Metastatic Ovarian Cancer: newly diagnosed...help!!

@mommacandy I understand how shocking your diagnosis is to you. Many of us, myself included, felt shocked when we heard our diagnoses of cancer. In my case it was endometrial cancer. I'm stunned by how many of us have gone to our medical providers repeatedly with pain that did not feel "right" to us and it took several appointments before an accurate diagnosis was made. At least that's what I extracted from what you wrote. Like you, I was completely in the dark about what questions to ask and where to go. I already had a relationship with Mayo Clinic that had begun a few months before the endometrial cancer diagnosis so I told my gynecologist that I would like a referral to Mayo Clinic. I live in a rural area of Michigan where no one treats endometrial cancer that require a hysterectomy so I had to be referred to somewhere else.

I have a few questions for you that will help me figure out what questions you can ask.

1. Did your doctor who made the diagnosis refer you to an oncologist? In my case I was referred to a GYN-Oncologist who specializes in gynecological cancers. My slides from my biopsy were sent by my local hospital pathology group to Mayo Clinic and then the Mayo Clinic pathologists reviewed my slides. The slides were already at Mayo Clinic by the time of my appointment. Did you doctor arrange to have your radiology report sent to oncology?

2. How quickly can you be seen by oncology or GYN-Oncology? Since you already know that there is cancer in your ovaries and your liver it's important to get seen as soon as possible. I would really push for that if it has not happened already.

3. Where can you go for more testing and then treatment? That depends on your insurance. Since you reside in TN does your insurance require that you get your care in TN? If you don't know you can call the phone number on the back of your insurance card and ask that question. Can you be referred to a National Cancer Institute-Designated Cancer Center? This is where the cutting edge clinical and research occurs and the medical providers usually work in a collaborative way with one another. There are two listed in TN - St. Jude's in Memphis which I assume is for children and at Vanderbilt in Nashville. Your insurance will tell you whether you can go to an NCI-Designated Cancer Center in another state if you want to do that.

NCI-Designated Cancer Centers

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

4. You can ask what other tests can and should be done. Blood tests such as C A-125? PET Scan? MRI? There is also imaging that combine such as PET/CT and PET/MRI. These scans provide more precision in the diagnostic process than the CT.

5. Is surgery recommended? If so, what does the oncologist recommend?

Ovarian Cancer information from Mayo Clinic

-- https://www.mayoclinic.org/diseases-conditions/ovarian-cancer/diagnosis-treatment/drc-20375946

6. Will there be genetic testing? In my case genetic testing was performed on the tissue from my hysterectomy. However, genetic testing is often done through a blood draw in a lab and is tested to see if you are at risk for other cancers. Genetic testing may not be a high priority right now but it's a good question to ask.

Does this help you get started? Do you have another appointment scheduled with your doctor who made the initial diagnosis? With an oncologist?

Do you have someone you can talk to about how you are feeling? Do you have family or close friends who can support you?

yes they have sent referrals for a GYN- oncologist to both UVA and UT...since i do not have insurance i will likely be relying on financial assistance from the hospitals... biopsies have NOT been done yet, this was diagnosed from the CT, labwork, ultrasounds, and physical exams i've had done through the free clinic...i HAVE applied for TN medicaid already but i am not sure i will qualify but i know i should qualify for the financial assistance based on what i've seen on the websites for the 2 hospitals...
UT is about 2 hours closer to me and is not a NCI designated cancer center...HOWEVER i have a "working relation" if you will with UVA as for the past 5 months i've been driving a friend to UVA for his chemo treatments every week.. that is approx a 4 hour drive... and UVA is one...
i do know that they sent those referrals today while i was in the office...basically i told them i didn't care WHICH one got me in first but obviously i would prefer UVA even though its further...they want a PET scan done but we can't afford to pay for that and neither can they...

As for genetic testing...i am a 10 year thyroid cancer survivor... this past halloween made 10 years cancer clean...other than a basal cell carcinoma on my face which surfaced a few months ago...still waiting on dermatologist appt about that...my mom and her first cousins was in one of the earliest genetic studies done at UVA back in 88... from what i remember they were one of the earliest genetic connections made..but that is where she got her cancer treatments done as well...her's was breast to bone so i'm sure there's some genetic links that UVA might be interested in pursuing...idk but its a thought...

right now i seem to be in a hurry up and wait...i'm waiting on a call from a gyn oncologist office from one of the two universities...

