Stage 1 Ovarian Cancer Clear Cell

Chemo
From my understanding of clear cell cancer, it is rare and hard to treat.

I was originally diagnosed with stage 1c ovarian cancer, which meant an ovary had burst. I had chemo following my hysterectomy, and have just finished my 5th round of chemo (out of 6) after having a small OVCA tumor removed from my abdomen in September. It was well defined, and no other cells were found in the samples they took, but the choice for chemo was made by me, my husband, and my oncologist to give me the best hope of getting any other cells that may be floating around.

Your doctor really wants to see you have the best outcome. I fretted about having chemo the first time, but my gyn told me in one of my visits that doctors really want to "win" and beat cancer at the first opportunity. That woke me up-it isn't because they want to see you have chemo, it's the best option to get that win! My chemos have actually been done in a local facility, not at the hosptials where my oncologists have been, so I have no reason to suspect ulterior motives such as profit-making. The chemo protocol is the same, and it's saved me a two-hour trip for each treatment.

I suggest you do some reading about clear cell OVCA and then seriously consider the chemo. I do believe your oncologist would like to win this time!

Chem - clear cell
Thank you for sharing your story. I was diagnosed with stage 1A and my doctor also wanted me to have the chemo. I had a total hysterectomy. I have already had one treatment and have another tomorrow. Because it is such an aggressive type of cancer I am not taking any chances that one cell was left. I figure it took one to get it started. It is a personal decision for each person but I am at peace with my decision.

I will keep you in my prayers.

lindaprocopio said:

It's the GRADE of your cancer, not the STAGE....
My cancer cells were/are Papillary Serous, a rare Grade 3 cancer, just like Clear Cell, and Grade 3 cancers are aggressive and recurrent. Most women I know with papillary serous cancer cells in their pathology, even at Stage 1, take chemo as adjuvant therapy. You are so very blessed to have caught your cancer early, and have the opportunity to almost guarantee it will never come back. But if you wait, it can secretly make inroads and that chance for a cure can be lost. It is a very personal decision, but I know I'd do the chemo if I were in your position. I was Stage III-c at diagnosis and even with 6 rounds of chemo, my cancer returned. But I sure wanted to give myself my only (very slim at Stage 3) chance for a cure, and I don't regret taking the chemo, even in hindsight.

I would have the chemo....
Clear cell is characterized in part by its aggressive metastasis. I would elect to be safe, rather than sorry, and zap whatever might be left with any treatment available. Every cancer begins with a single cell that morphs out of control.

I want to think my cancer (not clear cell) is gone, too. I have that "positive attitude" everyone keeps talking about. But I am pragmatic, too. I have elected to do monthly Taxol treatments after the completion of my six sessions of Carbo/Taxol next Monday. If something might give me an edge - even a small one - bring it on. That's my philosophy. However inconvenient or unpleasant the treatment might be, the possible alternative is worse - way worse.

On the other hand, my doctor has had women who refused treatment because they did not want to lose their hair. My friend's mom actually told her physician she would rather be dead than bald. It's your body........your decision.

Carlene

groundeffect said:

Chemo
From my understanding of clear cell cancer, it is rare and hard to treat.

I was originally diagnosed with stage 1c ovarian cancer, which meant an ovary had burst. I had chemo following my hysterectomy, and have just finished my 5th round of chemo (out of 6) after having a small OVCA tumor removed from my abdomen in September. It was well defined, and no other cells were found in the samples they took, but the choice for chemo was made by me, my husband, and my oncologist to give me the best hope of getting any other cells that may be floating around.

Your doctor really wants to see you have the best outcome. I fretted about having chemo the first time, but my gyn told me in one of my visits that doctors really want to "win" and beat cancer at the first opportunity. That woke me up-it isn't because they want to see you have chemo, it's the best option to get that win! My chemos have actually been done in a local facility, not at the hosptials where my oncologists have been, so I have no reason to suspect ulterior motives such as profit-making. The chemo protocol is the same, and it's saved me a two-hour trip for each treatment.

I suggest you do some reading about clear cell OVCA and then seriously consider the chemo. I do believe your oncologist would like to win this time!

body scan
I was diagnosed with stage 1a ovarian cancer in jan. 2010. I just completed my 6 chemo treatments. I thought I was going to have a body scan following but the Dr. said it was not necessary. Has everyone with this diagnosis had a scan following their chemo treatments or is it no longer necessary?

In early September I went to the doctor with a tummy ache and ended up getting a surprise exploratory laparotomy and staging for cancer and spent a week in the hospital. They removed my uterus, cervix, ovaries & fallopians, omentum, pelvic nodes samples, and as a precaution my appendix. It was a rather traumatic event, and very worrisome not knowing the extent of the cancer.

After seven weeks I am feeling much better and recovering well. The good news is that the tumor was caught at early stage pt1A pN0, and it involved only one ovary with no spread, no ruptures, and no positives on any other samples taken.

Estimated three-year survival in my case is around 93.5%, which is considered to be an excellent prognosis. The bad news is that the cancer type is ovarian clear cell carcinoma (OCCC) which has a very poor prognosis upon recurrence.

Last week I got a second opinion from a pair of UCSF gyn/oncology doctors. Their pathology report is still in process and will go before the Tumor Board today to confirm the diagnosis. I brought a list of questions and clinical study references to discuss the treatment plan. They advised that in my case chemotherapy would not provide any statistical benefit or improve my survival outcomes, and they recommended observation instead.

This opinion contrasts with the first doctor who insisted on chemo, but it appears his approach is based on standard treatment for the most common type of epithelial serous cancer which does respond to chemo. OCCC is chemo-resistant. The data is pretty clear on this, and I’m opting for no chemo.

In late 2022 the NCCN changed their guidelines to recommend observation for early stage 1A OCCC. This aligns with ESMO guidelines in europe, and is based on decades of clinical evidence that in early stage OCCC there is no statistical difference between observation and adjuvant therapy.

The treatment decision for early stage OCCC is individual to each case, and should be an informed decision made with professional consultation. As we know, most ovarian cancers are caught in a later stage, and many are more platinum-responsive than OCCC.

It is not that I am anti-chemo, I wish that it was an effective treatment for my case, but at the same time i dont want to take chemo if there is no statistical evidence demonstrating it's effectiveness.

Are there others here who have made a similar decision, and would like to compare notes? I have found no support group for my particular situation.

Thank you for your reply, NTFC (*

We are living in an age of great possibility for new targeted therapies, and I believe it is only a matter of time. I absolutely agree that genetic testing is the next step for me in planning for a recurrence, if it happens. I am under no illusion that I am out of the woods. I've got an appointment for genetic counseling in December, and with luck there will a marker that will match up with one of the new targeted treatments under study.