New and confused

[Della]

Hi all. I’m so fortunate to have found this forum and I would appreciate your thoughts.

My nodule was found on Jan 6 as an incidental finding in the Right Middle Lobe. CT reports says it is spiculated and 1.1cm with several adjacent nodules the largest measuring 6mm. From there I had a PET scan. The original nodule measured 8-9 cm with SUV of 8.1. Smaller anterior nodule measured 7.5 cm with SUV of 11. (Radiologist pointed out nodule had shown significant growth in the 17 days between CT and PET -  said to consider infection or inflammation). Nothing else lit up on the scan - no nodes or Mets.  

I have had 3 opinions as of how to proceed: 

Diagnosing Pulm doc at private hospital recommended wedge resection. He says extra nodule puts me at Stage 2B.  He believes nodule will be hard to biopsy because of location. He also had me have a  NODIFY test that measures a cancer marker in your blood  awaiting results but I’m not sure of how reliable this is. I asked to be referred to Thoracic Surgeon at academic medical center   

Thoracic Surgeon in hometown unsure if inflammation or malignancy. Wants to do biopsy and lymph node biopsy  (EBUS/ENB). Set surgical date for Feb 23 - later than I am comfortable with due to high growth rate of nodule on pet scan. This would be 48 days from diagnosis to surgery. 
 

We consulted another thoracic surgeon (highly respected in the field) who looked at scans and simply wants repeat a scan and do a RML lobectomy on Feb 14 ( earlier - which makes me more comfortable). I would have to travel to location and recuperate for a couple of days in hotel. 39 days (vs 48) from diagnosis to surgery. I would need to find my own aftercare I presume. And how will being at outside institution affect biopsy specimen for tumor markers? 

At this point I have agonized myself sick over option 2 or 3.  I am severely depressed and anxious and wondering if I can travel and leave my adult children behind worrying. I can’t eat or sleep. Family physician recommends option 3 to be safe.  If I leave hometown academic center, will they treat me after surgery or help me navigate my care after going g to another surgeon? This is causing me much angst. I am already tired of researching and would like to find someone I can trust to point me in right direction after surgery and help with the logistics of obtaining care. I am also truly scared to wait another 9 days for surgery with the large growth rate if the smaller nodule since no scans are showing node involvement. Surgeon 3 is “pioneer of robotic surgery” but I don’t get feeling he Is involved much in the process after surgery. 
 

Sorry for the long post. Forgive me for dumping all this here.Truly appreciate any insight. Thank you all for your service here.

 

[LouT]

Hi Della,

Sorry to hear about your situation, but glad you found us.  Okay, there is a lot to unpack here.  When you reference the nodule previously I believe you meant to say 8-9mm and 7.5mm rather than CM.  Otherwise your staging would be different.  I can appreciate that the nodules may be difficult to biopsy due to their location.   My nodule was a bit smaller, but not by much.  In the end they performed the surgery, took a wedge out and tested if for malignancy.  Once they found it was malignant they removed my lower-right lobe.  I understand the nodule is growing, but most of us have gone through a rather long diagnostic procedure before treatment and many of us felt the same way ("Get this thing out of me!").   In my case my nodule was found in January 2019 and the surgery was performed on May 2 2019 and I've been NED (No Evidence of Disease) since then.

From what I can tell you really have two options.  The first a wedge resection and the second a lobectomy (you indicated that both nodules are in the same lobe).  The third option was really more testing.  My experience and understanding from the medical team I had was that the lobectomy is the gold standard treatment when surgery is the approach.  You would likely be in the situation I was in...they open you up, take a wedge with the nodule, test it and if either are malignant the lobe comes out.  I understand the pulmonologist's recommendation and surgeon's do surgery so I understand his.  But there has been shown to be a measurable difference in recurrence between the two with most surgeons going for the lobectomy.  Of course that is provided that your pulmonary function is good enough for that approach (which most likely it is).

