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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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@naturegirl5 Thank you for asking. I also perceive it as moving fast, so thank you for saying that. Fast, yet I want Friday to hurry up and get here. Anything that brings me closer to getting this cancer out of me. My Gyn/Onc called me again last evening, she had spoken to the Hematologist who was treating me prior for my blood clots. They both agreed that I should go back on Eliquis since clots are more common for cancer patients. So today, i started that again. I do not have a problem with it, but worry that I might bleed again. (I have been free from bleeding for about a week) . I also told her I would like to know the chemo she is thinking, and she told me, it is what I expected. I also asked about a port. She told me not to let that be a barrier, that I am young enough to just have regular IV if needed, in order to begin quickly. (I am not sure I mentioned, I am 53). Most days I am ok. I am still working, and feel relatively "normal". My sleep is not optimal, but not horrible. So my work is a great distraction. I also have a couple of friends that are helpful, and they are coming by thursday to help me organize my craft room. I told them I want order in at least one area of my life. So, overall, I would say I am doing well day to day. I like the Optimism with a plan concept. I have also been trying to replace worry with prayer. Every time a worry or negative thought comes to mind, I turn to prayer. I will lean on all of you. Thank you so much.
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6 ReactionsI can relate. I am battling cervical cancer at Mayo Rochester. I am a VP at a large company and only told the need to knows. It’s turned my world upside down. I am staying in Rochester during the week for treatments and home on the weekends. You’re not alone. I was in Menopause and the clinic kept telling me my bleeding was hormone related. When my gut told me to go in, it was cancer.
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5 ReactionsIt’s such a difficult diagnosis to get - thoughts and prayers to you. You will experience a wide range of emotions throughout this journey, just remember that you are still you despite the changes you will go through. Wishing you all the best and lots of love and support.
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3 Reactions@kristinfloyd I'd like to concur with @tbkomparda and say that when I received my diagnosis of endometrial cancer I was shocked and stunned. It sounds like you have an outstanding cancer care team at Mayo in Arizona. I will share that once I met with my gyn-oncologist at Mayo Clinic in Rochester and she shared her impressions and treatment plan I felt almost relieved if that's even possible. I now realize that with a plan in place that I could grab onto some of the unknown was removed. I've since learned that this is how to define Hope. Hope is optimism with a plan.
Like you I told very few people before and after my diagnosis and surgery (radical hysterectomy). The word spread in the small neighborhood where I live and that was OK with me but what I did not want were useless platitudes from some of the people I worked with before I retired. I'm definitely with you on that point. It's not that we are hiding anything. It's that this is our health and our business and let people know on sort of a need-to-know basis that will provide us with Hope. At least that's how I saw who I told and who I did not tell.
It's all moving very fast for you and that's a good thing. You have your husband for support. How are you coping day to day as you await your Friday appointment?
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1 ReactionHello,
As a OC survivor first off want to tell you that the ovariancancersupportgroup.com is excellent great support many survivor stories invaluable resource.
What your feeling right now is perfectly normal please do not over read Dr Google statics are outdated there are several different subtypes of OC you are not poisoned or a leper as a private person myself I completely understand OC is a shock but there have been so many new drugs that have come to market you are blessed to be at Mayo sounds like you have a great Gyno/Onc I am a 26 month survivor diagnosed 2021 my only symptom was constipation thank GOD my internist didn’t chalk it up to post-menopause sent me for a pelvic ultrasound.
Not a club anyone wanted to join but you are now a member of the Teal Sisterhood I would be happy to answer any questions you may have or any of my other sisters on the above mentioned website.
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