Borderline Ovarian Cancer?

• By Mle42305
• Posted November 14, 2009 at 2:16 am
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I was diagnosed recently at the age of 22 with ovca....borderline tumors. Had surgery July 09. Sonogram showed mass on left ovary(which turned out to be the size of a grapefruit)...at time of surgery Gyn said right ovary was covered in cancer cells...Which means they had to take both ovaries(left my uterus tho), my parents and bf were and are very supportive and helped me through this alot. I was upset, nervous and scared when i woke up to find out that I cant have children...:( wasn't really expecting it, since they didnt see anything on the ct scan, internal sono...Nothing.....Even tho it has only been a couple months, its very hard to cope with the fact that i cant have children....But I will be looking into adoption or egg donor----Dr. said I would still be able to carry and deliver since I still have my uterus...Anyone every experience that before?....

Good luck to everyone!

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• By genica45
• Posted November 13, 2009 at 10:59 pm
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I had a borderline ovarian mass taken out of my body in May. I asked the oncologist point blank if I had cancer. He said, "Well...you do...and you don't. If you are filling out forms and that question comes up, put a question mark beside it." Yes, I thought the same thing. "What?"

I had most of those symptoms associated with ovarian cancer like the abdominal girth - I looked 5 months pregnant -, gas (lots of it), constipation and a few other things that were mentioned on this site like pain in my right hip. I exercise a lot and was embarassed to say the least about my belly. I think deep down I knew something was wrong but decided to explain the gain, pain, and gas away as "age" and the roundness as "Hispanic heritage". How's that for an excuse not to see a doctor? "I don't have a disease. I'm Hispanic."

With this borderline diagnosis, I feel like I'm standing on the edge of a cliff and could be pushed off anytime. I might not be but I'm still standing on the edge.

In the meantime though, I do feel grateful for what I have. I love my family and tell them everyday. I'm trying to do what I can to make other people's lives better. There was nothing worse than laying in that hospital bed thinking that all this time I never really helped other humans in a significant way. I do what I can to bring more attention to ovarian cancer. I work as a photographer at a newspaper so I try to get what info I can in the newspaper to bring attention to it.

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• By Kat56
• Posted November 13, 2009 at 8:21 pm
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I have borderline OC for over 25 years and am still dealing with it - I live with an inoperable tumor, colostomy and constant pain.

Don't ever let your guard down - there are no guarantees so make sure you listen to your body and GET YOUR CHECK UPS!!!!

Best of luck to you all ~

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• By BJJ
• Posted November 13, 2009 at 6:47 pm
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I'm also a survivor who was diagnosed very early and not require chemo. I'm not sure if I belong either - maybe survivor's guilt? But, I have no doubt after reading all of these posts, that we DO belong. We have all experienced the same fears and we also live with "waiting for the other shoe to drop" thoughts. Thanks to our sisters who have had to undergo chemo and still welcome us with love and not resentment. Thank you all for sharing your stories.

Hugs and health,
BJ

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• By curiouscat
• Posted November 13, 2009 at 7:38 am
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Val -- There's a great write-up on the Johns Hopkins site. Most of the statistics are very encouraging. Years ago they used to give chemo for borderlines, but now, except for an MPST, they know it's not needed.

I was stage 1C. Had a complete hysterectomy, including ovaries, etc. But I'm 55 so I'm not concerned about having children.

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• By val_1
• Posted November 12, 2009 at 10:42 pm
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I was diagnosed with borderline ovarian cancer last year. I had just turned 27. My gynocologist found a 12 cm tumor on my left ovary and thought that it was benign. During surgery, she took out the tumor and my left ovary. Turned out that I also had a tumor on my right ovary that was described as a cauliflower growth. Both tumors ended up being serous borderline, but thank God the gyno didn't do a complete hysterectomy during that surgery.

