New to this...survior of Small Cell Ovarian Cancer

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New to this...survior of Small Cell Ovarian Cancer

by pistolpete99 on Tue May 20, 2014 07:58 PM

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I need to find survivors like me I have been in a funk and feel this is all too good to be true. 

First here is my story...can anyone relate??

I am a 25 year old from a small town in Pennsylvania I have a wonderful job and a great boyfriend. I own my own home and enjoy life!! I have 2 dogs (one is a survivor of Parvo with a 10% chance of living) needless to say he made it. Jacob and I were planning a pregnancy in the fall so that this summer I would be able to be off with my mom (a school teacher) so she could teach me the tools of the trade of motherhood. I had and IUD in place that was removed mid July of last year. The doctors informed me that I would start a period normally within the first month to three months after removal. I noticed a swelling of abnormal symptoms within the first few weeks of removal but no period. I was elated because I had every symptom of pregnancy and no period. I had gain about 50 lbs that year and thought it was the delish food I ate all the time. I also had a constant urge to pee and it worsened after the removal of the IUD. I had emotional roller coasters, terrible heartburn, and bloating (again I thought it was the food). But what I noticed that was different after the IUD was removed was the little bit of pain I felt during intercourse and bowel movements. I called my gyno Dr Fackler who pushed me off for about 3 weeks saying my bloating was due to no period for 5 years. The final time I called he prescribed me medicine to jump start my period. After 3 days of symptoms worsening I called again. This time I spoke with the PA. She told me I should be seen at the ER. I called my mom and we headed that way. Once I was all settled in at UPMC Northwest ER I described all of this to the doctor that was on the evening. She said it sounds like a pregnancy and we did a urine test. It came back negative, a doctor came in to check out my stomach and I showed her where I felt bloated, she thought gull stones or kidney stones or a tubal pregnancy that flew under the radar. To be safe she did a CT Scan.

There was a mass the size of Texas on my left ovary. The radiologist knew immediately without any further testing that this was definitely ovarian cancer. Our hospital is not used to this sort of this so I was sent to Pittsburgh immediately to meet the brilliant man who saved my life Dr. John Comerci. I met him that night at Magees Women's health assuming I would be entering an emergency surgery to remove the mass...He said we have to be sure what we're dealing with first before we cut you open. But he reassured me I was in the best care, after a biopsy I went home to wait...and wait...and wait!! The results were showing some weird cancers so Dr.Comerc i decided a laproscopic surgery would be preformed with a gastro oncologist just to be safe...The possibility of a Full Hysterectomy being 85% and a chemo wash. 

I was in surgery for 9 hours a mass that weighed 32 lbs was removed along with appendix and gallbladder because small little tumors latched on to the outsides and a some on the fatty tissue in belly area. I had those all removed and the fatty tissue scraped off. 

I spent one night in the icu and was returned home 7 days later. The diagnosis was hard...I was diagnosed with stage 3 small cell ovarian cancer. A rare and aggressive cancer with a terrible outcome. Also a girl 3 months prior to me whom was 1 grade below me in high school was diagnosed with the same cancer. We lived 15 minutes from eachother and went to the same school. She passed this winter in the same hospital I was treated at. Scary scary scary. I did 6 cycles of 6 different chemo every 21 to 28 days depending on blood work. It was a list of chemo where I only remember a few. Cysplaton being one adriamiacin, vinblastine, bleomiasin (ran 24 hours) and I can't remember the others for the life of me. I finished 6 cycles by Feb 29th of 2013. I was placed in REMISSION on March 25th...I started working on March 17th and am currently in remission with a ct scan at the end of june. My ca125 when I was diagnosed was 500 it is currently at 4.4. I am a survivor and looking for more!!! Please help me with some confidence I am feeling down lately...and scared. 

RE: New to this...survior of Small Cell Ovarian Cancer

by kg1234 on Wed May 21, 2014 02:02 AM

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Hi pistolpete99, I am happy to tell you that there are others like you who have survivied SCCO - and I understand how lucky you must feel. My daughter is now over 3.5 years free of SCCO. I am astounded that not only you had SCCO, but that you live so close to someone else with the same diagnosis. I hope she also did well. I'm sure you know how rare this disease is - maybe 500 known cases worldwide - ever.  Are you on the SCCO listserv? If not, go to yahoo groups and look up "small cell ovarian cancer." You'll find lots of inspiration there, but also information about some rather amazing studies that you may want to get involved in as well as research results that have come to light in the past couple of months. There is real hope that they will someday in the not too distant future, find some answers. 

So glad you are doing so well. Hugs and continued good news to you.

RE: New to this...survior of Small Cell Ovarian Cancer

by kg1234 on Wed May 21, 2014 02:08 AM

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I thought I should add a PS to my previous post as I don't want to mis"speak" about the recent research - while they have found the gene mutation responsible for SCCOHT, no one is saying exactly when that will lead to specific treatment guidelines - but the finding was quite striking, and considering how rare the disease, we are fortunate that many are working on answers.

