Advice for just starting my Ovarian Cancer journey
Hello Everyone, Let me say thanks in advance for any and all advice or comments. It is very kind of you to share your stories and opinions. I may not be able to respond right away. Sorry for such a long post. I just want to get all of my info and questions out there. I will update with new information as I get it.
My husband and I are looking for advice about what is most likely the beginning of my Ovarian Cancer journey. I have not had a biopsy yet but all signs indicate OC.
I am a 62 years old woman who most likely has ovarian cancer. I went to my primary care physician for what I thought were gastrointestinal issues. Occasional abdominal pain. A CT scan and MRI show masses in both ovaries with spread to some surrounding areas as shown in the report below.
I have seen one gynecologic oncologist with Texas Oncology so far in Dallas Texas near where I live. It turns out my ACA Cigna Connect individual health insurance is not very good because he referred me to a colleague who seems to be the only Texas Oncology who has "block time" to perform operations in a Methodist Health Care hospital (Charlton Cancer Center) which also seems to be practically the only hospital my insurance covers.
I am scheduled for a full body CT scan Monday, Nov. 27, 2023.
I am scheduled to my first consultation with the new gynecologic oncologist Nov. 28, 2023.
I am scheduled for hospital pre-admission testing Dec. 1, 2023.
I am scheduled for an operation Dec. 7, 2023. They said they will do laparoscopic inspection and based on that may open up the abdomen to do the debulking or may opt for chemotherapy first and later do the debulking. He also discussed possible intestinal surgery and colostomy reversal. I am a little confused about when the biopsy would be done and will ask about that on the next visit. I guess this is part of what is called "staging"?
One thing I wish I had done sooner but will do this coming Monday is schedule a visit to MD Anderson Cancer Center in Houston. It will be self pay there but my husband and I agree that we likely have enough money to pay for it. I am guessing about $100,000. Has anyone here done that?
What questions should I be asking the doctors at this time?
Would it be worth waiting for a MD Anderson doctor if they could not do it sooner than the Texas Oncology / Charlton Cancer Center Dec. 7, 2023 operation?
I hope it is not inappropriate to post my CT scan results here. Please see below.
EXAM: MRI Pelvis W / WO (72197)
HISTORY: Right ovarian mass on recent CT suspicious for neoplasm, presents for further assessment.
TECHNIQUE: Multiplanar, multisequence MR images of the pelvis were obtained before and after the intravenous administration of 15 mL Clariscan.
COMPARISON: CT abdomen and pelvis dated 10/26/2023.
FINDINGS:A complex right ovarian cystic mass measures 4.8 cm AP by 4.0 cm CC by 4.4 cm TRV and demonstrates lobulated enhancing mural nodularity, highly suspicious for a cystic ovarian neoplasm. The left ovary measures 3.0 x 2.9 x 2.7 cm and demonstrates multiple small cysts, the largest measuring 1.8 cm. There is a poorly defined area of enhancing soft tissue within the left adnexal region, which partially encases the left ovary, extends over the anterosuperior aspect of the uterus, and demonstrates partial effusion restriction, suspicious for peritoneal metastases (postcontrast series 1201 images 45-50). There is a similar-appearing confluent masslike soft tissue within the anterior aspect of the left lower quadrant, which measures 6.0 x 2.9 cm in axial diameter on series 201 image 11). This finding was present retrospect on prior CT abdomen and pelvis dated 10/26/2023 and is highly suspicious for lower omental/mesenteric metastases. The uterus measures 5.5 x 2.9 x 4.3 cm. Endometrial stripe measures 3 mm in thickness. No definite fibroids are identified. The cervix and vagina are unremarkable. Osseous structures are unremarkable. Normal muscle bulk about the pelvis.
IMPRESSION:
1. 4.8 x 4.0 x 4.4 cm complex right ovarian cystic mass, highly suspicious for a neoplasm.
2. Ill-defined area of enhancing soft tissue within the left adnexal region, which partially encases the left ovary and extends over the anterosuperior aspect of the uterus, highly suspicious for peritoneal metastases. There is similar-appearing masslike soft tissue within the anterior left lower quadrant, which was present and retrospect on prior CT and is highly suspicious for lower omental/mesenteric metastases. Dedicated CT of the abdomen and pelvis with intravenous contrast would be helpful for more complete assessment. Gynecologic-oncologic consultation recommended.
Report Ends
Comments
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Good morning, Texas Mom,
I'm sorry to hear you have this diagnosis. But you're being proactive, which is great. You need to be your own advocate throughout this.
I remember one of the first things I read when I had a similar diagnosis, probably ovarian cancer but not confirmed. It said you want a very experienced gynecologic oncologist to do your surgery. I don't know how much experience the doctor has who you've been referred to, but I would proceed with caution. Ask him or her how long they have been doing this and how many surgeries they have performed. The first doctor I interviewed had only done about 50, which didn't sound like enough experience to me. If it was me, I'd opt for MD Anderson, if possible, because the surgeons there should be very experienced with this procedure. Alternatively, you could look for a good research hospital to do the surgery. If you are paying out of pocket, it might be cheaper that way, since surgeons at research hospitals don't get paid as much. I traveled to UC-Irvine for my surgery. I saw one of the top 10 gyn/oncs at the time.
When I went through this, they never did a biopsy. Regardless of your final diagnosis, they need to remove what they are seeing in the scan. So, they just go in and if it's cancer, which they determine during the surgery, they proceed with the debulking procedure. During the initial look, if they feel they won't be able to perform an optimal debulking where they can remove all the visible cancer 1 cm or larger, they will opt to do chemo first, to reduce the tumor load, and then go in later to do the debulking. An optimal debulking is essential, as it improves your outcome.
