilar nodule for stage 1  cancer diagnosed patients proved to be benign infections in over 80% of the cases.  So even if the shrinking nodule is cancerous it would not likely preclude me from surgery once we confirm the lymph node to be benign and that would likely happen when tested. But considering the shrinking nodule, he suggested we wait 90 days and retake the ct scan to determine if it continues to shrink and therefore cancer would be further unlikely. So with a little more good news, I may be on these boards for moral support vs being a paid member of the society of hard knocks.

[Tom Galli]

taxmeless,

Grand good news!  Now your only likely worry is tax day!

Stay the course.

Tom

[taxmeless]

Tom, does the chances of it being benign go up dramatically if the nodule declines from 7.2mm to 6mm and the ground glass attenuation fades dramatically in 45 days? I am Still confused and looking for a pro survivior to help me analyze

. They did report with the Full CT vs the LDCT that I have other nodules in the lobe including a 3mm central nodule.

[Tom Galli]

Taxmeless,

While size matters there is not much difference between 7.2 mm and 6 mm.  So I wouldn't have a clue about that small of a differential and metastatic disease.  The only definitive way one can know about metastatic disease is by pathology report from a tissue sample.  So that means a biopsy.  I think you've had one at Mayo and are waiting results.  Am I correct?

Stay the course.

Tom