ovarian cancer - overwhelmed
hi, my wife is presumably to have ovarian cancer.
big belly, bloating and loss of appetite started about one month ago.
Went to primary doc, then did an Ultrasound about 3 weeks ago, it showed 3cm pancreatic tumor and ascites. Scheduled for a CT scan the following week. Then her bloating/cough got much worse so we checked into the ER about 3 days after ultrasound.
In the ER, they did CT scan, biopsy, paracenthesis and bloodwork on 9/22. it showed she has two tumors about 10cm x 10 cm in pelvis area, one on each side. Her CA-125 is at 15085. Pancreas are normal. Still waiting for biopsy results.
Had first consultation with an oncologist who has a clinic next to the ER hospital on 9/25. He suggested 3 rounds of chemo then surgical removal if biopsy result confirms it's ovarian cancer.
We also went back to the ER on 9/28 to do a thoracenthesis to drain fluid from her left lung, waiting for appointment to do her right lung.
She's having really bad constipation and severe bloating from anything she eats. She's already taking
- docusate (stool softener) 2. simethicone (antigas) 3. spironolactone (water pill)
She's been eating very little, just one or two cups of chopped watermelon, a few spoonfuls of wheat noodle, that's about it.
some questions so far:
- anything we can do about the bloating and what can she eat to avoid the severe bloating? she's cut out all diaries now, they seem to be the most troublesome
- what is the typical tumor size that's too big for surgery w/o shrinking it by chemo. We're hoping she can just go straight to surgery.
- We're in SoCal near Long Beach area. Is City of Hope a good place to get second opinion or cancer treatment? what about UCLA Irvine?
Thanks in advance.
Comments
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user701, the ovarian page is pretty quiet here, and there are a few other ovarian sites out there - names I cannot think of right now. What a lucky woman she is to have such a husband seeking information because no one fights alone!!!
Are you, you are in the fight with her, working with a gynecologic oncologist?? That is what you want. There are lots of things going on with ovarian cancer, including immuneotherapy and if the gyn onc is not fighting for her be ready to push as her advocate.
Any place worth their weight will understand someone getting a second opinion. I don't know what else is out there beside City of Hope, but she is young and she is a statistic of one.
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You are fortunate to be in Long Beach. I just had a surgery and sent tumor samples to the Nagourney Cancer Institute there. I have mucinous ovarian cancer, and it is very hard to treat at advanced stages. It was in my lungs. Dr. Nagourney tested my tumor and told me what my cancer cells were sensitive to, so that now I can choose my first and subsequent chemotherapy more carefully. There are other places that do a similar thing, but I was impressed with their work and depth of knowledge. Nagourney is associated with Irvine.
City of Hope has at least one very interesting Clinical trial going on.
I personally get many many opinions.
To answer your other questions… My tumor was much larger than those, but it also broke on the way out. I think surgery first makes sense since you don’t even really know what you’re treating yet, if you have an excellent surgical team. Getting ex-vivo and genetic testing of the tumor following surgery would be smart before choosing treatment. At one time someone said the max size of bags they use to encapsulate tumors in surgery is 16cm. May not be true for you.
As far as the bloating, etc. I don’t know. I gave up gluten, sugar, dairy, and meat and I feel much much better and lost a lot of weight. I also did food sensitivity testing and gave up those foods, as chronic Inflammation is the enemy. You could try miralax, that is safe to take every day.
Wishing you all the best.
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We live in Kalamazoo, Michigan, and my wife has been diagnosed with stage IV ovarian cancer, and she does have big belly, bloating and loss of appetite. She has a hard time keeping food in her system. The plan given to us by her oncologist is to do chemo, and then surgical procedure to remove ovaries, and the whole reproductive system, and then one more round of chemo. I wonder if there are other options at U of M medical oncology?
I am very frazzled, and disoriented. It two 2 weeks , after the CT scan showed the cancer in her ovaries. She has lost weight, and is very depleted energy wise. On Monday they are going to drainage a liquid that is given a great deal of discomfort.
Can anyone give me some advise?
