Ovarian Cancer

[Claudia19960]

I week ago I had a total hysterectomy, plus omentum and pelvic lymph nodes removed, samples taken from my organs. The pelvic wash showed cancer cells, but the large cyst (grapefruit size) around my ovary burst 5 days before the surgery. I have an appointment on Monday for the stage of ovarian cancer, and the treatment suggested.
So far:
No cancer in omentum
No cancer in lymph nodes
No cancer in liver, kidney and lung biopsies
No cancer in colon (had colonoscopy a day before the surgery)
Pre cancer cells in uterus....and they are dissecting it to the max to find cancer if it is there
Ovary (golf ball sized cancer.....biopsy has not yet come back for type and aggressiveness)
Cancer cells in pelvic wash
Blood cancer CA125 marker at 47.
Any suggestions with your experience....need your prayers on Monday morning, and will let you know the diagnosis.
Claudia

[HVAC]

I did carbo and taxotere ( I had to the anme brand because of my Multiple Sclerosis). I did six three weeks apart. The main thing I did not do was eat enough. I finally learned to eat on a schedule. I kept cliff high protien bars by my bed and ate them or the dark chocolate ensure if nothing else. Eating helps settle my stomach.

I did not do a wig I bought all these neat bandanas and my friend went to Africa and bought me all this material and another friend made me more bandanas. I now have all pretty ones in all patterns and colors. My best thing was something I bought at a bike shop called Headgear. It is a tailored head scarf you do not have to tie and it is coolmax and pulls sweat away. I have hot flashes. They sell them on line and they come in many colors. You do not have to tie them so they can be put on fast if unexpected company comes. I shaved my head this was better for me than watching chunks of hair come out. My husband did to. Scarves slip headgear does not.

I was too sick to take advantage of the support, at my first hospital you had to go to another building for cancer since Gynecological cancer was the only cancer not treated in the new cancer hospital. I wish I had. I found an independent cancer support place. I wish I had contacted them sooner.

If you can get a hold of the Livestrong manual and Journal that would really help. They have good suggestions and questions. I got mine 3 months into chemo. I basically was clueless and caring for myself and talking to doctors for the first three months until I switched hospitals.

If friends want to help think of 600-800 calorie mini meals and have them make you a bunch while in chemo. We had a party aat a friends and made mini meals. I could just reach in the fridge and put them in the microwave. They made me soup, mini pizza, peanut butter balls (do not have to heat), pot pies,mac and cheese, etc. I had six mini meals a day. You need more calories for chemo and it is hard because you do not feel like eating that much. I was told to eat like you take medicine. Small portions are important. I also ate lean cuisines because of the size. Bigger portions put me off.

I listened to a lot of recorded books. I could not watch  TV. I set up in the guest room because I was up and down all night. I could listen to books in the middle of the night with ear phones to stop thinking. Nights were hard.
My husband had to sleep to work and caregive. The news and sad or scary shows made me feel bad.

I set up a Carepage. We had someone check on me at noon or so everyday I was alone. I had about 70 people sign up. There is a calendar so you post what you need and people sign up. People gave me rides and took me to chemo. I bought a cheap walker at a thrift store. I keep it by the bed so in the middle of the night if I am weak or wobbly from medication I can steady myself as I get up so I did not fall. They are great for any family memeber who has surgey as well to pull out of bed.

They consider my cancer a chronic illness. I have stage IIIc and had had it along time and it had spread. I feel my chances after surgery and chemo are really good. I expect to live a long life. I am also BRCA 1 positive so I have a 85% chance of breast cancer so I have to treat that before I get it next. I will also do chemo again probably in the new year. I no longer look at statistic. I am not a statistic I am me.

I also got into Mindfulness Meditation which has really helped. It is basically relaxation and breathing. It helps me because I am a worrier. I have learned to keep the squirrels from running in my head.

What we all need to get through this is validation ( what is happening to you is real), compassion and to know you are not alone. A sense of humor helps. I have to make bad jokes about everything.

Also I had to learn that it is okay if the house is a mess. I had to learn to be gentle with my care givers who may not do things the way I would. I learned to be honest and kind with my husband. We just communicate and do not care about the small stuff.

I have looked at my mortality and realize I have the same life expectancy as I had before the cancer. I still only have this moment, today for sure. Oddly my husband and friends have become closer. I do not get as bent out of shape about day to day things. I was not happy at first I was real scared and angry. I think I was one of the angriest people they ever dealt with.

Now that I am not so scared I am happy. I always wanted to ride horses so I found someone with a horse who would give me lessons. I rode after my second chemo and now once a week. I do yoga at the cancer support. I take my dogs for walks.

