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Ovarian Cancer Community
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725998 tn?1258052308

Calling all "Borderline" ladies

A few of us posters and lurkers on this board were diagnosed as "borderline."  This diagnosis brings many, many questions and unique challenges that are not always easily answered.  Some of us thought it would be a good idea to form a support group for those of us dealing with this confusing diagnosis.  This has been cleared with Gail (thanks!) so here goes.

As explanation, I will use the Johns Hopkins information since they are the leaders in this area.  According to JH, it has become apparent that there are different kinds of borderline tumors, some of which are "benign" and some of which are low-grade cancers.  They feel the borderline category has "outlived its usefulness."  

So, we are going to try and be specific here (don't worry if you don't know where you fall, although if you don't you should ask your doctor).  Please identify whether you have an (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, or (6) micropapillary serous carcinoma (this is the one that behave like a low-grade serous carcinoma.  You would probably benefit from the JH online discussion board.  There's one dedicated to women with MPSCs).

As a beginning, if you could post your diagnosis, age at diagnosis, how old you are now, what was the treatment, if there is any on-going treatment, recommended follow-ups, whether or not you are trying to have children (and what's happening in that area, e.g., are you doing IVF, etc.), if you've had a recurrence, and just anything else that you need to get off your chest or want to ask the forum.

I will post my stats separately.  Those of us who want to can share personal e-mail addresses as well.  
67 Responses
135691 tn?1271100723
Hmmm...
This is a very interesting post and I'm definatly curious to see who ends up adding to this. Borderline tumors are such a grey area when it comes to cancer.
I have MPSC. I was diagnosed when I was 26 (almost 4 years ago now) with stage 3c. MPSC is described as an invasive low grade carcinoma although my doctors have told me in the past that mine can behave aggresively at times.
I was originally put on taxol/carbo and did 6 treatments. My cancer recurred 7 months later, and I did 4 more treatments of taxol/carbo. It was then that I really started researching MPSC's only to find out that chemotherapy doesn't work well on low grade tumors. I enrolled in a clinical trial of a drug called PXD101 - it was specifically for low grade ovarian tumors and MPSC. I did this drug for over 8 months and my disease progressed. I then tried Avastin and, after 6 treatments, my tumors shrunk by more than half! I was pretty excited, as you can imagine. I took the summer off last year and began the Avastin again in November but after three treatments, my disease remained stable. I stopped the Avastin (too much $$) and right now, I just take daily cyclophosphamide.
I know that this disease is supposed to be surgically managed and I've been trying for over 2 years to get a surgeon to agree to do a second debulking surgery. The last surgeon I saw wanted to do a total pelvic exenteration (sp?) which basically means they want to remove anything and everything in my abdomen and pelvis - no thank you!
I've been meeting with a new surgeon who is very willing to do surgery and actually agrees with me that this is the way to manage this type of low grade cancer - finally! I'm waiting to have an MRI (in June) and then once he looks at those, he will make his decision. He's already told me that the oncologists who prescribe the chemo don't know what else to offer me...this is my only hope right now.
I also wanted to mention that my tumors were diffusley positive for estrogen and that some women manage this disease simply by taking anti-estrogens such as Arimidex or Tamoxifin. I asked my oncologist about this once and he felt it wasn't aggressive enough...but I guess that's always an option I have if surgery doesn't end up happening.
I have posted on the JH Forum before but it's really not that busy...if there is anyone else here with MPSC, I'd love to know!!
I can't stress it enough, how important it is for ALL of you to get a hold of your pathology reports and find out what TYPE of ovarian cancer you have.
Take care,
Becky
725998 tn?1258052308
My story:  I am 55.  Dx at age 54 with atypical proliferating serous tumor (APST).  I had absolutely no symptoms and went to my gyn because I had slight bleeding post-menopause.  Gyn initially thought I needed a d&c but decided to take a sonogram "just in case."  Found a large mass which they initially thought was a fibroid sitting on top of my uterus.  An MRI confirmed a 10cm mass on my right ovary which they said could be cancer (got the MRI results by phone on New Year's Eve!).  In the meantime, I had begun to have severe cramps which they attributed to the mass.  My gyn said I needed to go to a gynoc.  I researched and found someone who I was told was one of the best, faxed over my records, and he agreed to see me.

