SEROUS BORDERLINE

Hi everyone,
I have been trying to research my diagnosis. I was so releived to find out I didn' t have cancer when they said I had borderline. Then someone said well that is considered stage one. Asked pyhscian and he said no it actually was stage 3 c. I am 59, had surgery in June. He then said but it was borderline. I go every 3 month now. He did say that they have found that chemo really doesn't help this slow growing maligancy.
I seem to be older then most of you girls when they found this. I had my uterus removed when I was 38.
Never really went to the doctor always seemed pretty well until I went to my mothers 98th bday and ended up in emergency. They found one ovari the size of a watermelon and the other a soft ball. Had surgery 5 days later in my home state. Said I had numerous implants, nothing in my lymph nodes, but tumor in my ovaries,omentum and peritonium. Just need to know if others are like me and if this is just the way it is.
Thanks,
Asche

By lifeisgrand
Posted October 30, 2009 at 4:56 pm
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Your confusion seems to be about stage and grade. The stage of the tumor is how far it has progressed before the diagnosis and surgery. You were stage 3C because of the abdominal implants but no lymph node involvement. The cell grade of the cancer (how far from normal tissue it is) is borderline or low malignant potential (LMP) which means it is a slow growing. Chemotherapy is often not used in these tissue types because the chemo acts on fast growing cells so has little affect on the LMP tumors. When they do return it is often years later so much be watched for a long time.

You're probably not really older than most. The average age of diagnosis with ovarian cancer is 64. I think you just see more younger ones here because the older ones probably aren't on the internet.

Best of luck to you. If you search for "newbies" there is a lot of different posts with good information.

By genica45
Posted October 30, 2009 at 6:11 pm
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I has surgery to remove an 11-pound borderline malignant serous ovarian tumor from my abdomen back in May 2009.

I never heard of borderline malignant until the doctor told me that it was. At the time I thought, "Just what I need. Another ball out of left field to hit me in the head." I researched it on the the Internet during my recovery time and I still do.

I just met with my oncologist the other day. I'm not on chemo or radiation because as was stated in the previous post, those don't work on these kinds of tumors. I get bloodwork and physicals. My gyno said watching me was what they need to do.

By Kat56
Posted October 31, 2009 at 9:41 am
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I was diagnosed in 1984 with borderline and had complete hysterectomy at the time (I was 27)

In 2005 I ended up in ER due to pelvic/rectal pain - sure enough it was back (after 21 years) - Had surgery to remove tumor. Did 6 rounds of carbo/taxol and 1 year maintenance -
It is back again and I had surgery again in 1/09 - couldn't remove tumor so I ended up with a colostomy and 38 rounds of radiation. Now I live with this tumor with the hope that the radiation will help.
We might try hormonal therapy (I think Femara) if my next scan shows any growth.

I hate this disesase!

By ASCHE
Posted October 31, 2009 at 10:18 am
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Hey Girls,
Thanks so much for all this information. Its nice to know others know what you are going through.
I am beginning to understand this disease a little more each day.
Asche

By RhodaLois
Posted November 1, 2009 at 11:37 am
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Asche
I'm 66 so fret not....there's an old bag out here who's undergoing this journey, too :-)
I'm Stage III Ovarian but you know, doc never told me what Grade I was. Since I've had small tumors near kidney (but not on) and now in peritoneum (both about the size of walnuts and both discovered after CAT's at different times, I've had a lot of chemo. So far the chemo has worked but I won't know about this last one in peritoneum til mid month after my CAT. (I'm also a breast cancer survivor, mastectomy, reconstruction, etc.) When I had CAT 3 ;months into my last protocol, it showed the tumor was still there so not sure topotecan has worked, but will know soon. Whether or not it has, doc wants me off chemo for a while as my wbc and platelets have been affected (now normal thanks to shots for the wbc and just time for the platelets). It is frustrating cuz I feel well but never know what tests will show! I thi nk about people who don't go to doctors and go on their merry way and then there are all of us who keep on top of our bodies and are definitely better off being monitored and treated but the cost of that is worry. So I decided not to read much on the internet (but glad I found this site and have learned much by everyone's sharing experiences) and to live day by day and be hopeful. We need our energy. Trust your doctor.
Good luck!

By curiouscat
Posted November 2, 2009 at 7:41 am
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Hi! I'm 55 and was diagnosed with borderline in January 2009. I had an Atypical Proliferating Serous Tumor (APST) stage 1C, 10 cm in my right ovary. Had a TAH/BSO.

We are older than most for this kind of cancer. Borderline cancers are generally found in younger women, so we are very lucky! And most borderlines aren't staged, so it's a good thing we were.

