Just back from a colonoscopy, I am wondering if you other early stagers are being watched carefully for other cancers. I realize that I'm in slightly different situation than most of the rest of you, having had breast cancer two years before the lung cancer.

But, it seems that I will be forever in the 'because of your history' mode with my physicians. Not complaining, I am glad to get cooperation and screening for all the other kinds of cancers with no trying to convince the doctors that I need these tests.

But, I am watched very carefully for colon cancer because according to my physician, there is a loose connection between breast and colon. So, I am on the every five year plan with that. Had my first one at 50, and even with no problems with the first one, the second one had to be at 5 years later rather than 10 'because of my history.'

So, I know that we all get our scans and chest xrays routinely now, but what other routine tests do you all get 'because of your history?'

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Hi Cindy - I started having colonoscopies at age 41 as my mom is a colon cancer survivor. After the first time I had a space of 3 years and then they changed the protocol to every 5 years. So far, so good. While my sisters and I aren't crazy about the test (particularly the prep) we go faithfully. I didn't know about the association between colon and lung cancer - interesting. My family history seems to have a little of everything - different cancers, Alzheimers, depression, heart disease, still undiagnosed neurological issues (in dad) and so on ... I obviously don't get tested for all of those, but I certainly panic a little more (for instance when I forget something I wonder if I have Alzheimers) as I age.

Also, after my lung cancer diagnosis, they now do mammography once a year. As I have fibrocystic breasts, I usually also get an ultrasound for certain things they can't discern on mammogram. I guess that is definitely something that changed "because of my history".

One thing that used to drive me crazy was one of my docs (group of them work together) used to think EVERYTHING was cancer after my diagnosis - if my shoulder was sore, before anything was tested or looked at, he was sure it was mets and the cancer had returned. It turns out I have tears in both rotator cuffs - not cancer. I had many a tearful visit with my surgeon about the fears this guy instilled in me. Anyhow, he was definitely a downer and while I appreciate I have a history, I couldn't deal with the fact that he scared me everytime I even had a cold or the flu. However, another in that group was the opposite end of the spectrum who was of the belief that I could get hit by a bus tomorrow so there was no need to worry about anything. Anyhow, I changed to a different group of doctors when he wouldn't write the order for my yearly mammogram even though the radiologist who performed the mammogram stated clearly I was to have them every year. I now have a GP that has that happy medium that I need.

I take it your colonoscopy results were fine and you are good for another 5 years (never long enough to forget the prep unfortunately ).

Linda

Hi Cindy and Linda,

My doctors are definitely on high alert for anything that is unusual in my health due to my dx. However, I've been screened very carefully for most of my life due to my family history. Brain, Breast, Bone and Lung cancer all have graced my immediate family. Sometimes I get so tired of them always checking up on me. I'd like to go a couple months in a row without seeing another doctor!

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

My oncologist hasn't suggested any other testing until recently. I get "scanned" every 6 months right now. I had some bad stomach issues so I had an upper GI and then at my Oncs suggestion and then I had some weird headaches so she said okay let's do an MRI (My first & last!!! - horrible thing). Then my OBGYN said I should have the 50th birthday present - - but my significant other had his first - - and I so enjoyed watching him do the prep - I have not called about doing that one yet and until I forget what he went through with the prep - I think I'm feeling pretty darn good and I will need another suggestion or two before I can see myself doing that - although he was fine the next day and I hope both of you were - but I'll wait a bit on that.

Annette

_________________
5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!

I've had annual skin review since I was about 16 and anything biopsied was negative until last year - my first. So I still see my dermatologist annually - or sooner if there is something questionable. Potential side effect of taking alimta for lc? It may clear up pre-cancerous skin lesions!

With the latest on mammograms, my doc said, "up to you" if I wanted annual or every two years. On the other hand, the docs on Grace have suggested that screening for early detection of long term issues may not be so necessary for those with advanced lung cancer. Oh. They do say having had lung cancer makes you more at risk for other cancers, so for early stage lc, pro-active screening, within reason, seems like a good idea. Balance the radiation with the benefits.

Colonoscopy? Had one at 50, so I have another year and half to think about one, as long as I don't have symptoms that are of concern.

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

I hadn't had a colonoscopy before my lung cancer diagnosis, so I got one afterwards. They found nothing even slightly wrong and said I was good for 10 years.

Besides, heart trouble is the bane of my family; no one ever gets cancer.

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com

Hi Cindy!
I'm a bit late...

I think I watch myself for other kinds of cancers more than my doctor does.

I remember a couple of years after my surgery, I went for a bone scan because I had a big bump on the bone under my knee. The Orthopedic doctor told me that it was fine after the scan, and I apologized for taKing his time confessing that I was afraid I had become a bit of a hypochondriac. He said to me -- Deb, I read your file, and with your history of lung cancer, you NEED to be a hypochondriac. After that I had no apologies, ever, for anything I thought needed to be looked at.

On my Facebook account, I recently shared that I went for a PET scan. What I didn't share is the reason that I had it was because both my doctor and myself felt I needed to be checked - I have been feeling fatigued quite often, and that was the main symptom of how I found my cancer the first time around- I haven't felt this way in almost 8 years so it has been pretty scary. The bloodwork was fine so then we went for the PET. My PET came back clean, and NOW we can look at alternate reasons why I am so tired. But, of course, other cancers had to be ruled out first although I'm not sure my doctor would have suggested the PET, if I didn't mention the possibility of it to her first. That's why I think that I am more watchful than my doctor... she tends to not consider cancer related causes first and tends to keep my lung cancer in the past. I know better.

I still am of the mentality that my cancer surprised me once --- I'm going to be proactive in finding it if it comes back and catching it early again. This is life and death and procrastination doesn't give second chances.

Great topic Cindy!

_________________
Debi
50 years old
Stage 1a-nsclc,1.3 centimeter, adenocarcinoma
Surgery June 16, 2003-upper & mid lobe removed
17 lymph nodes removed - all clear
No chemo or radiation

Hi Cindy -

Stephanie said that

That is pretty much what my doctors have all said. When I asked about having a mammogram, my doctor said "I wouldn't worry about it." For awhile I kind of went along, but just recently went ahead and scheduled a mammogram. Since they can't tell me exactly how long I will live, I decided I would prefer to be proactive. I had a colonoscopy before I was dx this last time, so am not yet due - but if I am still doing well when that time comes, I would still prefer to err on the side of caution.

Diane

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas