How do you calculate cancer free years?

[Jagsmom]

Hi All, I was diagnosed with 2B non small cell adenocarcinoma lung cancer December 2019. 2/20/2020 I had my upper left lobe removed. Beginning of March I started chemo. Last chemo 5/6/2020. Scan 6/21/2020 (NED). 2 years and 5 years are considered milestones. What date do I use as the start date for calculation purposes? Thanks.

[Denzie Moderator Volunteer]

The doctors use the date you were diagnosed as the date you begin counting your survival. I’m stage 4 so I’m not 100% on when you’re considered cured but I think that it isn’t until you’ve achieved the 5 year mark. I do know that at 2 years the possibility that you will make it to 5 years.

[Janey_H in reply to Denzie]

If you have a reoccurrence does that reset the clock? I had diagnosis 2014 and finished treatment surgery 2015 - then a malignant node was found end of 2017 and surgery / radio finished March 2018. So not sure if 5 years ‘clear’ is the marker or just that I am still standing 5 years on!!

[Denzie Moderator Volunteer in reply to Janey_H]

Yes, what I remember was 5 years NED, each time you had a progression the clock started over. Any reoccurrence after 5 years time NED is treated as a new disease.

I wonder if this is still school or thought on that. As a stage 4 patient, I don’t think that applies to me. I don’t trust that there aren’t some circulating tumor cells there somewhere.

[Jenniferroseolson in reply to Denzie]

The heart really means “I agree”, not that i love that you and I have to assume that we have some circulating cancer cells somewhere.

[Jagsmom in reply to Denzie]

Thanks. That makes sense.

[JanetteR57]

Usually taken as the date of confirmed diagnosis - and yes, if any recurrence that restarts the clock..... the 5 year marker is usually due to the design of cancer services where the 'cut off' for follow up stops at 5 years. This doesn't mean that everyone dies after 5 years but is the only consistent measure that hospitals keep about their patients.... after that, many people are 'cared for' within primary care if any infections etc and only referred back into cancer care if they develop another suspected cancer to be investigated. Immunotherapy is changing the landscape a bit so this may change in future.... in breast cancer for example, many patients/survivors are meant to continue taking their treatments (tamoxifen) for many years post diagnosis but many give up due to side effects - it's only in recent years that immunotherapy and targeted agents have come into such widespread use in lung cancer so a lot of research is still going on about the optimum treatment and follow up time. I hadn't appreciated until I became involved in lung cancer research how the statistics worked and have fedback to those who produce them that it isn't obvious to those not involved in it. I've met survivors who are 20+ years out way before some of today's newer treatments and learnt that many didn't have combination treatments that have also changed the picture.... personally just thankful for every day....

[Janey_H in reply to JanetteR57]

Interesting - thank you. I presume counting from recurrence is from date found rather than date of completion of treatment? Also interesting as when I was originally diagnoses I was told I would be followed up for 10 years..... I wonder if that resets also with the progression scan? I would be 6 years now from original diagnosis and 3 years roughly since some further treatment. The scan regularity reset following the progression but will ask oncologist next time I see him as would be interesting to understand if I will now be followed up until 10 years post progression.....

[Feelingblessed2013 in reply to JanetteR57]

I have a question, if cancer isn't confirmed until a biopsy is done, then would that be the date to go by even if the nodule was found 6 months prior?

[JanetteR57 in reply to Feelingblessed2013]

In the UK I was told it goes from date of diagnosis - I had surgery in Dec 2010 but my diagnosis was Jan 2011 even though it was suspected - no biopsy was done until after surgery so that's taken as the date - whether it's when they had the results or I was given them on my first post surgical follow up on 13/1/2011 I don't know. Many lung nodules aren't cancerous which is why there are very strict guidelines of following up pulmonary nodules for our pilot lung health check screening scans - a bit like moles on skin - a few will turn out to be malignant but many many more won't. I know some UK centres follow up some patients after 5 years if there have been issues.. I guess the time period would run from the confirmation of any recurrence.... standard follow up in the UK is 5 years on our National health service but know some are followed up for longer.... think in services where people pay for healthcare differently they can be followed up for longer...

[Denzie Moderator Volunteer in reply to Feelingblessed2013]

85-90% of nodules are benign. I have nodules that were there when I was diagnosed in 2010 that have not changed at all. It makes sense to use the confirmation date.

[Feelingblessed2013]

My oncologist goes by the date the cancer was discovered. So she uses the date it is seen on a scan.

[JanetteR57 in reply to Feelingblessed2013]

not all issues shown on a scan prove biologically to be cancer until biopsy confirmed. My surgeon was sure enough that whatever it was it had to be removed as it showed as a 'large mass' on chest x-ray, CT and PET scan but only the biopsy post surgery confirmed it to be a rare lung cancer.

[Feelingblessed2013 in reply to JanetteR57]

Same here, the first time he knew it was cancer, but it wasn't confirmed until after the surgery.

My second lung cancer was first see in January 2017, but surgery wasn't until April 2018. In Sept 2019 my oncologist told me she felt I was okay to go to yearly scans because I was well over the 2 year period.