Two weeks later I was in the gynoc's office.  He scheduled me for TAH BSO.  Because of my age there was no reason not to go all the way.  He ordered a CA-125 test which came back normal.  I have to admit I never called for the CA-125 test results because I knew the test was unreliable, I was going to have the TAH BSO anyway, and I was stressed out enough.  My blood pressure skyrocketed to 178/110 and they had to put me on meds days before the operation.

Surgery took place January 29.  The gynoc took samples of everything to biopsy (lymph nodes, diaphram, sigmoid colon, etc.).  Was in the hospital for 3 days and then sent home to recuperate.  One week later the staples came out and 4 hours after that the incision opened completly, stem to stern, 3 inches deep.  Had visiting nurses every day for 3 weeks to clean and pack the wound.  Now have a really yucky scar which I try not to look at too much.

Two weeks after surgery the pathology report confirmed that I had an APST, Stage 1.  According to my surgeon, I do not have cancer, I had an APST.  This goes along with the information on the John's Hopkins website which says that APSTs are "benign."  I was told not to check the cancer box when filling out health questionnaires but to tell the physician that I had an APST.  I did tell the gastroenterologist who did my colonscopy and he said his understanding also was that this was not cancer but it noted it on my record.  I got the colonoscopy at the suggestion of my gynoc.  He said it was precautionary.  

I was advised that recurrence is slight, and if it does recur, it probably can be taken care of surgically again.  I am scheduled for follow-ups every 6 months, probably for the rest of my life.  As my gynoc said, I dodged a bullet.

I don't know how I would have known I had this before it was discovered on the sonogram since I had no symptoms until the bleeding.  But I do remember sometimes feeling a pain on my right side when I did things like lean over a counter-top.  It's amazing what you remember in retrospect.  

Although there is no history of ovarian cancer in my family that I know of, and no cancer on my mother's side at all, my father died of sinus cancer when he was 45.  His older brother died of kidney cancer (he was in his early 60s), his middle brother of lung cancer (at 86), and his sister of breast cancer at age 52.  Their father, my grandfather, died of colon cancer at age 77.  So there's lots of cancer there.  My brother and I have been getting colonoscopies since we were in our 40s and I never skip my yearly mammogram.

My advice is exactly what all the great ladies on this forum are always saying:  make sure you go to a gynecologic oncologist, no matter what they think you have.  If it's more serious, you're already ahead of the game.  I had a lot of confidence in my doctors and that meant a lot, especially with this kind of diagnosis.  It's confusing and unclear in a lot of respects but I trust that they know what they're talking about.

I hope we get a lot of other women to post.  It will be great to see how we all fare down the line.
Avatar universal
Thanks for posting this...I have low grade papillary serous carcinoma...but started as borderline..here's my story....

I was diagnosed with LMP (borderline) ovarian tumor 8 years ago (age 25)...complete incidental finding after a cyst ruptured on my left ovary....my gynecologist at the time wanted to go in to "clean it out"....and found abnormal looking cells which ended up being LMP - sample was sent to Mass General to confirm. I was referred to a gyn/onc who performed a left salpingo-oophrectomy.  There was an implant on the colon...but was not invasive...so I was stage II LMP.  I had been followed up with ca125s and physical exams farily consistenly...all great.  Fastforward to June 2007....I went off my oral contraceptives because my hubby and I wanted to start a family (was placed on them to control cysts on my remaining right ovary)..and that's when my ca125 started rising....after a few months of risting ca125 and CT scan...I was scheduled for surgery...all assuming is was going to be LMP on my right ovary...but unfortunately got the devastating news of stage 3c low grade ovarian cancer in December 2007. Apparantly, what I had was a stage progression of the borderline to low grade because of some microscopic cells that were left over.

