CT Scan - Dr 95% positive it's cancer

[BJeng]

Hello,

Last week Interventionist Pulmonologist said hubby's Low Dose CT Scan is cancer and Bronchoscopy for biopsies, PET, Brain MRI and PFT all this week starting tomorrow.  Dr. said there's 8.5cm mass in middle right lobe, obviously she saw the scan and said it was triggered for review by a board. Hubby quit smoking 12y ago, but 30yr smoker pack/day.  He has sporadic but chronic coughing, we asked for Zpack when we saw "pneumonia" on the CT 2 weeks ago and Zpack brought some relief.  He also had Covid as confirmed with antibody lab test (robust at 1796), but was asymptomatic, we think maybe late April when he was a little sick for less than 24hours.  Hubby believes the medical system is designed to scare us and that it's just a mucous plug/big ball of pus/infection. Interesting that when lying down coughing subsides and rarely at night until just the past couple nights, but I'm sure he's stressed.

Are CT Scans showing consolidation and infiltrate cancer?  I've read over and looked up terms on the Scan trying to understand, I'm having a hard time understanding CT Scan results with research on internet, e.g. consolidation and infiltrate are used with infections and ground glass opacity with cancer.  Here are the concerning phrases/findings on CT Scan Results:

1. There are nonspecific axillary lymph nodes

2. Enlarged mediastinal lymph nodes are present

3. There is a pretracheal lymph node appx 2.1cm in short axis dimension

4. Enlarged right hilar lymph nodes are present

5. Nodule #1 Solid, Right Upper Lobe mean diameter 4.4mm, 4.9mm major axis, volume 33mm

6. There is a 8.5 x 6.1 x 5.8cm area of consolidation in the right middle lobe with surrounding infiltrate. 

Impression: 4BS - very suspicious, recommend PET/CT or biopsy. The findings most compatible with postobstructive atelectasis and pneumonia, however underlying mass lesion resulting in an endobronchial obstruction may be present.

Based on your experiences, is this looking as grim as it appears? I know you're not Drs, I'm just looking for input or confirmation that it is likely cancer so my feet are on solid ground as we embark on 4 intensive exams this week, and yes I know we should know more this week (hopefully).  I'm also bracing myself for the financial aspects as we had to pay 6k up front to the hospital to meet the deductible and the bill just for the Hospital portion is almost 15k just for the Bronchoscopy tomorrow.

Thanks in advance for any insights,

Jeng

 

 

 

[BridgetO]

Hi Jeng,

I'm sorry to hear that your husband is having lung problems.  An experienced doctor can make an educated  guess at what something on a CT is, but a biopsy is the only thing that will diagnose cancer for sure. With something  8cm  in the lung and enlarged lymph nodes, clearly something is amiss. They have set up a thorough array of tests for your husband and when you have the results of those, you should know what he's dealing with. 

If you have a chance to directly ask the doctor the meaning of the "consolidation and infiltrates", that's a much better way of understanding the CT scan than trying to figure it out by googling.  It would be great if your feet were on solid ground going into this, but everybody is at sea with the uncertainty of diagnostic processes. The waiting is the hardest part. 

If it does turn out to be cancer, you need to know that lung cancer is no longer a death sentence. There are a lot of new treatments that let many people live and have a good quality of life for a lot of years after diagnosis. And new treatments are being developed all the time. 

So hang in there, keep us posted, ask questions, and let us know how we can support you.

[Tom Galli]

Jeng,

I agree with Bridget. A radiologist scan interpretation using words you provided could mean cancer or something else. There are lots of reasons "something else" shows on scans; only a biopsy can diagnose our disease and tomorrow's bronchoscopy will be more revealing if a tissue sample is obtained.