However, when I recovered she said that I should have one ASAP. My appt. was scheduled and everything, but then I decided to get a 2nd opinion. I went to a gynocologist oncologist this time and he gave me a another option. He wanted to do surgery again and get proper staging. So, in Feb. 2009 I did that. I was diagnosed with stage IIIa.

Now, I'm in the same boat as most of you are. I have to get check ups along with a pelvic ultrasound and CA 125 every 4 months. Thank God my first 2 exams have been clear.

This experience has been one of the hardest things I've ever had to go through. At the same time, I feel like I have a better appreciation of life. When all this happened I was a newlywed of 3 months. (Talk about for better or worse! We were put to the test right away) But now I don't take anything for granted. It has taught me that everything can change in an instant, and to appreciate the priceless things in life.

Has anyone found any research for the cause of borderline tumors?

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• By Rikku
• Posted September 26, 2009 at 2:01 pm
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I was diagnosed with borderlinde mucinous stage Ia at age 25. My doc didnt give me any deadlines for having children and he basically said I was cured, and that's about it. But I do have to go to follow up every 6 months. They removed my ovary and my tube along with the appendix. They also did several biopsies. All came clear.
It was found out because my Ca 125 was 50.
My story is very similar to cheesomlette and sparkles.
I had a really hard time for the first 3 months, had a lot of troubles with my BF, was scared to death, felt different and ill, thought I could never had children and would enter menopause anytime soon.
Things do get better, I'm still not 100% back on my feet, but getting there.
Just make sure you have a nice understanding doctor and that you do appropriate follow up.

I found this site the most informative:
http://ovariancancer.jhmi.edu/apmt.cfm

its from john hopkins, they are specialists in borderline.
As you can see they also say: APMTs are benign, with survival rates of 98-99% based on literature reviews (...)
When these tumors and a small group of deceptively bland metastatic mucinous carcinomas that have been misclassified as primary ovarian tumors are removed from the mucinous borderline category, no advanced-stage mucinous borderline tumors remain. Hence, all properly classified mucinous borderline tumors are benign. Some investigators have recommended that these tumors be designated "atypical proliferative mucinous tumors"

Hope this helps
Good luck

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• By kw344
• Posted September 26, 2009 at 1:16 pm
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Hello,

Back in 1990 I was pregnant with my first daughter. The doctor thought I measured bigger then I should be at that state of my pregnancy and wanted me to have an ultra sound. When I was there at the ultra sound the tech kept asking me if I was having pain. I should have caught on then but didn't.

My doc said that I had a 9mm cyst on my ovary and she did not like the way it looked in the ultra sound and that it had to come out. So we scheduled the surgery for when I was 17 weeks pregnant and the baby would have her own circulatory system, but that she could not say that I would not miscarry.

I had my surgery and I know I had contractions that night, but the baby appeared fine. The Cyst came back as borderline. I don't have more details on the cyst then that. My doc said that she had conferred with an oncologist and that I was to continue with the pregnancy and then 6 weeks after delivery go see the oncologist and he would remove the rest of the ovary and do staging.

This I did and the staging came back fine. It was then suggested that I have the kids I want and then have a hysterectomy when I was done having children. In the mean time I went for ultra sounds every 6 months to keep an eye on my other ovary.

I went on to have 2 more children. My youngest is now 12. Although after my last child was born my doc said that the opinions of the docs had changed and they thought it was best to maybe wait until I got closer to menopause for the hysterectomy.

Well that time came 2 weeks ago when I had a LAVH and that ovary was removed. I am so happy this is out of me and I don't have to worry anymore.

A couple of strange things about my oldest. She is one the toughest kids I have ever known and her hair is different then my other 2 kids. She has almost crimped hair and she was been asked about her heritage. I really think the antastesia had something to do with this.

Just thought I would share my story incase it could help anyone else out there.

Good Luck to you all!

