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OvCa Survivors' Strategies — What Helps



What Has Helped Me
Cynthia , Ovca "Survivor"
First, I wonder about this word, "Survivor". I wonder what qualifies me to be one? Is it that I survived my first surgery? That I survived chemotherapy the first time... the second time? I don't know where to put this word and certainly don't use it to 'define' who I am. I guess the first thing I realized is that cancer is not the worst thing that has happened in my life. This certainly helped me to put into perspective the other tragedies that have happened in my life. In fact, for me, ovarian cancer has been a gift! I finally gave myself permission to get off the 'treadmill of life'and take the time to finish the 'unfinished'. I am now facing a second cancer recurrence...having been diagnosed in May 2002 with Stage IIIb transitional cell ovarian cancer. What has meant the most to me? Embracing the blessings that cancer has brought into my life, especially the gift of 'time'. I cherish the time I have with those I love. I give my full attention to the moment. My youngest is soon to graduate from high school. This was my LONG TERM goal when I was diagnosed in 2002. I will cry at the graduation ceremony because I appreciate that I 'get' to be there. I suggest making a list of 'goals' - things you want to see while you are 'here'. I did this in the beginning without realizing the power of the desire! I am now seeing the last thing on that first list and am considering making a another one... Also, exercise your options! As much as possible, don't be helpless! Stand up for yourself, ask questions, tell people what you need! As I face this second recurrence I am planning a trip to Europe with one of my sons. I refuse to be remembered as a cancer survivor - I want to be remembered for the way I loved others.

What Has Helped Me
natalie , ovarian mass borderline malignant
if ca-125 results is 0.1u/ml what does that tell u.

What Has Helped Me
Pamela Webb , architect
I am not a "cancer survivor" although I was diagnosed with Stage IV epithelial in March 2002. I will not be described by cancer. It's just a disease, not a vocation or a calling. I have close family, terrific friends, a therapist in the wings, my Rabbi, and the possibility, here in Oregon, of assisted suicide if I decide for that. But,I do not belong to a support group. I have met many "survivors", support group members, and "people living with cancer". It sometimes seems as if they are professional cancer patients, that they want to be my friend because our shared cancer diagnosis is more important than any other fact about us, and that they want to be a doctor or teacher for other people diagnosed with similar disease. I'm not into that at all. When anyone suggests a holistic, natural, crunchy therapy or activity, I lie and say that Andy Weil told me not to do that. I don't exercise; I never liked it anyway, and the knowledge that it's not lack of exercise that will kill me is very liberating! I won't go on a diet, even though I have a body mass index of 33. Eating is a great pleasure, and ditto the above! My internist tests me for good and bad cholesterol levels. I think it's rather sweet; he would like to help in any way he can, and won't give up. But, ditto the above! I don't wear a wig. Going bald is just fine with me, except when it's cold. Then I wear a hat of some sort. Once I henna patterned my head for a fancy occasion. I came out of the closet as dying last year when I gave the sermon at my synagogue's New Years service. This year I am giving a workshop on dying at our national convention. The only disadvantage of this openness is that everybody I run into asks me how I'm doing, and I don't quite dare to hand out little cards saying: "My disease is treatable, just not curable, and I'm treating it". I read the medical professional's info on the internet; the stuff for patients is often patronizing. I believe in evidence based medicine, though, and it's amazing how much bad science is out there. Not every cancer patient needs a support group consisting of other cancer patients. Sharing our experiences with each other isn't necessarily empowering, and it shouldn't distract from getting on with life. Thus, my strategy: Deal with the disease, and get on with life (and death, if appropriate). Get out there, and live a little.