My first CT scan showed a 7cm by 2.5cm mass confined to the right main stem bronchus of my right lung. That was in 2004, in the dark ages of lung cancer treatment, well before advances in targeted therapy and immunotherapy. I had more than 3 years of intensive treatment and in March of this year, I was pronounced "cured" of lung cancer. My story is unusual because there were few options in the treatment tool kit, but today people are diagnosed with extensive lung cancer (Stage IV), receive targeted therapy and or immunotherapy and are pronounced NED (no evidence of disease). These pronouncements are becoming common in our community. 

Here are survival tips and tricks that might be helpful at this juncture. While "Dr. Google" contains all kinds of information and you are likely disheartened by googling survival statistics, know these statistics are imprecise and outdated. Why? This provides some insight (do take time to listen to Dr. Stephen Jay Gould's essay linked in my blog). 

So based on my experience, does your husband's look as grim as you believe? You nailed it; I am not a doctor but my experience tells me at this juncture, not so much.

We'll be here to answer your questions as they roll in during your ride down the diagnostic trail. One suggestion, knowledge is power in our disease and here is my recommendation to acquiring both. 

Stay the course.

Tom

[BJeng]

Thank you Bridget and Tom! I will check out the linked sources to educate myself.

Long day, Dr. said it is cancer (pathologist was there during bronchoscopy) but samples need to be examined to determine type and stage of cancer. The fact that it's in 3 lymphnodes (tracheal and subcarinal) and the 8.5cm mass is a cancerous mass but was too oozey to get a sample.  She expects PET to light up tomorrow since it wasn't localized but spread in the lungs.  Dr. mentioned targeted treatment and immunotherapy but oh my, not to be crass or cruel but the cost is exorbitant!? 200k per year is just difficult to fathom.  Plan is to finish tests this week, tumor board meets Tuesday morning and our Dr. follow-up meeting is afterwards.  So I will educating myself until then, thanks to Tom's links and this website.  And then to figure out how and when to tell his job, figuring out the insurance, we don't have STD or LTD, thankfully he's working from home but it's dependent upon people gathering for conferences. But God knows all these details...

Thank you so much, my heart is steadfast, I'm not upset or devasted because I am never alone, suffering is not a stranger to me and my husband is stoic - he said "at 61 you're in the 4th quarter".  My biggest concern is his eternal destiny, I am a born-again Christ-follower and he is not, yet...but God knows this too.

Jeng

[LexieCat]

A couple of things. Most drug companies have financial assistance programs to provide medications to those who can't afford it. Second, many hospitals also have programs to help out with financial issues--ask to speak with the hospital's social worker.

Also, depending on the stage, there is Social Security Disability (SSDI). Those diagnosed with Stage IV disease automatically qualify and it takes only a couple of weeks to be approved. The other good thing about SSDI is that after two years you automatically qualify for Medicare, regardless of age. I'm on SSDI and my benefit is approximately what I would have gotten had I taken SS at full retirement age). 

 

[Tom Galli]

Jeng,

I second Lexie's post about drug company & hospital financial assistance and SSDI. From your description of the bronchoscopy results, it sounds like a Stage IV diagnosis.

Stay the course.

Tom

[BJeng]

Lexie & Tom,

Thank you SO much, I'm almost weepy with relief to know there are some options financially.  DH refuses to discuss, says he's blissfully enjoying his ignorance.  I've been hunting around and it seems it is late Stage 3 or 4, the multiple locations and the Subcarinal plus the 8.5cm mass that was "oozey" certainly means it's advanced.  I've tried to ask him if he has given any considerations if it's a Stage 1 or 2 vs 3 or 4, or if he plans on just accepting whatever they recommend or if he wants to research a little, etc.  Nada! He is not resilient and a sniffle would put him under the covers.  Thank you for your support and showing me avenues of resources, at least I will go into the appointment next week with my footing prepared.  I cannot thank you enough.  Off to the 3 part PFT which DH is super angry about, he thinks it's not fair to have pulmonary tests after poking holes in him on Tues but he finally relented since I told him the Drs need all the pieces to the puzzle and probably the insurance company requires all hoops to jumped through prior to approving any treatments.  I wish you a Thankful Thursday, Jeng 

[LUNGevityKristin]

I'm sorry to hear of your husband's diagnosis. Once you get the complete picture, you can call the Lung Cancer HELPLine and they can also help with financial information as well. Lung Cancer HELPLine 844-360-5864

Please keep us updated on how the next round of tests go!

