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Curt

3 Week Lobectomy Follow Up Tomorrow

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I’ve got my three week follow up with the surgeon tomorrow afternoon.  I’m getting the final lab (not biomarker) results and a more definitive staging.  The initial staging from the surgeon immediately after surgery was Stage 1.  I was able to get through three weeks without thinking much about it.  I’ve been focused on recovering from the surgery.  And now...the nerves set in.  What questions should I be asking the surgeon?  If he tells me there is no need for any follow up treatment should I still consult with an oncologist?   

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Hi, Curt,

I think the questions you want to ask the surgeon include asking for a copy of the surgical report (mine was about a three page narrative of everything that happened during the surgery) and a copy of the pathology report, what kinds of problems or symptoms you should contact him about, and what kind of followup he recommends.  I'd also ask how you can get in touch if you have questions after you've had a chance to read the reports.  My surgeon referred me to an oncologist on the reasoning that if there were ever a recurrence I would probably be looking at chemo or other drug treatment rather than surgery.  If you're Stage Ia, chemo will not be recommended.  If you're Stage Ib (like I was), you may have the option of chem or no chemo--it's not clear whether chemo helps at that stage (for Ia, I've read that chemo actually does more harm than good).  Either way, you will probably have regular scans to follow up.  

Do your best to get a good night's sleep.  Everything's looking good so far, so you have every reason to feel hopeful.

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Hoping you have a good appointment tomorrow.   Three weeks has gone by pretty quickly & I’m glad you have not dwelled on this too much.  Will keep you in our prayers. 

Michelle

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Staged 1A NSCLC Adenocarcinoma with EGFR exon 19 mutation.   No lymph node involvement.  Surgeon felt all went well.  Did not recommend any  follow up treatment, just CT’s every six months.   Gave me a 10% chance of recurrence.  I still can’t get my head around this all.  I feel incredibly lucky to have found it as early as I did, but also can’t shake the feeling that this is something I will worry over forever.

 

 

 

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Curt thanks for sharing.  It’s great news!  I can understand the lingering feeling-this is such hard stuff to deal with.  

There have been more advances with LC treatment in the last two years than in the last 30 years.  The EGFR driver mutation is one of the best studied with over 900 clinical trials underway.   Even with the remote odds- there are good treatment options with more coming.  

Hopefully as time passes this experience will have less of an impact over time.  God is good every day!  

Michelle

 

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Curt, great news on the staging! I hope that you are feeling well and gaining strength! 

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Curt, awesome news, I’m so happy that you found this early and stayed diligent...your story gives me courage that I also have to stay diligent even though I have been trying to just forget it.  I’m sure after a few clear scans it will hopefully get easier for you.  ❤️

Lisa

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My response was pretty brief last night--I was actually in between acts at a Pixies concert (one of my favorites--this is like the fifth or sixth time I've seen them live).  

So my best advice is: go to concerts (or whatever floats your boat).  Enjoy life.  

I spend relatively little of my time (apart from my posting on this forum) thinking about my own lung cancer and the possibility of recurrence.  I have a few things in place--for instance, during the open enrollment period after my diagnosis I switched to a health plan that permits out-of-network treatment, just on the off chance things go south at some point and I want to be able to go wherever.  I'm thinking about relocating, and I consider what kind of healthcare would be available if I need it.  But I don't dwell on it, other than for a couple of weeks when I go for my scans.  

The way I look at it, I am lucky.  I know I have a potential health problem and the means to keep an eye on it before it gets out of hand.  Most people with lung cancer are blissfully unaware until they have symptoms, meaning that the cancer is well-advanced.  I, on the other hand, have gotten a heads-up that I'm at higher risk.  This does NOT mean we are fated to have a recurrence.  There are many lung cancers that are not particularly aggressive.  Look how long yours stayed pretty much the same.  

I have a feeling that with time, this will sort of fade into the background for you, too.  Scan times are always stressful.  I've never had breast cancer, but my mom died of it, so I get a bit stressed when I go for my annual mammogram.  I had a scare last year in that department, but it turned out to be nothing.  So yeah, going for scans and waiting for results might remain a tense time, but it doesn't last that long for me.  And with each clean scan, I relax a bit more (though I will not take anything for granted).

I hope you do something to celebrate once you're feeling up to it--you got a new lease on life!

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Hi Curt,

I am very behind in trying to stay on top of posts here on Lungevity and just read the posts here... I didn't realize how recently you had surgery. You sound great. Your attitude / outlook is wonderful.  I've been inspired! I think it's amazing how active you've been with your own posts and commenting on other people's posts (thank you) both pre and post surgery! It's people like you that make this site truly supportive for all who come here.

You wrote: "Staged 1A NSCLC Adenocarcinoma with EGFR exon 19 mutation.   No lymph node involvement.  Surgeon felt all went well.  Did not recommend any  follow up treatment, just CT’s every six months.   Gave me a 10% chance of recurrence.  I still can’t get my head around this all.  I feel incredibly lucky to have found it as early as I did, but also can’t shake the feeling that this is something I will worry over forever."  I could have written those same words myself. I was also staged 1a with no follow-up treatment. Surgeon stated estimated 8-9% chance of recurrence. The one thing I did not obtain (and wish I'd asked about prior to surgery vs. just assuming pathology would provide) is any mutation testing.  I asked the surgeon about this at my recent check and he said he did not feel it was necessary, very expensive, etc.  I'm not sure I agree with that.