I would ask my doctors the outcomes from the two surgical approaches and make my decision based on the data.  Since you did not mention the PET Scan lighting up any lymph nodes or other areas I'm also making the assumption that everything of concern is in that middle lobe.
We have a lot of information that can help you and I'll share two of them with you.

The first is a well-written piece called "10 Steps to Survive Lung Cancer; by a Survivor and it can be found here.

The next is "Tips and Tricks for Thoracic Surgery" (which is what a lobectomy will be) and it is at this location.

You'll be hearing from more folks soon and they will also have good advice for you (e.g., ask for biomarker testing on any cancerous tissues taken).  In the meantime, please try to stay calm.  This is undoubtedly a stressful time for you, we all know it too well, but once you get settled and a treatment plan in place you will begin to feel much better.  And there is life after lung cancer surgery, so stay tuned for that as well.

Lou

[Tom Galli]

Della,

Don't worry about post length or about including your feelings in your message. We've all been down this road and looked into the eye of uncertainty. Unfortunately, that eye never blinks and uncertainty hangs all around lung cancer.

Your choice evolves to two: hometown surgeon or out-of-town surgeon. But, there is a significant difference in approach. The hometown surgeon is looking to do a biopsy, the out-of-town surgeon wants to remove the lobe of the lung with cancer. That difference make me side with the out-of-town surgeon.

You are right about all thoracic surgeons. They operate and care for you until you are discharged. That is the limit of their practice. But, the out-of-town surgeon's practice hospital likely has an associated "convalescent" hotel that would serve as a place to rest should you need a surgical consultation after surgery.

I would recommend you use your time before surgery brokering a consultation with a hometown medical oncologist. This is the discipline that is going monitor you after surgery. And you've got the time to connect. Moreover, your medical oncologist may have another approach for your treatment, or alternatively may have insight into your hometown versus out-of-town choice.

More questions? Ask away.

Stay the course.

Tom

[Della]

Thank you both for the thoughtful responses. So to clarify since I am not good at expressing myself....The hometown surgeon will do lobectomy if biopsy comes back positive. See Below. Out of town surgeon wants to push forward with no biopsy. 

Option 1 - hometown

- Biopsy -

-if benign then no surgery

-if inconclusive then wedge to find pathology and then lobectomy if path shows malignancy

-malignancy - lobectomy 

Option 2 - Out of town

Lobectomy without biopsy

I have received many different opinions on the value of a biopsy and the thought it may not be worth it because of location. I guess my real question is....do I push forward with lobectomy without biopsy? Thank you again.

[Tom Galli]

Della,

OK, got it now. Option 1 is a wedge resection to get a biopsy during the surgery, then if malignant a lobectomy to remove the lobe. I would think the SUV from the PET scan is strongly suggestive of metastatic activity. That is what is driving my thinking about Option 2.

A wedge resection can be a difficult procedure to recover from. So that causes me to favor Option 2, especially given the doctor is using robotic methods.

Stay the course.

Tom 

[Della]

You are a gem Tom. Your thought are appreciated. I was leaning towards option 2 - lobectomy without biopsy due to spiculation and high SUV max. I felt foolish going forward with no biopsy but I can’t fathom the idea of waiting. Metastatic disease? Ouch. I was finding a small amount of solace from no Mets or positive nodes on the PET. Thank you for your thoughts on wedge resection. I did not know it could be more difficult than lobectomy. Good to know. 

[ColleenRae]

Hi Della - I'm sorry you are joining all of us here, but at the same time, so glad you found us!  Tom & LouT have given you some great information and advice.  I will share my experience if it helps... I do not think you would be foolish to proceed without a biopsy.  I agree with Tom.

