3cm mass in right upper lobe of lung

[Kamoto]

I had COVID in Jan of 2020.  X-ray of lung showed pneumonia but no lung mass.  About two years ago I moved to the Rocky Mountains.  Was short of breath at times and thought it was altitude.  It never went away.  I went in recently to the ER with left side chest pain and they didn’t know why.  My BP was 196 over 114.  They did a Chest xray and right lung had a mass.  So they ordered a CT scan.  I have a right paratracheal and hilar adenopathy consistent with metastasis.  Largest node is right paratracheal which measure  1.9 cm.  I have a 3.1 x 2.3 speculated mass in in right upper lobe w tagging of adjacent pleura.  A continuous band like opacity extends inferioly toward right minor fissure.  Couple punctuate nodules left lower lobe and right lower lobe.  Subcentimeter subtle focus of enhancement adjacent to gallbladder fossa.  Medial limb of left adrenal gland is upper limits of thickness.  Meet with pulmonologist was set for 26th of this month but they called and said I must come in Monday.  That’s not good at all.  Grandmother died of lung cancer, mom died of colon cancer.  Both by 65.  I’m 57.  Don’t have much hope, but I’ve been preparing for years that cancer was coming.  Any thoughts on the CT scan?   

[Justin1970]

Hi Kamoto 

I'm really sorry to hear about your news it is frightening but I'm glad you found this forum there will be a lot of help and support from the members, 

I was diagnosed last August with lung cancer in my right upper lobe and 2 lymph nodes involvement, I also went to the Dr's with a pain in the left hand side of my chest but that side was all clear, I have had chemotherapy and radiotherapy and hopefully the tumor and lymph nodes are still shrinking, unfortunately in February the cancer did spread to my brain and cause a seizure, I've now had gamma knife radiosurgery done and I'm starting to feel almost normal again I know the worry,stress and depression is terrible but once you get a treatment plan in place you will feel better about everything, try and stay as strong and positive as you can keep us updated on your progress, I wish you goodluck on Monday, all the best and take care Justin 

[Tom Galli]

Kamoto,

My thoughts on your scan? In truth, not good but I've seen worse. My first one was a zinger! That was 18 years ago and I'm still here.

You've landed on stop one of our diagnostic trail. After your pulmonologist visit, you'll likely go further down the trail with a PET scan, perhaps a brain MRI, and then a biopsy. To prepare, give this a read. Once this process is concluded, you'll have a treatment plan and here is where I take issue with your statement about hope.

Had I read your scan 5 to 8 years ago, I'd agree with your projection. Now, I substantially disagree because of two advances that have moved the survival curve in lung cancer: targeted therapy and immunotherapy.  When you go further down the biopsy trail, ensure you tell your physician to have your biopsy sample sent for laboratory testing to show suitability for these new and very effective systemic treatment means. This type of testing, called biomarker testing, is becoming a standard of care but sometimes it is overlooked. Ensure your's is not!

While your pulmonologist is well equipped to shepherd you through the diagnosis trail, it is time to audition a medical oncologist to segue into treatment. Find one that is well acquainted with new therapies. And while Bozeman and its environs are beautiful (and a fly fishing mecca that I relish), it may not have the medical oncology sophistication to devise a suitable and effective systemic treatment plan. I suggest finding a medical oncologist in a sophisticated cancer treatment hospital like those in Salt Lake City, Denver and perhaps Boise, ID. Once your systemic treatment plan is designed, you'll be able to be treated close to home, but your key to survival may be these new therapies and to unlock them, you may need to travel.

Also, broker a consultation with a radiation oncologist. This discipline uses ionizing radiation to eradicate tumors and your first treatment may indeed be a combination of radiation and chemotherapy often called "chemo-radiation." in our community. Here is some insight into radiation used as a lung cancer treatment method.

Welcome here. Your largest challenge is to assimilate a new vocabulary of unpronounceable drug names and obtuse procedures. We'll help you with that, so ask us questions. And about hope--it is a good thing!

Stay the course.

Tom

[Cornelia]

My story is almost similar - my aunt had lung cancer and my mother had colon cancer. It has always been my biggest fear that I would get lung cancer. I am 71 and went to the DRS for a balance problem, they did CT scan on my carotid arteries and heart - and surprise there was a lung mass of 3.3 x 4 cm. I was shocked and still am(found out in April 22. I have had 2 bronchoscopies and both show cancer in right lower lobe and a lymph node in my mediastinal area. I was a smoker and quit in 1997. Right now I am waiting to hear from my new Oncologist on how to proceed next. I had an Appendectomy in April of 2019 and the CT also showed a lung nodule 2.2 x 2.2. They did another CT scan while I was in the hospital and that DR said there was nothing there. I am beside myself on how that could have happened but I need to look forward and not back. 