BUT... as you said - I, too, feel incredibly lucky to have found this early.  I have certainly had some severe up's and down's in coming to terms with this, but I think I'm finally getting there.  It just really makes you look at life much differently.

I absolutely LOVE LOVE LOVE what LexieCat wrote to you above.  I took every word she wrote to heart for myself, personally, as well.  Such good advice that I think we can both agree with!  It takes time - and everyone is different in how they approach this - but we have much to be grateful for.  I like Lexie's advice about going to concerts :-) I'm finding a lot of physical activity helps me the most, especially outdoors. Hopefully the approaching warmer weather will help aid in that.  

Just wanted to join in, congratulate you on your news, thank you for your participation here and to encourage you in your progress!

Colleen

 

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Hi Colleen.  Lexi always has great advice and encouragement.  Being active on this board has been a welcome distraction for me during my recovery and everyone here has been very supportive.   

Is it an option to request bio marker testing now?  Hospitals sometimes save samples.  I only ask because they can tell a lot with that information and on the 8-9% chance it returns you will have a treatment plan ready.  If the hospital you had the surgery at doesn’t offer it there are labs that will do it for you. My guess is insurance would pay for it if your doctor requested it.  If the surgeon doesn’t want to it may be worth following up with a pulmonologist or an oncologist.  My surgeon said I don’t need any follow up treatment but I am seeing a genetic oncologist just so I can hear it from them.  I do run the risk of them recommending unnecessary treatments, but I want to a second opinion anyway.  A lung cancer “team” usually consists of your general care physician, pulmonologist, oncologist (if treatment is required) and a surgeon (if surgery is an option).  If your insurance will pay for it I don’t think it would hurt to consult all of them.  A pulmonologist may be helpful with your chest pains and difficulty breathing you mentioned on your other post.  

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My doctors told me there is no point in biomarker testing for Stage I cancer.  It's incredibly expensive, I believe, and I don't know whether insurance would pay for it when you are Stage I.  From everything I've read, that's standard.  I haven't seen any recommendations for it under those circumstances.  If you should have a recurrence, there's the opportunity to have it done then.  You can even start with other treatment (chemo/radiation) in the meantime.  

That makes sense, to me.  While insurance companies do occasionally reject claims for necessary procedures, I can't say I blame them for not approving testing that may never be necessary--especially when it doesn't foreclose later testing.

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In my current situation, I think biomarker testing should be the standard upon diagnosis. I went thru 3 months of chemo with some awful & lingering side effects. Afterwards, during the CT scans getting ready for radiation, they found my cancer had metastasized. They then sent tissue samples for biomarker testing. The results came back I have a BRAF mutation that does not respond to chemo. The chemo was a total waste of money, time & all the side effects which could have been avoided if the testing would have been done at the time of diagnosis.

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Shel, you were Stage II, so the doctors knew, going in, that you would be needing some kind of treatment other than surgery.  So it probably would have made sense in your situation.  I'm just saying when it's Stage I and no chemo is planned, there may be little point in biomarker testing if it appears the surgery alone will be curative.

I'm sorry you've had to go through everything you've been through.   I hope the new treatment knocks the hell out of your cancer.

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Lexi my situation may be unique in terms of genetic bio markers.  My grandmother, father and four of his eight siblings all had lung cancer.  All but one of my fathers siblings who had lung cancer have passed so they can’t be genetically tested.  My grand mother was diagnosed in her 80’s treated with radiation and passed in her 90’s of unrelated illness. The one aunt who is alive found her lung cancer after my dad was diagnosed and went for a screening.  She had a lobectomy, Stage 1, and required no follow up treatment.  That is five out of nine siblings and those mother who had lung cancer.  My grandmothers mother died young.  We are trying to get her medical history but it appears that she passed from cancer.  Three of them also had soft tissue sarcomas.  Throughout we’ve been told there is no hereditary aspect to the type of cancer we’ve all had.  That it was caused because everyone smoked.  I’ve never smoked.  A lot of people say second hand smoke but my parents were divorced and I didn’t live with my father.  I have a cousin who’s never smoked who is tracking multiple lung nodules.  I have three kids, a brother, 23 first cousins and their kids.  I suppose that could all be coincidence but I’m not buying it.  I’m tracking the genetic aspect of this as far as I can go. I want my family members (and everyone else’s) to be able to take a test for specific biomarkers, same as you can with breast cancer.  If they are positive for those markers I want them to be able to get periodic screenings, same as breast cancer.  

In terms of my own potential treatment I was told that biomarker testing was standard procedure (I’ve been going to Sloane Kettering) and that knowing if there are any mutations or biomarkers tells them the best course of action for recurrent lung cancer of that type. I’ve already been told how I will be treated in the event of a recurrence.  I completely understand not wanting to think about that with such a low probability of it happening, but that’s not how I’m wired.  I want to have a plan, a back up plan and a back up to my back up plan.  

