Is radiation really indicated, here??

[Cara.M]

Happy to have found this site.  My husband has long been getting low-dose CT scans for nodules in his lungs (he was a 30+ year non-filtered pack-a-day smoker who quit - mostly - over a decade or more ago).

Last CT, he had 4 nodules on the right under 7mm, and 5 on the left under 6mm, but one on the left was 8.8mm and a "new" one was 9.7x8.4mm.  His pulmonologist recommended a PET scan.

PET scan "impressions" summary:  "...focal moderately intense FDG uptake localizing to a solid pulmonary nodule abutting the anterior left major fissure in the posterior left upper lobe which measures approximately 1.5 x 1.4 cm and has an SUV max of 6.7 (slice 89). There is moderate FDG uptake localizing to multiple locations in the bilateral hila. The SUV max in the left hilum is 3.2. The SUV max in the right hilum is 3.5..."

So they recommended a bronchoscopy.  My husband went to the appointment alone, which was a mistake, as he came away with the impression that the bronchoscopy would remove the nodule.  Of course, we learned the day of that it was a biopsy only.  The pulmonologist called many days later saying the biopsy results were "non-diagnostic."  My husband is opposed to/afraid of surgery, and is leaning toward radiation.  But I'm reading the pathology reports from the bronchoscopy and wondering if even that is really indicated, here.  

There were 4 separate pathology reports, apparently 2 for the nodule and 2 for the lymph nodes (the pulmonologist had told us that his lymph nodes looked all good):
1) Nodule, FNA:  "The ThinPrep, conventional smears and cell block slides show scattered fragments of bronchial/lung tissue with reactive changes. No evidence of atypia or malignancy is identified."
2) Nodule, Bronchial Lavage:  "The ThinPrep slide shows pulmonary macrophages, mildly increased acute inflammatory cells and background degenerative debris. No features of atypia or malignancy are identified. A GMS stain is also performed and is negative for Pneumocystis or fungal organisms (control stains appropriately)."
3) Station 7 lymph node, aspiration:  "The ThinPrep and cell block slides show scattered lymphocytes and histiocytes consistent with lymph node aspiration. No features of atypia or malignancy are identified."
4) 10L lymp node, aspiration:  "The ThinPrep and cell block slides show rare lymphocytes and histiocytes suggestive of a lymph node aspiration. No features of atypia or malignancy are identified."

Don't those all basically say - NEGATIVE for malignancy?  My husband does have Sjogren's Syndrome and a touch of rheumatoid arthritis, both of which we're told can cause inflammation even in the lungs, so I'm not sure why we're being referred to a radiation oncologist.  

I'd hate for him to not take care of this, if it is indeed a threat - but I'd also hate for him to undergo radiation if there's nothing happening, here.

Is the oncologist going to determine from these reports whether treatment is truly indicated?   Our consultation with him is TOMORROW !  (I had some trouble getting my account set up - I tried to post earlier!)

Thanks for any advice...

[LouT]

Cara,

I'm sorry to hear about your husband's situation.  In reading the test reports you cite I do keep seeing "No Malignancy" mentioned.  I would say that you need to sit with the Oncologist and review all the test results.  Some of the PET SUV ratings are above normal, but biopsy is always the "gold standard" for conclusion of malignancy or not.  Once you review with the Oncologist he will no doubt make a recommendation.  It may well be to keep an eye on the nodules for any further changes or even a progression into malignancy.  But regardless, I would recommend that if you are uncomfortable with any conclusion or recommendation (treat or no-treat) then you need to get a second opinion.  I believe that, at the least, there would be a recommendation to continue to follow up on the nodules.

You didn't mention if your husband was exhibiting any symptoms as a result of the nodules.  If so, it can affect the recommendation you receive.  Please keep us updated on your progress.

Lou

[Cara.M]

On 1/3/2024 at 7:15 AM, LouT said:

You didn't mention if your husband was exhibiting any symptoms as a result of the nodules. 

@LouT

He isn't, really.  He's had shortness of breath for years - first they thought it was his aortic valve leakage so they replaced that, and it had no impact on his breathing.  He's been seeing a pulmonologist for quite a few years and is on all sorts of meds for COPD, but none of them really seem to help much, either.  But no new symptoms since the discovery of this troublesome nodule.  (Personally, I think my husband's surprisingly active for a 76 year old!)

We spoke to a radiation oncologist who clarified that the pulmonologist who did the EBUS didn't get enough sample for the "non-malignants" in the path reports to be relied upon.  (My husband is quite resentful that they didn't get more tissue - and he doesn't want to hear that he was warned that it might be difficult to get enough sample.  Unfortunately, he focuses on blaming rather than moving forward, sometimes.)  So the radiation oncologist definitely said that SBRT was a viable and good choice for him.  On taking a day to think about it, my husband is still, I think, wishing that this ISN'T cancer, and so wants a second opinion, which is not a bad idea - so we've started the process of visiting a local reputable cancer center at a local university for that 2nd opinion.

