Long tern stage 3 NED, any scares along the way

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angie1975
Posts: 26
Joined: Tue Mar 01, 2016 9:30 pm

Long tern stage 3 NED, any scares along the way

Postby angie1975 » Thu Nov 03, 2016 5:53 pm

I was curious and wanted to see if any of you long term stage 3 NED have had any scares along the way while remaining NED? Examples spots on bones but turned out to be benign etc.I have been NED since surgery in Feb.2016 but seems like with each ct scan a new thing pops up for them to watch, so just curious how many of you have been in that boat or has it been smooth sailing since NED?
Thanks
Angela
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED
7/13/16, CLEAN SCAN NED

mariane
Posts: 482
Joined: Sun Sep 13, 2015 6:16 pm

Re: Long tern stage 3 NED, any scares along the way

Postby mariane » Thu Nov 03, 2016 9:43 pm

I have constant problems with ovarian cysts even after ovaries resection (!) :) They left ovarian remnant....
Additionally I have bone islets in my hip and femur , and one unchanged for 2 years , too round lymph node in my chest....

And yes, I met a man who was over 10 years NED and run every day. I think I wrote it on chemo. The topic has nothing with NEDs and sports. :)
Crazy Mariane on chemo.
Last edited by mariane on Sun Mar 19, 2017 11:21 pm, edited 3 times in total.
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!

angie1975
Posts: 26
Joined: Tue Mar 01, 2016 9:30 pm

Re: Long tern stage 3 NED, any scares along the way

Postby angie1975 » Thu Nov 03, 2016 9:48 pm

HI Marine
Thanks for the reply, that is always good to hear. I don't run every day but I do work out seveal times a week since my onc said exercise is key to reduce your recurrence risk
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED
7/13/16, CLEAN SCAN NED

lpas
Posts: 956
Joined: Wed Nov 19, 2014 11:11 pm

Re: Long tern stage 3 NED, any scares along the way

Postby lpas » Thu Nov 03, 2016 10:14 pm

I wouldn't call myself "long-term" NED but have definitely had some scares. My initial CT (at diagnosis) showed both a liver and a lung spot. After a follow-up MRI, they said the liver spot (9mm) was most likely a hemangioma, and the lung spot (4mm) a calcified granuloma. I worried anyway for a while but neither area has changed much since diagnosis--no growth and no shrinkage during chemo--so am now fairly confident the diagnosis was correct. I also had some issues with bad pelvic pain earlier this year, which turned out to be an ovarian mass. That had me pretty scared since the ovary is one of those sites where CRC likes to go. Thankfully my blood markers seemed stable and pathology ID'ed it as a fibroid. Most recently I had an episode of rectal bleeding that left me convinced I had some sort of local recurrence. The colonoscopy showed it was just a hemorrhoid. I think cancer has turned me into a total hypochondriac.
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS (A146T), TP53, SMAD4, ERBB2, pre-surgical CEA 1.0
2/15 to 7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass ID'ed on US, rt ovary removed. Benign fibroid.
9/16: clean colonoscopy
3/17: clean CT
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4
Mom to a 3 & 5-year-old

angie1975
Posts: 26
Joined: Tue Mar 01, 2016 9:30 pm

Re: Long tern stage 3 NED, any scares along the way

Postby angie1975 » Thu Nov 03, 2016 10:37 pm

Hi Ipas, thanks for the reply that is certainly an awful lot of mini scares that keeps you on your toes. You mentioned that the spots didn't grow much or shrink I am wondering g if thete was any size variations to the lung ones? In Jan. They noted a 3mm nodule in my lower left lung and after first ct post surgery it was the same then was note at 4mm at w ct and then this past oct. Noted at 6mm unchanged
When I see unchanged I think unchanged from growth at all. My onc said there can be variations in the dcan slices and something that small can change when being measure she said she was not worried about it but I kind of was
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED
7/13/16, CLEAN SCAN NED

AussieAssCancer
Posts: 188
Joined: Sat May 21, 2016 10:16 am

Re: Long tern stage 3 NED, any scares along the way

Postby AussieAssCancer » Thu Nov 03, 2016 11:35 pm

I have only been NED since my surgery in March this year. I had my first surveillance scan in April and have my next one in 4wks.

