Jump to content

Lung cancer in Minnesota


EthanK

Recommended Posts

I've been lurking here for a few weeks and am now feeling ready to introduce myself and my entry into lung cancer. 

In mid-November I was one of the happiest, fittest 45 year-olds I knew. All that changed when my brother (age 47) called on Nov. 8 to say that he had just been diagnosed with stage 4 lung cancer. Still reeling from the news, I figured that my family history was clearly troubling for lung cancer and decided to get  myself checked out. (Our mom died of lung cancer in 1994 at the age of 52.) On Nov. 16, I got the results of an abdominal CT scan: 25 mm lesion in the right lower lobe of my lung. (Why an abdominal rather than a chest CT you ask? I had experienced a GI problem in the previous days and was worried about it. They also did a chest x-ray and, predictably, that didn't show any evidence of anything.)  From there, I moved on to Mayo in Rochester for a full battery of tests and scans. MRI of brain and abdomen were clean. Bronchoscopy was also clean. However, a full chest CT revealed the original trouble spot as well and numerous other small lesions -- about 10 total -- ranging from 3 mm to 7 mm. PET scan showed that just the original spot lit up as cancer. The other smaller lesions did not light up on the PET. On Dec. 4, I had a segmentectomy (VATS) to remove the original tumor. Surgery was successful. Margins were good. All lymph nodes checked out clean. I was officially classified at Stage 1, N0M0. The actual tumor turned out to measure 26 mm.

So, fast forward to the present. I'm back at work. I'm pretty well healed up from the surgery. I've resumed normal activities. I had my first post-surgery scan on Jan. 2 and it showed no progression of any of the other nodules, which are a mix of sub-solid and true GGO. The largest one is sub-solid and measures 6 mm x 7 mm. My docs at Mayo are of course suspicious that I have multi-focal lung cancer. I'm now in Mayo's CANARY program (Computer Aided Nodule Assessment and Risk Yield). The basic upshot there is that I go in for scans to see if (and if so, how fast) my other nodules are changing. If one (or more) looks like trouble, Mayo seems to think they can operate again. Or, at least, that's the plan. I'm still getting going on the scan interval. I suspect that I'll be monthly at first and eventually stretch out to 3 months in between scans, maybe longer depending on what does (or doesn't) happen. Still have lots of questions. Like anyone new to lung cancer, I feel like my world is turned upside down. 

Does anyone out there have any experience with multi-focal lung cancer? Or with monitoring multiple pulmonary nodules? Or with multiple VATS or ablations over time? What questions do I need to be asking my doctors?

Note: So, my brother. His cancer had mets to lymph nodes and thyroid. He has an EFGR mutation (T790M) and is on osimertinib. Early results are promising and the side effects have been manageable. The question there is how long will the drug stay effective. One of the things that's so hard in all of this is that even as I try to process my own diagnosis there's also his right alongside it. I actually already knew that life isn't fair, but this is all a brutally cruel reminder. 

Link to comment
Share on other sites

Hi Ethan,,

Welcome here! I'm glad you decided to introduce yourself. I'm sorry that you and your brother both were diagnosed with lung cancer. I don't have any experience with multi-focal lung cancer or monitoring multiple nodules. I had one small  but suspicious looking nodule that was slow growing and didn't light up the PET scan at all. Because it was in a location where it couldn't be biopsied less invasively, I had a lobectomy in November 2016. It was adenocarcinoma stage 1A, KRAS mutation.

Have you had a molecular analysis (tumor genetics) done on your nodule ? I'm not sure that this is essential at this stage. Generally mutations are an issue when treatment beyond surgery is planned. However, mine was done and I appreciated the info, maybe because I'm an information junkie. I understand that if I should have  a recurrence and chemo/targeted or immunotherapy was a possibility, they would have to redo the tests on any new tumors.

You're fortunate to have your cancer diagnosed early and to have access to a great program.

I hope you'll get some answers to your questions from others on the forum.

Bridget O

Link to comment
Share on other sites

Hi, Ethan, and welcome.

I had several (I believe 3) nodules on my first scan (part of screening program).  They had me come back after three months and there were no changes, so told to come back in a year.  A year later, one of the nodules had grown and was suspicious in appearance.  At PET-CT scan, only the one suspicious nodule lit up.  I had an upper left lobectomy (VATS) and am now on a surveillance schedule for scans every six months.  I just had my first post-op scan in December, and everything looked fine.  They are just continuing to monitor the other nodules, which hopefully will just continue to sit there.  

So as of now, I can't speak to multi-focal lung cancer, but I do know that many things can cause nodules, and most of them are not cancer.  Given your family history, though, I think I"d be inclined to maybe talk with a genetic counselor (something I just scheduled due to a recent breast cancer scare and family history of breast cancer).  

The good thing is that your original tumor was caught early while it was small, and they are watching the others closely, which is a big advantage over not discovering anything until the cancer is far advanced.  I'm sorry about your brother--that has to be difficult.

 

Link to comment
Share on other sites

Thanks so much for replying! It's affirming to know that there are others out there who are or have been in or near the place where I currently find myself. 

BringetO - no, they haven't done a molecular analysis of my tumor, and the reason is exactly the one you mentioned. At this point, that information wouldn't change Mayo's approach to my case. I've heard the approach they're taking with me described as "whack-a-mole." Except, of course, we replace "mole" with "tumor." Sigh. That makes it all sound so much less fun than I remember whack-a-mole being from when I was a kid.