I was debulked and had full hysterectomy followed by standard 6 cycles (2 IV taxol/carbo and 4 IV/IP taxol/cis) which I completed in May 2008. In July I started the vaccine study (abagovamab) at Memorial Sloan Kettering in NYC. I was originally treated in Philadelphia...but wanted to be proactive so made the trip to NYC for the study.  In Dec 2008, my CT scan showed a small growth and my ca125 was 26 (last measurement in July was 12)...my doc there started me on Femara.  In March, my ca125 was 24 but still something deep in the pelvis...which an MRI confirmed to be a tumor.  My case was brought to tumor board and the consensus was to have surgery to remove it.  It's small and appears to be on my colon......basically, it sounds like I was never optimally debulked. My surgery is scheduled for June 24th.  I just had another ca125 and it's 23.  So it's hovering....and the femara seems to be stabilizing it...but the gyn/onc and surgeon feel that surgery is the best option....they plan on resecting that portion of colon...which they believe should have definitely been removed back in December 08...or possibly even June 2001 with the original colonic implant.  They said that once in, if it is indeed confined to that area and the surgeon feels that he's gotten it completely and doesn't see any other spots, that I will not need more chemo...since these low grade don't do so well with chemo anyways.  But I'll likely continue on Femara or go to tamoxifen.

Sorry for the long story.......just wanted to echo the sentiments that this low grade is different and should be managed differently.  I trusted my original doc...I saw him for 8 years and now I feel angry that he had 2 chances to possibly fix this......so be vigilent in your care and always get second opinions.  You know, I went back to him with this new incident to hear his thoughts.....he said he was comfortable waiting since my levels are still within normal...or if we wanted to be aggressive...start gemzar + carbo....he wouldn't suggest surgery since it's so small.  WTF!!!!!

Thanks again for posting this....I'm curious to hear any other stories......

564735 tn?1263947126
Well here is my story...
In April 2007 I was had a large tumro removed and it was classified as a mucinous borderline tumor. I had a complete hysterectomy and oopherectomy. The follow up plan was to have a ct scan and cea& Ca-125 tests every three months for the first year and then every 4-6 months for year two. In July 08 a couple of lesions were discovered in my liver and in a lymph node during a ct scan plus my cea test went from 0.9 in january08 to 4.9 in July08. a biopsy confirmed I had a reccurence and it was classified as stage 4 high grade tumor. My doctors at MD Anderson recommended 6 treatment of Oxilaplatin,avastin,5-fu and leucorvin. After 6 treatments the tumors had shrunk and my cea had decreased to 2.9. My oncologists recommended 6 more treatments and I completed those treatments in March09. Last ct scan in February09 showed tumors gone from the liver and lymph node was 5mm and cea was down to 1.1. I have a PET scan in the middlle of May. Julie
Avatar universal
Thank you gls2824 for doing this.

Here is my story:
I am 38. Have no children. I had sharp right flank pain in July 2008. Transvaginal ultrasound discovered a complex cyst involving the left ovary. The paratubal cyst (near the fimbriated end) was removed Nov, 2008. NO staging was done. The original pathology result is Serous Borderline Cystic Tumor. Capsule is Intact. Grade 1/3.

I sent my pathology slides to Johns Hopkins for a second opinion. The result is Atypical Proliferative (borderline) serous tumor.

My gyn-on recommended a 6 months follow up with CA125 and ultrasound. I am currently contemplating on what to do next: do I simply wait and observe and potentially try to have a baby or should I go for further treatment…at least a complete staging

As far as I know…my treatment, a simply cystomy, is the most conservative one for a borderline tumor. This makes me extremely nervous…I would love to hear your ladies story