As for support? i've been the main rock for my friends journey through pancreatic cancer...but i have a very supportive hubby and kids...and a couple of awesome friends...

I was diagnosed with ovarian cancer June ‘23. Started having pelvic pain in Jan ‘23. Convinced it was long Covid. Not getting better so doctor ordered a CA125 test, it was over 1000! Went to the er immediately & CT scan showed cancer. Started 3 rounds of chemo, had a total abdominal hysterectomy 9/18/23 followed by 3 more rounds of chemo. In Dec my doctor said I was in remission, follow up CT scans were clear! Recently my CA125 increased twice so doctor ordered a pet scan to be done 1/31. My anxiety is out of control! I have a wonderful team at Northwestern Medicine & have been on top of things from day 1. I’m anxious, nervous, scared, etc. Waiting for the pet scan results & next step is torture! Pray Pray Pray. You have to be your own advocate & demand treatment asap! 🙏🙏

@corday7578 Thank you for responding here to @mommacandy and sharing your experience.

@corday7578 Your cancer care team is right on top of this. I’m so relieved that you have a great cancer team at Northwestern Medicine.

I had my cancer surveillance appointments last week at Mayo in Rochester. I had CT Scans and my anxiety before those scans was very high. I was very aware of the irrational thoughts the day of the CT Scans and as I waited for my appointment with my medical provider for my physical exams. Waiting is torturous. That’s what gets all of us, I think. I don’t like the anxiety but it’s there and many of us who are cancer survivors have it. We have to figure out how we will address the anxiety and what works for us.

Good advice. Be your own advocate and be tenacious.

@mommacandy I’m so relieved to hear that you have a referral both gyn-oncology practices, and both are at universities. I know every state administers their Medicaid programs differently and I do hope that you will get TN Medicaid. I don’t know your situation but I very much believe that each and every one of us deserves medical care.

Glad to know that you have a supportive family that surrounds you. You’ve been the rock for your best friend and now it’s time to allow your family and friends to support you. Do you have a religious community for support? If you’re anything like me, allowing others to support you when you are used to being the rock is a challenge.

If you don’t hear from one of the gyn-oncology practices by early next week, will you call them and make sure they have your referral? And ask when you can be seen?

i absolutely will!!! I called UVA yesterday morning (i honestly have their number in my contacts on my phone because of my friends multiple trips), they said they hadn't gotten it as of then, told me to call the referring office and give them a fax number to send to and mark stat/urgent... they said they are closed on Mon so i'll prob give them til Wed to call although to be honest i'm struggling with not calling them again this morning...lol....i also have filled out financial assistance for both places yesterday..
can't say i have a religious community per se but i have a lot of Christian friends.. and it IS very hard for me to accept help... i'm so used to doing for everyone else i can say that will prob be one of the harder things....
my anxiety is really high this morning....i want this done with...
@corday7578 I am curious as to what chemo drugs they gave you and if you lost your hair... reason i am asking this is i have long hair (almost to my waist) and i'm thinking okay...could i find someone to make a wig for me from my own hair just in case i DO lose it...

I know 2 of the drugs are Carboplatin & Paclitaxel. Also Fosaprepitant & Palonosetron to prevent nausea. There is an amazing facility next to the cancer center called Living Well. They offer so many classes in person or virtual such as gentle yoga, art classes, medical discussions from oncologists, counseling, etc. They also have a room where they help you pick out a wig or head wraps and it’s all free! A friend got her free wig from the American Cancer society. Don’t know if someone can make a wig from your hair. I was a financial counselor at a hospital in Wisconsin, help is there! Moved back to Illinois to be near family & retired from Northwestern Medicine as a Patient Advocate. Don’t give up, hope, prayer & support is all we have and getting the best treatment!

Yes there are places that use your hair to make you a wig, i watched a video of the women making it. Very interesting, and spendy i think. Just google it. You never know! They just need measurements and such. Hang in there, try to calm down. And find out what your best options are for your care. Prayers