No longer NED- back in right ovary

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Brearmstrong
Posts: 95
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

No longer NED- back in right ovary

Postby Brearmstrong » Thu Jul 09, 2020 7:07 pm

I've searched the archives for this topic but just wanted to fresh input if available. My history is below and just found out that I have a second recurrence, this time a 3 cm tumor on my right ovary. Not surprising since my primary was on my appendix but still devastating. Anyone have this same presentation, have it removed and remained NED? I've read that systemic chemo is ineffective for ovarian mets from CRC and I've been all lines of chemo for the last 3.5 years. Feeling defeated and made the HUGE mistake of looking at NIH studies and they say that mets to ovaries are worse than mets any place else? Can this be true? I'm having a really hard time dealing with this news and in need of some hope. If you had mets to your ovaries, did you have a complete hysterectomy by an OBYN oncology surgeon? Thanks for listening.

Brenda
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda continues
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20- confirmed recurrence on Rt ovary 3.5 cm CEA 4.0 waiting on plan

debb
Posts: 186
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: No longer NED- back in right ovary

Postby debb » Thu Jul 09, 2020 8:44 pm

Hello...I had a met to one ovary in 2010. I then had both ovaries removed, not a complete hysterectomy. Because my ovary had burst between diagnosis and surgery, I decided to pursue HIPEC. But I didn't do systemic chemo at that time. It was almost 5 years before I had to have systemic chemo for lung nodules. Anyway, I wanted to say I've never heard of ovarian mets being the worst, and I'm here and living a great life 10 years after my ovarian mets and 12 years after diagnosis. Good luck!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

Tristen7171
Posts: 1
Joined: Fri Jul 10, 2020 11:20 pm

Re: No longer NED- back in right ovary

Postby Tristen7171 » Sat Jul 11, 2020 12:10 am

Mine metastasized to both my ovaries. Had full hysterectomy 2 years ago and HIPEC last November. I haven't heard that metastasized to ovaries is any worse either. Have had a break from chemo for over a year. Good luck!!
Danielle

brokenwings
Posts: 127
Joined: Mon Jan 07, 2019 1:50 am

Re: No longer NED- back in right ovary

Postby brokenwings » Mon Jul 13, 2020 5:25 am

Hi Brenda,

I've never heard such a thing! I had a met to one ovary and a total hysterectomy with HIPEC.

I know at least 4 other women with mets to ovaries and in each case they were succesfully removed.

Don't expect chemo to work on the ovaries though and push for surgery ASAP. Those buggers can grow really big real fast so you don't want to waste any time: the smaller the met, the less complications you'll have from surgery.

All the best.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

Brearmstrong
Posts: 95
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: No longer NED- back in right ovary

Postby Brearmstrong » Mon Jul 13, 2020 12:06 pm

Thank for the responses. I have to stop looking at studies with small cohorts, etc. I just torture myself. I meet with my oncologist this afternoon to see what he has for a plan. I pushed for an ultrasound because my May CT scan said it was a growing cysts from 6 months ago.. but was never noted on my Nov 2019 CT scan even though it was there. My CT scans are never accurately reported and it's missed both recurrences which just has me exhausted. My oncologist said no to the US so I called my regular OBGYN. Thank god I did. We are our best advocates but just once I'd love for drs to remember and do what they are supposed to be doing.... seriously, I could write a book and I'm not a confrontational person so it takes a lot out of me to point out a mistake to people that are drs that I'm relying on to try to save my life. Throw in the insurance nightmares and this whole cancer nightmare is harder than it has to be for some people. Sorry for the rant... I'm hoping he agrees to a full hysterectomy asap. I can't get HIPEC as it's not offered at my cancer center (Smilow) and my insurance doesn't allow me to leave.
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda continues
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20- confirmed recurrence on Rt ovary 3.5 cm CEA 4.0 waiting on plan

User avatar
beach sunrise
Posts: 157
Joined: Thu Mar 05, 2020 7:14 pm

Re: No longer NED- back in right ovary

Postby beach sunrise » Mon Jul 13, 2020 12:20 pm

I am so sorry to hear about your recurrence. I have appt today in about an hr with my gyn. So, since ct missed your mets twice a US will be better? I think I will bring this up to my gyn.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
7-16: CEA 10.3 AFP 5.3 CA125 26.6 CA199 8
7-28 CEA 8.8 AFP 7.7 CA125 27 CA199 7
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

StDrogo
Posts: 25
Joined: Thu Jun 08, 2017 7:54 pm

Re: No longer NED- back in right ovary

Postby StDrogo » Tue Jul 14, 2020 12:00 am

I've written about my wife's condition and many operations and ordeals in the past (she sadly had both ovaries infested, and both tumors were larger than 20cm). She is faring well now (two years after her last surgery) and ostensibly still NED. I can give you my wife's email via message if you want—she's quite willing to communicate one on one with fellow cancer patients in similar positions but is reticent about posting publicly.

EDIT: I say "ostensibly" because she hasn't actually had a CT scan in fourteen months. The scans used to take too much out of us, and my wife is adamant that she will never go back on chemo—in hindsight, I'm inclined to think that both the chemo and the HIPEC did precisely nothing. She's had her liver and her peritoneum hacked to bits because of supposed recurrences that have always turned out to be benign (she's only ever had cancer in the colon and ovaries). Come what will, we're both much happier without the scans—admittedly, that's because there's almost certainly nothing curative to be done if the cancer does recur besides palliative chemo.
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

bitchslapped
Posts: 1531
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: No longer NED- back in right ovary

Postby bitchslapped » Thu Jul 16, 2020 12:30 pm

Sorry to hear that Brenda! Glad you've gotten some helpful input here. I want to encourage you to double check your insurance on HIPEC @ some point. Seems to me tx cannot be denied if not offered locally. May want to check w/your insurance or insurance rep office @ the state level...or change insurance if possible when the "reup" time rolls around.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

rp1954
Posts: 1528
Joined: Mon Jun 13, 2011 1:13 am

Re: No longer NED- back in right ovary

Postby rp1954 » Tue Jul 21, 2020 12:44 am

In the rational "alternative" and off label uses world, KRAS mutants may be more treatable. Like over a dozen decent additive candidates to 5FU (e.g. xeloda). Extra off label chemistry allowed us to get past surgical denials as well as oncological gloom and doom. I do believe in "better living through chemistry", and we found ways to walk the talk. We persisted and found medical support that could and would help us with at least one task (or DIY); this is how you bypass frustration and the deadly "Dr No" syndrome.

Basically we tried to find predictive papers, markers and correlations to guide more chemistry that allowed more oral chemo too. More chemistry built up carefully - done before, during and after surgeries. These helped stop new mets, improve recovery and surgical healing, improve chemo activity, improve blood test results and immune functions, drive down markers, and improve quality of life.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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