rai

Avatar universal
Exactly 7 years ago today, at age 33, I was diagnosed with serous borderline LMP stage 1.  Prior to my surgery I had not been feeling well, I was extremely tired, had extreme gas (which was unusual) had seemed to gain weight (was already overweight), had zero energy, and knew something was wrong!  I was also having weird headaches with vertigo and my periods were very heavy and lasted a long time.  Not all these are typical symptoms of ovarian tumors but this is what I noticed.  I also "realized" after the fact that I was having some ovarian pain but it lasted only a few seconds. After I found out about my orange sized complex cyst, I realized that I could actually feel it, once I knew it was there.  I slowly had changed my habit of eating at the kitchen table on a hard chair to sitting on the couch to eat - I realized I wasn't comfortable because of the tumor.  Just as someone else said, sometimes we realize these things after the fact.
I had to prod my doctor into doing something - I didn't know what was wrong but I knew something wasn't right.  At first my doctor just wanted to give me a sleeping pill until I insisted something was wrong.  It was coincidental that the tumor was found, he thought he'd find a fibroid.  
I was referred to a gyn, (no gyn onc available in my province at the time) who was absolutely horrible, and the first time I met him, he walked in, and said to me don't worry you don't have cancer.  I knew he couldn't know that without surgery and really resented him telling me that.  He told me I was too young for this kind of cancer.  I left his office and went directly to book another appointment with another gyn.  
He decided to do a scope first and then if they needed to would do a full laprotomy.  I asked for a frozen section biopsy as well.  The doctors ended up doing the full surgery as it was larger than they thought and was also stuck in my fallopian tube.  Unforntunately, because they thought it "looked" alright they closed me up before getting the results of the frozen section.  So, I was not staged properly - they also did not perform a hysterectomy because of my age.  The regular pathology came back with the same diagnosis.  I also had my slides sent to a gyn pathologist - which also agreed with the diagnosis.  
At this time, they still recommended hysterectomies for this type of of diagnosis.  I opted for it a year and a half later and asked that they also give everything a good look.  I insisted on a CA125 before surgery and it was 66, after the first surgery it bounced around but was never below 35.  After the TAH I never had it checked as it was obvious to me and the dr that it wasn't a good marker for me.  I had 6 mos follow ups for 5 years then have had yearly check ups.  So far so good.  
Without websites like this one (I've been coming here for over 7 years!) I wouldn't have had the courage or knowledge of what to ask my dr and I want to thank everyone who contributes on these boards because you've helped me become more responsible for my own health care.  I used to think that the doctors always knew everything and were always right - that's not the case and I learnt we must be proactive in our own health care - no matter where we live in this world.  
I know how fortunate I am to have had the diagnosis I received and for it so far not to have returned.  My prayers and thoughts are with everyone still fighting.

Sorry for the long post.

Debbie in Canada
725998 tn?1258052308
bump
Avatar universal
I was diagnosed in March 2008 (age 35) with a borderline serous tumor.  It started on February 1, 2008 when I went to the ER for some mild pain I had on my right side for a few days.  They did a transvaginal ultrasound a saw a cyst in my LEFT ovary!  They thought it was a simple cyst but was not conclusive so at my follow up with my family doctor, they decided to repeat the ultrasound.  This time they thought it might be a dermoid cyst but still was not conclusive so my doctor ordered a CT scan.  The scan said possible cancer.  My doctor did a CA125 test which came back 10 and sent me to a gynecologist.  The gynecologist really thought that it was a benign cyst because of my age, no family history of ovarian or breast cancer and that my blood test was so low.  We decided to start with laproscopic surgery to remove the left ovary and tube.  Had tha surgery in March and at that time, he did some pelvic washings and a biopsy on my right ovary.  We were shocked when the report came back with a borderline serous tumor.  My biopsy on the right ovary was normal but the pelvic washing came back with rare atypical cells that they thought were benign but was inconclusive so he sent me to a gyn-oncologist.  My oncologist was not overly concerned with the results of the washing.  He said lots of things can cause atypical cells but thought since I was done having kids anyways, I should have a complete hysterectomy along with removal of my omentum and a complete staging.  So on April 11, 2008, I had the surgery.  He did a bunch of pelvic washings and looked at my lymph nodes.  He did not have to remove any nodes because he said they all looked really good.  All of the pelvic washings came back with no malignancy so my doctor thinks I will do just fine.  He said the tumor was so small (2-3cm) and that only a small portion of it had the borderline cells.  The rest was cyst fluid.(I guess that is why there was conflict between the ultrasounds and CT scan)  He said no chemo as these tumors do not respond because they are not cancer.  He even said not to check ovarian cancer on any medical reports but to state that I had a borderline tumor.  I see him every 3 months for follow up and have the CA125 done twice a year and so far so good.  I worry about this everyday.  I hope to over come the fear  but I always think back to the inconclusive pelvic washing.  My doctor says that he has treated hundreds of women for this and he has only had 2 recurrences.  I try to stay positive but it is hard.  I have two little boys that I want to stay around for.  
792410 tn?1270319100
Thank you so much for starting this thread.  I am not really a "Borderline" lady but feel as though I belong in this group.  I am very interested in hearing about the treatments that all the grade 0 and grade 1 ladies are getting and how they are doing with them.  I was diagnosed with low-grade papillary serous carcinoma in 12/07.  According to the fairly recent literature grade 1 ovarian tumors should really be grouped together, and possibly treated more the same way, as the grade 0 tumors due to the fact that neither really respond to chemo.  This recent information is very exciting to me because it's another avenue to explore treatment wise for us grade 1 ladies.  As a rule grade 1, 2 and 3 cancers are given the exact same treatment, but the grade 1 ladies have really very little chance of anything other than a CA-125 response.
725998 tn?1258052308
bump
Avatar universal
I sure hope we get some more stories here.  Especially some positive ones.  I belong to a forum on team inspire and lately it seems like I've been reading a lot of posts where women had borderline tumors and years later were diagnosed with ovarian cancers.  I am so scared right now.  My doctor always makes me feel like I will be just fine and that I am not at any higher risk for any cancer because of this.  He also makes it sound like if it does reoccur,  you just have them removed as they are no big deal.  He also said it is very rare for them to come back and it has only happened twice for him out of hundreds.  But after reading these posts on team inspire, I don't know what to think anymore.  I have an appointment with my gyn. oncologist in june and I sure have a lot of questions.  I just hate this fear!!!  Some positive stories would be wonderful to hear.  I hope there are women who have gone 20 or more years with this and have been just fine.
135691 tn?1271100723
I think what's most frustrating is that many women think they have ovarian cancer, and that's that. They don't know to ask what *type* they have...in the same sense, doctors tend to treat them all the same when, what they should really be doing, is looking at each individual and figuring out what type of chemo/treatment works best for their cancer.

