Cheryl: Stage I Ovarian Cancer

[missa13]

*This is a story from a SHARE peer that was shared originally here: sharecancersupport.org/2008...

My name is Cheryl and I am one of the few women that are diagnosed with Stage 1 ovarian cancer. The cancer was found as a result of a follow-up CT scan I had for kidney stones. When my CT scan results came back, a cyst was noted on my left ovary, so I was referred to a gynecologist by my physician.

The gynecologist reviewed my test results, scheduled me for laparoscopic surgery and also had a CA125 test performed. After an anxious weekend of waiting for the CA125 test results, I was informed they came back negative for cancer, so there was nothing to worry about. Since cysts can just be water that come and go, a follow-up transvaginal ultrasound was scheduled a couple weeks before my surgery date to verify that wasn't the case. However, shortly before my ultrasound, I started experiencing extreme pain in my left side. The pain was so severe, I would double over.

During the actual ultrasound, the technician asked if I was experiencing any discomfort in my left side and I said yes. She said she could see something during her scan. When I met with the Gynecologist, he told me the tumor had grown in size and that full invasive surgery would now be required. If the cyst was confined to just the ovary he would only remove that, but if that wasn't the case, he would have to do a full hysterectomy. My surgery was scheduled to take one hour. However, when I woke up in the recovery room, I learned the surgery had taken 4 hours.

When the gynecologist came to see me the next morning, he told me the tumor he removed was malignant and that I had ovarian cancer. I cried in his arms in disbelief and asked how that could be when the CA125 test results had been negative. I was 45 years old, had no history of ovarian cancer in my family and didn't even know the symptoms of ovarian cancer.

The gynecologist told me my treatment options were to go to a local oncologist who would schedule my treatment plan, or I could go out of town to a gynecologist/oncologist who specialized in just ovarian cancer. Since I had been diagnosed with a rarer form of ovarian cancer, I opted for the gynecologist/oncologist.

As part of my visit with the gynecologist/oncologist to learn about my cancer treatment, she asked to do a physical exam that included a rectal exam. After her exam, she informed me I had a mass on my rectum that would need to be removed before I could start any chemo treatments to fight the ovarian cancer. I was devastated. One month after my hysterectomy and ovarian cancer diagnosis, I was undergoing a second, more major surgery, to remove the rectum cancer. When the pathologist's report came back, the diagnosis was that I had a second, completely different cancer and my rectum cancer was not related to the ovarian cancer.

Two weeks after my rectum surgery, I started chemo treatments. The chemo treatments were extremely difficult on me. I had undergone two major surgeries in less than one month's time, so my body had very little time to recover. Chemo made some foods taste metallic. I was extremely sensitive to smells. The smell of hand soap and laundry detergents would make me nauseous in an instant, so I had to go to the grocery store to find products with scents that didn't upset me. In spite of various combinations and doses of medicine to prevent it, every chemo treatment made me sick for five days. I could barely maneuver between my bed, the bathroom and the couch. With each successive treatment, my white blood count took a severe nose dive. As a result, my planned three-week chemo regimen had to be stretched out to four or five weeks between treatments. After the third chemo treatment, my white blood count dropped so low I couldn't fight infections. I was hospitalized and placed in isolation for four days. I battled depression for several months and required medication to help control it. I was completely exhausted and found it impossible to even read the daily newspaper. I would read the same paragraph over and over several times, not comprehend it and then fall asleep.

In spite of all the challenges I went through battling both cancers, there are several items that stand out from my journey.

The medical staff that cared for me throughout all my surgeries and treatments were outstanding, compassionate and caring individuals. I credit the gynecologist/oncologist with saving my life by finding the rectum cancer and addressing it before starting my ovarian cancer treatments. I appreciated the loving care the nurses in particular provided me after both of my surgeries. One nurse on rounds held me in her arms at 3 a.m. while I wept dealing with the fact I had been diagnosed with ovarian cancer.

I'm single, live alone and was very independent. However, after two surgeries, I wasn't able to do anything for myself. I couldn't cook, clean, or drive. My family lived in another state and due to health issues they were unable to come and help care for me. I had to learn to rely on friends from work and my neighbors to help me care for my incisions, get to doctor's appointments, chemo treatments, buy groceries, do my laundry and cook for me.

The one challenge I was unable to resolve during my treatment and recuperation period was finding another ovarian cancer survivor with whom I desperately wanted to talk. I asked all the doctors I was involved with, but none were aware of any ovarian cancer groups or organizations to refer me to. Even if there had been a survivor group, it would have been very difficult to get to a meeting and participate, because I couldn't go anywhere on my own.

In 2006, I decided to call the American Cancer Society about volunteer opportunities for ovarian cancer and was directed to SHARE's Ovarian Cancer Helpline. As a SHARE volunteer, I am now able to fill a void for other ovarian cancer survivors that I was unable to fill for myself. If a person is having a difficult time with chemo, like I did, they can pick up the phone and talk to someone that has been there without ever leaving home. I frequently speak with women that had a bad day in general, or their latest treatment was tougher than normal, or their friends/family can't accept the fact they have ovarian cancer or are nearing the end of their life. They just need someone to talk with that has been in their shoes. I've had callers panicking because they believed being diagnosed at stage 3 was an automatic death sentence. Since a majority of SHARE's volunteers are stage 3 survivors, I can offer to arrange an opportunity for the caller to talk with another stage 3 volunteer survivor.

