Four Years On

This topic contains 8 replies, has 4 voices, and was last updated by Dr West Dr West 3 years, 10 months ago.

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September 25, 2014 at 1:18 pm  #1266130    

carol42

Hi Everyone,

It’s been a while but I have just had my four year scan and still NED. I am getting less nervous about them now and managed to wait for results without the usual scanxiety! I did get a scare when I saw there was a nurse present as the only time that happened before was to give me the bad news. My surgeon said the longer I went without recurrence the less likely it was but that I would have an increased risk of a new primary, is this correct? What I want to ask is how would I know? I had no symptoms before and, like most early lung cancers, mine was found by accident. After five years they do not normally continue to scan in the UK, is there anything to look out for? Nice to be able to pass on some good news and hope it encourages others as scared as I was when I started on this unwanted journey. For now I am fine and don’t feel any different than I did before, just an elderly cat with dementia to look after!

DX Squamus NCLC in May 2010; open Thoracotomy August 2010; staged 1B; no further treatment.

September 25, 2014 at 2:33 pm  #1266131    
JimC Forum Moderator
JimC Forum Moderator

Hi Carol,

Thank you for sharing your terrific news; we always love to hear inspiring success stories!!

As far as the risk of developing a new primary cancer, Dr. West has said:

“In addition to the risk of recurrence of a prior cancer, there is also a risk of a new cancer developing. We know that patients with a history of lung cancer, not only have a risk of their prior cancer returning, but they also generally have a greater predisposition to develop another, independent lung cancer. In many cases, the cells of the lung have a field defect (a problem that affects not just the cancer, but an area around the cancer as well), often from prolonged exposure to carcinogenic tobacco smoke, which means a large population of cells is also part way along a path toward cancer. The estimate of risk for developing a new lung cancer is in the range of 1-2% per year, and this remains constant with more time after potentially curative surgery for a first cancer.”

He goes on to say:

“These results underscore the need to follow patients closely after treatment for cancer. While it may or may not be feasible to treat a cancer recurrence with curative intent, it‚Äôs certainly appropriate to be vigilant about jumping on a new cancer early, and we know that people with a history of a treated lung cancer are at unacceptably high risk for a new cancer.”http://cancergrace.org/lung/2007/10/30/recurrence-and-new-cancers-after-curative-rx/#more-899

You can watch for typical symptoms of lung cancer and have regular checkups with your physician, but as you say early stage lung cancer often causes no symptoms. In that regard, it may be good to speak to your doctor about the feasibility (under your health care system) of obtaining follow-up scans after you reach the five-year point.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 25, 2014 at 5:51 pm  #1266132    

apat33

I fall into that reoccurrence categorie. Starting in 1992, 4 cancers, 3 NSCLC’s separated by 6 yrs. I’m just about 4 yrs. out from my last bout with 3A. Wish they wouldn’t keep coming back but I’ve had 22 great yrs. Turned 81 this month, took my RV to the Rockies this summer and next month 25 of my family are going to be in Disney World for a week. Based on history I’ve got a couple of yrs. to go before I have to worry, by then I’ll be 83 & who cares.

Andy

September 25, 2014 at 8:29 pm  #1266134    
Dr West
Dr West

Congratulations to both Carol and Andy for doing so well for so long (Andy, if that’s you in the picture and remotely current, you do NOT look 81!).

To clarify, the risk of a second, unrelated lung cancer doesn’t increase years later. Instead, it’s always present at about 1% per year, and that never goes away. In contrast, in the first few years after initial treatment of a cancer, the risk of recurrence far exceeds that, so the risk of a new cancer barely registers. But by 3-4 years later, the risk of recurrence of the original cancer plummets, so that by about year 4, the risk of the old cancer recurring is typically down in the range of 1%/year, and getting lower with each passing year, so that after 4-5 years, long term scanning is being done more to screen for a new cancer than to check for recurrence of the old one.

Because an annual low dose screening chest CT has been shown to significantly reduce the risk of a lung cancer being diagnosed beyond very early stage, and patients who have had one lung cancer are already designated as high risk, I now consider it appropriate to scan every patient with an annual low dose screening chest CT beyond year 4 or 5, as long as they are healthy enough to get it treated (there’s no point in screening someone who is too frail to undergo surgery if you found an early stage lung cancer).

In terms of symptoms, the reality is that early stage lung cancers are likely to develop without symptoms, which is why screening is valuable — it catches cancer when it’s early enough to have a high probability of being cured, vs. waiting until the cancer causes symptoms, by which time it’s often too late to hope to cure the cancer. However, the leading symptoms to be on the watch for would be a cough or shortness of breath.

Good luck.

-Dr. West

September 26, 2014 at 6:29 am  #1266135    

carol42

Thank you Dr. West, I will ask my surgeon when I have my next scan. He is not a fan of CT scans, believing them to be a risk, but he is usually open to discussion. I don’t know if the NHS takes the same view that high risk patients should get ongoing scans but, if necessary, I could pay myself, it would be worth it. He did say if I was still fit he could operate again. It seems to be fairly common that a new cancer shows up years later when you think it is all over. The coughing is difficult as I have chronic catarrh and always have a cough from my throat, is there a different kind of cough I should be aware of? I have never had any shortness of breath before or after surgery. Any advice appreciated.
Carol

September 26, 2014 at 7:27 am  #1266136    
JimC Forum Moderator
JimC Forum Moderator

Hi Carol,

Even if they aren’t currently covered, I hope that by the time you need them low-dose CTs will be. Even if not, at least they are significantly less expensive than full-dose CTs.

Dr. Harman’s post on managing cough may be helpful: http://cancergrace.org/cancer-treatments/2009/05/09/managing-cough/

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 26, 2014 at 5:02 pm  #1266143    
Dr West
Dr West

Coughing up blood or any escalating cough over time would be a reason to contact a doctor, I would say.

Good luck.

-Dr. West

September 27, 2014 at 5:47 pm  #1266156    

apat33

Thanks for the kind words Dr. West. The photo was 9 yrs. old. I’ve updated the photo to one taken last year. Still a lot of miles. I’m feeling good, I’m alert, I’m exercising, I’m traveling, but I’m thinking if the cancer does come back I’ll pack it in rather than do surgery or chemo. That Dr. Emanuel’s idea of hanging it up at 75, may be too early but he made some good points.

Andy

September 28, 2014 at 11:14 am  #1266159    
Dr West
Dr West

I think Dr. Emanuel’s contentious comment should be thought-provoking but not meant to imply that everyone should hang it up at 75. I’ve been amazed at the variability of how fit or ill people are by their 70s and 80s.

-Dr. West

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