Hi New Member

Shelley Hawk
Shelley Hawk Member Posts: 15
edited March 2014 in Ovarian Cancer #1
Hi, I'm Shelley I had my surgery the end of July. A full hysterectomy including ovaries, fallopian tubes, and omentum.
At first we thought it was just a Very large ovarian cyst. I did my regular OBGYN check up in March and this thing grew to the size of a large catalope (15cm) by July.
The blood test did NOT show cancer before surgery. Even after it was removed there was some question. Thank God my Dr. seemed to do everything right including several "washes" on me while I was open on the table.
Seems it was a slightly rarer type of cancer "clear cell" they called it.
The formal diagnosis was Stage I C Grade 3 cancer.
I was left with a large scar starting at my belly button straight down. (not really straight, it's pretty ugly too. I think it took 20 or more staples.)
I feel like I've been on a roller coaster ride. I did my first chemo almost 3 wks ago and I go again this Fri(9/5)for my second treatment.
Still have hair but, it's going fast.
I know lots of Breast cancer survivors but, no ovarian cancer ones.
The surgery has left me still hurting and the now wonderful menopause symptoms are making me crazy. Lots of night hot flashes. They don't make me sweat just wake me up feeling like I'm a blast furnace and keeping me from a good night's sleep.
I felt like I was doing pretty well for a while. There was so much to learn at first. But now, I'm kinda down. I'm not looking forward to what I'll have to go through in the next months. I keep trying to think of all the "angels" I've found since this started. I have great support but, I wish I wasn't feeling so down. I'm 47.

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    Glad you are here
    I'm off to chemo so I'll post again later. Hugs and prayers, Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Welcome
    Sorry you have to be here but so glad you found us. You'll find lots of support here, along with strength, knowledge, and many journeys and hope shared by all.

    I was happy to read your Dr was diligent in your surgery and treatment, makes a world of difference. Please realize it is very normal to be down; continue to share your feelings here and you'll find the "kick cancer's butt" mode will kick in and your spirits will lift. Each person does need to grieve what life is dishing out to them, but I don't know anyone who gets stuck there. God will carry you through and this site will put many women in your life who understand and can share all the fears and hope they have.

    Prayers N Hugs Bonnie

    Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.
  • floridajo
    floridajo Member Posts: 480
    Welcome
    Hello,
    i know you'll love this group as much as I do. They are some of the most selfless,loving and caring women I have had the privelege of knowing. Being a bit down after this diagnosis is normal for many ladies and maybe you should speak with your Onc about it. I'm not gonna sugar-coat this for you,this is a difficult disease the worse part is it is a life changing diagnosis. Talk with us,go to support groups if you need and speak to your Onc. Good luck~~~Joanne
  • saundra
    saundra Member Posts: 1,370 Member
    Back again
    Dear Shelly, We are all in the same boat and I am here now, after today's chemo (19 months without a break) to add my two cents worth. First, the hair. Some of us chose to shave the head when it got really messy (hair on the pillow). I ordered several wigs, one at a time from Paula Young, a wig web site for under 52 dollars each over the last 18 months. The one I got from the cancer center had too much hair for my small frame. I use bandanas at home as they are much cooler for the hot flashes and the cotton ones come in many colors for $1.00 at Wal Mart. I take a 10 mg dose of Paroxetine HCl, an anti depressant and anti-anxiety each day. This cut my hot flashes and sweats down to about half. I seldom have one at night any more and can at last sleep. I have several during the day...and keep a Japanese fan in my purse and a piece of cardboard near my chair.

    My scar goes from sternum all the way down. (Due to liver tumors at the time of surgery) I rubbed Vit. E on it after the staples came out for about 3 months. That comes from the Vit E tablets that I had. I got a small sample size jar and squeezed several at a time and put it on at night. A plastic surgeon suggested this when my daughter had a club foot corrected in 1960 and I have used it to lessen scars ever since with good luck. My surgery was a major debulking to remove many abdominal tumors and radio frequency ablation of the three liver tumors. I am Stage IV.

    I walk for exercise starting at a block after chemo and building up distance daily.

    We all are on that roller coaster so come often and see what might help you and how you might help others. This is a great YaYa Sisterhood.