My docs simply said that the scan was 'unremarkable'. I didn't get a copy of the report so have to take their word for it.

That said, it doesn't take away the thoughts in the back of your mind re recurrence etc.

Peace out,

GK
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversal scheduled

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

PainInTheAss
Posts: 606
Joined: Tue Jul 02, 2013 3:08 am

Re: Long tern stage 3 NED, any scares along the way

Postby PainInTheAss » Fri Nov 04, 2016 4:15 am

angie1975 wrote:I was curious and wanted to see if any of you long term stage 3 NED have had any scares along the way while remaining NED? Examples spots on bones but turned out to be benign etc.I have been NED since surgery in Feb.2016 but seems like with each ct scan a new thing pops up for them to watch, so just curious how many of you have been in that boat or has it been smooth sailing since NED?
Thanks
Angela


I know I've seen others who have had spots that didn't grow, and eventually were ruled out as mets, but I haven't had that.

What I have had is my doctor not being worried about things I was. I thought that as a IIIc, my chances of recurrence were very high, especially since a node that lit up on my first PET was too close to my spine to be removed... So they left it in there! That was terrifying to me, but my onc wasn't worried. Once he explained why he wasn't worried, I stopped worrying, too. He said that because my response to chemo-rad was so good (just trace cancer cells left), that this was a strong indication that I was on the path to be cured. I was so relieved when my two year CT and MRI was clear. He was right.

My advice... Ask your doctor to explain why he/she is not worried. They are not BSing you to make you feel better. They are making judgements based on past experience. Once I started believing my doctor, I was so much happier and could live each day without this huge cloud hanging over my head. That may change after my next scan, but I refuse to worry until I have something real to worry about.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Long tern stage 3 NED, any scares along the way

Postby Nik Colon » Fri Nov 04, 2016 8:00 am

angie1975 wrote:Hi Ipas, thanks for the reply that is certainly an awful lot of mini scares that keeps you on your toes. You mentioned that the spots didn't grow much or shrink I am wondering g if thete was any size variations to the lung ones? In Jan. They noted a 3mm nodule in my lower left lung and after first ct post surgery it was the same then was note at 4mm at w ct and then this past oct. Noted at 6mm unchanged
When I see unchanged I think unchanged from growth at all. My onc said there can be variations in the dcan slices and something that small can change when being measure she said she was not worried about it but I kind of was

I have 3 lung spots that were 3,3,3 or under since dx, then 3,5,5, then 4,5,7. They say the same thing, either slight growth or image slicing. Next scan in a month. I also was told a small liver spot, likely a cyst.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

Deb m
Posts: 293
Joined: Tue Jan 14, 2014 10:08 am

Re: Long tern stage 3 NED, any scares along the way

Postby Deb m » Fri Nov 04, 2016 9:24 am

Went thru many scares with my husband. He's been ned for over 5 years, but with each scan something new showed that turned out to be nothing. He's had cysts on his kidneys, pancreas, and liver that they monitored for 5 years and none of them changed at all. They finally cut him lose from follow ups in March. Of course over the entire 5 year period, I worried with each scan fearing that it would show a change, but they never did. Nerve racking to say the least.

deb

Ron50
Posts: 582
Joined: Fri Feb 10, 2006 7:04 pm

Re: Long tern stage 3 NED, any scares along the way

Postby Ron50 » Fri Nov 04, 2016 5:53 pm

Hi Angie,
I was aggressive stage 3c into six nodes, dxed in Jan 1998. Over the years I have been diagnosed(preliminary diagnoses) with stomach cancer. That turned out to be severe ulceration. They were considering removing my stomach but 80 mg of somac (proton pump inhibitor) every day for the last 16 years has held it in check. I was run thru the whole gammut of checks for bladder cancer when they found a considerable amount of blood in my urine. I was cleared and the problem was the passage of uric acid kidney stones. I started losing protein thru my kidneys . My nephrologists did three biopsies and scans. No cancer but nephrotic syndrome caused by an unknown auto-immune disease of the kidneys. I take cyclosporine twice a day to keep the protein loss in check. I had suspected pancreatic cancer after I was hospitalised for acute pancreatitis. Turned out to be a gall stone blocking off my pancreatic duct. Lost my gall bladder. I have had eleven colonoscopies since 1998. The first found the cancer and half of those since the first have resulted in the removal of polyps . I have had two mm polyps with displaysia. I have had several skin cancers removed over the past nineteen years mainly due to immuno suppressants lowering my immunity. I used to walk around fifty miles a week until severe motor sensory peripheral neuropathy of both feet and legs made it impossible to continue. I end year 19 and start year 20 of survival in January. Surviving survival is not easy. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

