Annie: How I Manage Ovarian Cancer

On the morning of my birthday in December 2003, I looked into the mirror and thought to myself, "Damn, forty looks good on me!" Six months later I was diagnosed with ovarian cancer.

I had symptoms for nine months and never thought that it could be cancer. Surgery and chemotherapy left me overwhelmed and exhausted. I felt so alone.

The first time I spoke with another ovarian cancer survivor was when I called the SHARE hotline. I was thrilled to learn that there were long-term survivors of ovarian cancer, including advanced stages, and many women went back to work after completing treatment. I was filled with so much hope that by the end of the call I knew that I was going to get through treatment, too. I couldn't wait to volunteer and pass on a little hope to someone else.

I joined a support group at SHARE and later volunteered on the hotline. I have also attended educational programs and conferences. Connecting with other survivors and staying involved has helped me to reconnect to and regain trust in myself.

Then the cancer recurred twice with liver metastasis and I felt devastated. But, I also felt empowered because I had access to information that I needed to participate in making treatment decisions with my medical team. After three major surgeries, five different chemotherapy regimens and a clinical trial, I am currently enjoying my third remission and I feel great!

I don't have to have all the answers or know what the future holds and that's okay. No matter what happens -- whether this remission lasts forever or there's another recurrence out there with my name on it or the disease becomes a chronic condition -- I know that I have the tools to deal with it, and I am not alone.

Annie Talks about Her Experience with Clinical Trials: Post Date: December 29, 2010; Categories: Ovarian Cancer; Annie Ellis spoke at the Scientific Research Symposium of the Ovarian Cancer Research Fund on November 13, 2010.
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Annie's update May 2010: Post Date: April 29, 2010; Categories: Ovarian Cancer; Remission #3 continues at almost 2 1/2 years! (More than twice as long as first remission) Woohoo! Was it the latest surgery, the chemo assay that helped us select the latest chemotherapy, the latest treatment itself or the vaccine clinical trial? Or maybe it was a little bit of everything? No one really knows for sure. What I do know is that I am a very lucky girl. There are no one-size-fits-all answers regarding treatment, diet, lifestyle and coping. Everyone responds differently.

Life has been good and busy. I'm preparing for my older daughter's wedding coming up soon. In 2007, I wasn't sure that I'd live long enough to see this day--and now I lost some weight, picked out a fantastic dress and plan to do a lot of dancing at the reception. Even though things are going well, I am determined more than ever to stay involved with the advocacy community and current with the latest medical research. My focus is doctor/patient communication and the decision-making process in the recurrent/resistant setting.

Hugz,

Annie

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How are you doing now in 2010?

— Kathleen

You are courageous and have a great attitude!

— Rhea Sanborn

thanks so much for the Hope you share. I feel the God of my understanding sends Angels here on earth. The support i feel is Great,again thanks for your share.Would like to know hou you are doing now 6/2010 Donna

— Anonymous

Kathleen and Rhea: Thanks! Check out my May 2010 update posted April 29, 2010.

— Annie

(7/1/2010) Donna, I am so glad that you are feeling support through this website. How long have you been an ovarian cancer survivor? How am I doing now? Right now, 3rd remission is still holding and today is my 6th "cancer-versary." Six years ago today I woke up from surgery and became a cancer survivor. Every year I take a few moments to acknowledge how much my life has changed and how fortunate I am to have the love and support of my family, friends, and my "teal sisters" at SHARE. And I celebrate (usually with an ice cream cake) that I am still here and living as fully as possible. I work full-time and try to go on a walk or a bike ride every weekend with my husband. My older daughter who was in college is now married and my younger daughter who was in high school has graduated from college. I remain involved with various survivor organizations and will be going to the Ovarian Cancer National Alliance annual conference and participating in Advocacy Day in Washington, DC on July 10-13. If you can't be there, please consider signing up with the Ovarian Cancer Action Network (http://capwiz.com/ovarian/mlm/signup) to add your voice to those of us who will be visiting our elected officials regarding the importance of additional funding for ovarian cancer research and awareness.

— Annie

Annie, I had no idea you had endured so much until I read this blog. I admire your courage.

I am a new cancer patient. Was diagnosed about six months ago. (actually my surgery for ovarian cancer was six months ago today !) My chemotherapy was completed about three weeks ago. Mandate from my Doctor for this summer: "Get fat!" (have lost 30 lbs during this ordeal.)

SHARE has been a great comfort to me (we'll miss you Annie) but have a great summer ! Roberta B.

— Roberta B.

Roberta: Congratulations on completing treatment! Hurray! I love your doctor's instructions! Now is the time for living and enjoying!
Thank you so much for your kindness. Sending you lots of hugz!