[BJeng]

PFT done, so now we wait.  DH's file for PFT said diagnosis of lung cancer, but we won't find out kind or stage until our meeting with Pulmonary Interventionist on Tuesday, unless they will post biopsy results in My Chart?  MRI and PET Results are in the MyChart:

MRI - No evidence of intracranial metastasis.  Unremarkable exam - hurray! No cancer in the brain, Thank You God!

PET - I'm still looking at Tom's reference to understand, it appears that the mass is smaller on PET than CT (8.5cm) , but Dr. said she washed/cleared out his lungs during bronchoscopy. Results:

There is hypermetabolic mediastinal lymphadenopathy with greatest involvement of right paratracheal lymph nodes with Max SUV of 5.5 and subcarinal lymphadenopathy with a Max SUV of 6.6. There is hypermetabolic lymphadenopathy within the right hilum with Max SUV of 4.7. No hypermetabolic nodal uptake is demonstrated within the left hilum. 
There is a hypermetabolic 6.6 x 5.9 x 5.5 cm mass within the right middle lobe with a Max SUV of 11.5. This obstructs the lateral segmental bronchus of the 
right middle lobe. There is mild hypermetabolic uptake associated postobstructive pneumonitis. 
No hypermetabolic uptake is demonstrated within the left lung. No hypermetabolic nodal uptake is demonstrated within the axillary regions bilaterally. 
Coronary arterial calcifications are demonstrated. 

Impression: Hypermetabolic 6.6 x 5.9 x 5.5 cm mass obstructing the bronchus lateral segment right middle lobe highly suspicious for primary bronchogenic carcinoma. Correlation with histology is recommended. There is hypermetabolic lymphadenopathy within the mediastinum and right hilum compatible with local regional nodal metastasis. No other hypermetabolic uptake suspicious for FDG avid distant metastatic disease is demonstrated. 

Thank you Kristin, I'm going to make a spreadsheet with Drs, numbers, and add the Lung Cancer # and SSDI info as well for reference.

Thank you all so much, my heart is at peace with the knowledge.  I'm just not sure when to tell DH the PET shows cancer is there, he wants to work tomorrow and play hockey this weekend, I think living as normal as possible is important.

Jeng

[LexieCat]

Jeng, you know your husband better than we do (obviously) but the PET CT is not a diagnosis of cancer. Don't get me wrong--everything points to this being cancer, but you said he prefers not to dwell on it and I can tell you that my own attempts to understand radiology and lab reports have often steered me wrong. The doctors are the experts, so I would suggest letting them explain to both of you what the scans and other test results mean at his next doctor visit. Maybe make a list of questions you'd like answered to bring with you to the visit. Another thing I do is ask the doctors if it's OK to record the visit. I have an app on my iPhone called Just Record, and I tap a button and it records till you turn it off. That way, I'm not trying to write things down and missing other important info, but I'll have something to refer back to if there is something I don't remember.

As I said, just a suggestion.

[BJeng]

Lexie, Thank you for sharing your wise perspective and experience, I think I will just let it lie - it's been a whirlwind.  I love the idea of recording the conversation because DH gets nervous and shows pics of our dogs and it's distracting when I'm trying to write things down, etc.  Truly trying to remember what was said has been very difficult.  I am super thankful it's not in the brain.  Thank you for helping me to "turn off the switch" for next few days.  

 

[TJM]

Been lurking this thread. It's tough being the caregiver...especially if the patient wants to ignore the cancer. Sounds like your doing a great job of advocating. It's really all you can do.

