Colleen20
Posts:2
I had a RUL Lobectomy for NSCL cancer. The pathologist found one, possibly two additional tumors in the same lobe. I had four cycles of chemotherapy (carboplatin and taxatere). I have been NED ever since. Now that I am five years out I need some guidance on how frequent I should be tested and should it be a CT scan or X-ray. My surgeon & oncologist have both relased me to my family doctor but have totally different views on follow ups going forward. Just wondering what you recommend to your patients. I know this is a good problem to have, honestly, I never thought I would be around long enough to have this problem.
Forums
Reply # - February 13, 2012, 04:19 PM
Reply To: After Five Year Follow-Up
Congratulations! It is so good to hear your story. Wishing you everlasting freedom from this disease!
Reply # - February 13, 2012, 08:56 PM
Reply To: After Five Year Follow-Up
It's a great dilemma. There is really no studied and established standard, as we largely consider being disease-free at five years to be one potential definition of being cured. Still, there are late recurrences beyond 5 years, even if they're in the very uncommon to rare range, and people who have a history of lung cancer have a higher risk than other people of a new, separate one.
Because of this, I do feel that some form of surveillance is reasonable, but it does need to be weighed against the cumulative risk of many scans over many years.
My personal approach is to do annual scans from about four years out to around 6 years out, and then I really consider switching to every two year CT scans to minimize risk but still do meaningful surveillance. I consider chest x-rays to be quite inferior to a CT in terms of what you can learn, but my preference is to use them on an annual visit between CT scans if we're going out to every two year CT scans. I personally think it's helpful to have at least an annual visit with the oncologist to maintain some kind of relationship, be able to continue to pick each other out of a lineup, ensure no new worrisome symptoms have developed, and to have an occasion to appreciate a wonderful milestone -- even if you don't need it, it's uplifting for the oncologist to be reminded of great successes like yours.
Congratulations!
-Dr. West
Reply # - February 13, 2012, 09:39 PM
Reply To: After Five Year Follow-Up
Congrats. . .What a wonderful dilemma to have!!!! I wish you nothing but continued "blah" scans. . .
Laya
Reply # - February 13, 2012, 10:38 PM
Reply To: After Five Year Follow-Up
And more congrats! And may many more of us join your dilemma!
Gail
Reply # - February 14, 2012, 04:06 AM
Reply To: After Five Year Follow-Up
Well, we found that 4-5 years would be the magic number; but.
I guess that one is never free of the scourge.
Cheers,
Geo.
p.s. Note hair is returning!
First diagnosed Stage IV Squamous LC Right Lung 3/06. Went thru chemo, then Lobectomy.
Squamous skin cancer 07.
Thought we were home free until 6/10: Adenocarcinoma LC in Left Lung. Had resection.
Then 5/11 diagnosed w/3 Brain Lesions. WBR & 2 Gamma Knife; waiting on final results.
BTW, heavy smoker for over 50 years. Tried to quit, but LC cinched it.
Reply # - February 14, 2012, 05:24 AM
Reply To: After Five Year Follow-Up
Fantastic news Colleen! I'm really happy for you,
Myriam
Reply # - February 14, 2012, 11:17 AM
Reply To: After Five Year Follow-Up
It is true that we don't know how often or how long to scan people, but we also know that one of the most serious risk factors for getting lung cancer is already having been diagnosed with lung cancer in the past. We also now have evidence that annual CT scans can prevent about 20% of deaths from lung cancer in patients at high risk of developing lung cancer, in this case heavy smokers aged 55-74.
Although these are not the same groups of people, both are at high risk and so I have been recommending continued annual CT scans in my >5-year-out patients. One caveat is that screening CT scans will be done as "low dose" scans, with much less radiation than a typical scan. After 5 years and once these low dose scans are widely available I will plan to get these instead of a normal scan.
In no way am I saying Dr. West's answer is wrong, by the way. There is no clear evidence to guide us so all doctors use their best judgement to determine a plan, and this is definitely an area about which multiple smart people (and me too) disagree. It is entirely possible that every 2 year scans will be just as effective, but for now the evidence in screening for new cancers is in annual scans. We do know that CXRs are pretty much useless though!
Reply # - February 15, 2012, 08:11 PM
Reply To: After Five Year Follow-Up
I agree, except the "screening with annual scans" policy tested in the big trial that led to its approval was actually for just three scans in the trial, followed by no consistent plan, and I believe that relatively few in the screened arm received annual scans for more than 5 years.
The concept that CT screening with a low dose scan can be done with pretty minimal radiation removes much of the concern, and for that reason alone, a strong argument can be made to do annual scans. However, I don't think the actual practices from the screening trial provide real data that a policy of sustained annual scans provides an incremental benefit, since the annual element was limited to 3 scans in the trial itself.
-Dr. West
Reply # - January 8, 2015, 02:22 AM
Just dropping a note here on
Just dropping a note here on GRACE to let everyone know that my mom passed away last night. We had her transported to a Hospice Care Center on Saturday.
Thanks to everyone on GRACE who helped guide me through this terrible maze of small cell lung cancer. The work you folks do here is priceless. For everyone on here who is still “in the fight” my prayers are with you.
Reply # - January 8, 2015, 06:20 AM
muhsanjee,
muhsanjee,
I am sorry to hear of your mom's passing. My thoughts are with you and your family for peace and comfort.
JimC
Forum moderator
Reply # - January 8, 2015, 06:35 AM
So sorry to hear of your Mom
So sorry to hear of your Mom's passing. May you find comfort in your love and memories.
Take care, Judy
Reply # - January 8, 2015, 08:23 AM
Thank you so much for letting
Thank you so much for letting us know, and for your very kind words about GRACE.
Please accept my heartfelt condolences.
-Dr. West