The Colon Club

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.

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.

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

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

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.

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.

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.

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!

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.

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...

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.

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. 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.

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.)

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.

Hi Nynessie,
I am just seeing this post. I would leave that center and find another doctor. I did. Less than a year after finishing 12 rounds of oxiplatin and 5 fu (and two surgeries for colostomy and reversal five weeks after before starting chemo), I told my oncologist I was very tired and had strange bleeding. I never complained about anything while having chemo, but I am a small woman and feel this arrogant %#* of a doctor dismissed my complaints because of my size. He asked if it was vaginal or rectal bleeding. I told him it was vaginal and odd bleeding I had never in my life experienced. At my next scan, I had a met to one ovary. I made a call to a new doctor the day I had my ovary removed and absolutely adore my new doctor.

I would also recommend using the mantra, someone has to survive so why not me? It helped me through many, many dark times. I have been NED since October 2015 after my metastasis. Hope all is well with you.
Denise

nynessie wrote: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.