Wishing you both the best

Peace

Tom

[LouT]

Jeng,

Like Tom (above), I've been lurking here.  Mostly because I don't have any experience with a chemo-based therapy.  But I do recognize that being a Caregiver can be a real challenge.  I urge you to take a look at our Caregiver Resource Center that can be found here.  There is a lot of experience there that may be able to help you through this.

Best of luck to you and your husband.

Lou 

[LUNGevityKristin]

I also wanted to let you know about Caregiver Virtual Support services that we have, too. You can check them out here: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

You are always welcome to join with your camera off and just listen but these meetups over zoom are great for support and information sharing.  We also have Mindful Mondays that begin next week. 

[Tom Galli]

Jeng,

My wife as caregiver was not a miracle worker, and I was not a model patient. She had to "encourage" me to complete diagnostics, prod me to pay attention to oncology consultations, and play drill sergeant driving my laps around the ward hallways after my surgeries. My point: only one of you needs to engage to drive diagnostics, treatments and outcomes. So, drive. My wife was not particularly kind to me during my treatment, but her tenaciousness and overwhelming dedication to the cause was what saw me through.

Only one needs to ask the terribly preceptive questions during consultations. When the doctor suggests a course of treatment and your husband hems and haws on agreement, just say: "Doc, we'll email or telephone you an answer tomorrow." Then work on him at home.

Lock and load, put on your Smoky Bear drill sergeant's hat, and motivate.

Stay the course.

Tom

[BJeng]

Thank you TJM, Tom and Kristin.  

Tom - "lock and load, put on your Smoky Bear drill sergeant's hat and motivate" - this cracked me up, thank you.  DH does say I have a "tone of command" especially with the dogs and children.  He did thank me after the PFT for getting him through this week, he's aware of being a difficult patient.

I've had some conversations with DH, about friends and family who have died - how they died - of people who went through chemo and never would again, others who tried everything and others who did nothing. I realize he can only handle 1-5 minutes, but I'm also bringing up what I've learned about the anatomy of the lung, why the subcarinal station 7 involvement is not good.  I've encouraged him to be thinking about risks/benefits of treatments or surgery - even if his opinions/thoughts change every hour - just so our meeting with Pulmonologist doesn't hit him like a Tsunami.  He seems hopeful based on his friend who had ribs cracked for an aortic valve repair and is now back to living normally.  I will not discourage his hope, nor will I share ALL I've been learning about the lungs, stations, staging and metastasis, I am not a Dr, but I'm going into Tuesday as well-prepared as I can.  We had a Trust done 5 years ago, with Wills, Health Directives etc. (the package was a good deal compared to just Wills/Health POA), we don't have much (just our house) but our state is a royal pain with probate and minors.  DH agreed to meet with lawyers to review and go over (and update/change) the documents next Friday - we no longer have minors and need to change some assigned persons.  When setting up the appt DH said "let's do it after the Dr meeting so we know if it's 62 days or 62 months" so this is a good sign that he's not in complete denial.  He has a sharp sense of humor and said the results of his Brain MRI being unremarkable "just confirmed what most people already understood." When we went to the PET scan he approached the desk with "I understand you're having deals on PET Scans today and I wonder if I grab one?" 😁 I know his humor is a coping mechanism, but I'm very thankful for it even though it's distracting in serious moments like Dr. meetings.  As a Caregiver this process and waiting feels like walking steady on a severely rocking boat, I'm very appreciative of the input here.  He wants to see the PET report Sunday night.  He is working today (thank God for work-from-home!), he walked the dogs this morning per usual, and is playing hockey tomorrow, so I'm very thankful for the normalcy of routine and living, knowing this will eventually change or even radically change depending on Tumor Board recommendations and the Dr's meeting.  I've started a spreadsheet of questions, which I will then prioritize and sort in case we don't get the time to get the Qs answered.  