Whenever I talk to someone about SHARE's ovarian cancer hotline, I say it is the most rewarding activity an ovarian cancer survivor can do. I have the honor of being an Ovarian Cancer Helpline volunteer, but the callers are the ones who inspire me. I personally believe I receive a lot more from the women I speak with than I give because I am amazed at their stories, their challenges and their courage. They continue to reinforce that this is the greatest volunteer job available.

If you are an ovarian cancer survivor, I hope my story will encourage you to consider becoming a hotline volunteer and helping to give others hope. Thank you for reading my story.

[Microbabe]

What an inspirational story ... I totally believe in the sentiment when you read stories of the many women that have to fight for tests and treatment .... raising ovarian cancer awareness is clearly a requirement ... I would never have found the support of these pages without Clare who guided me .... sometimes all you want is someone to listen who understands 😃

[rppizio]

Wow, thank you for this story... Sounds like so many of us walk the same path of trying to find sister soulmates of sorts as well as honest answers. I am happy the ACS was able to help you connect... When I called this summer the guy on the other end must have never even heard of ovarian cancer because he didn't know where to look for information and asked if he could have someone else call me back after they did some research. That was the light-bulb moment for me. It was the next day before I heard back and was given 2 online resources to pursue. Locally the 2 cancer support group leaders had not had anyone with Ovarian Cancer experience, so I was told I would need to look in the larger cities north of me. Talk about feeling isolated, those where the moments when I knew more awareness was needed even if it was just for my family and friends. As soon as I had been diagnosed I started a blog to document the journey like so many other ladies have done for awareness of this disease. My focus while telling my story is to tell the good and not so good but at the end of each post try to give some helpful take-a-ways that may make someone else's journey a bit less scary.

Cheryl I hope one day soon I will feel that I can commit to being a volunteer to help others but for now I have to hope my blog is doing enough to help others and it is a good way for me to share my experiences and frustrations of this obstacle course they call Ovarian Cancer.

[Mandie707]

What number would my mother call to speak with someone regarding her radiation treatments and eating struggles?

[missa13 in reply to Mandie707]

Mandie707 , your mom can call SHARE's toll-free ovarian helpline number at 866-53-SHARE (866-537-4273) to speak to a survivor of ovarian cancer. She can get matched to a peer who has gone through similar circumstances. You're sweet to post to help her! Best of luck.

[Mandie707 in reply to missa13]

I really appreciate your assistance.

[bigvbigv]

I am also STAGE 1A OVARIAN CANCER SURVIVOR and also STAGE 1 breast cancer SURVIVOR 8 YEARS

[Candybonnylass]

Ty for your inspirational story of how you battled your cancer

I was diagnosed 4 years ago with stage 1a ovarian cancer only buy chance

I could not stop weeing and was sent for tests they said there was a shadow and I was sent to have a camera to check my bladder they thought I had cancer it came back it was all clear for cancer but it look like my bladder was not stretching enough that was that a couple of weeks later I was doubled with pain and admitted into hospital they done a scan and the doctor came in and spoke with me and said we have discovered you have a large mass in you stomach that we have to investigate I told them that I had been going to the gp for the last 18 months complaining about the feeling I was carrying a baby about as it was the only way I could describe it to c t it short I was told they had to remove it had a full hysterectomy got everything taken away was in hospital for 2 days sent home got a result 1qeek later telling me it was ovarian cancer but no treatment was required as I had it all cut away fine I was really pleased district nurse came in 10 days later removed the stitches and that was that 2days later I woke and my bed was wet I got up and there was a mixture of blood and a brownish stuff it had been leaking out of my wound which had opened slightly phone the doctor and he said he would send the nurse back she came back put a dressing on

Iand said she would come back the next day when she did it has opened up a bit more and more puss was coming out the only way was to put a stoma bag on to collect the puss I had to empty and measure what came out everyday this went on for 18 weeks it was a bug staffaccoccial

not sure of spelling it was horrible smelly and I was completely drained but never seen a doctor only a nurse eventually it stopped and closed over fine had op in Jan this was Aug now in Oct I did not feel well and when my 10 year old grandson came home from school he phone his mum and told her

She came down as soon as she saw me phoned an ambulance was very sick when I arrived at hospital got taken to a room next thing there were doctors nurses etc all around I was put into an induced coma I was bring up the contents of my bowling had toxic poison and was in a toxic shock for 10 days I battled for life

I survived which I was eternally grateful for but it took a lot out of me 3years later I was taken into hospital not feeling very well pain in my stomach Got the usual bloods done and waited a doctor came in and asked me if I had noticed passing any blood I told him no he was admitting me into hospital because I had lost half of my bodies blood I had to have 4 pints of blood immediately had this and was told they suspected bowel cancer I cried myself to sleep that night I was so upset why me again anyhow I was in hospital for 1week then the coronavirus came I got sent home and was told it was safer I would come back as an in patient to get the colonoscopy and endoscope done 10 weeks I am still waiting all test were cancelled I phone every week to see if they are doing them again but as yet nothing I feel I am left in limbo don’t know if I have cancer again or not I’m so worried I am not sleeping well my bloods get done every 2/3 weeks they are still dropping have went from 13.5 down to 9.9 I sometimes feel the doctors don’t care I have not really got the support I need everywhere is in closure I know the coronavirus is terrible and I am so sorry that all the people have died and suffered a terrible thing I know that I will have to be patient and wait till this is over I’m so grateful I have spent my life knowing the lord our saviour for he has giving me the will to keep going and I know he is on my side fighting all the way amen

I am so sorry that I have taking all this down but just if one person reads this it would make me feel better as I have no one to talk to about this I’m 62 now so I have had a good life and will take whatever comes my way now and deal with it

I live on Scotland we don’t have great support here sorry I am just having a bad day x