— Annie

Dear Annie - I am SO inspired by your story. Your positive attitude, courage and determination I'm sure have contributed to where you are today. I'll remember all that you've been through each time the prospect of a grim future gets me down. I too try to stay positive each and every day. I was diagnosed with OC in May 2010 and had surgery on June 24. I was feeling great and had no symptoms whatsoever. My doctor ordered a routine pelvic ultrasound and the mass was found. Stage IIIC!! Can you believe it? Anyway, I had optimal debulking with no residual tumour. I've completed 2 rounds of chemo out of 6.

All the best to you Annie and thanks again for the encouragement.

— Nancy Hiemstra

Dear Nancy: How lucky that the ultrasound was ordered when you had no symptoms! Congrats on the optimal debulking and getting through the first 2 rounds of chemo!

I’m glad you have found encouragement in my story, but I must admit that I was an emotional wreck during much of my ovarian cancer journey. I have felt overwhelmed, vulnerable, depressed and scared. The anxiety was so strong and constant that I could almost feel it on my skin. There was so much pressure from so many people to stay positive. I tried to force myself to be positive all the time, but couldn’t maintain it for long periods of time—and then I felt guilty that my stress and depression were somehow feeding the cancer.

What saved my sanity was the chapter “The Tyranny of Positive Thinking” in Dr. Jimmie Holland’s The Human Side of Cancer (See link: http://www.humansideofcancer.com/chapter2/page3.htm) We all have different coping styles and there is no right or wrong way. Ovarian cancer is serious and we all have to do whatever gets us through the day, or the hour, or even the next minute. I’ve actually learned that sometimes I need to wallow (or marinate) in my feelings before being able to move on. I believe a positive attitude is not mandatory, but optional, kind of like having shock absorbers—it doesn’t change where the road is going, but it can make the road feel less bumpy.

I wish you continued good luck as you finish treatment! Hang in there!

— Hugz, Annie

My mother is 83 and has always felt young and healthy for her age. One month ago started experiencing shortness of breath, cough, wheezing and extreme fatigue. Had 1 1/2 leters "cancerous" fluid drained off chest 10 days ago and yesterday had CT of pelvic region detecting 5cm mass on ovary; also has 1cm growth on lung. We talk with med. oncologist in 4 days for treatment/surgery plan. It's so tough knowing she has quite a road ahead of her. We want to give her as much support as we can and keep her hopes up. She has strong faith in God and wants to go through all she has to to survive. Is there a survivor out there we can hook my mother up to or we can talk to who is in her 80's and has had similar problems. We all need to find the best way to deal with this. Thank you.

—

First, I hope that there is a gynecological oncologist on your mother’s medical team. A gynecological oncologist is the only kind of doctor that is trained to do the specific kind of surgery that is needed when treating ovarian cancer. If you need help finding a gynecologic oncologist, you can go to www.wcn.org/findadoctor

The second thing is to remember is that your mother is not a statistic. She is an individual and statistics don’t apply to samples of one. Those were the words my father shared with me when I was first diagnosed and overwhelmed with what lay before me, and those are the words that still give me hope almost 6 years later.

I encourage both you and your mother to call the ovarian cancer hotline (866-537-4273). You can do so anonymously if you want to. The hotline is manned by ovarian cancer survivors who have walked in your mother’s shoes. Being able to talk to another survivor was an important source of support for me. Your mother sounds like a remarkable person, and that fact that you are seeking out help shows in and of itself how much you care about her. Thank you for being there for her.

Best wishes

— Gwen

Dear Annie,

My mother only recently got diagnosed with ovarian cancer stage 4. I have been in shocked and crying non-stop. i have to break it to her soon...and chemo is going to start for her before surgery. i don't know how to deal with it despite having friends and family around. there seems to be so many people around me having cancer and it's just so heartbreaking. i am so afraid of losing my mother, she is only 60 and i have yet to give her the life that she should have.

Hid.
Singapore.

— hid

Dear Hid

It is heart breaking when a member of our family is diagnosed with cancer. As a survivor myself, I want to thank you for being there for your mom. I can’t tell you how much that will mean for her to have you by her side.

My mom was diagnosed about two years before me, so I know what you are going through with your mom. Even though ovarian cancer is a very serious disease, there are sources of hope. One woman I know was diagnosed with stage 4 who went through surgery and chemo, got to a remission and has been there ever since, and she are 10+ years out from her diagnosis. Certainly, not everyone has that experience, but it does happen. That your mother is stage 4 and getting chemo first (neoadjuvant chemotherapy) will help when it comes time for her surgery. There was a recent study that showed women who were stage 4 who got chemo before their surgery had a better chance of being “optimally debulked” i.e. have all of the cancer removed or if anything is left, it is of a very small size that they feel can be treated with chemotherapy post surgery.

