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725998 tn?1258048708

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.  
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Avatar universal
A related discussion, response to "borderline ladies" was started.
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Avatar universal
A related discussion, Other borderline ladies around? was started.
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725998 tn?1258048708
Louise -- what kind of borderline serous did you have?  APST or MPSC?  It makes a big difference as to how it's treated.  The new thinking is that MPSC shouldn't even be diagnosed as borderline but as low grade carcinoma.

Your advice is good and echoed on this site.  However, there are controversies over CT scans.  Some doctors feel that with borderline cases, the radiation does more harm than good.  Everyone should read what they can and discuss the alternatives with their doctor so they can make an informed decision.
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Avatar universal
Transformation from Borderline Serous tumor to a Well Differentiated Serous Carcinoma is not uncommon!  This is new study.  Mine switched after 13 years to low grade (slow growing).  Low grade has just recently been separated from high grade for it acts differently.  This is all still new study.

I had Borderline at 28 (1995).  I told the doctors I wanted children and demanded to go thru fertility, which was not heard of then.  I froze at the embryo stage, since I was engaged at the time.  They removed my ovaries and left my Uterus.  I have 2 beautiful daughters now!
The doctors of course did not advise fertility at the time, and now when I tell them what they did they are amazed and new research is pointing that direction.
Borderline is typically slow growing; you have time to find the right doctors, surgeons, ask questions, research before surgery (removal).  

My advice is the following:

Annual gynecologist appointment with CA125 .The result does not need to be above 30 to show cancer.
When I was rediagnosed it raised from 11 to 18.
Monitor any change!  Keep track of any symptoms and report to your ecologist.

Visit your ecologist every couple of years, especially after the 5 year mark.  Try to get a CT scan done at the same time for any change and keep all copies.

Keep track of your borderline samples.  The hospitals typically get rid of samples after 10 years without any notice to the patient.  If I requested mine to be kept, it would have been helpful to compare to my new cancer.

Every time you have a surgery (including children c-section), make sure you have an ecologist there to do a quick exploratory.

Live your life!
http://www.medhelp.org/posts/Ovarian-Cancer/Calling-all-Borderline-ladies/show/944426

I found my cancer last year (2008).  We all thought I had a hernia along my incision.  When I went to have it removed, it was biopsied and came back as Well differentiated Serous Carcinoma, low grade and estrogen receptor positive.  I am being treated at MD Anderson.  After reading David M. Gershenson, M.D., professor and chair of the Department of Gynecologic Oncology at M. D. Anderson, I decided to save chemo for a rainy day and try an anti estrogen hormone.
http://medicineworld.org/cancer/lead/3-2008/ovary-less-responsive-to-chemo.html

Louise
***@****

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725998 tn?1258048708
They can't tell definitively if it's cancer just by doing a CT scan.  There has to be a biopsy.  And the size of the tumor doesn't necessarily mean it's malignant.

Most radiologists will put in their report "suspected malignancy" just because they are covering themselves.  Doesn't mean it's true.

Your mother should make an appointment with a gynecologic oncologist as soon as possible.  They will probably recommend surgery in order to determine what it is.

Good luck and keep us posted!
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Avatar universal
HELLO. MY MOTHER WAS JUST TOLD BY HER DOCTOR TODAY THAT SHE HAS OVARIAN CANCER.  AFTER TELLING ME THE STORY SHE COMPLETED IT BY SAYING IT IS NOT DEFINITELY CANCER BUT BECAUSE OF THE SIZE OF THE TUMOR THEY HAVE TO CALL IT THAT.
HAS ANYONE EVER HEARD OF A CANCER DIAGNOSIS AFTER ONLY A CT SCAN AND NO SPECIALISTS?
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Avatar universal
Hi Ladies,

So I had suregry last Tuesday to remove what the Dr thought was a recurrant tumour on my left remaining ovary, he was also planning to remove th ovary... however someone must be smiling upon me as it turned out to be an adhesion so they drained it and i got to keep my ovary!! they did however find new implants on my uterus, I have had pathology results and these are coming back as bordeline as was my initial diagnosis...

the Dr is reviewing my case with his collegues today and then will speak to two fertility Dr's re my situaution to see what can be done about having a baby... I previously saw a fert Dr when I had the adhesion identified and he did not want to do any ivf with the risk of spreading what they thought was a tumor, also I have displayed some menopausal symptoms so he is not sure my ovary is functioning.

My onc is expressing concern... he as told me the recurring implants means the cells are continuing to divide and grow on my uterus and he is concerned these will become a full carcinoma at some stage, he has told me they will most likely continue to recurr until we remove the uterus...

so I have no idea what to do... has anyone else had their Onc express such concern??

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792410 tn?1270315500
I had my tumor tested for hormone receptors and the report came back with the following statement:

"This is a low grade serous carcinoma arising in the background of a borderline tumor.  The section submitted for immunohistochemical stains shows borderline tumor which is positive for ER and PR."

I understand the ER and PR part but does anyone know what "in the background of a borderline tumor" means?  Then there's the ultra confusing phrase "shows borderline tumor."  That totally baffles me.  Is the tumor low-grade or borderline or both?  