Thanks again, Jeng

[LexieCat]

FYI, the doctor is not going to be able to predict how long he might live. Every person and cancer is different and new treatments are coming down the pike all the time. We have people here given a matter of months and here they are years later. It's next to impossible to predict how well any given patient will respond to treatment, and many of us have to try a number of different lines of treatment before we hit on the one that works long-term. I DO think anyone with a serious health condition should have an updated will or any other appropriate documents, including a living will (or advance health care directive). Beyond making those essential moves, though, most of us do best by planning on sticking around and enjoying life. NONE of us, with or without cancer knows how long we have.

And BTW, I'm all for humor as a coping mechanism. It's my personal go-to. 

[BJeng]

Interventionist Pulmonologist Appt today

Diagnosis: Stage 3B Adenocarcinoma, T3N2M0, inoperable, Stations 12R, 11R, 10R, 4R and 7 involved, the most concerning is Station 7 Subcarinal lymphnodes seem to pushing down to the left which would make it N3 which is not good.  Last night DH reviewed the scans, Bronchoscopy report, Pathology reports, etc. and the lung diagrams, so we were prepared.  We brought the colorful diagrams of the lungs and 14 stations so we had a productive, rational and calm meeting with the Dr.  I'm surprised the Pulmonologists don't have a chart or diagram of the lungs to help aid in the anatomical understanding, it really helped us.

Plan: 4-6 Cycles of chemo every 2-3 weeks + Radiation every day for 6wks, followed by immunotherapy.  I'm presuming this will start next week?  Oncologist Consult is tomorrow and Radiation appt is Monday.  Then we figure out where PCP fits in, DH wants to keep working and all these appts are causing him to fall behind and the stress is not helpful.  Adding in the PCP appt might just be too much?

No idea what the cocktail of chemo will be, but I'm pumping DH with Vit C, Reishi, Turkey Tail, Tumeric and Nettle Leaf which is helping to reduce the mucous production from the cough.  His cough is from the large mass blocking the Right Middle Lobe, which produces mucous, and it's a vicious cycle.  DH asked about what he can do in his diet to not "feed" the cancer, Dr. said stay away from fatty and processed foods (he's a bacon and beef and frozen burrito lover) and stick to basic anti-inflammatory diet but she can refer us to dietician.  DH is not a fan of veg or fruit, and likes his beer and wine every night so we will be asking Oncologist about diet pre and post chemo sessions.  I have immune condition so I eat anti-inflammatory diet already, maybe now DH will join me.

He told one person in HR who told him to email the HQ, which I think is odd, seems like it should be a conversation.  His sense of humor is still humming along nicely. Thanks for listening and for your support.

[Tom Galli]

Jeng,

Has tissue sample from biopsy been submitted for follow-on laboratory testing to assess suitability for targeted therapy and or immunotherapy? This would be my first question at the med onc consult tomorrow. Adenocarcinoma is the form of NSCLC that can display treatable tumor markers. These markers point to specific targeted treatments that are very effective in controlling or eliminating tumors, and it is very important to check for these markers before starting chemo. Moreover, immunotherapy suitability requires an assessment of the PDL status of the lung cancer. Both of these are products of the follow-on laboratory analysis.

If DH's treatment is as stated, he may be able to work through at least four of the six-week cycle. I am assuming the chemo-radiation you are mentioning consists of fractional doses administered over a period of six weeks. In this first-line treatment, radiation is the primary weapon while chemo (normally administered once per week) is an adjuvant therapy. Here is more information on radiation treatment for lung cancer (read in particular at the right arrow: How radiation therapy first into lung cancer treatment plans).

Fractional general radiation administered over a six-week cycle is normally very tolerable for the first three weeks. Then fatigue starts to set in. I had this treatment as my first-line and it was very effective. But, during week 5 and 6, I could barely walk from the car to the radiation clinic.

Stay the course.

