Borderline Ovarian Cancer?

• By michellelovejoy
• Posted October 1, 2008 at 10:08 pm
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I was diagnosed with a borderline tumor of low malignancy potential after a suspected cyst was removed along with my right ovary in August. There are 2 main types..serous and mucinous. Here is a helpful link that I read about it. What kind of surgery did you have when they found it?
http://www.nature.com/modpathol/journal/v18/n2s/full/3800307a.html

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• By Nova
• Posted October 2, 2008 at 8:17 am
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Thanks for responding! I haven't met or talked with anyone else that has been diagnosed with borderline cancer...they actually found the tumor while doing gall bladder surgery. So, it was a total surprise! I'm not sure which type of tumor it was. I still have one ovary and am trying to have a least one child before they remove it. Thanks for the link -- I'll have to look through my records and see what kind of tumor it was..

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• By jolock2004
• Posted October 2, 2008 at 8:18 am
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This happenned to my sister almost 3.5 years ago. She has had no problems since her surgery. They staged her a 1c..because her cytology test was positive for cells..but the mass they removed was borderline. All she had was surgery ..no chemo and as I said she's been fine since!! Good luck~~~Joanne

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• By FavoriteAunt
• Posted October 2, 2008 at 8:36 am
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Have you seen a gynecologic oncologist? If not, you should. He/she can address the cancer issue, and the family-planning issue. For peace of mind, I personally would go.

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• By carolfitz
• Posted October 2, 2008 at 10:09 am
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Unfortunatly my tumor was stage IIIb. I waited (foolishly) too long and was in real trouble.
You have not lived until you have seen all the color drain from your Dr's face when he walks in and looks at you.
Acities was about 19 or 20 liters when drained before during and after surgery.
CT scan last week shows some build up near liver and stomach. Oh, yes, it also showed gallstones!! That explains my extreme craving for sugar. Which might explain why my CA 125 is still at 131 after 6 rounds of Carbo/taxetare.
I guess I am not platinum resistant after all.
Carol

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• By Nova
• Posted October 2, 2008 at 12:24 pm
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Favorite Aunt,

Yes, a gynecologic oncologist did my ovary surgery. Apparently during the gall bladder surgery my surgeon called in other doctors to take biopsies on the ovaries. The gynecologic oncologist visited me in the hospital when I was recovering from the gall bladder surgery. They waited a month to do the ovary surgery and during that time he sent me to a fertility specialist in Tampa - and that's who I'm seeing now about invitro. I have scar tissue from the surgery that is blocking my tube, so invitro is the only option now. Hopefully that will work and they can take out my remaining ovary after I have a child.

Thanks for responding - I appreciate it!

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• By jennyann
• Posted October 7, 2008 at 6:49 pm
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I had posted under another heading earlier. I was diagnosed with borderline ovarian cancer after being postmenopausal for several years. Both tumors were quite large. They were staged I. Can't remember what the other category was mucinous or serous. But I think it was serous. (probably spelled wrong). It has been 4 years this month that I had my surgery and asked to have complete hysterectomy at the time. Because I was not of child-bearing age and already had 4 grown children that was not an issue. Surgery was the only treatment with regular CA-125 tests and once a year CT scan. I have only talked to about two people that have ever had that diagnosis and they were fine after several years. I guess I had symptoms for some time but when I went to a GP she suspected uterine cancer and wanted to do a biopsy in the office. I refused the biopsy after she said she might have to send me to a hospital for emergency hysterectomy if anything went wrong. Later she asked if she had ever requested an ultrasound and when I said "no" she scheduled one. They could not see the ultrasound because the mass was covering everything and they ordered a CT scan. Needless to say - I changed doctors and went to a recommended OB-GYN oncologist/surgeon who specializes in research of Ovarian Cancer and also is affiliated with a teaching hospital near Chicago. Everything has been fine so far and he had predicted it would be. I will probably have to be checked forever - at least that is what he seemed to indicate. Best wishes,

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• By GeeRose
• Posted October 7, 2008 at 8:55 pm
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In April of this year I was was scheduled to have my ovaries removed because of an ovarian cyst on my right ovary. During the surgery it was discovered that I have a borderline ovarian malignancy, Staged 1C. My CA125 and CEA are normal. I had a complete hysterectomy. I went to an oncologist and a gynecologist oncologist and they agreed that the surgery was all the treatment I needed. My pathological slides were reviewed by several doctors also. For the next 2 years I will have CTs of the abdomen/pelvis, blood work and a pelvic exam every 3 months. I feel very lucky that the cancer was found in an early state. But...I still worry.