What Has Helped Me
albert chu , how to tretment of mucinous cystadenoma
surgery done on 2005 OCt for Rt ovary, now recurrent, Lt side 11cm diameter,how to a better treatment? your sincerely, 14/7/06 albert: 63852913

What Has Helped Me
Crispin Morrison , Survivor
Becoming an ovarian cancer advocate and activist has helped me more than anything to cope with the emotional and physical rollercoaster of my own diagnosis. I get great satisfaction knowing that I am playing a small part in educating women about this disease. As cliché as it may sound, if I can prevent one woman from getting diagnosed with late-stage ovarian cancer, it will all have been worth it. When I was told I had ovarian cancer, my first thought was "What is ovarian cancer?" I had never heard of it. If I had been given the list of symptoms and risk factors, I might have been diagnosed in early stage. The second most important strategy I've employed is taking charge of my own treatment. After my diagnosis, I educated myself about this disease and I got 2nd, 3rd, and 10th opinions until I was satisfied that I was getting the best care possible. I took a pro-active approach to my treatment. I believe this has helped me feel empowered and in control in spite of the unpredictable nature of having ovarian cancer. I encourage anyone with this disease to get involved in a local advocacy group.

What Has Helped Me
Charlotte Hummel , Ovca Survivor
I have metastatic recurrent late stage ovarian cancer. I was diagnosed in March 1995 in stage three at the age of 48. Although I have had several surgeries and six recurrences, I have not had a bad time with ovarian cancer and have outlived my prognosis by many many wonderful years. My Way:

1. Live life like you always did (as much as Possible.)

2. Get out of relationships that are causing stress.

3. Leave the cancer in the hands of God and get on with your life.

4. Ask your church to pray for you (get on prayer list.)

5. Realize you are never alone if you know Jesus Christ (or other God depending on your religious background.)

6. Stay social

7. Laugh a lot

8. Think what you can do for others with the time alloted you instead of being self-centered.

9. Continue to work for a living even if it part-time.


What Has Helped Me
Anne M.Wanamaker , elevated CA125
My strategy is to get more information before I see the doctor...Recently I have an Ca125 elevation of 47.2...I beleive the range is 0-37....I had songrams trans-vaginal too a mamogram ...just recently...all ok...my present gyn wants me to see a gyn oncologist because of the elevation...I have had elevation to 59.2 over the years...I am 67 yr.old...I have had regular gyn checkups...everything ok,,,I did make the appt. to see the oncologist...previous gyns. have said it was nothing to worry about...the elevation was minor ...now I am concerned....can you give me some information...

What Has Helped Me
Teresa Heuschele-Gaines , Ovca Survivor
That it is not the end of world, only when you first hear the words that you have it. Laughter is the best medicine. Ask questions, plenty of them. Don't be afraid to tell people, you can't believe the support that you receive, especially from the unexpected. Wigs only slide on your bald head. Scarfs are better. You finally find out the real color of your hair.

What Has Helped Me
Christina Brown , OvCa Survivor
  1. Taking advantage of the offers of friends and relatives to help in practical ways or just "be there" at critical times. I live alone, but have never felt alone. A good personal network is critical.

  2. Support from others who have been down the same road, both in a local support group and the online list. In my opinion, this can be a true lifesaver. Whatever I am going through, there are always those who have gone ahead of me and can give true understanding and good advice.

  3. Adequate finances and medical insurance. For those who don't have either, the additional stress is absolutely harrowing. Can you imagine having to fight for your life and fight an HMO or social service system at the same time? Some are in that position.

  4. Faith in God that He will see me through. I don't know how anyone gets through ordinary life, much less illness, without faith.

  5. Doctors and chemo nurses who infuse everything they do with caring and even humor. I am in awe of several people who are very good at what they do. They humanize what would otherwise be a very impersonal process.

What Has Helped Me
Carolyn Benivegna , OvCa Survivor, President SW Florida Div, NOCC
What helped me cope with cancer? Determination!

I'm basically a no-nonsense person. I don't have much empathy for "whiners." I just feel that sometimes sh_t happens...deal with it.

When I was first diagnosed, I was angry (for about five minutes) because I had always taken care of myself and I got cancer anyway. I knew that anger and negative feelings are detrimental to good health. So, I threw away my anger and got on with living.

I've always been an activist, so I learned everything I could about diagnosis, treatment, prognosis, etc. and pursued aggressive treatment.