Thank you for the feedback.  I'll post again if there are more questions!

[Karen_L]

A second opinion with a doc who specializes in lung cancer is an excellent idea. 

I had a lime-sized tumor in my right lung, as well as some nodes, zapped. Radiation took a lot out of me, but killed everything, so that was worth it. 

It's hard to wade through the initial period of confusion, and it takes time to understand the options. But if you can see it as a step-by-step process, it can help cope with the uncertainty. 

K

[Cara.M]

@Karen_L - may I ask some specifics about your situation?

We had a telehealth 2nd opinion with an interventional pulmonologist today.  Learned some things that the first set of doctors didn't tell us, and one in particular disturbed me:  this doctor says that having radiation first might make it harder to have surgery later if the cancer recurs and/or spreads, because the radiation can cause scar tissue, etc.  At least, I think that's what he said (video meetings have their communication issues).  

Were you ever told that, or was surgery not a consideration, in your case? 

I'm kind of wishing we hadn't had the 2nd opinion because he threw in lots of things we didn't previously know - I know that's probably a good thing, but it also complicates the decision process.  He is going to have the hospital's "tumor board" review my husband's case, so that's good, but another week of waiting.  

[Karen_L]

Hi Cara,

I understand how more information feels worse than keeping the information simple. One set of data makes the situation feel more clear, i.e., “If X, then Y.”

But in the world of lung cancer— or rule-out lung cancer— we balance the information we know today with keeping options open for the future…. We do the bast we can, in any given moment. Please know that you can make a decision based on all you know one particular day and weeks or months later they discover something new and BAM you’re already down another path, which they don’t like to change. If you can keep this in mind, you will feel less crazy anxious along the way.

In short, more information may not feel helpful, but it’s ultimately a good thing. 

In terms of your situation, has there now been a definitive cancer diagnosis? This is one thing to be sure you’ve clarified before anything is decided about treatment. If it is, then biomarker testing must be done, preferably before a treatment path is decided on. I suggest that you read more about it so you can start to prepare your list of questions. Here’s a good start on biomarkers.

Now is the time to learn as much as you can so you can formulate your questions. You might want to read about lung nodules, which ultimately can be something to watch (not act on). Make sure your reading is done on reputable sites— Lungevity, Go2, Cancer Research UK, National Cancer Institute — are examples of some. Be careful of sites where people insist there is a single best path or give you advice about the definitive thing. There are also folks out there who swear by this or that alternative treatment, special food, or supplement. These often have negative interactions with traditional therapies, so be sure to research before doing anything. 

That the doc wants to bring your husband’s case to the tumor board is excellent.  They will hash it out until they arrive at consensus. I hope you will see this at an excellent thing, because it is. 

Yes, radiation can cause inflammation. So can other things. If surgery is an option, what would be the benefits over radiation? That’s an important question to ask. Would either treatment now preclude other treatments in the future? Which would be the easiest to tolerate; why?

Surgery was not an option for me given the proximity of the cancer to my heart. Many people prefer radiation because the risks compared to major surgery can be less, depending on the patient. Others prefer surgery. You can’t easily make these decisions beforehand, before all the information has come in and been analyzed. But you can prepare questions and have some general ideas of your broad preferences. 

I have a link to a patient’s self-advocacy guide in my footer. I think it’s pretty helpful. You might find it to be as well. Meanwhile, if there’s nothing to be done until the tumor board meets, make a learning plan. When you're not learning, get cancer out of your mind and focus on something else. 

Keep us posted.

Karen

 

[Cara.M]

2 hours ago, Karen_L said:

In terms of your situation, has there now been a definitive cancer diagnosis?

No.  We are being told it's LIKELY cancer.  My husband's been monitoring nodules (multiple) for a few years.  All have been small and stable, until this one (left upper lobe, along a fissure), which appeared larger than the rest and has been slowly growing, and lit up on a PET scan.

No one's even mentioned biomarkers, so I'll have to ask about that.  We don't know if he'd be a surgical candidate, or which surgery, but my husband is afraid of surgery.  I need to ask him the specifics of that - what exactly he's afraid of.

I guess my husband's okay waiting for the consensus of the tumor board.  I'd be going crazy, thinking about that thing growing in me...

Thanks for all the links, and the calming advice.

[LouT]

Cara,

I think it's time for me to share some information that can prove very helpful to:

1. This is a blog that you need to share with your husband and read yourself.  It's titled "10 Steps to Surviving Lung Cancer; From a Survivor".  It was written by one of our members who was first diagnosed at Stage 3 then the cancer progressed to Stage 4.  Over 18 years later he was declared "cured".
2. The second is "Lung Cancer 101".  It has sections that will lead you through all the stages of LC and will help to guide you through these times that are difficult, shocking, and confusing to all of us.
3. The final one is our "Caregiver Resource Center", a place where family members and friend caregivers can share their experience with one another and find support.

