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Newly diagnosed with ovarian cancer (OC) ~ looking for support
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I am newly diagnosed with oc. I was diagnosed out of the ER at Mayo Clinic, where I am lucky enough to work. I had bloating and bleeding back in October. Saw GYN at Mayo, Pelvic US showed nothing. No concerns. I thought my fibroids were acting up. The GYN said my fibroids were "stable". (no increase in size) I was also on a blood thinner at the time, for PE and DVT that occurred in March 2023. I was given the OK to stop blood thinner, and bleeding stopped. Bloating subsided. Until January. I had a "full" feeling, I felt pregnant, hard to get up, sleep, and appetite reduced. Saw PCP 1/24. She ordered CT abd/pelvis and some labs. On 1/25 I went to ER, as I had bright red bleeding, and I was just so damn uncomfortable, I kept telling my husband "something is not right in my belly". The ER female doctor told me I had cancer after an excruciating pelvic US and CT Abd/Pelvis. I had sent my husband to get lunch. I was alone when she told me. My blood literally went cold. She told me it had spread, into the peritoneum. She contacted GYN/ONC and they added on some labs and I was sent home, with follow up with them 1/31. I did not google, did not look at my patient portal that whole time. I am usually a knowledge is power kind of girl, but I could not. I was just sick, both emotionally and physically. I met with GYN/ONC provider on 1/31 at Mayo, and she was a gem. She has given me some hope, and I am choosing to follow her lead. She is attentive, confident and i trust her so much. I also had a CT biopsy scheduled the same day, but, she offered Paracentesis instead, immediately after that appointment, and said she could get what she needed, likely with the fluid they took out. They removed about 2L that day, and I felt relief immediately. And she got what she needed. Those results came in last week, also, and I allowed myself to look at portal. My blood ran cold again. I had to close it, the words advanced and cancer were there and I could not look again. The Gyn Onc called me the next morning (last friday) to tell me that the results were as she expected, no surprises for her. She is recommending Chemo for 3-4 rounds, Surgery, then more chemo. I see medical oncology this coming friday. (my Gyn/Onc does not write for chemo/ instead partners with Med Onc). I am ready to start treatment. I just want this "out of me". I am trusting the chemo to shrink and "dry things up" as she said, so that surgery can be optimal. I have good and bad days. I went out for a motorcycle ride yesterday. It was nice to be in the sun and fresh air. (I am in Arizona). My husband is a gem and very supportive. I told my adult son, who is also amazing. I have told a few close friends, but no one else in my family. My mom is 86, and a very young 86, she has lost 2 kids already, and I am not sure she could bare a 3rd loss. I am waiting to tell her until I know more after I have chemo plan. I talked with my Pastors as well. I am a private person, I play it close to the vest. So telling people feels so awkward to me.
I have my list of questions written down for friday. It is so helpful to begin to read others stories like mine. I feel like I am poisened, I feel like a leper. I know I am in my head, but feelings are feelings. Not right or wrong, they just are. Hoping to be strong enough to stand alongside all of you in this journey.
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My heart goes out to you. I was diagnosed with Stage 3b ovarian cancer in early 2024. There’s nothing that can prepare you for the impact of hearing that diagnosis. I had surgery and then six rounds of paclitaxel and carboplatin. It wasn’t a picnic but it was certainly tolerable, though I know everyone has their own experience with it. I wish you the best in coming to the decision that feels right for you. I’ve found it comforting to connect with others here and hope we can support you as well.
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2 ReactionsThank you for your response.
My cancer is inoperable, so will have 18 chemo sessions (3 rounds) totally 18 times. My situation is I have been on a biologic drug for an autoimmune disease for 6 years and have had to stop those injections. That has really exacerbated the fatigue. Luckily, I’m long retired so can indulge myself and I have the best caregiver in my husband.
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1 ReactionThank you for sharing your story. I understand your loving concern for your mother which leads you to tell your story to only a few people.
I must be quite a bit older than you so have no parents to try to protect. Since my situation is different from yours, a friend advised me to tell everyone I know, which I was uncomfortable with at first. However, the outpouring of caring thoughts and prayers and loving concern has given me strength to forge ahead. I have heard from people I barely know saying they and their prayer circle are praying for me.
In the end, in spite of all the support, this is a walk we each walk alone and find our own path. I have read and studied all my test results, but can’t look at my scans. The paracentesis dd not help me as my belly and peritoneum is filled with tumors, not fluid.
I will send prayers for you and for your mother. There is hope.
I am imagining the chemo as little pac-men gobbling up the cancer cells. My husband says he hopes they’re hungry as there is a lot of cancer to gobble up.
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3 ReactionsAny update?
I just found this support group and read the postings. I hope giving a little bit of my story will encourage you. I was diagnosed in January of 2008 with OV and I am still here. I had breast cancer in January of 2007. I have the BRCA1 mutation. I have undergone several chemo treatments. I am still here because it is part of God’s perfect plan. I will eat healthy, exercise and keep my trust and hope in the LORD. I am about to start my 2nd clinical trial at Mayo. Yes, I want it to work in me but also if we can finally find treatment that will help other women, oh what a blessing it will be. We must manage our thoughts and not let “it” steal our joy or keep us from living in the the moment. May God bring you peace, strength and hope.
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3 ReactionsPraise the Lord Jesus Christ!
I was first diagnosed with High Grade Serous Ovarian Cancer Stage 3c in August 2010. I had radical surgery and then paclitaxol and carboplatin. That was hard, and a very steep learning curve followed.
I have had chemotherapy another 8 times since then, the last treatment was in April. I’m currently in remission yet again, but I am assuming that the cancer will be back in September when I am having the next scan, unless God provides another miracle.
God has always been good to me. The longer I live, the more blessings I receive from Him. What I pray for more than anything is for courage to face what is to come, with joy. I have been diagnosed recently with sarcoidosis, which is a benign inflammation of lymph nodes. It’s the first time in 15 years that I have been told it’s not cancer! You have to have a sense of humour!
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4 ReactionsI too have high grade serous carcinoma of the endometrium and ovaries. I had the total hysterectomy, carboplatin, taxol and Herceptin for immunotherapy. Everything happened 3/2022. I’m still in remission.
What you said about praying for Joy! That what was so important to me also! I prayed to get my peace and joy back. There’s nothing I can do about having cancer, I’m doing everything I know to do already….but if I can just have acceptance for what’s to come, with my peace and joy, that’s what’s important to me. I’ve had that since praying for it. It has made all the difference during times of anxiety and for me enjoying my life since getting cancer.
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1 ReactionI just finished chemo treatments for endometrial cancer. My CT scan after 4th treatment was awesome. So many "resolved" words in the report. I was not sick at all during treatments. Get your CA125 numbers. Mine at diagnosis was 1641. Then they fell to 744. Then to 179. Then to 105. Then to 81. I'm having labs this morning to see what the final numbers are now and I see surgeon on 7-29 to see if I'm a candidate for surgery. Watching the numbers drop after my treatments was so gratifying and promising. Good luck in your journey. Please be optimistic. My initial report was dire.
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3 Reactions@carol1024. This is terrific news! I’ll await your labs that you are having today and what your surgeon tells you on 7/29.
Carol, I’d like to suggest that you take down your second report and remove your personal information at the bottom of that report. Then, upload again. It’s important to keep your personal information private here. If you need help taking down your second report please let me know and I can ask our Director @colleenyoung to help with that.
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2 ReactionsI do not know how to do that. I will blot it out on the original though. I looked for way to edit it but tab wasn't there.
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