A daughter seeking information and advice for her recently diagnosed father

[Alex K]

Hello everyone,

I am here on behalf of my father, who recently discovered that he had lung cancer. He had a "mass" in his lungs that appeared to be benign and was growing slowly over a 6-year period. Unfortunately he did not think to tell me about this mass until his radiologist recommended its removal a few months ago. All the tests he'd done indicated that the growth as benign, but after getting it fully removed via video-assisted thoracoscopic surgery, the pathology report indicated that there had indeed been cancer cells. So now we're trying to figure out what to do next.

My mom passed away of colon cancer 9 years ago. I think I would feel devastated to be going through supporting a parent with cancer again if I weren't still so oddly numb. I hope that at least this time it's been caught early enough that we can stave off the worst from happening.

[LouT]

Alex,

Thanks for moving your post.  Now it can receive the appropriate focus.  As I said in my last response knowledge is really an aid to getting through this disease both for the patient as well as any family and caregivers.  I already sent you a link to "Recently DIagnosed" and I'd like to share some questions and more information for you.  

1. You don't mention the "stage" designated by your dad's doctor?  Please try and find this out.  While not the sole deciding factor for prognosis the Stage is important in determining such things as the appropriate course of treatment and follow up procedures.  Take a look at "Lung Cancer Staging", it will help explain some of the elements and definitions.
2. Has your father's doctor said that they would do biomarker testing on any tissue removed?  Biomarker testing can identify mutations that may be treatable with targeted and/or immunotherapy in the event of recurrence.  You can read about it "Biomarker Testing".
3. The above information, along with my last recommendation can help you to better understand the disease, diagnosis, treatment and potential outcomes.  There is also a blog I recommend for almost all newcomers.  It was written by a member who was diagnosed with Stage 3 then Stage 4 lung cancer 20 years ago and was deemed "cured" some 18 years later.  Its titled "10 Steps to Surviving Lung Cancer; From a Survivor" and it can be found here.

Stay away from "dr. Google", the prognosis stats published are based on 5-year averages and don't adequately take into account newer treatments or the individuality of the patients diagnosed physical conditions or other factors.  We also have a forum targeted to caregivers called "Caregiver's Resource Center" and that can be found here.

Once you get more information feel free to post it here along with any questions you may have.  We have a great group of survivors here whose experiences run the breadth of this disease.

Lou

[edivebuddy]

Sorry you guys are going through this again.   While you didn't say, it appears to be a very slow growing cancer and caught extremely early.  Early treatments have the best chances of success.   But with today's treatments even the latest stages can be put into remission.  When I started mine eventually metastasized to the skin on my neck.   This is normally only seen in end stage lung cancer.  I've been in remission over 3 years. 

What stage did they say it was?

Both adenocarcinoma in situ (AIS) and Minimally invasive adenocarcinoma (MIA) have a 100% 5 year specific survival with surgery alone. 

They should be doing genetic testing on your dad's tumor.  It's what separates today's treatments from yesterday's. While systemic treatments may not be necessary.   It can still guide treatment decisions and follow up care.   

There are guidelines published by the National Comprehensive Cancer Network.  nccn.org The site is free to access but may require registration.   They publish the guidelines for all cancer treatments including lung.  They change often  and an app is available for both android and Apple. Both patient and clinician centric are available for free.

Hopefully your dad is being seen at a National Cancer Institute Designated Cancer Centers .  John Hopkins is close.   If not then a teaching facility. 
Hopefully your dad's treatments are not behind you guys.   If not, cancer treatments have come an incredibly long distance since your mom's battle.   Not only are treatments much more effective, many are better tolerated. 

 

 

 

[Livin Life]

Sending support to you and your father, Alex!  I know the difficulty of supporting family through cancer.... Your dad is lucky to have you even while this is difficult for both of you in different ways.  I hope you have supports for yourself too.  Make sure to take care of you during this time too - as best you can - I realize things suffer so I think in terms of "adequate" for such times....