When I was being diagnosed with MS I bought a hot air balloon ride. This time it is Zip lining and a trip to Williamsburg for Xmas, then Florida to see family, and Gettysburg this summer (last years vacation we missed due to surgery).

Sounds like you have a good cancer center. When you are scared or angry know I have been there and I care. The unknown is the scariest part.
It is not fun but if you are like me you can do it one step at a time. My husband would say you just have to get through today. Now I have blocked the bad parts out and remember all my great moments with family and friends during treatment. Some acts of kindness make me cry.

Alex

[Claudia19960]

Thank you, Alex
Your reply means the world to me! I so appreciate your advise and experience.
I had my appointments with the Chemo port doctor and the doctor that will administer the chemo. My port will be installed on the 26th of December (Merry Christmas to me...LOL), and the first Chemo will be on the 9th of January. Carbo/taxol
I was also fitted for a wig today....
The cancer center in Fort Worth, TX, (Moncrief Cancer Center)seems to be pretty all inclusive. They offer lots of support, counseling, support groups, acupuncture....
Thank God, I have insurance!!!
Alex, what is the prognosis on your health. Are you cancer free at this point?
Please stay in touch with me,
Claudia

[HVAC]

I am just finished the chemo in September and it is doable. In fact I have forgotten about it two months out. I would check out your chemo center first. My surgeon was great the chemo part was a nightmare at the first hospital so I had to switch midstream. It worked out I like the chemo at the other hospital much better. The first place had no support. I saw it right away but thought it would get better and it got worse. My cancer was diagnosed and I was in surgery so fast I never got a second opinion. I have stage IIIc and had a ca125 of 293 before surgery. Mine had to also have part of my rectum removed and they had to leave a lot of cancer because it was too dangerous to remove. It is now 11 after chemo. My hair has grown back and I am riding horses again. I am very happy now.

The port is no big deal really I have had my since May. Ask about side effects of chemo and how to manage them that is important. Ask about how they deal with Neurtropenia ( low blood cells). Ask about support. A peer counselor is a great thing. We have great cancer support place here not allied with the hospitals. I wish I had gone there when diagnosed.

You can set up a Carepage or lots on helping hands for rides and things. This helped a lot people can sign up for things on their schedule. have someone go to chemo with you.

Chemo itself does not hurt. They give you steroid and anti nausea drugs. I had a rough time but like I said I have forgotten a lot of it.You may have to sleep a lot. Or rest I had trouble sleeping. I like books on cd. TV was to hard to watch. I could not eat so I lost a lot of weight. It is important to eat even if you do not want it. I had friends make premade food in small packs in the fridge. Things I did not have to put any effort in. I ate six small meals. You have to eat while doing chemo. Also eat all you can now while you feel like it. I went into chem thin and got emaciated which required hospitalization. I have gained weight back but chemo is harder on you if you are too thin. In fact they had to cut my dose to 60% because of my weight.

Have good communication with your spouse or family. Also learn to let the little things go. The house might be a mess but that is okay. My spouse was working and doing his and my chores and taking care of me. I was kind to him. It was harder on him because he imagined the worst for me.

I took pictures of happy things with me to the hospital for chemo and an ipod to listen to my music. That helped a lot.

I drank a lot of ensure dark chocolate and cliff high energy bars I bought by the case at BJs. These can be taken at certain times like medicine.

I am happy they caught yours early you have a great chance of beating it.

Alex

[Claudia19960]

My post op appointment was last Monday. Stage 1 C in the right ovary....because there were cancer cells in the pelvic wash (ovarian cyst burst about a week before surgery). There was no cancer on the outside of that ovary, only on the inside.
Stage 1A cancer in lower uterus....no cervical involvement, and they believe the cancers are unrelated. More tests pending.
I will start 6 rounds of Chemo (3 weeks apart) after I heal from the hysterectomy, probably beginning of January.
What question do I need to ask? I'll have a port installed....I am going to a cancer center in Fort Worth, and I feel like they are taking care of me, but I will probably need to take more charge with specific questions?
They say it was very fortunate to have found these cancers at such an early stage!

[nyc lady]

Claudia - you have been diagnosed wth OvCa.  When is your post op doctors appointment?  Did they discuss anything with you in the hospital?

Sounds like you will need chemo, standard is taxol and carbo or similar drugs.  They might also suggest IP chemo therapy, where the drugs are also administered directly into your belly.

I will tell you that all the women that have had chemo, will tell you that it is doable.   You can and will get through it.

Stay away from reading the stats, stats are just numbers and you are not a number, you are person and there are always people on the winning side of the stats...and it very well could be you.

Let us know what the doctor says,