← Return to Metastatic Ovarian Cancer: newly diagnosed...help!!

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@naturegirl5

@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?

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Replies to "@mommacandy I understand how shocking your diagnosis is to you. Many of us, myself included, felt..."

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...