Becky
Avatar universal
I totally agree with Becky. Knowing the specific type is definitely important...

Borderline tumor is unique and vaguely defined and therefore create lot of misunderstanding and frustration.

My gyn-on told me in writting that "borderline ovarian tumor is different entity than ovarian cancer" they made me feel this is nothing compare to patients who currently have cancer

on the other hand, i've heard more and more cases that borderline progress to invasive cancer...

I am trying to find a gyn-on who specilized in borderline tomors and can throughly look into my case so that i can make informed decisions

rai


725998 tn?1258052308
I think that some doctors are still lumping (no pun intended) all borderline tumors together.  It seems obvious that there are different kinds and that they should be treated differently.  If a doctor says you have a borderline tumor, it's therefore important to find out if it's the micropapillary kind, which some doctors are now classifying as low grade cancer.

However, if some doctors still aren't differentiating among the 6 different kinds, it will be hard to determine who actually had low grade cancer to begin with, and who didn't.

My gynoc was very specific that I had APST and even wrote it on the back of his business card and told me to keep it in my wallet.  He said that APSTs very rarely recur, and when they do, it's usually 15 or 20 years down the line and are once again surgically managed.

Maybe since doctors are beginning to classify borderlines more specifically, future studies will give better information as to recurrence.  Borderlines that "turn cancerous" probably weren't really borderlines to begin with but micropapillary serous carcinoma which are really cancers.

It also seems to matter what kind of operation one has (laproscopic, etc.), and how conservative the surgery was.

725998 tn?1258052308
For those concerned about fertility, someone just sent me this from the Pub Med site.  It's from May 2009 so it's very current.  A group in France has been doing a lot of long-term research on borderline tumors.

"Results after conservative treatment of serous borderline tumours of the ovary with stromal microinvasion but without micropapillary pattern.Laurent I, Uzan C, Gouy S, Pautier P, Duvillard P, Morice P.
Department of Surgery, Institut Gustave-Roussy, Villejuif, France.

The aim of this study was to assess the outcomes of women treated conservatively for a serous borderline ovarian tumour with stromal microinvasion (SBOT-SMI) but without micropapillary pattern. Ten women treated conservatively for a stage I (n= 8) or stage IIIB (n= 2) tumour were followed up. With a median follow-up duration of 62 months (range 7-117 months), five recurrences developed on the preserved ovary. All lesions were borderline recurrences (with noninvasive peritoneal implants in one). All women are currently disease free. Three women achieved a spontaneous pregnancy and three became pregnant after an in vitro fertilisation procedure. This study suggests that conservative treatment of SBOT-SMI is safe.