I had a Lung CT in Dec 2016 and was found to have several small multiple nodules. I continued to be monitored by my local primary care clinic and local pulmonologist.  I was fortunate in that I was able to take some time to get various opinions. By summer 2018, there was one small tumor (around 8mm if I remember correctly) that was of concern as it had grown a bit and was becoming more dense. I was told it was time to do something with it. It was in the center of my right upper lobe in a difficult area to biopsy.  I met with a local surgeon and a local radiation oncologist. They both wanted me to get a biopsy before they would proceed to do anything, which I was not in favor of due to the risks associated with the biopsy itself - and that everyone agreed the tumor was a likely cancer. I decided to head out-of-town about 2 1/2 hours away to Seattle and went to a well-known cancer care clinic to get their opinion.  I got a PET Scan that showed activity with this small tumor. The clinic referred me to a major academic university hospital to meet with a thoracic surgeon. He did not feel a biopsy was necessary and wanted to do a VATS lobectomy the following week as he was leaving for a 4 week vacation. I was not prepared to do this that quickly (single mom; adult disabled son who lives with me - I needed to make plans around). I went for a 4th consult (!) with another excellent lung cancer surgeon at yet one more cancer/hospital. Things finally clicked for me at that appointment.  He did not see any reason to have a biopsy but did tell me there was a chance this was not a cancer, but he highly suspected it was.  I met him at the end of August 2018 and had my VATS lobectomy in October.  Pathology confirmed the tumor was adenocarcinoma. Stage 1 with no lymph node involvement. I felt very, very grateful. My surgery was on a Monday and I was discharged on Thursday. I returned home with my son and, overall, I was able to manage things quite well on my own. I was sore, groggy and over-medicated... I stopped taking all pain meds, apart from Tylenol. I was terrified of the recovery and whether or not I would be able to take care of myself. This site and the wonderful people I met here, educated and supported me. I felt so lucky to have their support and expert opinions!

I have done well, however, I do have another small tumor (8-9mm) in my upper left lung we've been watching. I find myself facing some of the same feelings I had before. I will be receiving SBRT (radiation) for this small tumor this time around. I could have a wedge resection, but I am going to try to preserve more lung tissue.  No biopsy. We're all sure this is another slow growing cancer.  I will be having a PET Scan next week to (hopefully) rule out any other tumors or nodule activity. I was going to have the radiation last Fall, but had to postpone... fortunately, a recent CT did not show any changes in the tumor. If you are seeing rapid growth, once again, I agree with Tom. I think I would choose to move forward with the lobectomy as well / no biopsy.

Re: how your local hometown providers will be... I've encountered some issues surrounding this. Personally, I feel more confident with the providers I have met in Seattle as this is all they do... treating cancer.  My thoracic surgeon did follow me (up until COVID arrived), but monitoring my Lung CT's every 6 months, but I knew we were going to have to stop holding hands eventually   I remember Tom Galli kept encouraging me to hook up with a medical oncologist... and I really didn't know what that meant.  I finally do! I have a medical oncologist in Seattle. He is like a middle-man; he follows my scans, and presents the results to a tumor board, and gets back to me with recommendations (i.e.  had a consult with one of their Radiation Oncologists).  My local pulmonology clinic keeps wanting to refer me locally (to one of their own RO's). I have to admit, it's been a bit awkward and uncomfortable at times. There are territorial issues involved. Seattle wants me to get radiation tx there; my hometown wants me to stay here. I've decided to let them both down, by getting SBRT at a cancer center halfway between the two!   My medical oncologist said he'd prefer if I went to their RO (because they have "more resources"), but the treatment should not be too different... "maybe a 10% difference" is what he said. I'm not sure what that really means, but I'm doing what will work best for me in my situation. I can't drive to Seattle every day and I don't want to stay there due to the COVID surge we are having, so I will drive about 90 minutes round trip for each treatment (and stay in my own bed / home at night!).

