Newly diagnosed with ovarian cancer (OC) ~ looking for support

Posted by paisleybandit @kristinfloyd, Feb 5, 2024

Hello-
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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

jean1957 | @jean1957 | Jul 11 10:31am

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.

anitasilva1104 | @anitasilva1104 | Jun 27 9:41am

In reply to @ladawny1 "I am glad I found this support thread. I am also almost 53, may. Not sure..." + (show)

Any update?

Gail | @gaylekse | Jun 21 9:25pm

Thank 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.

Gail | @gaylekse | Jun 21 5:14pm

In reply to @amywells "My heart goes out to you. I was diagnosed with Stage 3b ovarian cancer in early..." + (show)

Thank 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.

amywells | @amywells | Jun 21 8:32am

In reply to @gaylekse "I was diagnosed with Stage3c ovarian cancer in early May. My first chemo is today, June..." + (show)

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.

corday7578 | @corday7578 | Jun 20 11:24am

In reply to @naturegirl5 "@gaylekse Thank you for posting here. Your diagnosis of ovarian cancer must have come as a..." + (show)

It certainly was quite a shock! No family history, perfect health my whole life, genetic testing negative. I have a great support system & my oncology team is outstanding! I’ve been off treatment since Jan & my scan in May was clear. My oncologist cleared me to get things done while off treatment. Have cataract surgery next week, hip replacement in Sept & currently dealing with my 1st bout of diverticulosis. Yikes, it’s always something. Keeping the faith!!!

Helen, Volunteer Mentor | @naturegirl5 | Jun 20 9:42am

@gaylekse Thank you for posting here. Your diagnosis of ovarian cancer must have come as a shock and you did not expect to be writing here about it. I am tagging a few of our members who have been diagnosed with ovarian cancer @jenelleseaman @cipnsue @amywells @corday7578

I can understand your concern about chemotherapy side effects and how these may affect your quality of life. It's so important to have the support of your husband, family, and friends. Has your cancer care team discussed this with you so you have some ideas about what to expect?

Gail | @gaylekse | Jun 20 8:37am

I was diagnosed with Stage3c ovarian cancer in early May. My first chemo is today, June 20.. I am concerned about all the side effects of carboplatin plus paclitaxel and also wondering if I should even try to fight this when 70% of patients see the cancer return within 1-2 years after treatment. I am 84 and have had a good life. My husband, family, and friends are unbelievably supportive.

Any thoughts from those of you who have been on this journey?

gisellef | @gisellef | Apr 3, 2024

In reply to @lathomasmd "Wow! Thank you for the very informative reply! I’ve asked a lot of Canadians about their..." + (show)

Hi;
I have been relatively unscathed but a family member went through a lot during the pandemic --hence our first experience with care outside the country. Since then I have come to understood the difference. Many of my countrymen have not had that experience and truly believe that what you would get is the same , but in the USA, you would just have to pay a fortune for the same thing that is free in Canada. Until you have lived both sides, it's difficult to form an educated opinion. If I can generalize a bit, I feel we, north of the border, tend to minimize our issues and are more patient than our friends to the South, so will not complain about waiting and sub-standard care. I don't know when you gathered your information from Canadian contacts, but since the pandemic, services have become dramatically worse. The media have always put an optimistic spin on the merits of our system and in the process demonized yours... but in recent years they, too, have started asking more probing questions and have taken a more critical stance on the shortcomings which I mentioned in my post.
Best wishes and good health.....

lathomasmd | @lathomasmd | Apr 3, 2024

In reply to @gisellef "Dear lathomasmd: It is not easy to be in a situation where you have a lot..." + (show)

@gisellef

Dear lathomasmd:
It is not easy to be in a situation where you have a lot of out of pocket expenses, so I definitely feel for you. Difficult to know where to begin. Good oncology costs a lot of money so it has to come from somewhere. Research and new drug development needs to be funded and skilled personnel retained. Our ‘system’ has seen a steady deterioration in quality and timeliness of service. Diagnostic testing is difficult to access whether you are already diagnosed or are having symptoms that suggests you may be ill. Where I live my GP will send you to the ER, where you can literally wait anywhere from 10 to (recently one person waited 33 hours) just to be seen by a doc in the hope of getting a scan. Otherwise, possibly as long as a 3-month wait for an MRI if you get your GP to just put in a request. In the ER docs tell you go to your GP to get scanned. People are often diagnosed late stage, at which time, the system is more likely to spring into action. Once in the system you are limited in getting a second opinion. First, by then, you have lost time, and second, where I live the docs in a particular oncology specialty are few in number, and work in a ‘team’ approach, so don’t count on an unbiased 2nd opinion.
The drugs and treatment available to you are dictated by a formulary established by government regulation. Therefore, anything new and innovative might be available about 5 to 8 years after they are in the USA or in Europe or not at all. In the latter all you can hope for is to be enrolled in a trial, which again are limited in a socialist system. There are just not enough doctors to train new ones, to do proper research or even understand existing research done elsewhere to keep up with the latest information. For my family member’s condition everyone enrolled with her received the same drug, whether or not they could tolerate it or not. The only woman who was ever taken off the drug, to which many are allergic, had flat-lined during her treatment. All others were drugged up for three days pre and post treatment so they could get through it. Furthermore, they would typically be administered 3 weeks worth of chemo in one sitting rather than come in once a week. This makes it extremely difficult to tolerate and has secondary cardiac impacts, which the oncologists dismiss as relevant. Why is this done? To save on chemo nursing resources. It is a public system after all and you should be grateful for what society is prepared to do for you.
Follow up care post-treatment is also sketchy. No bloodwork! During the pandemic, all that was done was a quick phone call and three or four questions, leaving it to you to know when something is worthy of attention.
Multiply all of this across all medical modalities.
For the healthy folk, be prepared to wait 2 years (yes, years!) for a routine colonoscopy. A friend of mine had to wait 3 years for a new hip and in one community south of where I live, a paramedic who incurred a back injury at work was told he would have to wait 5 years for surgery and then most likely be wheelchair bound. His community collected the $50,000. needed to send him to a clinic in Germany, where he was treated and came to back to work within the following several months.
Please check out our income tax rates. It is not that we don’t pay enough to get the services we desperately need. Many of us have had to go to another country to pay full freight and pay a much higher tax amount than you would in any state of the USA.
This state of affairs did not come upon us all at once, for if it had, we would have been like the proverbial frog dropped in boiling water. There is no one specifically who can be blamed for this and yet we are all complicit in the outcome.
Good care costs money. If you value your life you have to be prepared to invest in it. To do that effectively you need to have choice. That is the key element missing from a wholly public system. Some well meaning person determines what that is for you. If you are fine with that then by all means go the Canadian way. I don’t have an issue with a baseline of care that is available to everyone and having it be cost free. But, we should always be able to access alternatives if we feel that this is in our personal best interest.

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Wow! Thank you for the very informative reply! I’ve asked a lot of Canadians about their healthcare experiences, and never had such a detailed response. Maybe because none of them had such a serious, life-threatening condition. I wish you the best.

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