PMID: 19432576 [PubMed - in process]"
792410 tn?1270319100
   After reading the information on this thread about Borderline Tumors and how they don't respond to chemo, it really got me thinking. I have low-grade OvCa and have been told repeatedly that low-grade OvCa doesn't really respond to chemo.  In the back of my mind I was always thinking "Why am I on chemo if it doesn't work on low-grade."  (See my profile if you're interested).  I called my cancer center and requested my pathology reports to find out the exact type of OvCa I have. I found out I have Papillary serous carcinoma - low grade.  

   Armed with this information I started doing some research and I stumbled across an article released by MD Anderson a little over a year ago.  A study had been done there by Dr. David Gershenson and basically it said that grade 1 OvCa shouldn't be grouped with the grade 2 and 3 OvCa's.  That maybe it needs to be grouped with the borderline type MPSC, and maybe it needs to be treated more like that diagnosis.  Surgical management plus hormonal therapy such as tamoxifen.

   I went for my pre-chemo Dr.'s visit yesterday and discussed with her my thoughts on what I had learned.  She said that I was on chemo right now because when a woman has a recurrence they want to see a pattern of stabilization for about 1 year.  Then they reconsider treatment options such as a second de-bulking.  I've been stable for 8 months and she said that she would refer me to a surgeon now to see what they have to say because my CT scan is virtually unchanged from the one that confirmed my recurrence.  She also said that I am the perfect candidate for estrogen therapy (low-grade cancer and low volume disease) and that if I wanted to try it she thought I would have a good chance of responding to it.  If the estrogen therapy does indeed work, then I could stay on it instead of chemo!  

   Last week at this time all I could see was chemo for the rest of my life.  As of yesterday everything is different.  I could possibly be a candidate for a second de-bulking surgery and if I respond to tamoxifen, I can go off chemotherapy.  I owe it all to Calling all "Borderline" ladies...and I'm not even a borderline lady.  I hope other grade 1 OvCa people see this thread.
Avatar universal
This thread has certainly given me a new list of questions for my next follow up. My doctor is use to this as I haven't had an appointment yet with no questions.  I looked back at my pathology report and it just says serous borderline tumor so I don't know if it was micropapillary or not.  I will be asking him that.  I know I have a very good doctor and I know that at some point we need to trust them because they are doctors and we are not but it is so frustrating to see that the doctors all seem to have different opinions on what to do for this type of tumor.  It makes it very scarey.  How do we make decisions when you don't know who is right?
135691 tn?1271100723
This link is the perfect example of why we need to ask lot's and lot's of questions! I was told I had ovarian cancer that the first line treatment for ovarian cancer was taxol/carbo. Heck, I even did it twice! I trusted my doctors and if this is what people with ovarian cancer do, then that's what I need to do.

If you read the article that goes with this link, it pretty much says that when they tested the tumors against chemotherapy, those with MPSC responded the worst to taxol/carbo and the high grade tumors responded the best to taxol/carbo. Apparently MPSC responds best to a chemo drug that is hardly even used with ovarian cancer...

I can't stress it enough - get your pathology reports. Research and learn everything you can. Knowledge is power when it comes to fighting this disease...

Becky







http://www.ncbi.nlm.nih.gov/pubmed/17504374?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
414018 tn?1268615272
My story.
I have struggled with my borderline diagnosis mainly because i do not do well having something we know very little about, and feeling like a guinea pig. I have to admitt at first i thought Australia was behind in research etc but i have learnt that we have some of the top guroos in this country especially to do with ovarian cancer research.

I was diagnosed with stage IIIA LMP borderline micropapillary serous tumour when i was 22 (2006). I was treated surgically with a laporotomy, right ovary removal through an open 15cm vertical wound (plus a number of laporoscopies). No scan, ca125 showed my tumour on my right ovary only through laporoscopy were we able to first diagnose my condition plus found 5 other spots throughout my utuerus. I had another laporoscopy in jan 2008 and they found the 5 spots had reoccurred. REcently as many of you prob know mine has turned invasive and i have undergone (May 2009) a radical hystorectomy, bowel reconstruction and removal of several tumours. I can not stress enough to any ladies out there, in my personal experience plus the research i have done over the last 3 years, if you have had children, GET IT OUT!  I dont care if its so called borderline, they still do not have enough clinical trials to guarantee how these different types of borderline will act in the future and for me, the risk is not worth it. I tried getting everything out in 2008 and i wish i had of pushed it harder now. My serous type was also 'diploid'in nature not anuploid and was NOT  meant to turn invasive.