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• By bethanypaige
• Posted June 17, 2009 at 6:25 pm
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It makes me feel so much better that I'm not the only one in the whole world going through all of this. 2 years ago, about a week before I turned 19 I was rushed to the ER because I was in such pain, I couldn't stand up and I'm no wuss! I ran track at my college and was on the dance team and so whenever I had pains in my side I thought that it was just from being tired. Turns out I had a tumor growing inside me that was the size of a grapefruit, had gotten so big that it had twisted and cut off my blood supply and so my right ovary and tube died inside of me. After surgery, I woke up and the doctor told me I had a borderline tumor and what had happened, and that he had taken out the right ovary and tube and had peeled the outside of the left ovary, where a mass was beginning. So....after a year of doctor visits and ultrasounds and testing I find out 2 weeks ago that I have a tumor growing on my left ovary and it looks like the borderline again. Next week I'll be in surgery, the plan is to peel the outside skin off again and hopefully preserve everything, but in 2 or 3 months it's highly suggested that my husband and I try to have a child. So that's what we're praying for to happen. I know what everyone is going through is so hard and it feels like you are so alone and no one knows what your going through but I promise you're not

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• By Sandiestar
• Posted June 2, 2009 at 9:22 am
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i too have bee dx with stage 3A borderline cancer in November 08... I had my right ovary and tube removed, debulking on my left ovary and my omentum removed too... i only had surgery, no chemo.

at my first scans 6 months post op I have reoccurance on the left ovary.... I will now be having this removed also and have no option for conserving eggs... so much drama developing from one bad thing... but life goes on!

i now have to deal with early menopause and hrt as well! luckily I have all of you lovelies to talk to about it! ;)

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• By Sparkles84
• Posted April 11, 2009 at 12:16 pm
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Hey cheeseomlette,
I am sorry to hear that your boyfriend and you broke up. I would have been upset too. I think is important for the people in your life to come to any appointment with you. I think that provides them with a better understanding of how you feel and the stress this puts on you.
I have been lucky to have a wonderful doctor. She tends to do more test then some of the doctors would, but she says she would rather be on the safe side to make sure she is observing every angle. My first visit she did a chest xray, blood draws, cat scan and an ultrasound, just to make sure she had caught an abnormality. She also did another biopsy to see the slides for her self and then had the clinic do it again to, to make sure they all came to the same diagnosis.
I hope you find luck in getting another opinion. If you ever need someone to talk to, I am always here. It is nice to find support with others. Good luck!

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• By birdee_rn
• Posted April 11, 2009 at 8:24 am
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I was diagnosed with Borderline Ovarian Cancer stage IIIC in Dec. 2007. I had a TAH-BSO with omentectomy and lymph node removal (not all) in the para-aortic region and pelvis. The tumors were about 9cm each and had infiltrated into the fallopian tubes and one had grown into my pelvic wall. I had some implantations on the diaphragm as well. I had moderate ascites (I just thought I was fat). I didn't need chemo, my gyn-oncologist said just more surgery if it recurs. Somedays I worry that it will come back, but mostly I am so happy that I didn't have it worse. I have graduated from every 3 mo checkups to 6mo. My CT's have been clear and my CA-125 has been normal.
I too sometimes feel that because I didn't need chemotherapy, that I'm not a "real" cancer survivor, but I am. I have talked to many people that haven't needed chemo, it just depends on your cancer, the staging and the need for chemo. My cancer doesn't always need chemo, because according to research the prognosis is the same no matter if you have chemo or not. Borderline tumors tend not to reach stage IIII.
According to the ACS~Tumors of low malignant potential: When looked at under the microscope, some ovarian epithelial tumors do not clearly appear to be cancerous. These are called tumors of low malignant potential (LMP tumors). They are also known as borderline epithelial ovarian cancer. These differ from typical ovarian cancers in that they do not grow into the supporting tissue of the ovary (called the ovarian stroma). Likewise, if they spread outside the ovary, for example, into the abdominal cavity, they do not usually grow into the lining of the abdomen.

These cancers tend to affect women at a younger age than the typical ovarian cancers. LMP tumors grow slowly and are less life-threatening than most ovarian cancers. Although they can be fatal, this is not common. ~

So-I read this every now and then to reassure myself.