Do any of you borderline ladies have any experience with this or know what it means?
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725998 tn?1258048708
Believe it or not, I've met two women over the past couple of weeks who were diagnosed "borderline" (one 11 years ago and one 6 years ago).  The one thing they both had in common was not knowing exactly what kind of tumor they had.  They accepted the diagnosis of borderline because they didn't know there were different kinds.  They both had TAH/BSO and were told their prognosis was "good."  The 11-year survivor is presently not having follow-ups; the other lady goes every 6 months.

Neither of them were debulked by a gynoc so no staging was done.

Talk about tossing a coin in the air and hoping it comes out ok.  As some of you had painfully explained, a diagnosis of borderline is sorely incomplete.  Depending on what you have, you could be looking at a more serious condition in the near future.

I guess I'm just trying to say that information is power.  Always get the details and ensure that a gynoc does the surgery.

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414018 tn?1268611672
sorry mine was also stage 3A
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414018 tn?1268611672
Hi,
I too was diagnosed with LMP borderline serous tumour, LMP added to your diagnosis usually indicates that yes it is not benign and that there is a "low" malignant potential. as for atypical or micropapillary mine was both (im pretty sure) and only your oncologist can tell you that :)

I also had nonivasive implants in my utuerus and abdomen and actually got goose bumps when i read your post on how similar our  diagnosis were. Unfortunately, with ours reoccurences are actually more common than most other borderline cases as we have "extra ovarian disease" or our so called noninvasive impants therefore it is harder to keep it under control and a reoccurence within a year is often seen.

If you want more info  etc please feel free to read my profile or send me a message.
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Avatar universal
according to the dr it is reoccurance... but I guess we never know... he is a good DR tho so I would have thought he would know.

I think I have apst also but I will check my reports its all very confusing! thanks :)
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792410 tn?1270315500
Give a little call over to the doctor's office and ask them to fax you over a copy of your pathology report.  I believe the information is on there plus other useful things you may want to know.
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725998 tn?1258048708
You should ask your doctor to be more specific.  LMP and borderline are used interchangeably (LMP is low malignant potential).  It sounds like you have APST, but only your doctor can confirm.

Are you really having a recurrance or is it that they just didn't get all of it the first time?  If you're in the atypical category, recurrences, especially so soon, are rare.

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Avatar universal
I am confused... I have read that there are different types of borderline tumours however the dx I was given does not apear to be one of them.. I have a serous borderline tumour of LMP stage 3a... I had multiple non invasive implants in my abdomen and uterus.  would I fall into the atypical categoery or the miropapillary section??

if it is lmp does this mean it is not benign???

after only 6 months I have reoccurance and a 2nd surgery date.. doh!
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725998 tn?1258048708
Hi and welcome to this thread.

The most important information will be what kind of "borderline" it is.  You should read the first post.  The type will determine the treatment needed (if any).  "borderline malignant" is kind of an oxymoron (like being a little pregnant).  

It sounds like you will fall into the "benign behavior" category (APSTs, etc.) since your doctor told you not to worry.

And the size of the cyst has nothing to do with the prognosis in this case.  Mine was an APST and it was the size of a grapefruit.

Ask your doctor if he knows what kind of cyst/tumor it was.  You can even give him the list from this thread.  In any event, sounds like he's being thorough and cautious, which are all good things to be.

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Avatar universal
surgery was done @ Victoria General Hospital and yes he's a gyn-oncologist. The results explained above were from the pathology report. Now he's sending it to a cancer reseach facility
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Avatar universal
Michelle,
Normally it takes less than 2 months for a pathology report...where did you do your surgery? was your surgeon a gyn-oncologist?
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Avatar universal
3 weeks ago I had surgery to remove a cyst on my ovary about the size of a small babies head. They also had to remove my right ovary.I went and seen my doc today for a follow up exam. He explained that the cyst was a rarety because inside were borderline malignant tumors he is sending it to a cancer research facility. I'm 29 years old and I have a family history of cancer ( breasts and lungs) My doc said there is nothing to worry about. Ihave to wait 2 months for results from the cancer facility. I guess my question is, is there any other info about this I feel like I've been left hanging. What does all this mean. I am new to all of this and very confused.
I don't know what stage I'm at.
Thanks Michelle from Canada
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414018 tn?1268611672
armidex sorry!
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414018 tn?1268611672
Yes texaz granny was a great help to me, she changes from tamoxifen to aridex every couple of years and has her borderline under control because of it. :)
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792410 tn?1270315500
Thank you so much for posting!  Yes, that is the article I was referring to in my post but didn't put a linky because I'm not good at things like that.  It was that article that got me thinking about my whole treatment plan.  I too believe I have possibly been on chemo unnecessarily.  I won't know until my estrogen receptor+ tests come back.  I wouldn't have  asked for that test to be done if it hadn't been for that article.  Depending on what happens with the surgeon I've been referred to on June 3rd, I'm planning on making an appointment with David Gershenson at MD Anderson.  I want face to face with the horses mouth.  

