I'm scared

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folbright
Posts: 9
Joined: Sun May 01, 2016 9:50 pm

I'm scared

Postby folbright » Sun May 01, 2016 9:53 pm

In November I was diagnosed with colon cancer. I had passed out after a month or so of stomach problems. Earlier, after an ultrasound, my doctor thought it was gallstones and I was awaiting an appointment with a surgeon but when I passed out and went to emergency they determined, after an X-ray and CT scan (subsequently confirmed by a colonoscopy) that it was colon cancer. I remained in hospital and had surgery about two weeks later. The surgeons were confident that they removed all the cancer and thought it was Stage I or II. However, when the biopsy tests came back it turned out that one lymph node they removed was cancerous and so it was Stage III and it was recommended i go on Folfox as a preventative measure. I began chemo in January and had a new CT scan to establish a baseline. In that scan though they found a few tiny spots in my lungs that either had not been there in the previous scan or were larger - but they were too small to determine whether or not they're cancerous and also too small/inconveniently located for a biopsy. I did not have contrast fluid in November because my kidneys were too weak from dehydration but I did have contrast fluid in January. I asked my oncologist if that might explain the difference in the two scans and he said no. I'm now halfway through the Folfox and am having a CT scan of my lungs only tomorrow. My wife asked my doctor what my prognosis is if the spots are cancerous (which would mean I'm Stage IV) and he said 3 to 5 years(!) (I'm 47) and the Johns Hopkins site says that Stage IV means an 11% five-year survivability rate. Needless to say I'm rather worried about the CT scan and what it might mean. If the spots are the same it apparently means they probably aren't cancer. If they're smaller it means they are probably cancerous but are responding to chemo (but it would still mean Stage IV). If they're larger that's even worse. I've had no actual symptoms of lung cancer but I'm a bit concerned that a cold I'm recovering from, and the related mucus in my lung, might interfere with the CT scan.
Admitted to ER November 2, 2015 after collapsing following several weeks of digestive issues and days of vomiting bile
Diagnosed November 3, 2015 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous). Folfox semimonthly (12 cycles) January to June 2016
CT scans clear for colon. Suspicious spots in lungs detected in January 2018. Wedge resection July 31 to remove 1 nodule that had grown. Biopsy found it malignant. Scans clear since then

User avatar
ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: I'm scared

Postby ANDRETEXAS » Mon May 02, 2016 3:03 am

All I can recommend is don't get ahead of yourself, and don't read statistics. They mean nothing to your particular case. I had taken CT and PET scans for two years before I was informed I had a 4 mm lung nodule on my first CT scan of 1/27/14. My oncologist said that I should not worry about it since it was there in the beginning and had not grown for over two years. I'm glad I didn't know now. :wink: I also don't think a doctor should give a possible prognosis based on such minimal information. Try to relax, and try to get your questions answered thoroughly and carefully before making any self-prognosis. Hoping you find definitive answers soon.....and hang in there ! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: I'm scared

Postby jhocno197 » Mon May 02, 2016 12:35 pm

Different people respond differently to treatments; you might respond amazingly & have them shrink to almost nothing.

Also, look into immunotherapy trials. A lady in this group with lung nodules is involved in a trial & has achieved NED status.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

folbright
Posts: 9
Joined: Sun May 01, 2016 9:50 pm

Re: I'm scared

Postby folbright » Mon May 02, 2016 3:14 pm

Thanks. Which clinical trials are these? CimaVax?
Admitted to ER November 2, 2015 after collapsing following several weeks of digestive issues and days of vomiting bile
Diagnosed November 3, 2015 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous). Folfox semimonthly (12 cycles) January to June 2016
CT scans clear for colon. Suspicious spots in lungs detected in January 2018. Wedge resection July 31 to remove 1 nodule that had grown. Biopsy found it malignant. Scans clear since then

DarknessEmbraced
Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm scared

Postby DarknessEmbraced » Mon May 02, 2016 5:03 pm

Welcome to the board and sorry for the reason you're here.*hugs* I hope your scan went well and that you don't have to wait long for results.*hugs* It's best not to look at statistics. It's really difficult but you won't know more until the results are back. I hope the results are good!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

folbright
Posts: 9
Joined: Sun May 01, 2016 9:50 pm

Re: I'm scared

Postby folbright » Mon May 02, 2016 7:36 pm

Thanks. Since it was a lung scan only I didn't have to take that awful contrast fluid or even change into a gown. Quite quick. I have my 8th cycle (of 12) of chemo tomorrow so since the CT was done in the same hospital I expect I'll know the results tomorrow. Hoping for the best.
Admitted to ER November 2, 2015 after collapsing following several weeks of digestive issues and days of vomiting bile
Diagnosed November 3, 2015 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous). Folfox semimonthly (12 cycles) January to June 2016
CT scans clear for colon. Suspicious spots in lungs detected in January 2018. Wedge resection July 31 to remove 1 nodule that had grown. Biopsy found it malignant. Scans clear since then

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: I'm scared

Postby jhocno197 » Mon May 02, 2016 8:29 pm

It's this one at NIH: NCT01174121

Also use this info from cancer research institute:

"
Find a Clinical Trial:

We encourage you to call (toll-free) 1-855-216-0127 to reach a Clinical Trial Navigator who can help you quickly find clinical trials that match your specific diagnosis and treatment history.

Our clinical trial navigators are available Monday through Friday from 8:30 a.m. to 6:00 p.m. Eastern Time and will help you find personalized trial matches, connect with study sites, and answer many of your questions. The service is free and completely confidential. You can also use our online matching tool below.

- See more at: http://www.cancerresearch.org/cancer-im ... 6FcrB.dpuf
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

folbright
Posts: 9
Joined: Sun May 01, 2016 9:50 pm

Re: I'm scared

Postby folbright » Tue May 03, 2016 9:53 am

Got the CT scan results and the lung nodules are stable so they think they're not cancer and therefore I'm still Stage III. Hurray! Am starting Folfox cycle 8 of 12 today.
Admitted to ER November 2, 2015 after collapsing following several weeks of digestive issues and days of vomiting bile
Diagnosed November 3, 2015 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous). Folfox semimonthly (12 cycles) January to June 2016
CT scans clear for colon. Suspicious spots in lungs detected in January 2018. Wedge resection July 31 to remove 1 nodule that had grown. Biopsy found it malignant. Scans clear since then

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: I'm scared

Postby Ragman » Tue May 03, 2016 10:16 am

That is great news indeed! Yes, I too have a nodule on my lung. It is stable and they didn't even mention it until a couple of scans ago. They have to watch it but it appears that it is not cancerous (knock on wood). I am glad that yours is stable too! Hang in there and get through that Adjuvant chemotherapy. You have a lot of life ahead of you -- keep fighting!
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

DarknessEmbraced
Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm scared

Postby DarknessEmbraced » Tue May 03, 2016 10:57 am

Wonderful news! Congratulations!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: I'm scared

Postby mike1965 » Tue May 03, 2016 12:22 pm

Great news. I have similar diagnosis and my lung nodules did not grow in my last CT Scan. I am in my second round of Folfox. I pray all goes well for you.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

Nik Colon

Re: I'm scared

Postby Nik Colon » Tue May 03, 2016 7:59 pm

folbright wrote:Got the CT scan results and the lung nodules are stable so they think they're not cancer and therefore I'm still Stage III. Hurray! Am starting Folfox cycle 8 of 12 today.

Great news!

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: I'm scared

Postby teresajj1 » Wed Jun 01, 2016 11:16 am

Yay!!! That's great news!!
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo


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