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• By cjp0611
• Posted October 12, 2008 at 10:01 pm
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In December I had a miscarriage, just a few days before my 20th week ultrasound. Never wanting to go through the pain of losing a child at that stage in a pregnancy again, I went through a pregnancy loss evaluation. Through this evaluation and the persistance of my doctor, the Cancer was caught at an early stage. At age 30, I had one of my ovaries removed along with some glands and the appendix. I am a very very fortunate woman as I did not need radiation or chemo. My oncologist states that he believes that it was an isolated instance. However, I will be making trips to the oncologist every four months for the rest of my life. It is something that weighs on my mind and I constantly wonder, why me and how? Every time I drink a diet coke or wish that I can sit in a tanning bed, I wonder if that was the cause. I look forward to the day when there are reliable tests and more information on the cause of Ovarian Cancer.

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• By piper_80
• Posted October 18, 2008 at 6:51 pm
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I was diagnosed with a borderline tumor in March of 2008. I couldn't believe it. I am only 27 and it's not heredity in my case. The doctor's really don't know why it happened to me. We had been trying to get pregnant for about 6 months. I'd been off the pill for about 9 months and we still weren't getting anywhere. I started having weird symptoms like bloating, even after my period had ended, cramping, and hair loss. They did a regular and a intravaginal ultrasound and found the mass on my left ovary. They then did a ca-125 and my levels were high. I then saw and onocologist. I ended up having exploratory surgery and they found a 9cm mass. So they took the ovary and scraped the surrounding tissues. They called it borderline, said they'd caught it early and that I could still have children. So that's where we are at right now. They have to see me every 3 months for bloods and that lovely exam that we all just adore :) The doc gave us 5 years to have whatever kids we want and then they'll do a hysterectomy. In most borderline cases like ours they just watch us. They may put us on steriods since we have a risk of getting peritineal cancer, but since I want to get prego soon they are just watching me.

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• By Fireball
• Posted December 10, 2008 at 5:57 pm
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I was also diagnosed with a borderline tumor after my total hysterectomy. I have a stupid question are we cancer survivors if the cancer was contained and removed with no chemo?
I have read survivor stories and I feel so fortunate and undeserving. These people have been through so much.

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• By heartbrokenmommy
• Posted December 24, 2008 at 4:12 pm
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Hi,
I was diganosed with a serous borderline cancer tumor when i was pregnant. My sweet baby saved me but i couldnt save him. I was 16wks prego when i had surgery to have it removed. Dr said all went well. Then on 11-26-08 when i was 28 wks I lost my son. Dont know why waiting on a autopsy report still. Im so heartbroken. Now i'm going through the steps of following up on my cancer. Dr did a ca125 level was at 36 but he said it might be elevated due to i just had a baby. I am terrified and get such bad anixety. I dont know if its from me greiveing or the cancer or just all. I havent really spoken to anyone about this. It really hurts and im scared. I had a cat scan done this past monday. I still have one ovary dr only removed the one with the tumor on it. Any advice or just chatting would help.

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• By tracyintn
• Posted December 31, 2008 at 2:41 am
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I hope this doesn't post twice, the first was lost.

I was diagnosed with borderline ovarian cancer (at the age of 28) almost 11 years ago. I had a total hysterectomy (I did not have children) and follow-up ranging from every 6 weeks at first to every year for the first 5 years. I still have CA-125's drawn occassionally just for my own piece of mind.

Fireball-I feel exactly the same way you do-I feel like other people will think I didn't really have cancer-since I didn't have chemo. But I went through a lot at that time (physically and emotionally) and feel like a cancer survivor.

I really just want to say IT GETS SO MUCH BETTER!! I hardly ever even think about it anymore (in fact it's just a fluke that I even did this search tonight). I am married now and have two wonderful adopted children. My daughter (4) is from China and my son (2) is from Vietnam.

Heartbrokenmommy-I had horrible depression after my surgery and I didn't lose a baby-only the potential to have one. The thing that saved my sanity was joining Gilda's Club (it had just opened here-I think they are still around). It was the best place in the world for me. I could talk about what I was feeling and everyone there knew exactly what I was talking about. I didn't feel like I was burdening anyone with my feelings and they all understood my fears (everyone else was telling me I was lucky it was over, but I was terrified of a re-occurance). It's a wonderfully supportive place-at least it was for me.

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

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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 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 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 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 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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