One thing that always helped during my treatment is that I asked for and received copies of every single surgical report, anesthesia record, treatment record, lab report, etc. and I carried them with me to each and every doctor appointment. I had a list of questions and wanted answers. I had my records in a binder, separated by divider tabs identifying the subject matter. When my doctors saw that, they took me seriously and treated me with respect. I didn't get any of the pats on the head and "Don't worry your little head about that, dear." I even "fired" one of my gynecologic oncologists at the University of Michigan and started seeing one of the other gyn oncs there because the first one (who had done my debulking surgery) just didn't TALK. I mean, he didn't say anything and would not answer my questions except with one-word answers. He was a terrific surgeon, but I needed more than that on my follow-up visits.

Of course, the other thing that helped me deal with my cancer was that my husband did everything else for our living needs. My only job was to take my treatments and get better.

As for the medical world...you've probably read that I was initially misdiagnosed with Irritable Bowel Syndrome. Not only was I misdiagnosed, I was insulted by the gastroenterologist and his nurse practitioner who both insisted I had IBS and asked me where I got my medical degree when I kept insisting, "I don't think so. Let's run some more tests." I am quite tenacious and would not take no for an answer. Thank God. If I'd listened to them, I'd already be dead.

The medical community is just missing too darn many ovarian cancers because they're not LOOKING for them. They often look for some other diagnosis when women have abdominal symptoms. I now tell women to rule out ovarian cancer first, not last if you have symptoms for more than two weeks. Don't go through months of testing for other things. Rule out the ovarian cancer. If it's not ovarian cancer, THEN go on to other testing for things like IBS.

The other thing I would like to mention is that, when I went to my Gynecologist for my post-surgical visit after a total hysterectomy many years ago, I said to him, "Well, now I don't need to worry about any of the gynecological cancers." I thought that was a true statement, and he never told me otherwise. By him withholding that information, he could have cost me my life. I did not know that I was still at risk for what is essentially ovarian cancer (Primary Peritoneal) even after my ovaries were removed. He owed that to me. He should have correct my wrong impression, and he didn't. Doctors need to be more up-front with women.

Overall, I think doctors do a great job...they are dedicated and people have no idea of the long hours they put in. We just need to upgrade their education about ovarian cancer.


What Has Helped Me
Cheryl Meehan , OvCa Survivor
I guess the things that helped me the most were:
  1. getting back to my normal routine
  2. attending a support group just for ovca
  3. having caring friends and family

I did not like people constantly asking me how I felt. If I didn't feel good, I would tell them so. If I felt fine, they would know it.

My greatest problem was the wait in my doctor's office every time I need my next chemo treatment. I usually had to wait at least 2.5 - 3 hours. A few times I had to wait 5 hours. Sometimes he was still seeing patients at 11:00 at night. He is a very caring doctor and spends all the time you need with him, but I think he could schedule his appointments better.

Some advice:

  1. Be prepared with a wig, scarfs, etc. before chemo starts
  2. Don't be afraid to ask questions
  3. Insist on getting a record of all your lab work, cat scans etc.

What Has Helped Me
Judith Krauss , Ovca Survivor
The Ovca List at http://www.acor.org is a superb group of over 1,200 Ovca survivors at various stages sharing hope, despair, knowledge, experience and strength. It has been a great source of healing for me. There are some men on the list who are caregivers, but the majority is women in their struggle or triumph with this disease.

Another source of strength for me is a face-to-face (f2f) support group. Hospitals often run them, Gilda's House, Wellness Communities or sometimes they are listed in the Community Happenings of local newspapers. I would highly recommend a support group to anyone with cancer. My group is not limited to ovca, but there are 4 of us in it.


What Has Helped Me
Sean Patrick , Ovca Survivor
Techniques to Help Relieve Stress
By adding complementary medicine techniques to chemo and radiation, studies have shown a reduction in stress and increased sense of well being among patients who practice these techniques. Meditation, yoga and visualization are all easy to do and do not require any elaborate equipment.

Yoga

What is Yoga?
Yoga is the bringing together of the physical body with the mind and the spirit. Physical postures called asanas, breathing excercises and focused concentration are joined together to energize the body and the mind.

It the oldest system of personal development in the world, encompassing body, mind and spirit. The first stones showing figures in yogic positions date back to 3000BC in the Indus Valley.

Who Can practice?
Anyone can practice. You do not need special equipment or clothes. Depending on how you are feeling Yoga can be modified to be practiced sitting in a chair or even in a hospital bed. It is important to let your teacher know your physical limitations.