[Alex K]

23 hours ago, LouT said:

Thanks everyone for your sympathy. @LouT, to your questions, because the lymph node analyses all came back negative, the surgeon told us that my father is currently at stage 1, though because of the possibility that there may be activity in nodes that were not tested or elsewhere, he didn't specify 1a or 1b, and he noted that the stage could change based on the pathology after the lobectomy. From the report after the initial surgery, he tested negative for the biomarkers EGFR L858R, EGFR Exon 19 Deletion, and ALK immunochemistry. From my experience with my mom's cancer, I learned to be wary of Dr. Google except for finding resources like Lungevity for legitimate education and communities like this one here.

As you said, @edivebuddy, this appears to be quite early in the cancer's development, and I am grateful for that.

Though I live in Washington, my father lives on Long Island in New York, and is currently receiving treatment from NYU Langone. I anticipate a fair bit of travel in the near term, and feel fortunate that my father has a supportive partner and other family to help us all through this too.


Alex,

Thanks for moving your post.  Now it can receive the appropriate focus.  As I said in my last response knowledge is really an aid to getting through this disease both for the patient as well as any family and caregivers.  I already sent you a link to "Recently DIagnosed" and I'd like to share some questions and more information for you.  

1. You don't mention the "stage" designated by your dad's doctor?  Please try and find this out.  While not the sole deciding factor for prognosis the Stage is important in determining such things as the appropriate course of treatment and follow up procedures.  Take a look at "Lung Cancer Staging", it will help explain some of the elements and definitions.
2. Has your father's doctor said that they would do biomarker testing on any tissue removed?  Biomarker testing can identify mutations that may be treatable with targeted and/or immunotherapy in the event of recurrence.  You can read about it "Biomarker Testing".
3. The above information, along with my last recommendation can help you to better understand the disease, diagnosis, treatment and potential outcomes.  There is also a blog I recommend for almost all newcomers.  It was written by a member who was diagnosed with Stage 3 then Stage 4 lung cancer 20 years ago and was deemed "cured" some 18 years later.  Its titled "10 Steps to Surviving Lung Cancer; From a Survivor" and it can be found here.

Stay away from "dr. Google", the prognosis stats published are based on 5-year averages and don't adequately take into account newer treatments or the individuality of the patients diagnosed physical conditions or other factors.  We also have a forum targeted to caregivers called "Caregiver's Resource Center" and that can be found here.

Once you get more information feel free to post it here along with any questions you may have.  We have a great group of survivors here whose experiences run the breadth of this disease.

Lou

 

[edivebuddy]

Can't get much better than Langone.  I had drinks around the corner At the garden city hotel with Billy Joel. Didn't even  realize it was him until the bartender told me .  He knew right away  too.  He did get a couple hours of pseudo anonymity. 

[Karen_L]

Oh, Alex, I'm sorry you and your dad are experiencing this. I can understand why you feel numb-- that's a trauma response, and you've certainly experienced that with your mother's death. I have done some reading about it and write about it here.

You mention a few mutations that are negative, but those are nowhere near the number of mutations that have been identified in lung cancer. It would worth following up with the docs on his team as you learn more about biomarkers. Lou sent you a goldmine of information! I'm assuming he'll follow up with an oncologist, but I don't know the treatment pathway for early stage lung cancer that's been surgically addressed. Maybe others do. 

Does your father live with anyone? Have you explored, with a social worker at Langone, possibilities of support services when you can't be there? I'm thinking meals, exercise, counseling....That all may seem unnecessary right now, but keep it in mind for the future. I know all too well the challenges of providing care to an older person in-home. I cared for my 91 year-old mother for three months as she suffered and recovered from Covid. I didn't realize I couldn't keep managing the nighttime and daytime without support. By the time I realized that, patterns of care had been established and mother was unwilling to accept changes,  i.e., help from outside the home. Plus, the prospect of of care-giving from afar feels a bit daunting to me, especially as regards the expense of travel.

I wish you all the luck in the world as you manage this. 

Please keep us posted. 