lpas
Posts: 956
Joined: Wed Nov 19, 2014 11:11 pm

Re: Long tern stage 3 NED, any scares along the way

Postby lpas » Sun Nov 06, 2016 10:52 am

angie1975 wrote:Hi Ipas, thanks for the reply that is certainly an awful lot of mini scares that keeps you on your toes. You mentioned that the spots didn't grow much or shrink I am wondering g if thete was any size variations to the lung ones? In Jan. They noted a 3mm nodule in my lower left lung and after first ct post surgery it was the same then was note at 4mm at w ct and then this past oct. Noted at 6mm unchanged
When I see unchanged I think unchanged from growth at all. My onc said there can be variations in the dcan slices and something that small can change when being measure she said she was not worried about it but I kind of was


Mine has always been either 4 or 5mm and I got the same story from the oncologist--most likely measurement issues. Keep in mind that benign spots can also grow. Check out JulieJ's signature--I'm pretty sure she had a lung spot that grew but turned out to be benign.
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS (A146T), TP53, SMAD4, ERBB2, pre-surgical CEA 1.0
2/15 to 7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass ID'ed on US, rt ovary removed. Benign fibroid.
9/16: clean colonoscopy
3/17: clean CT
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4
Mom to a 3 & 5-year-old

nomoretacos
Posts: 45
Joined: Sun Mar 27, 2016 5:57 pm

Re: Long tern stage 3 NED, any scares along the way

Postby nomoretacos » Sun Mar 19, 2017 9:13 pm

My first post chemo scan Oct 2016 showed a 3mm ill-defined ground glass nodule in my right lower lobe and a 1mm hypodense lesion in my liver.

My latest scan Mar 2017 shows no lung nodules and the 1mm liver lesion is unchanged.

So it goes to show spots can come and go as they please just to mess with our sanity.
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Long tern stage 3 NED, any scares along the way

Postby dianetavegia » Wed Mar 22, 2017 3:12 pm

I'm now Stage IV for 5 years, 8 years post my original dx but never saw my CT scans until a few years ago when the hospital started posting reports on line. I almost had heart failure! I had 3 tiny lung nodules at my original dx that no one told me about. They've now been deemed benign and are no longer mentioned except in passing. No change in 8 years. After my gall bladder attack and liver resection, they noted a tiny simple cyst on my pancreas that they watched for 4 years. It never changed and is now blamed on damage during surgery. I have two tiny cysts on my renal pole and kidney. Those are common and just noted on the report.

Until my reports were put online, my onc always said my CT was 'PERFECT'. Someone here laughed at that and made a remark that made no sense to me until I saw a report!

I had a cystoscopy today and my urologist said 'Now THAT'S what a bladder is SUPPOSED to look like!' Then he said 'You've got some polyps'. When I asked 'polyps?' he said 'They're so common I'd have been surprised if you didn't have any!'. Never turn to cancer. Sometimes burst and bleed but nothing to even follow up on.

We've all got lumps, bumps, cysts and bone spurs. I even had a radiologist say 'patient has some breast calcifications and if she hasn't had a screening mammogram, this would be a good time to have one'. I'd known about those for 12 years. Another guy said 'We thought we saw a tiny thyroid nodule a year ago, then 6 months ago didn't see it and I can't tell if I'm seeing it or not'. My onc said 50% of women over 50 have thyroid nodules and if they can't decide if they're seeing it and nothing has grown in several years, we're not going to worry about it. His sub specialty is head/ neck cancer and hematology.

Try to not worry about it. Easier said than done, I know.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo
NED Sept. 29, 2016 Seven years 9 months since original dx.
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2 http://www.justalittletalk.com


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