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• By cheeseomlette
• Posted April 10, 2009 at 11:08 am
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Hi Sparkles,

Glad to know that I'm not alone! You said that your doctor was in shock - I will never forget the look on my doctor's face when he saw me, he looked so worried. It sounds like it's been very tough for you, not to have the support from your family. I was lucky enough to have my parents' support, without them I don't know what I would have done, though it did hurt to see the worry in their eyes before my operations. Being around my friends helped a lot, because since they were somewhat detached, they helped me keep my mind off of things.

I had an argument with my boyfriend (who is now actually my ex, we broke up since I last wrote here) a few months ago, because he had said that he was going to come with me for a checkup, and then cancelled at the last minute. When I explained why I was upset, he said that he had not realised how serious it was, because I was so mixed in my responses whenever the topic came up - sometimes I'd brush it off, other times I'd seem upset. I guess I was afraid to tell him the whole story, because I was scared he'd freak out, or that I'd sound like I was exaggerating.

I think I will try and get a second opinion, because I am afraid that I am not being advised well - a doctor only casually advised me to go on the pill. I am going to a new doctor next week, so I will gadge their reaction when I tell them, and then maybe try and seek a more specialised professional if I don't think they're taking me seriously enough. Nobody has given me a time-scale for a hysterectomy though - neither my doctor in Germany, where I had the operation, or in London, where I get my follow-ups. As far as I know, my German doctor told me that I could have a hysterectomy when I am done having children, and that as long as I went for regular checkups I'd be okay.

I am on Yasmin at the moment, and like how it is with my body - not too many changes. I'm not sure if Seasonale is available in the UK, but I will look into it.

Hope you are doing better!

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• By Sparkles84
• Posted April 7, 2009 at 11:51 pm
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cheeseomlette, I feel you 100%. I was diagnosed with borderline ovarian cancer almost 2 years ago, I was 22. My doctor was in shock and it was found by a fluke. I was complaining about my birth control and they decided to do an ultrasound to be on the safe side. My mother says to all her friends that I don't have cancer, that I either said it to get attention or that the doctors we wrong. I went through horrible depression, I was confused and my family pushed me away and asked me not to talk about it..
I feel now I am in the hardest state of my life. I hate dealing with those you encounter that say you are lying because you didn't have chemo and the stress of having a child on a time line. Currently, I am in a very committed relationship and I am ready, but my partner is not so that adds to the stress.
I would strongly advise you to find a new doctor, I go to the doctor every 3 months and my doctor says I will continue that pattern until after I have surgery.

My doctor put me on a pill right away, she said it was very important to reduce the risk of reoccurance. She put on seasonale because she wanted me to have as few cycles as possible. I am hoping this helps you, because it helps me to know that I am not the online person stressed with this fertility issue and kids.

Does anyone know how long a doctor will give you after having one ovary removed to having a complete hystorectomy? Sorry if my spelling bad today, I just got finished with a test at school and I am afraid that I left my brain there.

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• By cheeseomlette
• Posted March 30, 2009 at 8:44 am
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Hi,

I was also diagnosed with a borderline ovarian tumor, 2 years ago, when I was 20. I had my right ovary removed, along with my appendix, omentum and lots of biopsies that thankfully showed that it had not spread. Like Tammy and Suze's, it was huge - I had no symptoms, I thought I was fat - I only went to the doctor after my hairdresser thought that I was pregnant and I was mortified and thought that my body could not be normal.

When I was diagnosed, there was no describing the fear I felt - was it malignant? Had it spread? After the operation, it took me months to get over the anxiety and deal with having to go through something so scary so young. But I know how lucky I am, I didn't have to have chemo. I, too, am wary of saying that I am a cancer survivor - it just doesn't seem right, when people think about cancer, they think about chemotherapy or radiation therapy. But I guess this borderline diagnosis does cause a lot more worry than if the doctors had just told us it was simply benign.

