Stage 3b with ovarian met recurrence and healthy now

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Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Sun Mar 25, 2018 10:25 am

I am posting my story because I could not find anyone with a similar story when I was scared and looking on forums. I was diagnosed with Stage 3b colon cancer in November of 2013 at 43 years old. I was a very, very good marathon runner with a best of 2:48, ate well and drank very little so cancer was not something anyone expected as is often the case. I had a temporary colostomy bag for 5 weeks and 5 days. Then, I started six months of chemo with the standard FOLFOX treatment. Everything went fine and I had very few side effects during or after. I finished chemo in late June 2014. I had a weird bleeding episode after a period in April 2015 and told my oncologist. I also reported being tired for the first time ever, including during chemo. He told me I was probably going through early menopause. Six months later I was diagnosed with a metastasis to my right ovary after they removed it due to the mass on it. It was determined there was no other evidence of disease and after getting two second opinions and changing oncologists, they all arrived at the same conclusion based on scans. I did not receive any further treatment after the resection of my one ovary. That was in October of 2015 and I have been disease free since then.

Fingers crossed it continues. Someone has to live so why not me? ’m just sharing because I couldn’t find anyone with a singular met to one ovary.

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Stage 3b with ovarian met recurrence and healthy now

Postby DebZ » Sun Mar 25, 2018 1:56 pm

You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Stage 3b with ovarian met recurrence and healthy now

Postby MissMolly » Sun Mar 25, 2018 2:00 pm

DH13:
Wow ! Your marathon time of 2:48 is impressive and a solid accomplishment of body, mind, and spirit.

I am a former marathon runner (my best course time a more humble 3:15). I credit my natural love of long distance running with giving me a foundation in facing multiple and complex health issues. Although I am no longer able to run due to avascular necrosis of my hips from extended use of corticosteroids, I remain fiercely determined to remain upright, standing, on my feet. It is not always easy.

I hope you have the joy of running many more miles and a body free of cancer, NED,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Atoq » Sun Mar 25, 2018 4:08 pm

Congratulations on the excellent time on the marathon!

I never run a whole marathon but only half (best time 1h 20min).

Did you manage to start running again after you have been NED?

I also have one metastasis to the lungs but they want to wait three months to make a new CT scan, probably because waiting migh allow more to show up. No chemo other than neoadjuvant.

Best and wish you will stay NED forever!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Mon Mar 26, 2018 6:43 am

DebZ wrote:You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.



I was posting because I could not find anyone who had only one met to one ovary. So, while I know metastasis to an ovary and other places is not uncommon, it appears uncommon to have only one detectable met to an ovary. I was not able to find any information from anyone who had one metastasis to one ovary.

Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Mon Mar 26, 2018 6:46 am

I ran through the last three months of chemo. It was extremely difficult and my breathing was incredibly labored. I was not able to run very far, either. I never thought I would be able to run more than a couple of miles. But, I was incredibly grateful even for those. Well, I was wrong and I was able to run a whole lot more than a couple miles, but I have not run a marathon or more than 15 miles, yet. Running is my sanity. :D

StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby StDrogo » Wed Mar 28, 2018 6:50 am

Dh13, my wife has had a similar course thus far—she was diagnosed with a solitary met to her left ovary, which was resected first; in December, eight months after her first intervention in March, she had HIPEC, prophylactically since exploratory laparotomy/pathology revealed no evidence of malignancy.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

daisy9051
Posts: 9
Joined: Sat Jan 18, 2014 3:24 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby daisy9051 » Wed Mar 28, 2018 11:24 am

Hi there! I had a solitary met to my left ovary in 2013 which was removed. The oncologists were unsure of correct tx due to unusual presentation, so I did 3 cycles of FOLFOX. I recurred after 2.5 years in peritoneum and solitary lymph node. I had HIPEC in Dec 2015, 11 rounds of FOLFOX and have been NED since. All the best to you!
40 yo mom of 4 girls
4/13: 14 cm L ovarian muc adeno, pthlgy consistent w colon primary
Neg scopes/ CT
6/13: surgery, NED, 0/22 LN, no primary found
8/13: neg MRI, scopes, XELOX 3x
10/15: recur periaortic lymph nodes/peritoneum
12/15: HIPEC w/ oxi
1/16: start FOLFOX, bowel obstructions post-op

Steph20021
Posts: 541
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Steph20021 » Sun Apr 01, 2018 1:23 am

Dh13 wrote:
DebZ wrote:You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.