Hang in there - nothing is positive until they do biopsies. 

[Kamoto]

Thanks Justin.  The pain on opposite side had the Doctors stumped as well.  Human anatomy is amazing.  Stay strong and I’ll update after meeting tomorrow.  

[Kamoto]

Thanks Tom.  I agree.  I left Stanford Medical where I had a virtual colonoscopy in 2017.  Most people still don’t know it exists.  I’m from Boston.  I haven’t lived there since 1996 but have a massive Italian family there.  I’m inclined to move back, and have the oncology team at Mass General be in charge.  I’m a permanent home worker these days as Silicon Valley has embraced virtual work.  If it’s not so bad, maybe I’ll let Mayo Clinic be my team as that’s a short flight.  Used to live in Scottsdale AZ right up the street from the Mayo Clinic there.  My daughter is doing her Masters as a Nurse Practioner at the U of Alabama Birmingham, so that’s also an option.  Everyone is shocked when I tell them UAB has a top 25 medical school.  

[Kamoto]

Thanks Cornelia.  We sound like the same family heritage.  Italians don’t have heart issues, we don’t have high BP, no cholesterol, but cancer loves us.  My mother has seven brothers and sisters.  Of the eight, six have died of cancer with two still alive.  My mom smoked till she was 40, then quit.  Everyone else smoked and loved their Pall Malls.  I don’t smoke cigs, but I’ve been a cigar smoker since I was twenty two.  Maybe one a month on average.  Keep me posted and I’ll do the same.  Chin up.  Ken

[Kamoto]

Pulmonologist tried to tell me I might have a lung infection or it could be cancer.  Bronchoscope is Friday.  He also pointed out a vertebrae issue which could be a tumor causing me the rib pain.  Will keep you updated after biopsy.  In case I need it, found a great Oncologist at Mass General. 

[Tom Galli]

You might indeed have an infection. We won’t know until biopsy results are in. Good plan on selecting a med onc in Boston. The whole city has world class physicians. 

Stay the course. 

Tom

[LouT]

All digits crossed that you have an infection.  Then you can treat it and move one.  Please keep us updated.

Lou

[Pstar]

Hoping that your biopsy goes well and that it is just an infection. Keep us posted.

[Karen_L]

On 5/18/2022 at 9:27 PM, Kamoto said:

Pulmonologist tried to tell me I might have a lung infection or it could be cancer.  Bronchoscope is Friday.  He also pointed out a vertebrae issue which could be a tumor causing me the rib pain.  Will keep you updated after biopsy.  In case I need it, found a great Oncologist at Mass General. 

I had a 4.5 cm mass and the pulmonologist—whom I love— kept cautioning me with “we really don’t know yet that it’s cancer.” He was correct, technically; the diagnostic process was in early stages. I continue to appreciate his reminders to not jump the gun, but sometimes I do find it exasperating.

I second Tom’s comment about being sure they send out samples for biomarker testing. It’s crucial for treatment planning. 

I wish you all the best as you start down this road. Please keep us posted.

[Kamoto]

Missed the call from oncologist.  I’ll know tomorrow morning at 8.  Biopsy was no issue.  Didn’t even have much coughing when I woke up.  Had one episode later in the day with a bit of blood but not as bad as they said it would be.  Mowing the lawn has become so tiresome though.  Out of breath fast

 

[Judy M2]

Kamoto, glad your biopsy was uneventful. My suggestion for your shortness of breath is to ask your pulmonologist for an inhaler. It really helped me when I had SoB. These days, on a targeted therapy, my SoB is rare. 

[Kamoto]

Invasive adenocarcinoma.  Poorly differentiated stage 3.  A1-3 Thyroid transcription factor is positive.  Doc thinks it might be an EGFR mutation they are seeing after COVID in non smokers.  You can slow this but the cancer mutates around the current drug from astra Zeneca.  The side effects of the immunotherapy drug for NSCLC adenocarcinoma sound worse than the cancer.  Decisions decisions.  

[LouT]

Kamoto,

There is a blog entitled "10 Steps to Surviving Lung Cancer; from a Survivor"  and it can be found here.   There is a lot of good information to be found in it.  In addition, there is information on  "Treatment Options for Lung Cancer", a good synopsis of what the treatment options are that may provide some of what you are looking for regarding chemo.  That is on this page.  We also have forums on treatments and sharing based on mutation types and they can be found here.