I have managed to come to terms with it all a lot better now, though I have had a couple of nights of sobbing and one counselling session that I abandoned after he started suggesting that parent issues were underlying my anxiety. I think he missed a point there.

It has changed my view of life in so many ways. I make sure I exercise regularly now, because one thing that keeps me sane is keeping my stomach flat, I don't ever want to have something growing in there and me thinking it's just fat, ever again! I have taken up running and may even run a marathon and raise money for ovarian cancer, though that would be along way off!

I go for scans every 6 months, and the reason why I stumbled across this forum today was because I called up my hospital to make an appointment for a scan - they hadn't automatically sent me one like they usually do. They said that my doctor had discharged me. Isn't this a little early? It's been 2 years, yes, but since it was borderline, and I still have one ovary, shouldn't I be going for follow-ups for the rest of my life? Maybe not as frequently as every 6 months but surely every year? To be honest, while I don't want to waste the resources of the health service, these scans give me peace of mind and keep that anxiety at bay.

Another question I have for people who still have ovaries, is, if you are not planning on having children anytime soon (I would like children in a few years, but I'm too young now), did your doctor recommend the pill? I am currently on the combined pill, and since I heard that can prevent ovarian cancer and cysts since it stops ovulation, it also gives me peace of mind. Nobody has officially put me on it for that reason though, I guess because there is no guaranteed medical evidence for it. Recently, a nurse tried to convince me to stop taking the pill because of the risk of developing a blood clot (I suffer from headaches quite regularly so this increases the chances), but I believe that staying on the pill is more important. Also, I have a boyfriend and really don't want to get pregnant just yet (which may sound quite ironic since one of the fears that I'm sure has crossed all of our minds is fertility).

Thank you for reading, and also thank you for posting - it feels so much better to know that I'm not the only one who has been through this.

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• By DeckStar
• Posted March 11, 2009 at 9:51 pm
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Tammy, I'm in the same boat too, exactly the same by the sounds of it, right ovary, HUGE, Borderline, wondering where we fit!!!
My next check is in 2 weeks, worrying as I have had pains in my ab and have been bloated for some time!!
Suze
xx

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• By Tammy2469
• Posted March 4, 2009 at 8:46 pm
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I have been wondering the same thing. I'm 38 and on Nov. 21st 2008, I had a total hysterectomy, appendix and 19 lymph nodes removed after they found a mass coming off my right ovary that measured 31cm x 31cm x 21 cm...it weighed over 20 lbs. It was completely contained borderline stage 1 and I didn't have any chemo or radiation either. I like some others, feel fortunate and undeserving to actually call myself a cancer survior, others have gone through so much more. I now am just trying hard to educate myself on what to do in the future...I am set up with my gyno/onc for tests every 3 mos. It is a relief to hear others stories and that some of you have the same feelings that I do....just not sure where we fit.

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• By dhmom
• Posted February 16, 2009 at 9:46 pm
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All of these stories sound so much like mine! I lost a daughter at 21 1/2 weeks gestation...lost another baby at 12 weeks...dr found a cyst on my ovary...biopsy revealed serous borderline diagnosis...had a complete hysterectomy April of 2008. Some people I have talked to respond with, "Well, that really isn't cancer..." What a relief to know I am not alone!

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• By Fireball
• Posted January 1, 2009 at 4:11 pm
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Thank you so much Verlinda.

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• By verlinda
• Posted December 31, 2008 at 2:24 pm
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Dear Fireball and Tracy,

Absolutely you are cancer survivors! I admire those of you who don't undergo chemo more than I could ever express. Sometimes I think your burden is harder to carry because you don't have the reassurance we chemo queens have. At least, we have the reassurance of having blasted anything that remotely resembled a cancer cell.

You, on the other hand, walk totally by faith. I can't imagine anyone feeling you're a fraud. You, too, are our heroes.

Come here anytime. Please, ask any questions any time you want. Relieving your fears is very important to us.

Blessings,

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