Mmmmm - the Tumor Board!?!?!

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Mmmmm - the Tumor Board!?!?!

Postby AudreyM » Fri Oct 12, 2012 9:45 am

Hello guys - I really need your help/info/advice and input.
Recent History: I am now 6 weeks post-op on a rt hemi (I found where 10 was on the pain scale!) - Starting to feel good again and learning where the "new normal" is! Pathology report reads as "......11.2cm x 5cm flat adenoma located at the Heppatic flexure with high grade dysplasia.... Lymph nodes clear..." - so I guess that makes me a Stage 0. Doc says "..that while you didn't actually HAVE colon cancer, because of your pathology during the last 6 years we will continue to monitor and treat you as if you did. No chemo - no radiation and yearly colonoscopies (as compared to every 6 months due to polyps). Sounds great to me with a real reason to celebrate :D :) :!:

And then last week I get a call from his PA and she says: After further pathology review of the entire right half of my colon that they took out that the pathologist states there appears to be evidence (tumor? Cell? Billboard?) of "Ovarian Cancer" within my colon. The pathologist had this referred to and confirmed by another pathologist and they both concur in their findings. B U T - I had a complete and total hysterectomy with oopherectomy SIX YEARS AGO due to numerous cysts, nonmalignant tumors, and endometriosis! I do not have any ovaries and HAVE NOT HAD ANY for over 6 yrs! :shock: !!! :o

Now they are presenting my "case" to the monthly "Tumor Board" for review and recommendations :? :?: Any one have any ideas? Ever heard of this?

I am so grateful that I haven't had to endure what a lot of people on here have, but it seems like this never ends. This has been going on for 6 years - I also have Barrett's Esophogus (yearly endos), Skin cancer on lower rt eyelid (6 surgeries including having my eye sewn shut for 5 weeks)! There is always more tests, more procedures, more docs to see.. Somehow I just want to have to deal with working, husband, and kids!
Thank every one and sorry about the length of post!

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Re: Mmmmm - the Tumor Board!?!?!

Postby Surroundedbylove » Fri Oct 12, 2012 9:52 am

When I had my oopherectomy (at the time of my rectal cancer resection), they told me it would minimize my risk of ovarian cancer but it would not be absolute - still a risk.

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

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Re: Mmmmm - the Tumor Board!?!?!

Postby KarMel » Fri Oct 12, 2012 9:58 am

Yep... It is completely possible. This could arise from at least two possibilities, that I know of.

1. Primary peritoneal carcinomtosis.... Looks like ovarian cancer, acts like ovarian cancer, but arises from lining of abdomen...the peritoneum.

2.ovarian remnant...tiny piece of ovarian tissue left inside at time of surgery. The cancer arose from this.

If it is one of these, I think Yu may need chemo, which truly sucks, cause you would have not need anything from the colon thingies.

Keep us updated, please. Hope tumor board has good solution for you.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Re: Mmmmm - the Tumor Board!?!?!

Postby AudreyM » Fri Oct 12, 2012 10:30 am

Oh great - never heard of those! My husband keeps saying that I'm always an overachiever!

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Re: Mmmmm - the Tumor Board!?!?! Update

Postby AudreyM » Fri Oct 12, 2012 12:03 pm

Just got a call from nurse - The Tumor Board (ugly sounding name!) is requesting copies of ALL previous pathology reports going back to the first exploratory surgey in 2002 for their review. So they wanted to know the names of the surgeons and hospitals where first surgeries were performed (I did not get transferred to the Cancer Center till 2009 after suspicious results on a polyp biopsy) so they can request them. The nurse said "After the information has been rec'd, then the members of the board will review them, meet, and make their recommendations for a "Plan of care"
After receiving your feed back and doing some research - I am really wondering if all of the issues from the last few years are due to the original issues with the ovarian tumors that started back in 2002!

Poor colon - all of the ugly things I have said about you, thought about you, and done to you (14 preps and colonoscopies in 5 years and cut half of you out!) - no wonder you are so easily aggravated now and seem hellbent on making my life miserable some days!!!!!

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Re: Mmmmm - the Tumor Board!?!?!

Postby lydia123 » Fri Oct 12, 2012 3:18 pm

I'm sorry. I am heartened to hear they are taking this seriously, even if it were better that they found nothing.

I want to tell you about our tumor board experience in case it is useful. We asked (OK, demanded, with crying and drama) that we receive a summary of their discussion and not just their majority vote. That discussion is where the interesting information is. It is highly likely that there will be a diversity of opinions on what comes next and why. Hearing that information was very helpful to us, and gave us more confidence going forward about the nonstandard choice we made. Generally, radiologists like radiation. Oncologists like chemo and surgeons like to cut. Once the doctor realized we were there to "talk science" he got pretty chatty (this was fun for him) and we learned a whole lot.

Good luck.
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

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Re: Mmmmm - the Tumor Board!?!?!

Postby AngieN » Fri Oct 12, 2012 4:36 pm

I'm sorry to tell you this, but I have heard of ovarian cancer after a hysterectomy. My best friend - who I met on a cancer message board when I was diagnosed a year ago - has been battling it for 5 years now. She'd had a hysterectomy and a few years later they found ovarian cancer on the outside of both her small and large intestines. She had a colon resection and they were able to peel the tumors off her small intestine. She's been through chemo twice, but the good news is that she's still here! It sounds like they've found yours before it got too far.

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Re: Mmmmm - the Tumor Board!?!?!

Postby janklo » Fri Oct 12, 2012 10:18 pm

My mom had breast cancer. Had a double mastectomy and all lymph nodes removed and then chemo. Sixteen years later she got a recurrence - breast cancer cells in her liver and in the ascites they drained from her weekly. Totally possible! Still sucks though.

And my daughter (the colon cancer patient) had her ovaries remove.d because they were filled with colon cancer. I asked specifically and pathology tests for that, to make sure it wasn't ovarian cancer.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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Re: Mmmmm - the Tumor Board!?!?!

Postby Kathryn in MN » Fri Oct 12, 2012 10:52 pm

I still had cervical cancer after my cervix was removed. I have a friend who got ovarian cancer after her ovaries were removed (with a total hystectomy).

I got my cervical cancer before having the cervix removed during hysterectomy. She did not have ovarian cancer until after having her ovaries removed.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining

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Re: Mmmmm - the Tumor Board!?!?!

Postby AudreyM » Sat Oct 13, 2012 7:28 am

Thanks for the replies - all very eye opening and a Big reality check! I sat down here to type this after she called the first time with the attitude of "surely theres been a mistake and she'll call me back when they realize it is not possible!". I have had a couple days to digest the info now and I have taken off my rose colored glasses as I go back to work in a few days. At least I had a couple days of thinking I had finally beaten all this cancer crap and that I wouldn't have to go back to the cancer center till next August!

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