Tom

[BJeng]

Tom,

Thank you! Wow! I will be doing more research tonight and be ready for Onc consult tomorrow..  Pulmonologist clearly said immunotherapy would be after the 6 weeks of chemo/radiation.  She said radiation is just 5-10min so I'm guessing it's fractional. I'm not sure about the tissue samples, 4R was sampled as malignant for Adenocarcinoma and Pathology Report is in MyChart, but she said it was cancer at 7, 10, 11 and 12, I think they took samples? I don't see the pathology report on those in the MyChart.  no sample taken from the large mass because it started bleeding.  

Thank you for letting me know what may lie ahead and now to learn about adjuvant, targeted and immunotherapy.  The cough is absolutely maddening...

[LexieCat]

What Tom is talking about is having tissue samples sent out for molecular (aka genetic or biomarker) testing. That's what you need to ask about. Samples don't have to come from the primary tumor--they can take samples from the lymph nodes instead. Also, a liquid biopsy (blood analysis) can sometimes provide additional information.

Be sure to run any/all supplements by the oncologist. For instance, my oncologist advised me to stop taking fish oil and to stop taking Vitamin C (though amount in a multivitamin is OK). There have been studies that suggest Vitamin C might encourage tumor growth. Your body still needs it, so you don't eliminate all of it, but large-dose supplements should be avoided.

[BJeng]

Yikes?! - and I take A LOT of Vitamin C!  I will definitely bring the list of supplements tomorrow. We only just started back today because we didn't know if surgery would be an option, so he's been off supplements for 2 weeks as they didn't want him on anything prior to Bronchoscopy.   Thanks for the clarification on the molecular testing.

[BJeng]

Not sure if I need to start posting elsewhere?  DH Stage 3B T3N2M0 Adenocarcinoma

Here's the update: blood draw for biomarkers yesterday, and

Mon: Radiation Consult & CT Sim & B12 shot  Rx for Folic Acid will start soon.

Fri: Port installation

Mon 9/27 Chemo: carboplatin and pemetrexed, 4 cycles every 2-3 weeks. Radiation will probably also start this day and every day for 6 weeks.

Jan 2022 PET and Brain MRI and then follow-up.  If tumors have shrunk, then 1 year of durvalumab

I searched for the chemo cocktail of carboplatin and pemetrexed and reactions run from mild to overwhelming.  I will be emotionally buckled up and see what happens.  Dr. said "NO" to Vitamin C and all antioxidants and supplements during chemo, he said they interfere with P450.  I'm frustrated because Turkey Tail seems to be very beneficial with numerous studies and is standard protocol with cancer treatments in Japan.  Dr. is okay with Fishoil and D and ginger.  We will stop the supplements after tomorrow since it will be 1 week from the Port installation.  

HR is supposed to contact DH regarding the leave process, we are really hoping he can do some work through this process to keep some normalcy and it's good mentally. However, after reading about the various side effects and real-world reactions to carboplatin and pemetrexed on top of radiation I'm not holding much hope for him to be able to continue working.

[LexieCat]

When I was on the triplet (which included Carboplatin and Pemetrexed), I had fatigue hit about Day 4, which lasted only a couple of days. I also had a bit of brain fog that made it difficult to do my intense legal-research job. It really depends on his individual reaction as well as the type of work he does. 

Incidentally, I'm assuming he will be getting regular CT scans during this time (typically every 9 weeks or so)--that should indicate whether the tumors are shrinking. 

[Judy M2]

Immunotherapy (Durva) would depend on the biomarker found. For example, the EGFR mutation doesn't respond to immunotherapy (and it can cause progression). 

During treatments, I would stay away from any supplements unless approved by both your oncologist and alternative medicine physician. Mine worked directly with my oncologist and was also an acupuncturist. I remember taking botswalia and  high doses of Vitamin D for inflammation (and esophagitis) caused by radiation. 

I had 6x chemo (carboplatin/taxol) and 30x radiation, both of which really kicked my butt. Like Tom Galli, I was so weak I could barely ring the bell at the end of radiation treatments. But I survived, am now on targeted therapy and NED since April. Biomarker testing is essential to find the right treatment plan. Hope you get those results soon.