Question for my fellow survivors

[LouT]

As many of you know, I had my lower-right lobectomy, for my Stage 1a NSCLC, on May 2nd of this past year.  According to everything I've read, including a study by NIH, the appropriate follow-up protocol for such treatment is a CT Scan at the following intervals after surgery---3, 6, 12, 18 and 24 months then, if all negative, annually after that.  I had a CT Scan 3 months after surgery, August of last year, and now my pulmonologist is saying that my next scan should be next August.  That would be a year between scans when I am only 6 months post-surgery.  I do have an appointment with him in February, but what good is it without a scan.  After all, my cancer was originally found early only because of an incidental CT Scan I had.  Have any of you had a doctor recommend this so close out from the surgery?  I pushed back once and they only restated that the CT would be in August...I'm not feeling comfortable about this.  Thanks for your feedback.

[Curt]

My first scan was at three months after my post op visit.  It works out to about four months after surgery.   My next was six months from that.   I’m told I’ll get them every six months for the first two years then move to every year until five years.   Then decide the appropriate monitoring after that.    

[Rower Michelle]

Hi Lou,

An appointment without a scan is probably not the best use of your time.  It’s interesting you are seeing a pulmonologist for follow up whereas an oncologist is more likely to be aggressive with imaging.  Listen to your gut and push for the six month scan. 
Michelle

[LouT]

Curt, Michelle,

Thanks.  I was feeling that he wasn't making the best decision, but you both convinced me to get a scan from someone, if not from him  I'll go to my surgeon.  I never saw an oncologist, perhaps because they didn't believe I needed any chemo after the surgery.  So, I'll try again with the pulmonologist (who had been great up to this point) and if not successful I'll call my surgeon or even my PCP.  

Thanks again for the input.  It solidified my resolve on the issue.

Lou

[Curt]

I do all of my follow up scans with my surgeon, not my pulmonologist.   

[Tom Galli]

Lou,

I also follow medical oncologist scan interval. My pulmonologist only sees me for congestion symptoms. 

I think a 6 month scan after surgery is prudent. A medical oncologist might have a “standard of care” dictate. Maybe it is time you had a get acquainted medical oncologist consult. 

Stay the course. 

Tom

[LouT]

Thanks for all the input everyone.  I did get to speak with my pulmonologist and I asked his rationale for forgoing the scan in Feb.  Here is what he gave as his reasons:

1.  My cancer was caught early at stage 1a.  The tumor removed was small with Excellent Margins and local and even regional lymph nodes were all clear as was my CT Scan 3 months post op.  His concern is not a recurrence of the removed tumor, but a second primary lung cancer that might occur in the future.  He considered my cancer to be "low-risk" for recurrence (I do remember the surgeon saying he considered my surgery had resulted in a cure)

2. If a new tumor were to be found it would likely be too small to even do a biopsy (had this with my original tumor) so I would have to wait 3 months and spend that time in anxiety only to find out that it may well just be a benign nodule (60% of them are). 

3.  Even low-dose scans impart a reasonable amount of radiation that might contribute to another growth rather than serve a valid purpose and the less exposure the better.

While talking with him I could see the points that he was making, but again, after we hung up I looked for studies that showed recommendations for low-risk recurrence cancers, but couldn't really see any specifically.  So, I'm going to the surgeon for a second opinion, asking his recommendations for follow up to the cancer that he removed from me.  I just know that my pulmonologist caught this early when no one else did and was very good thought out my treatment.  At this point I just want another doctor's opinion before I move ahead as I don't really see a lot of reason for the 2/10/20 appointment without a scan; unless he wants to check out my lung function (which I believe should be pretty good).  

I'll keep you all updated on what happens. Thanks again for the input.

Lou

PS: I am going to ask the surgeon if I should connect with an oncologist.

[Rower Michelle]

Hi Lou,

Thanks for sharing the update. I think that sounds like a wise plan, second opinion is probably the best and having a recommendation for an oncologist is just an insurance policy that hopefully you will never need.  Onward! 
Michelle

[Deb W]

Hi Lou,

I had Stage 1B and was scheduled with my surgeon to follow up 6 months later.  In the meantime, I had some new symptoms around the 4th month post surgery.  I didn't feel comfortable with calling my surgeon with these symptoms because he seems so busy.   So, I wrote about it here and asked if everyone had a oncologist - I didn't and it seemed to me I should have one.     Many suggested that I see an Oncologist.  I did just that and was sent for a MRI with and without contrast which showed inflammation.  It turned out that the inflammation  may have been caused by the original surgery.  I am now back on the regular  6 month schedule and will have another scan in April.  While at the Oncologists office - my surgeon popped in and wanted me to know he was tracking my case.  So, it was good to know the Oncology team at the hospital talks to each other.   I believe after the scan in April if everything goes well it will be a year for the next one.  It sounds like the second opinion is the way to go.

Deb

[LouT]

Thanks Deb,

After talking with my pulmonologist I was becoming convinced that his logic made sense.  Then I went and read some of the latest studies (including the NIH study) on post-lobectomy protocol and while they do say that the guidelines should be altered to fit the case data, the findings convinced me that a 6-month scan should be standard even for low-risk (stage 1a) cancer.  I'm waiting to hear back from the surgeon, but now believe that even without the need for chemo I do need an oncologist.  Thanks for your input.

Lou

[2ndtimearound]

My husband's cancer was 1A and had no chemo or radiation...9 months later he has advanced lung cancer.  He did have scans 3 months apart.  He started in August and had a very bad cough and he said it hurt his side like the 2nd day that they removed his upper right lobe of his lung, (April 2019).  He went to PCP in August and they sent him for an x-ray to make sure he didn't have pneumonia.  He didn't but the cough got worse.  Here it is January and they had to drain fluid off his rt lung and it is malignant pleural effusion and has an appt. the later part of Jan. with an oncologist.  He also has had mantle cell lymphoma since Sept. 2014 and also took chemo for 2.5 years.

[hope16]

21 minutes ago, Robb6767 said:

 

We will a pass away some day, why fight it?

I totally empathize with you Robb, but please understand people do have reasons to live little more...please don't spread this negativity...i hope you understand..

[hope16]

Robb that's your perception tthat you are right ...it doesn't really make it real or right.....

[LouT]

Robb,

You don't really "say it like it is", but rather you "say it like you see it".  Yes, none of us is immortal, but you are way offtrack in your pessimistic view of life.  Frankly, I wonder why you bother coming to a forum where people give each other hope and support.  It seems your time here is wasted and, frankly, for people that come here for support, understanding and hope you are anything but a positive contributor of anything they need.  My recommendation would be that you find a forum more to your philosophy and liking where your views would be both welcomed and appreciated.  I, personally, am finding your posts to be counter-productive to the mission of this forum.

Let me repeat, I don't believe we are immortal, but many here are living good lives, filled with love, family and friends because of the treatments, support and hope brought to their lives.  If you don't believe you can be a contributor in that sense please find a place more to your liking.

Lou