In regards to every woman diagnosed with low-grade OvCa asking for these tests is a difficult question.  Getting the word out will be hard especially since it only applies to a small number of women with this form of the disease.  I don't really understand why the MD's don't do it routinely for anyone diagnosed with low-grade these days.  Insurance maybe?  I guess it's exactly because of what you said about it being so new a treatment option with no significant literature to back it up as being effective.  I'm going to give significant thought as to how the word could get out.  Maybe a specific website.  

You know what?  This reminds me of something.  A woman who posts here occasionally (screen name Texas Grannie I think)  has controlled her low-grade OvCa for like 15 years with hormonal therapy.  Something like every two years she changes her meds and stays under control.  I'm going from memory so don't hold me accountable for exact info.  It's interesting that her screen name is "Texas" Grannie and also interesting that she's used hormonal therapy for 15 years!  So how new is this treatment and I wonder if she sees David Gershenson?
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107366 tn?1305680375
COMMUNITY LEADER
I feel like I should have been paying closer attention to this thread, so tonight, I had a look at all the posts.  First let me say thank you to everyone who has posted.  I really think the whole idea of low grade cancer being treated differently is a new enough that most doctors don't take a serious look at it.  When I was first diagnosed, I was IIIC, epithelial serous adenocarcinoma.  Like many of you, I had  6 rounds of Taxol/Carboplatin, and went into clinical remission.  A year and 4 months later, my recurrance was found, and it was back on Taxol/Carboplatin.  By chance, I had an allergic reaction to Carboplatin, so I moved to Topotecan.  That didn't work, so then it was Gemzar, then Navelbine and Gemzar, then Taxotere and Gemzar, then Taxotere alone.  

During all this, when nothing was working, I decided to get a second opinion at MD Anderson.  I had only just begun reading some of the info out there regarding estrogen receptor positive cells and low grade cells which was only by chance.  I was looking into clinical trials at the Shands Center in Florida, and that was one of the questions they asked me.  I had no clue what they were talking about, so I researched it.  I asked my original Oncologist what mine were.  I found out those tests hadn't been done, so I had my slides sent from both my original diagnosis, and my recurrance (which was found during gallbladder surgery, so samples were taken then, too) to MDA and specifically asked for those tests.  That's when I found out my recurrance was low grade, and highly estrogen positive.  The theory is that upon original diagnosis, I had both high grade and low grade cells.  Initial chemo killed the aggressive cells, and it just took 16 months for the low grade cells to make their appearance.  At that point, no chemo was going to work.  So, I essentially had 9 months of chemo that wasn't needed.  The Oncologist here at home who was giving me all the chemo didn't like another doctor, especially one at a prestigious cancer hospital, telling him how to handle my case.  He tried to tell me that the chemo kept the aggressive cells at bay, but I don't believe that's true.  If it were, they would still be growing, but my last two CT Scans have shown I am stable.  So, I did what I wanted to do for a long time, and "fired" my local doc.  I still go for port flushes, but that's all.  My doctor at MD Anderson now has my treatment plan.  So, since September of 2008, I fly to Houston every three months for testing.  I leave two weeks from today for my next round.    

My Oncologist at MDA has had me on the anti-estrogen therapy Aromasin for a year now.  I cannot take Tamoxifen because of the risk of blood clots.  I tried Femara first, but it also did not agree with me.  So, we went with Aromasin, which does seem to be doing the trick.  Because anti-estrogen therapy for Ovarian Cancer is relatively new, there aren't really any studies out there showing how effective it really is, and for how long remission can be acheived with it.  So, the plan is to continue taking it until it is no longer effective.  If that happens, I will move to Arimidex.  

Here's a couple more things of note I want to mention.  One is an article By Dr. David Gershenson at MD Anderson (this might be the same one Ramsay14 cited in her post on this thread on May 19) I recommend all of you read.  Here's the link:

http://www.mdanderson.org/news-and-publications/news/2008/recurrent-low-grade-carcinoma-of-the-ovary-less-responsive-to-chemotherapy-than-more-common-ovarian-cancers.html    

The second thing is really a question, I guess.  How would you all suggest we go about making sure all women who are diagnosed know to ask about having these tests done?  Even though only a small percentage of women are estrogen receptor positive and low grade, it could help those who are not have to go through worthless chemo and lots of time if this were diagnosed at the start.  That 9 months of chemo I had that I didn't need put me in the hospital several times, and caused lung damage that required surgery to insert a filter in my vena cava, and had me on oxygen twice.  I don't want anyone to have to go through that who doesn't have to.  

Thanks again for your posts. I am still digesting all the info here, but I will be back to continue reading.  

Gail
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135691 tn?1271097123
Thanks very much...I get the results of my MRI Tuesday morning and to say I'm nervous and anxious would be a major understatment. I hate what these scans do to you - they make me crazy! Last time, my cancer had progressed ever so slightly so I'm hoping this time it's unchanged...
I also hope the surgeon is happy with whatever he sees...I won't know about that though for at least a couple of weeks.
Finger's crossed...
Becky
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