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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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Hello,
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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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 ReactionIt’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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2 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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3 Reactions@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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4 Reactions@tbkomparda thank you for taking the time to reply to me. I am wondering about the support group you mentioned above. I am not finding it with that url. I would love to read some survivor stories for sure! I am doing my best to not google things. I am really doing my best to let my Provider guide me, and trusting in her. She used the words "Cureable" which I am not sure she should have, and in another call she said "I think we are on a great trajectory for you". So I am holding onto those things, but I also want to be realistic. I work with nurses (I am an IT professional) and one of them told me she worked with heart and lung transplant patients. She told me that the patients who remained positive with their outlook, had better outcomes. So I am also holding on to that.
Do let me know about the website. I found Cancercare.org support group, but I am thinking it might not be the correct one.
Do you mind telling me what stage you were when you were diagnosed? I love hearing you are 26 months out. Thank you again for your kindness.
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1 ReactionSorry to hear that you are going through this. I found that the situation became less stressful after there was a plan in place, and I just had to show up and do it.
Regarding the chest port, I had two rounds of chemo through veins in my arms before I had a port implanted (I was 57). That was one round too many. The first round went fine, but chemo messes up your veins, so during the second round, they kept trying to stick needles in different places to start with, and then moved the needle into different veins twice during the infusion. Ugh. Starting chemo ASAP is probably good, even without a port, but I would recommend getting a port before the second round.
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2 Reactions@kristinfloyd You have such a supportive cancer care team especially with your Gyn/Onc. I just love how these doctors, nurses, and all staff consult with one another at Mayo and at other clinics where there is such close collaboration. Your plans to organize your craft room is so smart. When one's life feels out of control I think it helps to do something you do have control over. Like your craft room so that you can do your crafts in a space that feels comfortable for you. I have also read and heard that the patients who are optimistic do better. Now it's time to allow your cancer care team to do their work so that you can do yours.
We are here for you to lean on.
Hi Kristin,
Here it is if you type this in should take you directly to it -
Ovarian Cancer Support Group - Facebook
It's wonderful that you work in a healthcare setting and have access to the best resources.
I was diagnosed at stage 3B there's several different sub-types of OC mine is endometroid estrogen driven they suspect due to silent endometriosis that's one theory. I had my debulking hysterectomy first then followed by 6 chemo's some surgeons suggest like yours 3-4 chemo, surgery and 3 more chemo is standard they won't know stage, grade and subtype until the hysterectomy and the pathology comes back carbo/taxol is chemo used although scary they are so adept at all the pre-meds I pretty much sailed thru a bit fatigue
also genetic testing there are many survivors of OC please let me know if your still having trouble accessing the website or have any additional questions.
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1 Reaction@kristinfloyd, just thought I'd check in. How did things go on Friday? How are you doing?