I was posting because I could not find anyone who had only one met to one ovary. So, while I know metastasis to an ovary and other places is not uncommon, it appears uncommon to have only one detectable met to an ovary. I was not able to find any information from anyone who had one metastasis to one ovary.


Dh13- Like you, I had one met to one ovary but mine was at my diagnosis. I did the 6 months adjuvant Folfox chemo like you but immediately upon finishing it was only on the other ovary. So I had to go back on chemo. I still hav3 no lung or liver mets after four years, mine is limited to my pelvis/abdomen cavity and abdo wall.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E mutation
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Aug/16- on folfiri
Jan/18-folfox

Nicolouna
Posts: 30
Joined: Fri Nov 08, 2013 6:30 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Nicolouna » Thu Apr 12, 2018 2:08 am

I had mets to my left ovary and duodenum/pancreas 4 years after my initial diagnosis of colon cancer. Both have been resected. My surgeon believes these are 2 new separate cancers whereas my onco believes they are both mets. Very confusing and an atypical presentation as they say. All my tissues are being re-examined extensively to determine exactly what they are but I am being treated as if they are mets...
Diagnosed @ 27, female w colon cancer (T4N0M0)
Right hemicolectomy -Aug 2013
FOLFOX - Oct 2013 - April 2014
May 2016 - had a baby ❤️
June 2017 - L ovarian malignancy (L ovary and tube removed) - ?met unsure
July 2017 - ?met to duodenum/pancreas
Started FOLFIRI Aug 2017
Dec 2017 - Whipple’s surgery. 1/36 lymph nodes+, treating it as mCRC - pathology not quite the same as original tumor
Scans postop - declared NED
Continuing FOLFIRI (12 cycles total) until May 2018
What a journey....

nynessie
Posts: 4
Joined: Mon Jun 25, 2018 1:39 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby nynessie » Sat Sep 08, 2018 4:16 pm

New to all this. Diagnosed in late May with large masses on rectum and left ovary. Sigmoidoscopy showed almost completely filled sigmoid with cancer cells, and so was diagnosed with colon cancer. Put on FOLFOX for 12 weeks. Told there was not a cure, and the goal was to decrease the size of the masses and prevent further growth. Also told 1 in 5 people lived five years. I did not see the ONC for the first 4 treatments, and at the 4th asked the PA what would happen. He said if the rescan looked good surgeons might consider de-bulking surgery. Hmm.

It was not a fun time for me, and was completely depressed and upset for the first 4 treatments. My oncologist left the hospital, and I am assigned a new one - who tells me that he is not convinced this is a colon w/mets to ovary, and that it might be two cancers - ovarian and colon. Both, he says, very well might be curable. He has reached out to another hospital (larger) for second opinions, and I am to be referred to doctors there. I believe this will happen after the 6th chemo, and the re-scans are done.

I had my 5th treatment the next day and felt the fog lift. For the first time since May I was hopeful.
07/11/2018 FOLFOX started
07/25/2018 FOLFOX+Avastin started
09/05/2018 FOLFOX only; last infusion due to low counts
10/16/2018 FOLFIRI+Avastin; Iron; Neulasta

Soccermom2boys
Posts: 195
Joined: Tue Nov 10, 2015 10:29 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Soccermom2boys » Sat Sep 08, 2018 8:11 pm

Hi nynessie— Welcome to the forum, so glad you found us! Not a club anyone really wants to have to join, but you will find a wealth of information on here. While I cannot relate to your specific situation, I just wanted to reply to say welcome and I am happy to hear you have a better oncologist who is giving you hope. :D It’s hard enough to deal with a cancer diagnosis and treatment, how horrible your first onc was so insensitive and uncaring. Please stick around, we’ll be here for you on your road to NED.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

