OC treatment for my dear Aunt

palashkusumwal

I'm writing to seek your advice for my dear Aunt (58 y/o Indian) who in February 2018 has been diagnosed with Ovarian Cancer.

 

- CA-125 was measured at 54.4 U/ml

- CECT of the Abdomen notes: "Large poorly enhancing and dense soft tissue mass in the left Adnexa and Ileac Fossa with surrounding diffuse fat stranding. Similar density multiple omental soft tissue nodules seen in the abdomen in the right sub-hepatic space. Diffuse omental caking, edema in the abdomen. Moderate Ascites. Multiple enlarged Retroperitoneal (RP) nodes. No pleural effusion. Findings suggestive of primary malignant left Ovarian neoplasm with diffuse omentoperitoneal spread of disease, metastatic omental deposits and metastatic abdominal nodes with malignant ascites.

- Cytology report notes: "Cytosmears are haemorrhagic and clumped reveal many scattered pleomorphic cells with high N:C ratio and hyperchromatic nuclei. Cell in cell phenomena seen. Occasional bizzare tumor giant cells".

- PET CECT scan report notes: "Metabolically active left adnexal soft tissue mass legion with omental thickening & deposits, left paraaortic and anterior diaphragmatic lymph nodes, mesentic deposits and ascites. Metabolically active few predominantly marrow lesions in pelvic bones - most likely due to benign etiology. Right lung sub-cm sized sub pleural nodule without significant metabolic activity."

 

Her current treatment plan: As advised by a oncologist, she will soon be taking her 3rd dosage of chemo/Carboplatin chemo (Feb 10, March 2, March 23 is the calendar). Doctors recommend a subsequent scan and surgical removal, followed by more rounds of chemo as necessary.

 

I would be grateful if this community could please help answer any of our following Qs:

 

Q1. if any of you were in a similar state we'd love to hear your treatment story from you! And any best practices you'd recommend.

 

Q2. Simply based on the above test results, what stage and type of Ovarian Cancer does this appear to be? Just looking for an empirical opinion. 

 

Q3. Treatment in the United States - Assuming she is not covered by insurance (all "out of pocket"), what total $ costs should one estimate for surgery and follow-up chemo etc.? Just looking for a rough range.

 

Q4. Treatment in the United States - most gyn oncologists here in New York are unwilling to talk to me unless my aunt is in attendance as well. This is unhelpful as my aunt lives in India and is not in a state to travel just for a consultation with them. Any workarounds or alternate resources you'd suggest? Looking more for a free/inexpensive clinical second opinion.

 

Q5. Treatment in India - who are the top 3 doctors in India you'd recommend under whose care we should have the surgery done?

 

Q6. If you've considered or received treatment in India: For this cancer at the stage my aunt is at, would surgery in the US be advisable over surgery in India?

 

THANK YOU for your time, support and valued opinions!

Palash

Tethys41

Your Aunt

Hi Palash,

I'm sorry to hear that your aunt is dealing with this disease.  i hope things go well for her.

In the U.S., the typical first line chemo treatment is Carboplatin and Taxol.  In some cases, Avastin might be added.  It varies as to whether the patient has surgery first, followed by chemo, or some chemo first, followed by surgery and additional chemo.

Based strictly on the information you supplied, it sounds as if she is stage III, since the nodule in her lung shows little activity.  Typically, if the tumors have spread to the lung and/or into the liver, it is considered stage IV.  But a final stage cannot be determined until her surgery.  The type cannot be determined until the tumors are removed during the surgery and sent off to pathology. 

Treatment in the U.S. is extremely expensive.  I don't know whether a doctor or facility would consider treating someone who does not have insurance.  That is typically done as a charity case, which is still quite expensive, but is not likely to happen with a patient who is not a U.S. citizen.  You might contact City of Hope in Los Angeles to see if they have any program that might help with her case.  A ballpark estimate for costs in the U.S., with the accompanying discount insurance companies require, is sonmething in the neighborhood of $500,000 USD, or more, depending on the individual case.  I received Avastin during my treatments and I know my insurance was billed $20,000 USD per dose, and that was only for one dose of that one drug, which I received multiple times.  This did not include the other chemo drugs, the prescriptions that go along with treatment, the additional drugs they administer when chemo is given, the surgery, follow up appointments with the gynecologic oncologist, etc.

I myself was diagnosed as stage III in 2009.  I did have surgery in the U.S. and follow up conventional treatment.  But I also incorporated a number of integrative or alternative treatments.  One of the places I went for this other treatment was a hospital in Mexico - Oasis of Hope.  I had to pay out of pocket for my treatments there and, although it was quite a bit of money, it was much less than costs in the U.S.  I received only integrative treatments at the hospital there, but I do know they offer both conventional and alternative treatment.  The doctors there told me that for ovarian cancer, they see better results if the patient includes conventional treatment, surgery and chemo, as part of their whole treatment plan, even though they treat many other cancer types with alternatives alone.

I considered receiving both chemotherapy and integrative treatments at Oasis of Hope and at the time, this was in 2009, the cost would have been abour $50,000, which only included three chemo treatments.  I would have had to have 3 additional treatments in the U.S.  This price did not include surgery.  But it did include numerous integrative treatments that would have helped the chemo be more effective and help support my body during treatment.  They also supplied supplements and dietary advice aimed at getting my body into balance, so that I could avoid recurrance and protect myself from the damage chemotherapy can do.  I opted to have all of my conventional treatments in the U.S., so paid much less for just the integrative treatment.

If she is interested in what the Oasis of Hope has to offer, you or she can set up an appointment to talk to a doctor there over the phone. 

I wish your aunt the best with her treatments.