What are the benefits of Yoga?

  • Improved health
  • Improved flexibility and strength
  • Lowered stress
  • Lowered blood pressure
Where can I find a class or a teacher?
  • Your healthfood store
  • Wellness publications for your area
  • Adult education programs
  • Health clubs
  • The phone book, under Yoga
Meditation

What is Meditation?
Simply put, meditation is any activity that holds the mind in the present moment.

How do You Practice?
There are many different kinds of meditation practice. The most common are:

  • Sitting quietly and focusing one's attention on the breath
  • Mindfulness- sitting quietly and observing whatever goes through your mind without getting involved
  • Naming - sitting quietly and observing whatever goes through your mind and naming anything that comes up like thinking, anger, sadness without getting attached
  • Mantra - focusing your attention while sitting quietly on a sound (mantra)
What are the benefits of Meditation?
  • Reduced anxiety
  • Improved immune function
  • Reduced stress
  • Pain management
When should I practice?
Once in the morning and then again in the evening is usually recommended. Start off slow with 10 minutes at a time, working up to 30 or 45 minutes. If you have trouble sitting still, try a walking meditation.

Where can I find a teacher?

  • Local newspapers
  • Adult education programs
  • If your community has a wellness center, check with them
  • Buddhist centers
  • Monasteries
Visualization

What is visualization?
Visualization is a flow of thoughts one can see, feel and smell in one's imagination. When starting out visualization is best done with a guide.

How do you do it?

  • With a guide
  • Audio or video tapes on Visualization
  • Making your own tape from a script that you can listen to
What are the benefits?
  • Reduces stress and anxiety
  • Reduces pain
  • Stimulates the immune system
  • Slows the heart rate
  • Helps people tolerate treatments better
How can I find someone to teach me?
  • Local wellness center
  • Look up guided imagery or visualization at the library
  • Simonton Cancer Center - training and referral - 310 459 4434
For more information try the following books:

Wherever You Go There You Are, Kabat- Zinn, Hyperion NY, NY

Guided Meditations, Explorations and Healings, Stephen Levine, Doubleday NY,NY

Minding the Body, Mending the Mind, Joan Borysenko. Bantam, Reading MA

Getting Well Again. Carl Simonton MD

The Sivananda Companion to Yoga, Lucy Lidell. Simon and Schuster NY,NY.


Exercise Can Help Too
Numerous studies on cancer patients and exercise suggest that exercise during cancer treatment boosts energy, enhances the ability to cope and improves quality of life. A growing number of doctors are encouraging their cancer patients to participate in an exercise program.

What type and how long depends on you. Swimming (if you do not have a port), biking and walking are among the most frequently recommended forms of exercise. For most people walking is ideal. You don't need any equipment except a good pair of walking shoes. You can do it anywhere, you do not need to go to a gym. And it is convenient, you can walk any time you want. If you live in a hot climate or the weather is bad, you can shift your walking to indoors at your favorite mall.

Some doctors are encouraging their patients to participate in low level weight training. It helps maintain muscle tone, strengthens joints and stimulates bone density. Regular weight bearing exercise can help protect against cachexia (muscle wasting and malnutrition) sometimes a side effect of the disease.

Yoga is another exercise that is high on many doctors' lists. In addition to offering physical strengthening, it balances mind, body and spirit. Many patients report that it helps alleviate any stress or anxiety they may be feeling.

One of the major side effects of cancer treatment is fatigue. It is a vicious cycle - the more tired you become the more you don't do anything. The more you don't do anything,the more tired you become. Believe it or not, exercise helps break this cycle and energizes you.

It has been found that people who exercise during treatment cope better emotionally and feel much better physically than those who don't. While exercise is important, it is important to set realistic goals. Start slowly and feel comfortable with what you are doing. If you are starting an exercise program for the first time - 10 minutes of walking might be all you can do. On the other hand, if you have exercised regularly, test what you can do during treatment. But don't be disappointed if you can't exercise at your prior levels.

If you miss several days because of the impact of your treatment, that's okay. How much time you do it does not matter. The fact that you do it, does.

Before starting any exercise program be sure and discuss it with your doctor.


Share Your Strategies

  
  
     
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