LexieCat - yes, it is a good thing that this was all discovered sooner rather than later. I am of course thankful that I'm under surveillance. (There's a sentence I absolutely never thought I'd write...) My surgeon says they'll "watch [me] like a hawk." I'm grateful. I haven't yet talked to a genetic counselor, but this is something that I will do down the road. I'd be curious to know if what you learn when you talk to someone in genetics is helpful to you. I don't have much sense of what such a consult might provide.

Thanks again to you both for replying. I really appreciate it!

Link to comment
Share on other sites

Ethan,

I'm so glad that your cancer was found early, and that you found us.  The members here are amazing.  I'm on my first "wait, watch and see" for a nodule.  I had clean scans after first and second line treatment, and now a nodule has popped up since my last scan.  We'll take another look in 90 days.  Like your brother, I also had lymph node involvement and mets to the thyroid.  The thyroid issue is apparently quite rare; it stumped both my onc and my ENT.

Let us know how we can help you.  

Link to comment
Share on other sites

Ethan,

Welcome here.

You are indeed fortunate for early discovery and access to a world class medical facility. Your brother has a higher hill to climb but more successfully negotiate Stage IV disease hill climbs every year.  I would encourage your brother to visit and tee-up questions about EGFR treatment.  Many here have first-hand experience.

While I don't have first-hand experience with multi-focal lung cancer, I have a PhD in nodule monitoring!  Here is my "go-to" resource on pulmonary nodules.  As stated in the reference, nodules happen for many reasons and most do not turn into metastatic disease.  (I realize any discovered nodule is akin to the Apocalypse in progress). I'd say try and keep your anxiety in check, but that would be most disingenuous because I sure couldn't control nodule anxiety.  And control or the lack of it is one challenge pillar for every lung cancer survivor regardless of type or stage. The second pillar to conquer is living with uncertainty.  If you figure out control and uncertainty mitigation, you'll be a hero in our community. 

I advise getting copies of your diagnostic imaging and reading into your current state.  I was hospitalized many years after I escaped lung cancer treatment and a hospital administered CT scan shocked my hospital doctor.  The hospital radiologist didn't have access to my scan history and reported out suspicious mets all over the place.  So at your next consult, tell your doctor you want hard copies of all your diagnostic test reports.  

Stay the course.

Tom

Link to comment
Share on other sites

Hi Ethan,

 Hi Ethan, 

You said you don't have an idea of what a genetics counselor can provide, so here is my experience.

I was referred to a genetics counselor because I had had 3 "unrelated" cancers, and after talking to the counselor, I  decided to go with a  full cancer genetics test, covering 67 genes that might be associated  with cancer. 

To clarify for those who don't already know this, these tests aren't the same as the "tumor genetics" or molecular testing that is done on tumor samples which show abnormalities such as EFGR and KRAS mutations. Rather, they are "germline" or somatic genetics, testing for mutations in genes we inherited that can cause or increase risk of certain cancers.

Mutations  are classified as Pathogenic Mutation; Variation, Likely Pathogenetic (VLP): or Variations  of Unknown Significance (VUS). If there is strong evidence that a mutation is NOT likely to be pathogenic, it's not included on the report.

My report came back with one Variant of Unknown Significance, in gene STK 11. This is a gene that's often related to Peutz-Jehger Syndrome. In PJS a person has pigmented spots around the mouth and a specific kind of colon polyp  that appears in childhood. PJS  includes high risk of several cancers. it's clear that I don't have PJS. It's uncertain what the significance is of an  STk mutation in  someone who doesn't have PJS. So basically, the genetics counselor told me to go home and not worry about it and if, down the road, something more definite was established, they would let me know (That's not exactly what she said, but that's what it  sounded like to me).

But I'm an information junkie and I've been reading about this gene and its mutations. I learned that it's a tumor-surpressor gene, and also that the 3 cancers that I've had  (including lung) are ones that people with PJS have high risk of.  There are also reports in the scientific literature of individuals with STK 11 mutations who don't have PJS  having these cancers, but there don't seem to be studies of the prevalence. 

So it's interesting, and it makes me  wonder whether I should be watched for indications of pancreas and gastrointestinal cancers, the  PJS-risk ones that I haven't had. Or maybe I just have too much information and not enough  useful  information. I'm still reading.

Bridget O 

 

Link to comment
Share on other sites

See, I KNEW there was a reason I pegged you as a teacher, Bridget!  That was a great explanation.  Yeah, that's pretty much what I had gathered, based on my reading.  

From a genetics standpoint, I'm mostly interested in the breast cancer.  I was a longtime smoker, so I'm sure that was the most significant contributor to my lung cancer (though, of course, some people are more susceptible than others, for unknown reasons--I just was one of those lucky folks that got it).  My mom, though, died relatively young from her breast cancer.  She was under 50, I believe, when she was diagnosed and had her mastectomy and chemo.  She'd made it ALMOST to the 5-year mark when her elbow pain was ultimately found to be a spinal metastasis.  By then it was too late, but again we are talking 30 years ago that she died.  I don't come from a very big family.  My maternal grandmother lived to her 80s cancer-free, and my aunt (mom's sister) is in her late 80s now with no cancer.  So it might have been just one of those spontaneous things with my mom, but since the family is so small it's hard to say one way or the other.  

I'm a big believer in taking advantage of the advances in medical knowledge whenever possible, so I figure it doesn't hurt to look into it, and the more people have testing, too, the more the science people can study these things.  So there's some social utility to testing, as well.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.