    ((((Hugs))) Saundra
  • Shelley Hawk
    Shelley Hawk Member Posts: 15
    Thank you
    Thank you all for "welcoming" me.
    Not really the "club" I had hoped to join but, I am glad to be among such strong brave women.
    I feel like I have dodged a bullet in that I was "lucky" enough to have found this at such an early stage. I know I still have to fight and, am trying to change things in my life to live "healthier". I still have to go through "h-e- double toothpicks" with chemo but, it is so much less than what you strong ladies have all ready endured. You give me hope, thank you!
    I hope and pray for no recurrences in myself and for all of you. This is a nasty killer and I am trying to let all of the women in my life know about it.
    God bless you! Keep fighting!
  • TracieK
    TracieK Member Posts: 45

    Thank you
    Thank you all for "welcoming" me.
    Not really the "club" I had hoped to join but, I am glad to be among such strong brave women.
    I feel like I have dodged a bullet in that I was "lucky" enough to have found this at such an early stage. I know I still have to fight and, am trying to change things in my life to live "healthier". I still have to go through "h-e- double toothpicks" with chemo but, it is so much less than what you strong ladies have all ready endured. You give me hope, thank you!
    I hope and pray for no recurrences in myself and for all of you. This is a nasty killer and I am trying to let all of the women in my life know about it.
    God bless you! Keep fighting!

    Welcome Shelley !
    I wish that noone on this site was fighting this disease, but we are. I remember when I was diagnosed in January 08 with 3B, I was in a very hazy dreamlike state for a while. I had IV and peritoneal chemo and made it through all 6 sessions. I think the part that helped me with Chemo was a lot, I mean a ton, of water. I kept myself really hydrated. I forced myself to go for short walks. Also, my gyne-onc suggested rinsing my mouth with salt water or baking soda water often and I had no mouth sores. It also helped ease the metallic taste in my mouth. You are in great place here.... These women can honestly say the understand....because they do. You are in my prayers. Stay strong and remember that you can "live" with this disease.
  • Susan523
    Susan523 Member Posts: 231 Member
    Nice to meet you
    Hi,Shelley,

    I hate to meet under these circumstances, but it's nice that you found us. As the others have said, there is so much useful information here; and it's first-hand.

    For the hot flashes; ask your Dr. about Vivelle patches. I think it depends on the type of cancer cell you have as to whether or not you can use them; but they've helped me tremendously! In fact, I was mad at my Dr. for not giving them to me sooner!! You can also try Evening Primrose (herb), but again, check with your Dr. to be sure it's okay.

    When I got a wig, I had my Dr. write a prescription for it; sent it in to my insurance with my receipts, and I'm happy to say they paid for it! So check out your insurance company; you may be surprised what they cover. And you can have the wig trimmed when you pick it up, so that it may look more natural for you. (Wig is considered a "prosthesis" by the insurance company).

    My scar is about the same as yours, it sounds. I also used vitamin E oil on it, and some Scarzone-stuff.
    I was diagnosed at 48 and am now 50. I'm Stage 3c. I'm currently in remission after 2 rounds of chemo; one of them being IP.

    Take care of yourself, and you'll be in my prayers

    Love,
    ~Susan xoxo
  • groundeffect
    groundeffect Member Posts: 639 Member
    A good test is needed
    Hi Shelley,

    Welcome! I know it takes some gumption to sign up and come to the board, but you're in a good place now.

    Your case is a classic example of why typical testing (probably CA-125) is not an effective test for ovarian cancer. I, too am glad that your surgeon took extra care when you were on the table.

    Sorry to hear about your hot flashes, too. I was fortunate, and didn't have too much of them when I had my surgery. Unfortunately, now that I'm taking tamoxifen to try to lower my CA-125, I'm having a lot of them - and this is now six years after my surgery...

    Take care of yourself, pamper yourself, and let others pamper you, if they will. You need it. Keep tuned into the board here, too!

    Sue
  • terrypaci
    terrypaci Member Posts: 15
    Hi Shelley
    Hi Shelley,
    my name is Terry I am 43 yrs old and I just completed my 6th treatment for OC stage 3c, I had my surgery in March of 08, I was sore for about 6 - 8 weeks after surgery was over, I have the menapausel symptoms as well I have found that soy milk does work and it takes care of about 80% of the flashes, I dont drink it often because it is to sweet, but I also have the bed sheets off and the window open slightly just to let the breeze in and keep the room cool along with the ceiling fan, I also keep a glass of water on the night stand and I wear short sleeve shirt and a pair of light cotton pants.
    I had the same thoughts that you are having not sure how to cope with a new fork in the road, not sure of what is going to happen, I have made a few friends on another site and I talk to them via email or IM on yahoo if there is anything that you want to know or to talk about just let me know, Its hard to deal with treatments because your not sure what is happening just keep an eye on your blood levels, you will feel tired after each treatment and if your blood levels drop they can help you manage this, one main thing I can tell you is not to look stuff up on the internet it can be very depressing, and it can bring you down. just talk to your family and your friends we will make it some what better and more able to cope with this.