I know that right now somebody giving you "reading" doesn't seem like help but as we move through this journey we are forced to learn as much as possible to better understand the process, our options and opportunities for improving the treatment outcomes.  My hope is that you'll both gain from the experience of those who have gone before you.

Lou

[Tom Galli]

Cara,

Your husband has a complicated case.

I've read all your posts and understand the confusion. Basically, the biopsy doesn't confirm the PET SUV. SUV of about 3.5 can be typical of inflammation, but the 6.7 value is well above the inflammation response -- this indicates metastatic activity. Here is something I wrote a while ago explaining PET scans and SUVs.  

We all are afraid of surgery. I had 3 open thoracotomies in my treatment history and yes I've had SBRT. It was my curative therapy and my last of 5 lines of treatment. SBRT can substitute for surgery. In fact, given that your husband has tumors in both of his lungs, SBRT might be the better treatment.

Here are my ideas. Repeat the PET scan and then repeat the needle biopsies. Yes, biopsies are the "gold standard" in identifying lung cancer but sometimes a needle biopsy misses. If you decide to use SBRT, ensure you consult with a medical oncologist to have adjuvant chemotherapy after radiation treatment. Lung cancer in any presentation has a high probability of recurrence and given tumors in both lungs, you want to do everything you can to avoid a recurrence. Chemotherapy is inconvenient but it is minor indeed compared to a recurrence.

Stay the course.

Tom

[Cara.M]

Thanks, @LouT and @Tom Galli. 

Lou, reading is good.  On retiring 3 years ago, I realized I probably have ADHD, and quickly realized my husband's probably there, too - so staying on course with educating ourselves and remembering what we read can be difficult, but I know I have to try.  That's probably one of my biggest concerns right now - I don't feel "smart" enough to know what I don't know, and to remember what I'm told.  But I appreciate the links and will read the and try to get my husband to read them.  

Tom, I tried to follow your "Treatment history here" link and it takes me nowhere.  Have you changed the location of that?  I'd like to read more about your experiences.  I find it interesting that you mention all the other nodes he has as "tumors."  The doctors we've spoken to so far seem only concerned with the one that reacted to the PET scan and that is growing.

[Tom Galli]

Cara,

I am sorry. I guess I am fortunate enough to survive so long that I've outlived the Google site that held the summation of my treatment history. Here it is, in brief.

• Diagnosed February 4, 2024, stage IIIB, non-small cell, squamous cell, lung cancer.
• First-line treatment: 30 sessions of fractional general radiation to the large tumor (about 4" long and 3/4" in diameter) completely filling the main stem bronchus of my right lung. Adjuvant weekly taxol and carboplation, 6 infusions in total. Result: no evidence of disease (NED) scan after treatment. The objective of first-line was to shrink the tumor allowing the surgeon to remove my right lung. We decided we'd proceed with surgery.
• Second-line treatment: Open thoracotomy resection of my right lung. A week after surgery, I developed a fistula leak in the sutures of the bronchus stump. This required two follow-up surgeries to repair the fistula and 3 stent insertions. Time-wise, almost a year's worth of surgery and recovery. The first CT scan after surgical recovery showed 3 tumors in my left lung.
• Third-line treatment: 6 cycles of taxol and carboplatin chemotherapy with an infusion every 3 weeks. The 3-month post-treatment scan showed NED but the 6-month scan showed two of the tumors returning.
• Fourth-line treatment: 6 cycles of taxol and carboplatin adding the targeted therapy drug Tarceva. Tarceva is now given as a targeted therapy for certain forms of adenocarcinoma. At the time I was given this drug, doctors didn't realize the limitations of the drug. All that was known was the drug worked for a small population of lung cancer patients. Again, I had a NED scan after treatment but my 6-month scan showed a single tumor recurrence.
• Fifth-line treatment: A CyberKnife precision radiation (SBRT) treatment for the persistent tumor in my right lung. 3 months after this treatment, I had a NED scan (June 2007) and I've been NED ever since.

Sorry about using the term tumors to describe your husband's situation. The size you report puts them clearly in the nodule classification.

Stay the course.

Tom

[LouT]

Cara,

Tom is the "Survivor" who wrote the blog "10 Steps to Surviving Lung Cancer, From a Survivor".  When you review his history you can see why I recommend it to all newcomers to our forum.  His original diagnosis was 20 years ago, his treatments were so varied, he suffered numerous recurrences, and yet he is still here living life.  Not everybody is a "Tom", but our forums are replete with many survivors, and I look forward to your husband joining that group.

Lou