Stick around, keep posting and ask questions.  There is a wealth of information and support available to you here by a great group of survivors.

Lou

[Judy M2]

You'll need biomarker testing to confirm if you have an actionable mutation like EGFR. 

I've had chemo and radiation before going on the targeted therapy drug Tagrisso for my Stage IIIB EGFR+ NSCLC. Tagrisso is much easier. I've been on Tag for 26 months and have been NED since April 2021. My side effects are manageable: splitting nails, nasal allergies and itchy rash that comes and goes. 

There are many people living for years on Tagrisso. Your doctor seems to be giving you worst-case information. Although it's true that the cancer cells can eventually figure a way to progress, everyone is different and you don't know the results you'll get unless you try.

This private Facebook group, Tagrisso (osimertinib) Patients & Caregivers Group, is a great source of information and advice about Tagrisso:

https://www.facebook.com/groups/2098822473719352/?ref=share

I don't have experience with immunotherapy, so I can't speak to that. 

[Kamoto]

Hi All, had my brain MRI today.  Results came quick and were not good.  Solitary 6 MM enhancing metastasis within the right frontal lobe (16/101) without apparent mass effect.  Some other interesting inputs.  Couple punctate nonspecific FLAIR hyperintensities in the cerebral white matter.  Sounds like I'm also a candidate for stroke, dementia based on those secondary findings.  Tomorrow is the PET scan.  I have a feeling I'm going to light that up, as my Doc wants to know whats on my gallbladder, liver and my spine.  Oh well, what can you do.  Once this is done and I get my bio marker results, I guess I'll see what an Oncologist says. 

[Tom Galli]

With the brain met finding, book a consultation with a radiation oncologist. This discipline can fry the met with little or no effect to brain function.

Stay the course.

Tom

[Karen_L]

Deep breaths, Kamoto. There's a lot coming at you right now. 

Did you have a conversation with anyone about the MRI findings? By that I mean, someone who is an oncologist and an expert in reading MRIs of brain scans. (I'm seconding Tom's recommendation of a radiation oncologist.)

Typically, consulting with myself about these matters is not productive. In the week before my scans, I always decide what my treatment would be should there be evidence of progression; that's a coping strategy designed to make me feel like I have some control in a situation. I have to be very careful with that-- I have knowledge limited only to my experience and capacity to read peer-reviewed studies. That's a lot, but it pales in comparison to professionals. I use my knowledge to try to ask good questions. 

Hang in. As the data comes in, treatment paths will be clarified.

Karen

[Kamoto]

Well, I lit up that PET scan.  It’s everywhere.  Esophagus, nasal cavity, vertebra, ribs, brain with the original lung cancer.  I’m guessing I don’t make six months.  What can you do.   Thanks everyone for the well wishes.  I’ll keep ya posted.  

[Tom Galli]

Oh my! This is not good news. "What can you do?" Lock, load and proceed deliberately down range to engage and kill your lung cancer.

More than 18 years ago, I was guessing I didn't have 6 months. Thankfully today, we have precision treatment methods that reduce the guess work.

Stay the course.

Tom

[Kamoto]

Biomarker is HER2 w Breast scoring negative.  I have lung adenocarcinoma with HER2 biomarker.  That is why breast score is negative.

Only 2% of lung adenocarcinomas are HER2.  There is a drug called Enhertu which has been approved recently.  Pneumonitis is one deadly side effect. 

 

I have PD-L1: Expression

I don't have Pan-TRK:  not expressed. 

[Tom Galli]

Kamoto,

Normally, the amount of PD-L1 expression is reported discretely. Do you have a numeric value? The level of expression points to if immunotherapy is a possible treatment method.

Stay the course.

Tom

[RJN]

Gosh, that is rough, and I am sorry you are having to go through this. Further up in the thread you mention that immunotherapy sounds harsh. I just want to assure you that it needn’t be. I have had 10 rounds of Keytruda so far, and the side effects are quite manageable (in my case the main ones are inflammation in some of my joints, but it has been sorted with steroid shots) - and my lesions are melting away. I hear the same from other patients when I go to my three-weekly infusions, and from many people in the various immunotherapy FB forums. Yes, some have a tougher time, but there are also many with very few side effects, and quite a few with previous extensive spread who are now stable or NED. So if you are a candidate, it really is worth a shot.

Whatever you decide I wish you all the best, Rikke