Five years....and lung nodule

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Five years....and lung nodule

Postby betsydoglover » Tue Apr 25, 2017 2:45 pm

Hi -

I don't want to worry you, because my outcome was great. Three years after being NED, one of several tiny lung nodules grew. It was barely visible on PET - an uptake of 1.0but my radiologist could tell that it well might be cancer. (I looked at it with him and although subtle, it was slightly brighter than surrounding tissue. We did another CT scan in 2 months, and then I consulted with a thoracic surgeon. He wasn't positive what it was, but we decided to do VATS and remove it. The thinking was a) pretty easy surgery b) if cancer I would be happy to have it out, and 3) if not cancer, then I would be o happy that I wouldn't be worried about the surgery.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Five years....and lung nodule

Postby DanInMN » Fri Apr 28, 2017 2:06 pm

It's the colon cancer again.

This is going to kill my family.

Oh god. I can't even talk to my Dr. until next week. I guess this means stage IV and low chances of survival and forever treatments.

God damn it I feel so healthy. I've been doing everything right.
Last edited by DanInMN on Mon May 08, 2017 10:49 am, edited 1 time in total.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Five years....and lung nodule

Postby DanInMN » Fri Apr 28, 2017 2:26 pm

Does anyone have any experience what the treatment is going to be? Surgery? Radiation? Folfox again?

Does this mean it is everywhere?

Crap. We bought tickets and an AirBnb for a trip to London in August.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Five years....and lung nodule

Postby ktwmn » Fri Apr 28, 2017 3:11 pm

Does anyone have any experience what the treatment is going to be? Surgery? Radiation? Folfox again?

Does this mean it is everywhere?

Crap. We bought tickets and an AirBnb for a trip to London in August.


Dan:

First of all, breathe. Your mind is heading toward the worst case scenario, and unfortunately you have a weekend looming ahead you must get through before you can even speak to your doctor. It is a terrible place to be! But many of us have been there.

Two years ago I was close to 4 years out and a recurrence was found. It had spread. I was devastated. I had to have folfiri+ avastin every two weeks with no end in sight. But I am still here and have been working full time, working out at the gym, swimming and traveling. Right now I am only on maintenance treatments (oral xeloda) and the last scan showed continued regression of 3 small pelvic lesions.

I say this because you can probably still take your trip to London, even if you are on chemo. And if there is no evidence of disease anywhere else you might have VATS and no chemo, and not even have to take more than a day off for the procedure. I am sure you will hear from others on the board who have gone through similar.

Thanks for updating us, and keep in touch. We are all here for you!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Five years....and lung nodule

Postby DanInMN » Fri Apr 28, 2017 4:45 pm

I suppose the trip thing isn't that important. I was just brain dumping.

I'm guessing we'll start with PET scans. All I know is that my nurse said it was the colon cancer and they are still finishing other tests that will help determine upcoming treatment. The worst part is how hard this is on my family. My wife and 18 year old son suffer from depression, and it got very bad for my son just a couple months ago. Dropping this on them is really tough.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

MegTayMcc
Posts: 14
Joined: Wed Dec 28, 2016 10:27 pm

Re: Five years....and lung nodule

Postby MegTayMcc » Fri Apr 28, 2017 9:45 pm

Oh Dan.. I'm very sorry. I don't have any advice, but I'm praying for you and your family.
32/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17 - 07/17
NED

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Five years....and lung nodule

Postby lpas » Sat Apr 29, 2017 12:26 pm

Dan,

I'm so incredibly sorry to hear this news. It just sucks to be dealing with this bombshell when you were so tantalizingly close to free and clear. On the plus side, I suppose it's better for this to happen now than another year down the road when you would no longer be scanning.

If it makes you feel better at all, there are studies showing that the later the recurrence, the better the chances for a full recovery. And yes, there ARE people who survive a stage IV diagnosis. I'd start looking into the pros and cons of RFA vs. VATS and get that sucker out of there as fast as possible. You might also do some research on the ADAPT protocol (Celebrex + Xeloda) for maintenance. If you do a search you'll find quite a few here who've had great success with that model.

Don't give up hope! This isn't necessarily a death sentence.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Five years....and lung nodule

Postby Lee » Sat Apr 29, 2017 2:27 pm

DanInMN wrote:I
. . . I guess this means stage IV and low chances of survival and forever treatments.


The above statement is not true. You can beat this. There are many people on this board who have walked in your shoes today and are very NED today. Yes, this is a setback, butt know that you can (and that you will) beat this.

