Husband's diagnostic journey

[Cara.M]

I'm moving on from the original post in the "introduction" category:

We had a second opinion via televisit with an interventional pulmonologist at a semi-near teaching hospital, who received all my husband's records before we spoke, and who then took his "case" before their tumor board.  The advice of the tumor board was to have a second biopsy/EBUS.  My husband has decided, so that we don't have to travel, to go back to the pulmonologist who did the original EBUS and see if he'll try again to get enough tissue for a definitive diagnosis.

I'm just interested to hear from anyone else who has chosen to try again for a "better" biopsy.  Does it make sense to use the same doctor?  Part of me thinks - if he wasn't good enough to get enough the first time (or it just wasn't possible), is there any point?  And what are the chances that Medicare is going to cover this?

I asked my husband what he's going to do if we have the same, undetermined result.  He thinks then that he WILL move ahead to radiology.  I'm then going to worry over whether we should pursue "Cyberknife" surgery, or if SBRT is enough of a "gold standard" that that will be "good enough."

I'm trying to do the reading that others have suggested, so far.  It's overwhelming and hard to understand, but I'm trying!

[LouT]

It’s not unusual to have tests that aren’t always definitive.  During my diagnosis phase for LC I had already had a CT Scan which showed a nodule.  But a PET Scan was slightly high but inconclusive and then they wanted to perform a CT-guided tissue biopsy (through my back into the lung) but after trying once or twice the doctor decided that because the nodule was so small and tucked into lung tissue he didn’t want to run the potential risk of a collapsed lung and not get a good tissue sample.  So, I was back at ground zero and had to wait another 3 months.  Even after that a biopsy wasn’t possible so they did a resection wedge and biopsied on the spot, resulting in my lobectomy.

If you believe that the doctor may have been the reason for the biopsy result then Please get another doctor.  Biopsies are not always a clearcut procedure, some tissue can be in difficult places or be so small that it is hard to target the right cells.  But since the board is recommending a second biopsy I would do it.  

I can’t answer regarding Medicare, but you can make a call and confirm coverage so you’ll have peace of mind.  I wish you all luck and look forward to further updates.

Lou

[Cara.M]

An update:  my husband apparently wanted to give the first (nearby) doctor a chance, so he set up a second biopsy which he had today.

The doc said he'd try to be more aggressive, so we asked more questions about pneumothorax.  The pre-biopsy CT scan showed no growth or changes in the nodule since 12/7, so that's good.

In reviewing the documents generated from today's procedure, I see that he added a "cryobiopsy" of the nodule (to the needle and forceps biopsies and the lavage), I guess in hopes of getting better/more samples.    He did not (it appears) re-sample the lymph nodes and I forgot to ask if they looked okay, but I guess they did.

No collapsed lung, so now we wait and hope he was aggressive enough and we can see what, exactly, we're trying to determine treatment for.

[LouT]

Thank you for your update.  We have all fingers crossed that the outcome is a good one but whatever happens we’ll be here for whatever support we can give (which is a lot).

Lou

[Cara.M]

Got a call from the pulmonologist who performed the 2nd (and 1st) biopsy today, and my husband has Stage 1 (no further staging details given) adenocarcinoma.  He is opting for the SBRT radiation, and has set up his planning session.  

Cautiously optimistic and thankful for the helpful folks in this forum...

 

[Kamoto]

Can’t they do this by blood?   I think that’s what happened to me, couldn’t get enough tissue during biopsy, so they just went the blood route.  

[edivebuddy]

Is there a reason for SBRT over surgery?

Surgery is the gold standard for curative intent.    

Below is literally the Healio clinical guidance verbatim.

SBRT represents a potential loss in life-years among this patient population.

https://www.healio.com/news/hematology-oncology/20230601/surgery-confers-higher-5year-survival-rates-than-radiotherapy-in-earlystage-lung-cancer

 

 

[Cara.M]

10 hours ago, edivebuddy said:

Is there a reason for SBRT over surgery?

