Chemo or No Chemo - Stage 1C1
Finding myself in the decision making stage for Chemo or No Chemo (Observance) for Stage 1C1. Single ovary cyst with recent surgery to remove cyst, ovaries, fallopian tubes. Spillage during surgery (due to cyst size, needed drainage prior to removal). Cyst results returned as Grade 1 mucinous carcinoma. All post-op CT scans/tests in as normal. No signs of any other cancer sites, etc. An otherwise healthy 56 yr old! At crossroads for considering Observance vs Chemo route (6 cycles).
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HI Melanieplane,
i am going through the same exact thing. Were you able to get any advice from any other doctors or professionals?
I am also trying to decide to either get a second opinion, because i am not ready for any this. The category I am in is PT1C2, which means cancer cells might be quietly sitting in my abdominal area. Are you planning on getting or maybe already have had a second opinion, if yes what do they say? I would appreciate any info you might have to share. thank you!
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Hello!
I did not formally seek advice from outside my medical network (LOTS of internet research, reading studies and listening to talks/panels), although there is still very little to research for my case level. There is also a difference of opinion within the medical industry itself - those who feel chemo should be treatment post-surgery and those who feel Observance to be a considered path for treatment. My case is definitely in the gray area. I considered outsourcing for 2nd opinion, however I think I quickly realized that each professional would have simply provided their "opinion" on which path they had experience from within their own caseload. If the stage was another level or the cyst was Grade 2 then the team would already be coming to me with recommended treatment plan, not the option of 2 equally acceptable paths (chemo or Observance). I came to my own conclusion that while I believe in modern medicine and would consider chemo, I am also mindful of overtreatment. I assessed the risk level with both teams (surgery & hematology) as to my case and deemed it to be low risk (various factors - Grade 1 cyst, genetic testing clear, no family history). The choice was presented to be patient centered as there is more than 1 path to consider and became a personal choice (both teams being very supportive of whichever path I chose - my stage/level has a clear "either or" for 2 treatment options, with it being unclear if chemo provides any benefit. I have selected Observance, as it felt the right decision for me, for right now. If there is reoccurrence, we still won't know if the chemo path would have been the better path (we won't be able to think that way as we have know way of knowing if chemo would have actually been successful). There are so many what if scenarios (for both treatment options) - it was/is a tough spot to be in...I will move forward with no regrets!
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Hello
Let me join the group. Mucinous adenocarcinoma stage 1C3 (very large one sided mass). I theoretically had no ovaries (removed in 2007) so we had to rule out metastatic origin from primary colon tumor so had colonoscopy and PET scan and both were negative. Also had omentum and appendix removed and they were clean as well.
So now we are at treatment phase. I found paper saying there was no benefit to chemo in stage 1C mucinous carcinoma patients, however, that was mostly with traditional chemo. My doc says now they do FOXFOL for mucinous tumors as they are resistant to traditional ovarian protocols. That said, there is no good evidence yet that FOXFOL works any better (it does work on colon cancers and these MOCs do look like colon cancer). My doctor was equivocal on treatment at this time. We have opted just to observe for now. I have a 3 month follow-up scheduled.
Would love to hear any one elses experience here. I know this is a rare tumor, so not as many of us :( So hard to know what to do.
I'm happy with decision for now, but open to new data.
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My name is Michele. I was recently diagnosed with Mucinous Carcinoma Stage1C/Grade 2, expansile, Her2+ (3+). I was originally staged at 1A but they discovered small amount of leakage of the capsule during my surgery. I had ascites removed prior to my radical hysterectomy (tested non-malignant) More ascites was tested during surgery (still non-malignant) Peritoneal wash (non-malignant) No other signs of cancer sampled according to the pathology report. The first recommendation was no chemo, the next was 3 cycles and the next was 3 cycles of chemo PLUS 18 cycles of Herceptin because of testing positive for Her2+. This cancer represents less than 3% of all Ovarian cancers. The last trial was in 2019 and discontinued for lack of participants. My oncologist had one patient that has survived after 10 years receiving Paxetel chemo. The issue is, they don't know if it because this kind of cancer has a low risk of reoccurrence or because the chemo worked-he admitted. Everything else that I have read from the NIH website is that mucinous carcinomas are chemo resistant. The trial that my Oncologist cited as the recommendation for the 18 cycles of Herceptin was based on FDA approval for cancer in general. The HER2+ trial he cited was for serous carcinoma. It's an off- label recommendation and there is no data to support it works on Mucinous carcinoma. This oncologist is the head of the department for Ovarian oncology at one of the TOP cancer research hospitals in Boston. What I am struggling with is that recommendations for my care are speculative. There is no data or cases that prove any of these recommendations even work with our rare cancer. So do we do all this adjuvant treatment in hopes it staves off reoccurrence but deal with the difficult side effects? Such a gut-wrenching decision. Thanks for listening. Anyone else out there?
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Hello there! Do you have any updates? Much appreciated for sharing!
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Hi Melanie,
Do you have an update on your journey? Thanks for sharing!
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hello
you are right, there really isn't any good data. That is the whole problem. I decided on watch and wait. I am approaching one year out from my surgery. So far no new signs and my bloodwork has been normal (CA125 and CAE). I will need 5 years of follow-up. I'm on the 3 month interval right now.
It's a tough choice but given there was no evidence that chemo works for this type of cancer, I feel good about my decision. Chemo has significant side effects. I am still waiting on any new data and could change my mind if there was something that worked.
Best to you
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Thank you for responding. I was so grateful for your message and that you are doing ok. There are so few of us out out there, it makes me hopeful hearing your good news!
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I’m a grade 3 (clear cell) 1C1
No chemo
I still have 1 ovary and uterus
I am 3 years this summer 2025
oncologist passed me to his nurse and she only sees me once a year
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