Apparently, they dont do restaging after borderline turns invasive so i am still a little confused as to my stage, grade etc but obviously am healing so there is not much i can do about that side of things at the moment. All i know mine was "ÓN"  NOT IN my organs which makes me think it was still acting like a low grade ovarian cancer? it had started going a bit into my utuerus, but my count and health started going down hill last November so to me for the cancer to have been sitting "ON" for that long, it clearly is not like the highly invasive types my dear friends have been fighting.  For once I actually trust my chemo doctor, he really is a genius and i have not met someone so on the ball with recent clinical trials, drugs, treatment etc so i am trusting he has me on the right types of chemo. As all 3 oncologists which i deal with (they all know and respect that i want second opinions) say my case is complicated, it is still only 3 weeks since my major surgery so i think i will give my oncologist a call on FRiday this week to talk more about the particulars of my histology....

I begin a campaign for ovarian cancer in August/ September here in Australia through TV, papers etc and I will be making a point about borderline and how more needs to be done, but honestly if i could just help save one life... i would say to any other female even my age without kids GET IT OUT!
414018 tn?1268615272
TAMOXIFEN
Oh this is really important...From my experience i woulod NOT recommend tamoxifen. I know my body, i even told the surgeon where the tumours were that he would find and i was right. I honestly believe the tamoxifen is what caused my borderline to turn invasive. honestly. It is my gut instinct and how i feel. After being on tamoxifen for only 4 weeks my count doubled, i experienced tremendous pain and could feel things growing or changing inside me. I guess they hope because of the success for breast cancer that it will work for us and i guess my answer is they are completely two seperate cancers and sadly does not work for OVCA. My borderline also tested positive for estrogen receptors so i was a perfect candidate according to the theory but did not work .
792410 tn?1270319100
Thank you for the tamoxifen information.  I'll look in to that more thoroughly.  It was the only medicine that my Dr. suggested if I was to go off chemo.  Now that you've had your surgery, have your doctor's talked at all about what treatment they have planned for you in addition to the surgery?  Please post when you know.  I am very interested in what they do for you since we are both low-grade cancers.
135691 tn?1271100723
I'm sorry you didn't have luck with the Tamoxifen...I do know several ladies though, with invasive low grade cancers (that are estrogen receptive) who have had much success on anti-estrogens.
I'd like to think they would work well for me...I was initially put on Premarin (estrogen replacement) after my hysterectomy (strictly due to my age) and I just know, deep down, that that is what caused my cancer to recur...my new doctor has even hinted that this may have contributed to my early recurrence, but of course won't come right out and say yes or no.
I guess everyone reacts differently to different drugs...I know for me, I'd be willing to try them but my doctor feels they aren't aggressive enough at this point in time.
I think Ramsay14 has it right...look into every option thoroughly...ask lot's of questions...challenge your doctor's until they come up with a plan that your happy with.
Avatar universal
gls2824
do you know of the different types of borderline tumors which ones tend to be estrogen receptive?  I am curious if it is only the MPSC type or if all of them have the possibility.  My pathology just says serous borderline tumor so I have to double check with my doctor if I had micropapillary or not.  I would hope he would only recommend something that is safe for he.  He knew I was SO hesitant to do the estrogen replacement and assured me many times that I was a good candidate for it and that I would do well.  Even the other gyn/oncologist that I went to for a second opinion said I could do it.  I only had one tumor in my left ovary and it was only 2-3cm and I guess of the 2-3cm only a very small portion of it had the borderline cells in it.  I had the hysterectomy because I was done having children.  I hope I am doing the right things.
725998 tn?1258052308
I don't really know.  It may not even be the kind of tumor, but the person (in other words, it may vary person to person).  I've tried researching this but can't find anything.

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