I am a huge advocate for taking an integrative approach, meaning a combination of conventional treatment and alternatives. I feel this is easier to do if you consult with an oncology naturopath. Ovarian cancer is a complicated disease and it's good to have the guidance of someone who has a background in combining treatments. Your conventional oncologist won't know anything about alternatives of how to use them. I took a combined approach and although my surgery was suboptimal, and my doctor said the tumors would not respond to the chemo, I've been NED since 2010.
Good luck. I hope this helps.
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Texas girl--Oh, dear girl. I feel for you. This is a shocking thing for you and your family to have to grapple with. I'm a bit further along in the journey, having just finished 4 rounds of chemo, aggressive debunking surgery, and awaiting more chemo. What do I know now, that I wish I knew before? Well, I was so disappointed when he did an exploratory laparoscopy, and told me I needed chemo first. I thought that was a bad sign. Not so... four rounds of chemo was VERY effective at reducing the tumors (I had mets to the diaphragm, bladder, sigmoid colon... it was everywhere). The surgery that following was deemed very successful. Also - I was terrified of chemo - but didn't need to be. I was scared of nausea and vomiting - there was none. I did have a fair amount of pain following chemo, but meds absolutely helped, and I didn't hesitate to take them. I am now one month post surgery, and everyone is telling me I'm doing fantastic, so I have to believe that. I went into this in pretty good physical shape, so that's helping. MDAnderson is as good as it gets, but hoo boy - I believe you might be underestimating the costs. I went to Sloan Kettering in NYC, and haven't seen all the bills yet... but they're up there. You're doing all the right things, reaching out, getting information and seeking excellent care. Good luck --you're gonna get on the other side of this - YOU WILL!
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Thank you so much. Yes this does help. I will certainly ask the surgeon about his experience. Also I will definitely look into oncology naturopath.
Hi rdubins, This is John, husband of Texas_Mom. She is too overwhelmed to respond right now but I want to thank you for your story and your support. It is great to hear your chemotherapy is so effective and that your surgery went so well. She is starting her first round on Jan. 9, 2024 and quite nervous about it. Pathology shows High Grade Serous Ovarian Cancer. We are waiting for the genetic test results. Thanks again and please stay in touch.
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I forgot to add that you are right, MD Anderson is too expensive for us since not covered by insurance. She had debulking done by Dr. Roane of Texas Oncology at Methodist Charlton in Dallas TX. He said it went well although a reversable colostomy was required. We hope to get it reversed in about 6 months after the first 6 rounds of chemo and recovery. We have since changed ACA Marketplace insurance from Cigna Connect to BCBS of Texas Blue Advantage Plus which covers more hospitals including UT Southwestern Simmons Cancer Center. We are considering changing doctors to one there not because Dr. Roane did anything wrong but because UT Southwestern Simmons Cancer Center is highly rated. Thanks again and take care.
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Mr and Mrs Texas Mom - I know you're nervous about chemo - I get it. I was too, very much so. Hold onto this--after what you've been through, and that's ALOT--chemo really won't be so bad. In fact, the day after you'll be feeling pretty good - that's the residual steroids they load you up with before beginning the infusion. Take the meds to get through the abdominal pain. THEY WORK. DRINK A LOT OF WATER - clear that stuff out of your kidneys. Drink, drink, drink. In about a week, you'll turn a corner. I'll be thinking of you and have marked on my calendar your start day so I can be sure to put some positive thoughts out in the universe for you! Having gone through the worst of the worst--you guys will be OK. You're doing everything right.
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Mr and Mrs Texas Mom--tomorrow you go for the first chemo. I'm sending lots of positive thoughts to you, from up here in PA. You'll be OK - you'll be fine! The first one is scary, but you'll get through it. This is the first step in your chemo journey. If you get the same chemo as I did, the treatment is in two parts: The first, Paclitaxel in some way interferes with cancer cell division. GREAT! The second, Carboplatin actually kills the cancer cells. EVEN BETTER! So, it's a one-two punch. This combination works, and you'll start to see your CA 125 numbers drop. Best of luck to you--chin up, you've got this! Ruth
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Thank you rdubins. The infusion seemed to go well. No adverse reactions were noticed. She used cold mittens and booties so hopefully she will avoid neuropathy. Today, 2 days after she has not experienced nausea. Her face was flushed red yesterday but that went away. Next infusion is Feb 1st.
Thank you for your support and encouragement. I hope all is well with you.
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Mr &Mrs Texas. Good morning! I hope things are going well with your chemo treatments. I have a suggestion or two. Are you getting an injection the day after chemo for nausea? Did they tell you about taking Claritin several days before the injection and 2-3 days after? For discomfort/pain associated with chemo treatments, warm showers or tub ash’s helped me even if only for 2-3 minutes regardless of the time of day or night. I wish I had been told about the gloves and socks with coldness, as I have constant tingling in hands and feet.😁
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Hi Jacobs, This is John posting for my wife. Thanks for your support and and sharing the tips. She has been lucky not to have nausea. What she does struggle with is severe constipation in the week after an infusion. We have found that a low dietary fiber diet of small quantities 2 hours apart along with Colace 2 in 1, Mirallax and a regular Colace at night helps. She does use the cold mittens and booties.
I hope all is well with you. Thanks, John
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Thanks. Yes she will continue the regimen with the modification of using Citrucel instead of Mirallax and stopping the stimulate part of Colace. Of course she will also continue to drink lots of water and walk a lot. I appreciate your support and hope all is well with you and yours. John
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