If you or your mom would like to talk with someone who has gone through what she is going to be going through, please don’t hesitate to call our hotline – 1-866-537-4273. Alternatively, there are a number of on-line communities/forums where you can connect with other ovarian cancer survivors. One is the Ovarian Cancer National Alliance Support Community (www.inspire.com/groups/ovarian-cancer-national-alliance ) and another is the ACOR Ovarian Problem Discussion List (http://listserv.acor.org/archives/ovarian.html).

Thank you again for being there for your mom. I wish you and your mom a source of comfort and peace as you go through these next steps in her journey with cancer.

Best wishes,

— Gwen

Dear Hid,

Your mother is so fortunate to have such a devoted child. A diagnosis of ovarian cancer is shocking and scary for the whole family and your feelings are normal. It sounds like your mother doesn’t know the diagnosis yet and you are the one to tell her. That seems like a lot to ask of you. Is there a doctor or medical professional who can help explain the diagnosis to your mother? Is there a social worker available to provide support services to both you and your mother? Sometimes we need more assistance than family and friends can provide. We don’t have any first-hand experience with this agency, but it looks like the Singapore Health Promotion Board might be able to help: http://www.hpb.gov.sg/cancer/article.aspx?id=2360.

Stage IV can be a tricky situation, but please remember that statistics are over 5 years old and do not apply to individuals. I personally know a few women diagnosed with stage IV who remain cancer free after initial treatment. I know several more stage IV survivors who, with the help of their medical teams, have been able to manage recurrent disease for many, many years—next week will be 18 years of survival for one of my friends.

Dealing with cancer treatment and living with uncertainty is challenging and can be so overwhelming that it is easy to get stuck in fear. We all have different ways to cope and manage these feelings. I was lucky to have access to many support groups. One thing that helped me get through the ups and downs of treatment and take my mind off things for a short while was taking time to enjoy little things: flowers, a special treat, funny movies, looking at photo albums, planning a trip. Perhaps you can provide your mother with similar mental “vacations” during this journey. I hope that you are able to find the support in your area that you and your mother deserve. I wish the best for both of you.

— Hugz, Annie

IMHO you've got the right anwser!

— Anonymous

Dear Hid:
There is hope. My cousin was diagnosed with Stage 4C ovarian cancer at age 65. She had surgery and chemo and lived on for another 15 years before dying of Alzheimers.Make sure your mom gets the treated by the experts.
Best,
Glyn

— Glyn

Dear ANNIE, I dont know what stage you are but I am a stage 4 with mets to lungs and lymp nodes, I had 8 doses of chemo now Iam on maintainence, drs says I had a good response to the chemo, I am trying to stay positive , but its hard rd do dont know what else to think, any advise would be welcome Miney

— Anonymous

Dear Anonymous,

How wonderful that remission has been achieved and that you are on maintenance. Being a "responder" is good! I was originally stage IIC and had 2 recurrences with liver mets. No one thought I would have a recurrence, but sometimes the unexpected happens with this disease.

It does take a while to adjust to our "new normal" and the time right after first-line treatment ends seems to be when we feel the most vulnerable. I was overwhelmed and I thought I was going crazy because all I could think of was CANCER when my family thought I should be happy and positive because treatment was finished and I beat it. These feelings took quite a while to ease up. It was very hard for me to learn to live with uncertainty and a loss of control.

It was so helpful for me to connect with other suviviors who had gone through the same things. Two books that really helped me get through this time are: After Cancer by Wendy Harpham (See link: http://wendyharpham.com/PAGES/After.C.htm) and “The Tyranny of Positive Thinking” in Dr. Jimmie Holland’s The Human Side of Cancer (See link: http://www.humansideofcancer.com/chapter2/page3.htm).

Good luck with everything! Please call the SHARE Hotline at 1-866-537-4273 to connect with local support groups or to talk to an ovarian cancer survivor. We are here for you.

— Hugz, Annie

Hello,I am a stage4 ovarian patient, as you see ,I have posted that my ca 125 was7, and I have learned today that I have recurrent disease, a node to the lungs and swollen lymp nodes,, any advise would be helpful ,,,,,I feel helpless.

— Miney

My comment is for Glyn.
Do you know what your cousin did to survive for so long? i am sure we would all love to know! x

— lisa

I was diagn. dec. 17, 2003 with ovca stage 3c. I had 6 tx with carboplantin and taxol. Then was in remission for one year. After a year the cancer spread to my liver. We started chemo again but I went into anaphylactic shock after the 3rd dose of carboplantin and ended up killing the tumor with radio-freq. ablation. then another year of remission. This time it came back on a lymph node and my doc used cyberknife tx. It was wonderful!! Three treatments in 3 days and I was in remission! That was 3 years ago and I'm still in remission. Dec. 17 I will be a 7 year survivor. I wouldn't be alive today if God hadn't been with me.

— Shirley

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