I also think that biomarker testing gives researchers better information to research correlating recurrence and affective treatments.  I donated whatever samples of my tumor that are left after testing to whatever studies need it.

 

 

 

 

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Hi Curt,

i wonder whether you're confusing two differeent types of testing. There is biomarker testing, which can also be called tumor genetics. Then there is germline testing.  The germline tesing (sometimes just called "genetic testing" shows any inherited mutations that might be related to an increased risk of cancer. . The BRCA mutations are  probably the best known examples of this. There are some germline mutations that increase risk of lung cancer.  There is a particular kind of EGFR germline mutation that's of this type. Germline mutations will exist in all cells in your body.

Biomarker testing looks at the cells in the actual tumor. This isn't testing predisposition or risk, but what's actually there in the tumor. Those mutations will usually  be only in the tumor itself or in metastases, not in the body in general.

Here's my example.  My biomarker testing, based on a sample of my tumor, showed that I have a KRAS mutation in my tumor, one of the most common mutations in NSCLC. Because I have  had 3 different primary cancers,- breast, cervical/endometrial, and lung. I was referred to a genetics counselor and we decided on germline genetics testing to see if I had some mutation that increased my risk of these kinds of cancer. I was found to have a "variant of unknown significance"(VUS ), an STK-11 mutation. Some germline mutations such as BRCA1 are well known to increase risk of specific kinds of cancers. Some mutations are generally considered to be harmless so far as cancer risk is concerned. For a VUS, like mine, the jury is still out, so to speak. It isn't clearly harmless, nor does it clearly increase risk.

If you are thinking about a familial predisposition to lung cancer, probably germline testing is what's relevant, not biomarker testing. 

 

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Wow Bridget.  That’s quite the trifecta.  I am probably mixing up up the terminology.  I have already gotten the biomarker testing back on the tumor.  I have an EGFR exon 19 mutation.  I don’t get the germline genetic testing back for another couple of weeks.  The surgeon has already told me that the particular somatic mutation I have is not currently associated with any genetic predisposition to cancer.  Either my family is the unluckiest family on earth or there is something in our genetics predisposing us to cancer, lung in particular but also soft tissue sarcomas.  The research on inherited genetic mutations in lung cancer appears to be limited.  I found a study by the Addarrio Foundation focused on the T790 mutation that finished in January.  Results have not been released yet.  The research I’ve found is limited compared to research on inherited predisposition for other cancers like breast cancer.  I think both tests should be a standard for all lung cancer patients.  Yes it’s expensive testing to do, but having a better understanding of it will go a long way towards identifying people who need early screening like exists with breast cancer.  The current requirements for lung cancer screening still work under the assumption that only smokers get lung cancer.  If you aren’t over 55 and you haven’t smoked a lot in your life or aren’t having symptoms you don’t qualify for screening.  That needs to change.  It will save lives.  

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I don't think that's the "assumption" of lung cancer screening--that only smokers get lung cancer.  The point of the screening criteria is that unless you are at particularly high risk, the risks involved in the screening outweigh the potential benefits--a huge proportion of the population has lung nodules that are harmless, and routine screening for all would involve further testing (including invasive procedures) on people unlikely to have lung cancer.  Not much comfort if you are one of those low-risk folks who turns out to get it, but it does make sense overall.  I did post a link to an article a year or so ago about investigation of the possibility that certain blood tests might reveal another high-risk group that would benefit from screening.  That would be terrific.  I do know too that some people at risk due to other factors can be screened.  Even if insurance doesn't pay for it, I believe a low-dose CT scan is generally only a couple of hundred bucks out of pocket.  

The screening is relatively new--it's been around for only the past 5-10 years.  Over time, I'm sure they will further refine the screening criteria.

But yes, I think the familial/genetic testing in your case makes a lot of sense.  I just don't think routine biomarker testing on tumors necessarily is required for most Stage I patients.

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Lexi there are two blood test companies out there right now. Guardant Health 360 has gotten the most attention because they went public last year.  I don’t know how accurate their testing is.  The prospect of a simple blood test to determine predisposition or even diagnosis could eliminate a lot of scans for people at low risk (the 60%) and make those scans a part of a health screening for people determined to be at high risk (the 40%), similar to how prostate (PSA Test) and breast cancer is dealt with now.  We are getting closer.  Understanding the genetic make up of all of the lung cancer types and the genetic make up of all those who have or have had it will get us there that much quicker.  When the hospital asked if if I was willing to donate whatever tissue was left over for research they said only about half of patients are comfortable doing that.  They said something similar when they discussed the genetic testing (germline and somatic) with me.  I assumed it was something everyone would want to do.  There are lots of people (doctors included) who are still unaware of it and some who are not comfortable doing it.  Increasing those numbers can only help with the research and treatment side of things.  

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I don’t have anything to add but I did learn a lot from these post. Curt I’m in the same family situation as you but the cancer is with my siblings. 

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