[Alex K]

Thank you everyone for your sympathy, your support and the helpful resources you are all posting. I am grateful to have found this community because I'm learning a great deal from reading of the experiences of others who have had similar cancer circumstances to my father's. While he is receiving primary treatment at NYU Langone, he has made an appointment with a thoracic surgeon at Memorial Sloan Kettering to get a second opinion. I feel like it would make more sense for him to see an oncologist for a second opinion (he hasn't been to one yet), but perhaps my inclination is incorrect? I've been reading the lists of questions for "What to ask your doctor" if you're recently diagnosed, particularly those relating to surgery, and most of them I think we have covered (the name and methods of the surgery, the percentage of the lung to be removed, risks and benefits, recovery, etc.). As pointed out by @Karen_L, I feel like additional biomarker testing might also make sense before the lobectomy, but, as it is my understanding that this is the gold standard for stage I lung cancer treatment, I figure the lobectomy will have to be done anyway, and maybe I can ask about having testing done for additional biomarkers as part of the pathology report? If anyone has suggestions for additional questions that I should encourage him to address when he meets with the MSK doctor, (beyond those in this list: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/what-to-ask-your-doctor) I would appreciate the advice!

 

[Alex K]

15 hours ago, Karen_L said:

Oh, Alex, I'm sorry you and your dad are experiencing this. I can understand why you feel numb-- that's a trauma response, and you've certainly experienced that with your mother's death. I have done some reading about it and write about it here.

You mention a few mutations that are negative, but those are nowhere near the number of mutations that have been identified in lung cancer. It would worth following up with the docs on his team as you learn more about biomarkers. Lou sent you a goldmine of information! I'm assuming he'll follow up with an oncologist, but I don't know the treatment pathway for early stage lung cancer that's been surgically addressed. Maybe others do. 

Does your father live with anyone? Have you explored, with a social worker at Langone, possibilities of support services when you can't be there? I'm thinking meals, exercise, counseling....That all may seem unnecessary right now, but keep it in mind for the future. I know all too well the challenges of providing care to an older person in-home. I cared for my 91 year-old mother for three months as she suffered and recovered from Covid. I didn't realize I couldn't keep managing the nighttime and daytime without support. By the time I realized that, patterns of care had been established and mother was unwilling to accept changes,  i.e., help from outside the home. Plus, the prospect of of care-giving from afar feels a bit daunting to me, especially as regards the expense of travel.

I wish you all the luck in the world as you manage this. 

Please keep us posted. 

My father has a romantic partner who is very involved in supporting him through his care, for which I am grateful. He also lives close to a few of his siblings and cousins, and they have also been helpful. At this stage I think he remains strong-bodied enough, and he has enough of a support system, that I don't foresee major challenges, but I will certainly be keeping your advice in mind if things take an unfortunate turn.

[edivebuddy]

When he gets his second opinion from MSK he may be talking with an surgeon,  but an entire  multidisciplinary team will come up with a  recommendation.  They have whole tumor boards set b up just for second opinions.   If he does require further treatment it indeed would most likely be with an oncologist.   

Stage Ia has no approved treatments beyond surgery. So there are no reasons to wait for a genetic test results or even an oncologist.   Stage Ib to IIIa have limited systemic treatments available.  Beyond what mutations have treatments available a handful can influence treatment decisions.  The big one would be TP53.   Cancers positive for this tend to spread or grow faster. (mine were positive and took it to the extreme)It may be a reason an oncologist recommends chemotherapy after surgery.   

The NYU Langone Genome PACT tests for all mutations with targeted therapies plus many more that may drive treatment choices.  Somewhere in the neighborhood of 40.  They also offer whole genome sequencing and counseling services if so inclined.   They're a major genomic research center and offer  More testing services than you can shake a stick at

MSK may Want to run their own test MSK IMPACT .   There should be enough material from the surgery to do this.   New York requires the samples to be saved for 20 years so there's time.  

 

Hopefully he's stage Ia or 0 and you guys don't ever need to worry about any of this