I'm sorry if I rattled on. I'm not known for my brief posts here!  I'm just glad you are reaching out here. I want you to feel confident should you decide to proceed with the lobectomy and no biopsy. I did, and I am glad I didn't put my body through anything more than it needed to. The PET was accurate in my case. I'd go with the out-of-town surgeon and get started on this.  Have a medical oncologist lined up, as Tom recommended, to help you after your surgery. That is the one thing I really could have benefited from that I did not have until well into this journey.  You sound like a strong person... You will do just fine.  Yes, this is all scary, but hopefully you will read our stories here and see the hope.  Best wishes!  Colleen

 

[Della]

Thank you CollenRae. You are an inspiration. As much as I don’t feel I have the energy or mindset to travel, I think that’s what I need to do. I have a fear of being left hanging with no medical support. I believe my hometown doc was trying to stage me before doing surgery with the biopsy/lymph node biopsy and brain scan. (I like his plan just not the delayed timing). Out of town doc just wants it out. I’m currently wondering if I should push PCP to see about brain scan prior to leaving this week? And how does one go about locating a medical oncologist? Are there oncologists who specialize specifically in lung cancer oncology?

I woke up shaky and confused this am. You guys have helped calm me some. Thank you. 

[Tom Galli]

Della,

How does one get a medical oncologist? My best suggestion--ask your PCP. As for a brain scan, that is a good plan but I'd rather have my medical oncologist order and review all scans associated with my lung cancer. They see this stuff everyday and interpreting scans is more a medical art than science. There are medical oncologists who've necked down their practice to thoracic oncology. I'm not sure there is any specialized medical training involved. Perhaps it is expression of a desire to specialize within the discipline of medical oncology.

I believe every lung cancer patient should have a medical oncologist on their team. I think it is also appropriate to have at least one consultation with a radiation oncologist. A radiation oncologist might be a viable alternative to a thoracic surgeon, especially with Stage I and II disease. Precision radiation can be as effective as surgery. Not every lung cancer patient needs a pulmonologist, especially those with early stage diagnosis and no complicated breathing problems (COPD and etc.). 

Stay the course.

Tom

[Judy M2]

Della, there isn't much I can add to the comments already offered by Tom, Lou and Colleen, because at Stage IIIB I wasn't a candidate for surgery. I had chemo, radiation and am now on a targeted therapy for the driver mutation that caused my cancer. 

One important consideration is to have your surgeon submit tissue for biomarker testing. It's so critical to know if any treatable biomarkers exist. If there are, the medical oncologist you choose can create a treatment plan for you should you need it after surgery. 

It took me months to get a diagnosis. I lost my voice in June 2019 and I was misdiagnosed twice until I was finally diagnosed in October 2019. Misdiagnosis is not uncommon with lung cancer. The good news is that I've been NED since April 2021 and healthy once again. 

One other suggestion if you decide to travel. The American Cancer Society does offer free or discounted hotel stays for people undergoing cancer treatment. It's worth checking out.

I hope the decision-making becomes a little easier for you. 

[Della]

You all continue to inspire me and my future is not looking so bleak anymore. I see hope. The anxiety and depression over making the right decision is crippling me. I really would like to stay home. I feel the doctor is more methodical on his approach: biopsy- brain scan-surgery according to biopsy. I will have access to good care and referred to appropriate resources which I have learned are not always available unless you’re in the system. 
 

The thought of traveling is overwhelming. I can do it if I need to. This doc wants to check CT scan and move forward with resection if nothing has shrunk.  There is some question as to whether the quick growing high SUV spot is inflammation. He is a great surgeon bit more of a hands on type than critical thinker. 
 

What has really got me bogged down is the extra time of 9 days to surgery at home hospital. Not sure if I’m taking an extra risk. I will be 48 days out from discovery of nodule. It seems I would stage at 2b if no nodules show on biopsy. 
 

Thanks for listening. 

[Karen_L]

Hi Della,

Let me throw in my two cents. I was very frightened about how much time was passing between the discovery of my initial mass and the start of treatment. The mass-- 5+ cm, if I recall correctly-- was first identified by x-ray on February 8 last year (I thought maybe I just had pneumonia). Because of ice storms, I couldn't get to my initial consult with the thoracic surgeon until the 22nd. Then I had a brain MRI, PET scan, and EBUS, where they took tissue for biomarker testing. 