StDrogo
Posts: 21
Joined: Thu Jun 08, 2017 7:54 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby StDrogo » Mon Sep 17, 2018 3:06 am

nynessie wrote:New to all this. Diagnosed in late May with large masses on rectum and left ovary. Sigmoidoscopy showed almost completely filled sigmoid with cancer cells, and so was diagnosed with colon cancer. Put on FOLFOX for 12 weeks. Told there was not a cure, and the goal was to decrease the size of the masses and prevent further growth. Also told 1 in 5 people lived five years. I did not see the ONC for the first 4 treatments, and at the 4th asked the PA what would happen. He said if the rescan looked good surgeons might consider de-bulking surgery. Hmm.

It was not a fun time for me, and was completely depressed and upset for the first 4 treatments. My oncologist left the hospital, and I am assigned a new one - who tells me that he is not convinced this is a colon w/mets to ovary, and that it might be two cancers - ovarian and colon. Both, he says, very well might be curable. He has reached out to another hospital (larger) for second opinions, and I am to be referred to doctors there. I believe this will happen after the 6th chemo, and the re-scans are done.

I had my 5th treatment the next day and felt the fog lift. For the first time since May I was hopeful.


Surely immunohistochemistry was performed, at least on the ovary. If ovary was CK7-/CK20+, in all likelihood it represents spread from a colonic primary. If CK7+, almost certainly ovarian. Very, very rarely primary ovarian so-called borderline mucinous tumors of intestinal type can swap phenotypes and come to resemble colonic primaries.

If you haven’t had surgery, I strongly believe “neoadjuvant” chemo before metasectomy of isolated ovarian secondaries is a mistake. (Non-SoC metronomic chemo with immunoadjuncts may be OK.) The vast majority of CR/gyne surgeons would agree, if only for palliative intent, since ovarian secondaries can notoriously get very large and cause all sorts of problems. Is there evidence of carcinomatosis? Have you had a laparoscopy? Do you have values for CA125, which is an especially good indicator of carcinomatosis / cancer of intraperitoneal organs. (I suspect you have, hence the reason your onc might incorrectly be surmising that an elevated CA 125 value favors a diagnosis of a secondary ovarian primary.)
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

nynessie
Posts: 4
Joined: Mon Jun 25, 2018 1:39 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby nynessie » Wed Sep 19, 2018 6:31 pm

Update - Tuesday saw ONC and he said my case was going to be discussed at the interdisciplinary meeting. This would be with the doctors giving a 2nd opinion on if this is colon cancer with mets, or colon cancer and ovarian cancer. I asked if they would be waiting for the scan I would be having after the next chemo treatment (which was next day), and he said he thought so. He also said he was going to check with the doctor there again. Not a lot of information.

That afternoon I receive a call telling my "infection fighters" - yes, they used that term - were low and my treatment was being postponed until the next week. I asked if that also meant my scan would be postponed, and was told "believe so."

What really got me though, on Tuesday, was that I was to continue with the treatment (FOLFOX) until it "no longer was working." I had not heard that before, and said so. His response was that there isn't a cure for this, and that when FOLFOX no longer worked, then we'd change meds. To add to all that, he made it sound like surgery is not an option unless this is actually two different cancer.

I was devastated when I came home, and am quite angry today. This is not new information, but I was not told by the first ONC that surgery was totally not an option, only that we needed to see how well the FOLFOX worked. I feel like I've been given a life-sentence of chemo, and if the cancer doesn't kill, then the chemo will. I can't get my hopes up over something uncommon like getting two cancers at the same time. My husband tells me to banish these negative thoughts, and think positive, but he's not the one with this sentence hanging over his head.

Thanks for being here. It's going to be a long haul, and he's eventually going to come to terms with this, but in the meantime, it's a bit tough to remember not to talk about all of this with him.
07/11/2018 FOLFOX started
07/25/2018 FOLFOX+Avastin started
09/05/2018 FOLFOX only; last infusion due to low counts
10/16/2018 FOLFIRI+Avastin; Iron; Neulasta


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