Borderline Ovarian Cancer. Age 20.

Melissa557
Melissa557 Member Posts: 3
edited March 2014 in Ovarian Cancer #1
I was recently diagnosed with borderline (low malignancy) ovarian cancer that was categorized a stage 2. I underwent a laporatomy about a month ago. I just recently turned 20. I simply want to contact other women around my age who have this condition to compare experiences. I was told that my condition is incredibly rare for a person of my age and good health, and I am looking to calm my nerves by possibly identifying with someone who's in my same boat. Thanks.

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    Melissa, Although I'm a bit older than you (49), I was also diagnosed with OVCA-Stage 1C, and I hope it will comfort you to know that I kept being reassured that my age was on my side in my fight, so I figure you've got about 2x the fight in you! I hope you get in touch with some other survivors-I know there are some in their early 20's on the board. Good luck!
  • Katie74
    Katie74 Member Posts: 1
    #3
    Hi,
    I just joined the website tonight. Last March 23 I was diagnosed with the same thing at age of 27. My GYN. was not sure that the tumor was precancerous until I had a laporatomy with a oopherectomy(removal of the right ovary), and a salphiloptomy(?spelling)( removal of the right fallopian tube). I was lucky not to go through chemo or radiation. I do not know your situation fully. I am kind of glad I know I am not alone in this world with that rare diagnosis. My thoughts go out to you because you are even younger than I am. It has been almost a year since my major surgery. The cancer got me mentally. I still am concerned about regrowth of the tumor. My doctor(s) after the surgery said it may come back and it probably will but not for a another 40 years or more. I am not trying to scare you. I have to have a CA-125 and pelvic exam every four months. I figure they may probably do that with you. Maybe? I had another condition that led me to the doctors' office in the first place, but if I did not have the other condition who knows what might have happened? I am grateful that I did catch some vague warning signs because I basically self -diagnosed it from the onset of the symptoms. Well, I hope you are doing better and if I can help it just might help finally put me at ease . If you have any ?'s reply back.
  • Melissa557
    Melissa557 Member Posts: 3
    #4
    Katie74 said:

    Hi,
    I just joined the website tonight. Last March 23 I was diagnosed with the same thing at age of 27. My GYN. was not sure that the tumor was precancerous until I had a laporatomy with a oopherectomy(removal of the right ovary), and a salphiloptomy(?spelling)( removal of the right fallopian tube). I was lucky not to go through chemo or radiation. I do not know your situation fully. I am kind of glad I know I am not alone in this world with that rare diagnosis. My thoughts go out to you because you are even younger than I am. It has been almost a year since my major surgery. The cancer got me mentally. I still am concerned about regrowth of the tumor. My doctor(s) after the surgery said it may come back and it probably will but not for a another 40 years or more. I am not trying to scare you. I have to have a CA-125 and pelvic exam every four months. I figure they may probably do that with you. Maybe? I had another condition that led me to the doctors' office in the first place, but if I did not have the other condition who knows what might have happened? I am grateful that I did catch some vague warning signs because I basically self -diagnosed it from the onset of the symptoms. Well, I hope you are doing better and if I can help it just might help finally put me at ease . If you have any ?'s reply back.

    Hi, Katie.
    I'm really glad you replied because it is very comforting to find someone both with my same diagnosis and around the same age as me.
    I have been looking for someone who also has had specifically a borderline, low malignant potential ovarian cancer because it is treated differently from the carcinomas and I wanted to identify with someone going through pretty much what I was.
    Our cases sound pretty similar from what you stated in your message. I had been complaining of symptoms for about 5 months; I experienced maining irregular bowel movements and a firmness in my pelvis that always felt better after I had a bowel movement. Both my mom and I thought this was due to the fact that i had just moved into an apartment at college for the first time and I was trying to get used to cooking for myself. We simply figured I wasn't eating right, so I changed my diet and even started taking fiber pills. When none of that helped very much, I called an advice nurse and she said everything sounded like Irritable Bowel Syndrome, and not to worry.
    I ended up going to the doctor in mid January because of a rash on my skin that was completely unrelated. But I mentioned my digestive problems and had them take a look anyway. After feeling my pelvis, my doctor sent me to OB/GYN and after that I was sent for an ultra sound and before I knew it i was in surgery (I had surgery in mid February).
    Everyone told me to expect a benign mass that had engulfed my left ovary. It turned out to be the borderline cancer and they removed my left ovary and tube, and scraped off growths on my right ovary, and I also had two more cancerous growths around my abdomen area.
    They said that neither chemo nor radiation would work for my borderline cancer just like yours. They also said I should get a pelvic exam and CA125 tests and ultra sounds every 6 months.