Borderline tumors have existed for a very long time but it's only recently that they have been categorized and defined. It's not only important to know what stage you are, but what kind of tumor it was.

There are many doctors who feel that the definition of "borderline" has outlived its usefulness. Johns Hopkins has great information on this site. Here's a summary:

The different kinds of borderline, or LMP tumors are: (1) atypical proliferative serous tumor, (2) atypical proliferative endometroid tumor, (3) atypical proliferative clear cell tumor, (4) atypical proliferative transitional cell tumor, (5) mucinous borderline tumor, and (6) micropapillary serous carcinoma (this is the one that behave like a low-grade serous carcinoma and is usually treated with full hysterectomy,BSO and chemo regardless of the age of the patient).

My gynoc told me in his 30 years of practice he has never seen an APST recur, but if it does, the treatment would again be surgery. The difference is whether or not there are invasive implants (not just implants, but invasive implants) and this usually occurs with the micropapillary serious carcinoma.

Good luck!

By ASCHE
Posted November 6, 2009 at 5:35 pm
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Dear Genica 45,
You and I had, I believe, the same type of borderline. They also removed a tumor about 10 lbs from me. What were your symptoms. Really curious.
What made you go to the doctor.
Thanks

By BigKathy
Posted November 11, 2009 at 5:46 pm
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My surgery was 7/14/09 - I had a TAH, omentum and two lymph nodes removed.
My slides and tissues were reviewed by three dr's - Dr. Stanley Robboy of Duke, Gyn Onc at Sloan Kettering, and a Dr at hospital where my surgery was. All diagnoses were same: Serous bordeline tumor involving bilateral ovaries with multiple non-invasive implants.

I was told by my gyn onc and oncologist that although stage 3c - that borderline serous tumor isn't treated with chemo (as it is a slow growth tumor) and that additional surgery may be needed in a few years.

Well - 4 months later and now gyn onc said today I may need additional surgery soon. I have a 8cm x 6cm x 7cm (size of an orange. Getting a PET Scan to see if cells are metabolically active.

All the web searches I found didn't have any one else needing surgey for BST so quickly. My gyn onc said he has had one case like mine in 20 years.

Has anyone else on this board needed surgery so quickly after surgery for BST? I would hate to have surgery and have them remove scar tissue. I'm hoping PET Scan shows more info than last test - Cat scan with contrast.

Any comments would be appreciated

By BigKathy
Posted November 24, 2009 at 11:50 pm
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i had a tah-bso in july 2009. my pet scan last week showed a 8.6 cm non-hypermetabolic mass arising from my sigmoid colon wall, a 2.9cm cystic focus in left pelvis with hypermetabolic lateral wall uptake , and hypermetabolic left external iliac lymph nodes & soft tissue nodules in the pelvis.

I'm having a colonoscopy next week to check out the colon. And I'm getting a 2nd opinion with Memorial Sloan Kettering next week.

I'm trying to find out why this supposedly slow-growing cancer has grown so fast. I'm hoping that Memorial Sloan kettering has more answers.

I will post again late next week.

Happy Thanksgiving everyone!

By genica45
Posted yesterday at 10:53 am
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ASCHE,
Sorry for this late answer. I actually saw a general practioner for a knot above my naval that I thought was an umbilical hernia. I "diagnosed" myself on the Internet. I had a belly. I work out a lot and my belly never seemed to get smaller. I actually looked like one of starving children with thin limbs and a belly. The GP, and I really believe God lead me to him in particular, was concerned with my belly which I told him I thought was genetics and due to getting older. He didn't. He asked me questions about my bowel movements and if I had any trouble breathing. I remember he raised his eyebrows when I said I had acid reflux. He sent me to get a CAT scan (no contrast though he asked for one with contrast they didn't give me one) and that showed a "large adbominal mass." A nurse there also asked me if I was having any trouble breathing. I knew something was up. The GP immediately called a gynocologist who agreed to see me the next day. And after that it was a whirlwind of getting me ready for surgery.

I really didn't know I had symptoms because I lived with them for so long. It wasn't until I was researching this "borderline malignant diagnosis" during my recovery time that I realized I had symptoms. I was constipated, had gas, had trouble eating, had acid reflux and some activities I like to do like running were getting harder. I also burped a lot while running and using the rowing machine. I also had a hip pain that shot down to my knee. I didn't notice it was gone until a poster on here mentioned having hip pain.

I think the doctors were amazed I lived with a tumor for so long and was able to do things like run 5ks - like I did the weekend before I saw the GP. Had I known I had an 11-pound tumor I would not have run a 5k. I swim lots of laps. I'm not a fast swimmer but I swim a lot. I rollerblade and row. I can run and row without burping.

Welcome to Inspire!

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