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Cobo, from what I know (I am a visitor from the Uterine page) that sounds typical. As you probably have found out, Ovarian is a tough one. I would suggest you ask about genetic testing to see if she has any biomarkers that are responding to the immuenotherapies out there.
Your words of "frazzled and disoriented" touch my heart. You and your wife are in my prayers. That may not give you the help you were looking for but I am glad you shared with us. ❤️
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You are most kind, and sensible.
My wife is going to start chemo next Friday, and after chemo, then, the oncologist is going to operate on her to remove ovaries, and the whole of her reproductive system. I guess, at this point, this is what we got. No mention about genetic testing has been aired by the oncologist.
I am totally unprepared for what is coming up Friday. I have to read a great deal about ways on how to help my wife just after chemo. I have to start sometime tomorrow, and learn fast, and hard.
Any tips
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Hi. I was diagnosed with stage 4 ovarian in March this year. Last chemo was September 2023. Beware of the constipation so get ahead of it by setting up a schedule for Miralax and Colase. Ask the nurse to give her a belly band that they have in the room, to support her stomach. It is a lifesaver and will allow her to start walking slowly the day after surgery. I slept in the recliner in the hospital room as it was more comfortable and allowed me to get up easier, with help, to get to the bathroom. At home, I also slept in a recliner for the first few days as it helped. Make her a large pot of vegetable or chicken broth, store some 32 ounce mason jars in the freezer and refrigerator as this will help as meals. Cobo, I am willing to help you as I believe God wants me to help other women as this was a great learning experience for me. I am 71 years of age and last Friday my PET scan said I had no active cancer. [Edited by CSN Support Team] My name is Nyoka. God bless!
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You are great person, Nyoka, in fact you are an Angel amongst us. My wife's name is Virginia (she just turn 50 in September), and I am Antonio.
And your personal history is pure gold in terms of practical advise and inspiration, Nyoka. I will follow your advise, and God bless you. You are an Angel, Nyoka, and Virginia, and I are very happy to hear your news.
I would like Virginia to accept psychological support. Her aptitude, and attitude is bleak. I, of course, know that this is to be expected. Yet, Nyoka, she has never believe on psychology. Her outlook on mental health is however very open, and healthy when it comes to other people. But when it comes to her, Nyoka, she has time, and again rejected psychological support. All our family has encouraged her to seek psychological support, and nobody is able to get her to talk to a psychologist. The mind is a healing machine that should not be discounted as we face Cancer.
Again, Nyoka, thank you, and bless you.
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Hello everyone--I'm Ruth, and I'm with you. I have (had?) Stage 111C Ovarian, with mets to most of my abdominal wall. I lost my spleen and appendix as well as the full hysterectomy, and some work on my diaphragm. This is a rough road we're all on--patients and caregivers.I can offer what I've learned. Regarding bloating and discomfort eating--try for TINY little meals. Nothing carbonated, obviously. Try to get fluids in--as much water as you can. It's important to get nutrition in, so try sipping cold Ensure or a similar product - that's what Sloan Kettering suggested to me, following surgery. Chew gum! This helps with constipation and nausea. Take lots of colase and if things aren't moving along, I take Miralax at night. Finally, I would recommend keeping a journal. This has been very helpful, as I tend to forget the little victories I've made along the way, and it's helpful to see this recovery moving forward. It's never a straight line upward--more like a mountain range, ups and downs. But moving in the right direction. In the weeks between Chemos, when I was feeling good, I cooked up batches of soup and stews and put these in the freezer so that we could still eat well even though I might not have energy to cook. Buy some loose-fitting long nightgowns - the kind that don't have a waist band! Just a long, loose shift. She'll love these. Clothes are uncomfortable for a few weeks following surgery, so these will be a joy to slip into. Finally... a tip that I needed: Washable pads for my bed. I was launched right back into menopause after the hysterectomy and am still dealing with drenching night sweats. These washable pads fit nicely on my side of the bed, I change them in the middle of the night. works like a charm. I hope there's something useful in here for you. Believe it or not.... you will emerge on the other side. You will. I'm sending you oceans of positive energy--it helps! You'll find strength you never knew you had. It will be OK. Just focus on here and now. And come back here often. We're all here to help - here's my hand!!