There are several options, butt let your Dr determine what is best for you. As others have said, chemo may not be necessary.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Five years....and lung nodule

Postby Maia » Sat Apr 29, 2017 3:48 pm

DanInMN,

I'm very sorry to hear about this recurrence but things are changing for good, about treatments.
One thing that might have immediate impact is determined by the MSS or MSI-High status. You might want your doctors to inform you about that, from the biopsy.
Immunotherapies --not chemotherapy-- are available now almost as standard of care, for MSI-high, and there are many promising trials of immunotherapy, in combinations, for MSS.

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: Five years....and lung nodule

Postby DanInMN » Sat Apr 29, 2017 6:57 pm

Thanks for the encouragement and reality checks, all. Sorry for the initial tantrum. :oops:

So with the bad news, here is what I think is hopeful. My CEA is still low, and was a very reliable marker in the past. That suggests that things are still controllable. I also have an amazing support network. I awoke to muffins and fresh fruit outside my door. People have offered to come over, to hang out, to do yard-work, etc. One thing I've learned from all this is that people care and the world is a nicer place than I sometimes think.

I'll be taking a day or two off of work to try to get some appointments and tests lined up. I hope and hope I'm not looking at another round of Folfox, as it kicked my butt last time and I lost a lot of feeling in my hands and feet. But you do what you have to do, I guess.

My wife is on the case. She's bought a new binder for all the test results, notes, etc. I just need to steel myself for the rough stuff.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Five years....and lung nodule

Postby Lee » Sat Apr 29, 2017 7:14 pm

DanInMN wrote:Thanks for the encouragement and reality checks, all. Sorry for the initial tantrum. :oops:
.


NEVER feel bad for venting, dumping, or whatever around here. We all get it. This is cancer, not a common cold. Scary stuff to be dealing with.

Sounds like you have a wonderful network of friends. Believe me, with a caner diagnoses, you do find who your true friends are. One of my best friends today is a person who stepped up to help me when we just knew each other through our kids at that time. And yes, there are good people out there.

When I was going through this, this site was not here (wish it was). There was another site, not as big as this one, that I would follow. I learned there were people who would get a distant met a few years out and would become NED again. Know that you will reside in NEDville once again.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Five years....and lung nodule

Postby CRguy » Sat Apr 29, 2017 11:07 pm

DanInMN wrote: I guess this means stage IV and low chances of survival and forever treatments.

I know you've had further replies and posted yourself ... BUTT ... you just know there had to be at least ONE ! :shock:

CRguy = Stage IVa
survivor 10 years from 2007 resection
had VATS lung met resection / chemo 2010
no current treatments
read my signature topic Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2017
next question .... ?

Rant Vent Spew as needed my friend

ALWAYS on the JOURNEY with ma' homies here
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jens22
Posts: 1013
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Five years....and lung nodule

Postby jens22 » Sat Apr 29, 2017 11:13 pm

Dan this just blew me away. You can get Vats Surgery or Get it zapped out. The end isn't near. You life has just taken another detour. Don't cancel your trip! It scares me because I was discharged by my oncologist at 5 years with a few 2mm nodules in my lungs. Prayers for some answers for you
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Five years....and lung nodule

Postby stu » Sun Apr 30, 2017 3:31 am

Really sorry to hear that . However I will let my signature do the talking and hopefully the encouraging. It will be eight years this summer from a stage 4 diagnosis and the only plans are two cruises.
However it's a disease that requires good management and clinical judgement calls. So get your team together.
I wish you and your family the best.
Much love to you all,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

sammer718
Posts: 14
Joined: Thu Jul 14, 2016 6:22 am

Re: Five years....and lung nodule

Postby sammer718 » Sun Apr 30, 2017 3:58 am

Hi dan,

I'm right there with you. Though I'm only one year and one month out from my last chemo treatment, I'm going through the panic of a recurrence too. Two weeks ago, they found an enlarged lymph node wrapped around my renal artery. I even went as far as being prepped for the biopsy and in the room when the radiologist came in and said he hadn't looked at my scans until just that morning and was not willing to do a biopsy because of the location. He said it was too unsafe and both him and my oncologist are certain it's cancer.

I live in Hawaii, but tomorrow I fly home to New York for good to begin the second round of this nightmare. I'm trying to stay positive and take it one day at a time - I hope you can too.
30 year old female, currently Stage IV
09/2015: Stage IIIc colon cancer. Sigmoid colon resection, removal of tumor.
10/2015-03/2016:12 FOLFOX treatments.
NED until 04/2017: Found enlarged lymph nodes in peritoneal cavity.
05/2017-10/2017: 12 FOLFIRI + Avastin treatments.
NED again until 05/2018: Same enlarged lymph nodes in peritoneal cavity.
Currently doing FOLFIRI + Erbitux.


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