Husband is afraid/reluctant to "go under the knife."  I've tried to tell him the surgery is more "reliable;" his doctors are telling him that SBRT is a viable treatment alternative.  I will read the article - thanks.

[edivebuddy]

I've had many surgeries over the years and none were as bad as I thought they would be.  

I statistically had about a 1% chance of making it past 6 months.  I'm here 42 months later because while not believing in odds per se. I do believe they're useful in choosing treatment options.  I always choose the one with the best odds for success. Ask the radiation oncologist what the 5 year survival rate is for SBRT.  Then ask the same thing from the thoracic surgeon. 

Finding lung cancer early is so rare. 

Continued good luck to the booth of you.  It's very possible to beat this no matter what direction you choose.

 

 

[RJN]

I would tend to side with @edivebuddy here, based on my own experience. I had SBRT to my adrenal gland, which initially appeared to work, but resulted in an aggressive recurrence a year later. Granted, my surgery for the same adrenal gland was much tougher than SBRT and I am only 7 months out, but I would have taken the surgery first had I been given the offer. As a counterweight - the lesions in my lungs and lymph nodes eradicated with a combo of conventional radiation and immunotherapy. 

[edivebuddy]

Unfortunately I don't think he'll be able to receive immunotherapy at stage 1 unless his tumor was larger than 4cm.

 

Someone should run a clinical trial of chemoradiation plus immunotherapy for early stage lung cancer.  I wonder if it would be ethical.

 

[RJN]

There are trials on stage 3, but I think stage 1 people have more immediate and probably better options. As someone who has gone through 2 years of immunotherapy and deeply involved with a forum for immuno-patients, I can testify to the wide range of side effects and uncertainty of outcomes. So while it is an absolute miracle drug for some (including myself) and give many of us hope for a future that wasn’t remotely feasible before, I wouldn’t recommend it to someone with other options. That was the long way of saying that I don’t believe it would be ethical for stage 1 until we know much, much more about why it works for some, but cause harm to others.

[Karen_L]

@Cara.M, thanks for the updates. Has the doctor sent the tissue for biomarker testing???? This is essential for determining treatment routes. Different mutations respond to different treatments (and that's an understatement!)  Here is information on why it is critical : https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing Please pursue this immediately. 

[Cara.M]

@Karen_L - thanks to this forum, I did ask about biomarker testing.  My husband is proceeding with planning for radiation, but his doc assures us that the biopsy samples will be sent for biomarker testing, in the meantime.

[LouT]

Cara,

The counsel your getting here is sound.  I was diagnosed with Stage 1 early on in 2019, had a lower-right lobectomy, no adjuvant treatment and since that time all scans have been negative for malignancy.  So, I’m in the boat of “get the surgery”, but I also believe that each patient can and should decide on the treatment that based on their own wants/needs.  Unless there are other mitigating conditions or reasons surgery (particularly lobectomy) would be the “gold standard” treatment.

Again, having said all the above the patient’s wishes rule, just make sure that his doctor is giving him all the information on outcomes to make that decision.  I pray for good results regardless of approach.

Lou

[Cara.M]

Thanks, @LouT - I'm a "read and ask questions" type and, unfortunately, my husband is not.  He sometimes relies on me doing that for him, and sometimes wants me to just respect the choices he makes, no questions asked - so I'm trying to walk that very fine line.  I've told him that surgery is the best option; I don't seem to be swaying him and I know better than to push.  He will start radiation in about a week to 10 days (having his "planning" CT today).  His radiation oncologist is very reassuring; I'm trying to figure out how or whether to urge him to be cautious in his optimism.

I will still read and ask questions - just in case he turns to me for information and advice - but I don't expect that he will.

[LouT]

Cara,

Since you are the “reader type” here is some information on treatment options.  It is broad, but you’ll see good information about surgery there.  The “Surgery” section under “Treatment Options” can be found here.  One line from the criteria for a surgical approach found on the page is the following;

"When surgery is an option in a patient with non-small cell lung cancer (NSCLC), it is the main treatment because it provides the best chance for a cure."

Whatever the outcome I pray for you both to get a curative result.

Lou