RE: New to this...survior of Small Cell Ovarian Cancer

by pistolpete99 on Wed May 21, 2014 02:22 AM

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I am so glad that I have contacted someone I feel as if I should be in some text book somewhere all the doctors that come in contact with me look at me as if I'm a myth...and they make it known to me how much of a struggle this disease is...I am doing fine and I have a better quality of life then I did before and lots of growing up to do for a 25 year old...makes you think of mortality. I never knew if that was normal but I know what I have is not the best cancer to have but I am surviving and I want to meet more to show the world that science is amazing and my doctors have my best interest at hand. I am so proud of myself and all the survivors!!

Unfortunately the young woman Amanda I knew passed this January...it was a sad story all around and I feel terrible for her...but she wasn't pro active in her health care and we have to be with this cancer. 

I read the article from Gentec the week before I was placed in remission. I am so glad that your daughter is doing well. 

How old...what stage...any children?? 

I am struggling with adoption agencies saying that a cancer patient is not a good candidate for children...I so desperately need some normalcy in my life and I feel I am strong enough to beat this terrible thing and I am strong enough to love a child...very frustrated. It makes me feel as though I am not adequate to care for a child and that people look at me as a ticking time bomb...I cry all the time (hormones) I am so happy you responded I will rest easier tonight

RE: New to this...survior of Small Cell Ovarian Cancer

by cyborg on Wed Jun 04, 2014 08:03 PM

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I was diagnosed with small cell ovarian cancer earlier this year after being admitted to hospital for hypercalcaemia, luckily my tumour was fully removed straight away(think it was 16cm in diameter). I only have one more chemotherapy session left but in my last CT scan I few weeks ago there was no sign of it coming back so hopefully I will be fine after chemo is finished :) 

I'm 18 and from England. I first started getting symptoms in December. I told my GP about it after a month of ongoing symptoms and his first thought was that I was pregnant. I'm glad I got a blood test though otherwise I wouldn't have beein diagnosed and I don't know what would've happened.

A lot of people have been quite negative on the prognosis so I'm glad to see that there are survivors. At first no one really knew how to treat me but I got put on 6 cyclesover 18 weeks. I get etopiside and cysplatin. (Sorry if this doesn't fill you with confidence as I actually haven't finished chemo yet)

RE: New to this...survior of Small Cell Ovarian Cancer

by pistolpete99 on Wed Jun 04, 2014 08:10 PM

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I love to hear from survivors...that's why I joined because of all the negativity. I have enough of it in life and I simply have to be positive about this...It's my survival technique. They are learning more and more about this disease everyday and I believe I will live a healthy life with just a few bumps in the road. They removed all of my cancer too that's the key...debunking and then treatment. 18 is so young...but it doesn't discriminate. I am glad you responded it helps feel free to message me any time with questions I have been done with chemo since February 29th

RE: New to this...survior of Small Cell Ovarian Cancer

by kg1234 on Sat Jun 21, 2014 11:22 AM

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Hi PistolPete99. I am sorry I didn't respond - I'm finding it very hard to know when messages come in! If you're not already there, I highly suggest to you too that you join the yahoo groups smallcellovca group to learn about other people's experiences and meet other survivors. It's a very supportive group. I hope you are finished with your chemo now, doing well - and mainly cancer free! Hugs and health to you.

RE: New to this...survior of Small Cell Ovarian Cancer

by Prior on Thu Jan 29, 2015 06:47 PM

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Hello, I am a 30 year old from Canada. I was diagnosed with small cell ovarian cancer and categorized as stage 3. I begin 6 cycles of chemo next week, cysplastin and etopiside. I am wondering what treatments have been offered to survivors out there as my oncologist has never had a case like mine before and there is very little information in terms of treatment across my country. Some hope and inspiration would sure go along way right now !!

RE: New to this...survior of Small Cell Ovarian Cancer

by Tonyuk on Fri Sep 04, 2015 08:55 PM

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Finally...some good news regarding this type of cancer...

i am sorry to throw some bad into this good but i just want to share it.... I live in the UK and in July 2015 my Daughter was complaining of a pain in her lower stomach...i took her to get it checked out and was told it was a pulled muscle... (why wouldn't you believe them, there the experts!!).. a week later she was still complaining of the pain, so again, back to the hospital, i told them to have a better look, so they took her for a scan and they said they found a lump like cyst, she had to have a 5 hour operation to remove it, after 9 days waiting, the result came back... it was SMALL CELL CARCINOMA OF THE OVARY  the doctor called it, he said it was rare and very aggressive...

My Daughter was just 11 years old at the time it was diagnosed... i mean, what 11 year old gets cancer (but it really opened my eyes when she was transferred to the Oncology ward and seeing other kids with Cancer)

the Chemo started more or less straight away...luckily she was able to come home for her 12th birthday in August 2014... she had 4 rounds of chemo, when things took a turn for the worst when the cancer really took a grip...my Daughter passed away in November 2014, just 4 months after being diagnosed with it... devastated is not the word, you never think it could happen to you or someone close to you,

so reading stories from people who have survived this is fantastic and it goes to show this thing can be beaten..so everyone keep your heads up, look cancer in eye and stick 2 fingers up at it....

RE: New to this...survior of Small Cell Ovarian Cancer

by Tonyuk on Fri Sep 04, 2015 08:56 PM

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sorry..that was meant to say in July 2014..not 2015

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