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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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I’m so sorry you are going through so much and it is overwhelming. Sounds like you have some great medics and great family support. Googling is not good and I don’t Google my condition which sounds very similar to yours.. sending love and best wishes for your treatment x
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1 ReactionHere are my results from my CT after 4th chemo treatment. Reading it gave me so much hope. I'm also posting my initial report, which I did not see until I had practically finished with treatments, that would have made me ill had I read it. They tell you to stay off Google. The info is outdated. I would Google and take bits and pieces from different places that applied only to me. There is hope. Don't give up. Be positive. It might be helpful to get your CA125 numbers too. Mine went from 1641 to 81, had labs on the 14th to get new numbers, in 5 months. It was both gratifying and promising to watch my numbers fall and we need all the positivity we can get. That meant the chemo and immunotherapy was working. God is good.
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1 ReactionThank you. I will up load a modified version.
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1 ReactionNo problem, Carol. The report has been removed.
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1 Reaction@carol1024 I will ask that @colleenyoung delete the second report. You can then blot out your personal information with a Sharpie or other black pen. You will have to write another post to upload again if you want.
I 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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1 Reaction@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 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 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 ReactionPraise 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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