No longer NED- back in right ovary

[Brearmstrong]

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

[debb]

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!

[Tristen7171]

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]

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.

[Brearmstrong]

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.

[beach sunrise]

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.

[StDrogo]

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.

[bitchslapped]

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

[rp1954]

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.