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Ruth, thank you for the info. I’m Im brand new here. I’ve been searching for a place to find support and info as my wife was recently diagnosed with Ovarian cancer. She made it through her debulking surgery. The doctors say its stage 3C high carcinoma. They took out what they could but she still has it in her liver and spleen and she will be getting her port on the 15th of this month and soon after start chemotherapy. I’ve been doing my best to take care of everything but it still doesn’t feel real and I’m still trying to process it all.
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Richey44 - You're both probably still reeling with the shock of it all. I'm a good seven months into this journey and still a bit numb from it all. She's got the surgery behind her - that's huge. The chemo is no cake walk, but I'll say this: it works. It WORKS. Just start watching her CA-125 numbers plummet, even after the first one. That is so very encouraging! A couple of things to consider: She may need a walker - I did. I still use it for the first few days post chemo, as I'm unsteady on my feet. It helps enormously, and while I was bummed to have to get a walker at my young (ish) age I've been grateful to have it. By the 4th day post chemo, it goes back in the closet. Not everyone has pain from chemo but I did--absolutely no nausea, which I feared more than anything - but pretty significant pain. I am not one to suffer--so I use the heavy duty pain meds liberally. Just keep lots of Miralax close by, as narcotics tend to shut down the bowels. I hope I'm not scaring you with any of this - just want to share what I've learned (for me). Next week is my last chemo - then I'm officially in remission. Between the chemo and the surgery, my cancer appears to be gone. I'm hoping for a long and uneventful remission. Sending you and your wife much positive energy. AND OH!! Almost forgot---you MUST go online to Uniteforher.com!! This is a nationwide non-profit that provides FREE counseling, therapy, acupuncture, massage - all kinds of things - to anyone who has breast or ovarian cancer!! I just found out about this today, and am signing up.
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Thank you so much for this information. I’m so happy to hear that you’re doing well and overcoming all this. You’ve also given me so much hope with by sharing your story. I’ve been by her side day and night through this whole thing and doing research but haven’t had the opportunity to talk to someone who has lived it. So thank you much for taking the time.
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Richey44 - Believe it or not... you two are going to get through this. I know it's overwhelming, and scary- -and absolutely life changing... but somehow, SOMEHOW... you both will discover strength you didn't know you had. Cause you have to - there's no choice here. She's lucky to have you by her side. Love really shows itself in a caregiver role. Keep coming back to this site--we're all here to support each other. What's your wife's name? Ruth
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It’s absolutely been life changing but. Her name is Lauren. I will continue to check back in and give updates. I take her to get her port Feb 15th. We have the consultation with the chemotherapist Feb 21st and then a follow up with the Oncologist Feb. 27th. It helped a-lot just finding this thread today. So thank you again :)
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Hi Cobo,
I hope that your wife is doing better now. How's her Chemo going? Are they ready to operate? I suspect that she will feel a lot better after the surgery and her recovery period. It certainly strains your body having huge tumors in the abdomen and also squeezes on other organs. The Chemo will hopefully have shrunk them ready for the operation. She is very lucky to have you as her strong advocate, seeking out information and researching ways to help her.
Best wishes,
Ingrid
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😉To those spouses that have wondered about the ovarian cancer their spouse is facing I applaud you all and my husband. I was diagnosed with stage lV ovarian cancer April 2023. I had only 1 ovary remaining from previous hysterectomy. I had bloating and weight loss as well as back pain. The diagnosis took us by surprise. Long story short 3 rounds of chemo, surgery to remove a tumor the size of a small cantaloupe with CA125 of over 7000, and 3 more rounds of chemo, I’m doing great. Spouses you need to be understand of all the complaints of pain everywhere and anywhere possible. Side effects to chemo and medications are very real. Be caring. Continue to be loving. Learn how or relearn to cook, do laundry. Developed a support system for your spouse and yourself. Pray a lot and GOD LISTENS.
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YAY - thank you jdjacobs for that uplifting story! LOVE IT!! Thanks for posting. Love that you're doing great, and hope the same for me. And yes, three cheers to the spouses!! You guys have a hard job, too, absolutely. This disease impacts hijacks both of your lives, hugely. Stay strong, everyone!
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