    The only difference I see from your post is that my oncologist said that the older I get, and the farther away in time I get from the diagnosis of my cancer, the less likely it is that it will come back. He said that I have a 20-30% chance in my entire lifetime of it coming back, but that if it didn't come back within, say, the next 10 years, that I statistically I could bet that it would never come back.

    My main fears, and subjects I would love to discuss with you, are about staying cancer-free long enough to have kids and keeping my one ovary. Because they said that if my cancer comes back, even if we catch it early again, that the only treatment is more surgery. Is that the case for you as well?
    And do you have kids? Do you plan on having kids? How are you dealing with this emotionally?
    Have you looked/asked about any possible treatment for your condition? What were your symptoms and what stage was your cancer?

    If you'd like, you can e-mail me as well. I would definitely like to continue talking with you. Thanks so much.
    Melissa

    fallenangel444@hotmail.com
  • sassylady
    sassylady Member Posts: 6
    #5
    Melissa557 said:

    Hi, Katie.
    I'm really glad you replied because it is very comforting to find someone both with my same diagnosis and around the same age as me.
    I have been looking for someone who also has had specifically a borderline, low malignant potential ovarian cancer because it is treated differently from the carcinomas and I wanted to identify with someone going through pretty much what I was.
    Our cases sound pretty similar from what you stated in your message. I had been complaining of symptoms for about 5 months; I experienced maining irregular bowel movements and a firmness in my pelvis that always felt better after I had a bowel movement. Both my mom and I thought this was due to the fact that i had just moved into an apartment at college for the first time and I was trying to get used to cooking for myself. We simply figured I wasn't eating right, so I changed my diet and even started taking fiber pills. When none of that helped very much, I called an advice nurse and she said everything sounded like Irritable Bowel Syndrome, and not to worry.
    I ended up going to the doctor in mid January because of a rash on my skin that was completely unrelated. But I mentioned my digestive problems and had them take a look anyway. After feeling my pelvis, my doctor sent me to OB/GYN and after that I was sent for an ultra sound and before I knew it i was in surgery (I had surgery in mid February).
    Everyone told me to expect a benign mass that had engulfed my left ovary. It turned out to be the borderline cancer and they removed my left ovary and tube, and scraped off growths on my right ovary, and I also had two more cancerous growths around my abdomen area.
    They said that neither chemo nor radiation would work for my borderline cancer just like yours. They also said I should get a pelvic exam and CA125 tests and ultra sounds every 6 months.

    The only difference I see from your post is that my oncologist said that the older I get, and the farther away in time I get from the diagnosis of my cancer, the less likely it is that it will come back. He said that I have a 20-30% chance in my entire lifetime of it coming back, but that if it didn't come back within, say, the next 10 years, that I statistically I could bet that it would never come back.

    My main fears, and subjects I would love to discuss with you, are about staying cancer-free long enough to have kids and keeping my one ovary. Because they said that if my cancer comes back, even if we catch it early again, that the only treatment is more surgery. Is that the case for you as well?
    And do you have kids? Do you plan on having kids? How are you dealing with this emotionally?
    Have you looked/asked about any possible treatment for your condition? What were your symptoms and what stage was your cancer?

    If you'd like, you can e-mail me as well. I would definitely like to continue talking with you. Thanks so much.
    Melissa