On March 15, after all the results--except the biomarkers-- were in, I saw the surgeon again, who said my cancer was non-resectable and passed me on to a medical oncologist. I met with her on March 17, and with the radiation oncologist on the 25th. I started actual treatment on April 1-- how appropriate for it to be April Fool's day!

I was freaking out at how long this was taking. I was positive my tumor & nodes would take over my chest. But the surgeon's PA said they were moving very very fast, even though it felt painfully slow.

I'm telling you this because I see you counting days and I want to give you the exact count of my own.

It's been a year. Here I am, with all my lung pieces still in place, a very big tumor that is dead as a doornail and is not more than a scar, and some blobs that used to be lymph nodes.

I can't tell you how much value I place in listening to one's own feelings. 

Deep breaths. You will figure this out.

Karen 

[Della]

Karen,

Thank you for taking the time to share your story. It was so thoughtful for you to communicate your own timeline. I'm so thirilled to hear your treatment has been effective! The sharing of stories like yours are what gives us all hope here. And I know I need that right now! 

My anxiety and depression became unbearable, and after agonizing over my options, I have elected to stay at my home institution. I liked the methodical plan and believe I am happy with the more comprehensive outlook on my situation. I have accepted the extra 9 days and I am much calmer now.  I also have other reasons for staying, including my adult children being able to participate in my care. I will be having a biopsy/lymph node resection next week and surgery scheduled the week after next depending on the results. I will also have a brain scan which terrifies me, but I understand it needs to be done as part of a comprehensive work up. Just yesterday I met with the pulmonologist performing my biospy and he feels there is a high possibility this may be infectious. I am having a hard time wrapping my mind around this as I don't want to get my hopes up. I had just come to terms that it may be cancer and all of your stories here gave me hope that I could deal with that. So, for now, I am trying to stay prepared for that call. I know whatever it is, all of you will be here with support and information. Thank you. 

 

 

[Karen_L]

Della,

You sound much more at peace having made your decision. I'm glad you followed your gut. 

The brain scan's probably an MRI. If you've never had one, it involves being in a long tube for about 40 minutes. The machine is pretty noisy. I had a couple of MRIs before being diagnosed with lung cancer, all done without any anti-anxiety medication (just a lot of deep breathing and a cloth over my eyes.)  Once diagnosed, realizing that MRIs would be a part of my future, I knew I would need the medicine to get through another MRI. I got it, I took it, I was very calm, if a bit loopy, and the MRI was over.  You might want to consider it. 

Karen

[Della]

Thank you for the info on the brain scan Karen. It’s little tips like this that are so helpful. I did not know any of this. 
 

I went in for biopsy this past Tuesday. A CT pre biopsy showed my larger nodule shrinking and the other nodule growing fairly steadily. The doctor felt this was more indicative of infection and discussed following with scans. I asked if he was still willing to biopsy and he said yes. He performed a robotic bronchoscopy. He was able to get tissue from both spots, but since my nodules were difficult to get to and near a fissure, it resulted in a pneumothorax and he placed a small chest tube immediately when he saw it. I was in the hospital for a couple of days. It was a pretty easy recovery and I’m glad he was able to obtain a sample. The results showed a granuloma in the main nodule and the second nodule was highly inflammatory. He and the surgeon agreed that due to the infectious nature, surgery was not warranted next week. They are going to allow the cultures to keep growing and follow up in 2 months with scan and refer to infectious disease when the infection can be identified. My brain scan has additionally been cancelled. They took a few lymph nodes just to check and are awaiting the lymph node pathology. No enlarged nodes showed on CT or PET so hopeful this are negative for cancer as well. I am pretty hopeful they are correct in the diagnosis but still can’t get cancer out of my mind.  I would appreciate thoughts on any of this and really appreciate the support you all provide everyone here! 
 

(Just to clarify, I had something infectious in my lungs on a CT about 6 years ago that was never followed up on. It wasn’t a nodule but “suggestive of lower airway disease.” It seems something has been lurking there for a while and possibly beginning to cause some issues even though I am asymptomatic).