    fallenangel444@hotmail.com

    hey melissa if you need any type of friend support just email me and we can talk about it i was at the age of 25 when i was had overian cancer iam now 28 i had mostly family support and 1 friend
  • aimee74
    aimee74 Member Posts: 1
    #6
    Melissa,
    I was diagnosed with the same, stage IIIb at the age of 25 (1998). I had to have 3 surgeries before they finally staged it correctly and found out that it spread to my other ovary and some nodes on my abdomen. The only follow-up treatment was CA-125 tests and exams every 6 months then once a year after 2 yrs. I "lucked" into catching the tumor from a friend who performed an ultrasound for fun. My regular OB/GYN completely missed it for years (it was over 9cm once found - softball size). One thing I found out from the many doctors that I saw was that you need to be agressive with them. If you feel like you need any additional test make them do the tests. Additionally, post-surgery the scar tissue causes pain and some bowel trouble. Good luck to you in the future. Oh my oncologist told me that reoccurance would not occur for some time as well but that it was highly unlikely. He advised that the main concern (besides fertility) is the "cancer" traveling to the bowels and intestines in the future although this is highly unlikely.
  • francesmag
    francesmag Member Posts: 2
    #7
    I had malignant stage one tumors at age 32 and survived now for 10 years. I cannot address for you the treatment options but encourage you to keep your attitude and education honed. If you are a person with some degree of energy and sense of humour (at 20 you may well be)then you may, as I do find it interesting how many walks and drives and little red pins at the oscars and so forth people take part in for breast cancer research. I think this is great, but find it sadly amusing that the great populous does not make it a general women's health issue as far as all cancers go, but concentrate on the one that most women survive and the one that is most easily (but not always) detectable. It's like "God forbid they lose those lovely breasts, who cares about the stuff we can't see" western hollywood and/or male oriented approach to women's health. So you go girl, and take care of yourself, and know that there are many many parts that make up a woman, and that the heart is the one that makes you tick.

    Keep it going and stay strong and educated. You can get through more than you think. I wish you all the best courage, tenacity, and sense to speak your mind and wishes to your Doctors and to take an active and educated part in care. Meanwhile, don't be shy to call for help, as you wisely, already have.

    All care and love to you.
  • caroline102270
    caroline102270 Member Posts: 1
    #8
    Katie74 said:

    Hi,
    I just joined the website tonight. Last March 23 I was diagnosed with the same thing at age of 27. My GYN. was not sure that the tumor was precancerous until I had a laporatomy with a oopherectomy(removal of the right ovary), and a salphiloptomy(?spelling)( removal of the right fallopian tube). I was lucky not to go through chemo or radiation. I do not know your situation fully. I am kind of glad I know I am not alone in this world with that rare diagnosis. My thoughts go out to you because you are even younger than I am. It has been almost a year since my major surgery. The cancer got me mentally. I still am concerned about regrowth of the tumor. My doctor(s) after the surgery said it may come back and it probably will but not for a another 40 years or more. I am not trying to scare you. I have to have a CA-125 and pelvic exam every four months. I figure they may probably do that with you. Maybe? I had another condition that led me to the doctors' office in the first place, but if I did not have the other condition who knows what might have happened? I am grateful that I did catch some vague warning signs because I basically self -diagnosed it from the onset of the symptoms. Well, I hope you are doing better and if I can help it just might help finally put me at ease . If you have any ?'s reply back.

    I was diagnosed with borderline tumor stage 3b 3 years ago. I am interested to know if anyone with this diagnosis had endometriosis, or any other gyn. problem before being diagnosed with this. I was originally told that I had Ovarian Cancer, and underwent total hysterectomy after the surgery, they told me it was serous borderline tumor...my doc hasnt really answered many of my questions about the borderline diagnosis, and would like to talk to others about the info they are getting, because I am not finding much about it on the net. Please Email me..
    caroline102270@aol.com
  • Kamalii
    Kamalii Member Posts: 1
    #9
    I was diagnosed with Borderline Ovarian Cancer at 25 (my situation was very similar to katie) Anyway, I'm four years out and doing quite well. I don't have any children yet, but will have the right ovary removed as soon as I do. It felt almost more difficult to go through that having full blown cancer. I got really sick of people saying to me, "If you've got to have cancer this is the best one to have..." Anyway, hang in there. It's also good for me to hear that I'm not alone too.
  • bondalisha
    bondalisha Member Posts: 2
    #10
    Hi, I'm currently 23 and was
    Hi, I'm currently 23 and was diagnosed with the same thing as you when I had just turned 21 (Stage II-C borderline ovarian tumor). I had the left ovary and fallopian tube removed and have been doing well since. I know your post is quite old, but I was wondering how you're doing? I still worry about recurrences and potential fertility problems. Have you had any problems 9 years later?
  • whiterose
    whiterose Member Posts: 89
    #11
    Sorry
    Just noticed this was a very old post.....

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