I have just had a large ovarian cyst (30 x 25cm) removed along with my left ovary and fallopian tube. My consultant said that he didn't think it looked cancerous . They sent it away and my ovary for tests. I went to see him for the results and was told that it was borderline and they couln't tell me if it was more benign or mallignant. It has had to be sent to somewhere else for further investigation.
Has anyone else been told of borderline cancer? I don't know what to make of it.
My consultant has told me I will have to have a hysterectomy but when depends on what they find and I may need chemo.
I am going back next week for the results but I am really worried, I don't understand why the tests don't show what it is.
Border line cancer is also called Low Malignancy Potential cancer. -http://www.nci.nih.gov/cancertopics/pdq/treatment/ovarian-low-malignant-potential/patient#Keypoint2
Strongly recommend seeing a good gynecological oncologist for evaluation and follow up.
I was diagnosed with Borderline Tumor in August and based on what I had read about mis-diagnosis of the borderline tumors (which is neither benign or full malignant), I had my path slides sent for 2nd opinion. Second opinion confirmed borderline diagnosis, but 2nd gyn onc likes to do frequest follow-up (especially sice I have family history of early on-set colon cancer). She explained how LMP or borderline tumors are different than either full malignant and true benign, in that they grow slow and are less invasive. She did say there is about a 20% recurrance rate and recurrances can often present as full malignant, so she definately likes to keep an eye on them. She also says that if you are NED with malignant cancer for 5 -7 years, then you can relax alittle, but with LMP they often recur at 10 , 20 or more years, so need to monitor your whole life.
She pans to do CA-125 every 4 months for 2 years, then yearly. They did a CA-125 at this visit and it is down to 8.6 from 388 pre-surgery.
Since I had extensive endo, she wants me to stay off HRT as long as possible, but indicated CA-125 can help us monitor the endo and use of HRT.
Thanks for your post and the info. I am also facing LMP. I had surgery in 05 for removal of the only ovary and the cyst. The CA125 never went higher than 4 and there were a few pre-cancerous cells. 5 rounds of Cisplatin and Taxatere. Did fine until March 07 when the CA125 started rising. Also Acites. Completed 6 rounds of Carboplatin. CA125 came down to 85 and started going up with the latest number at 115. CT scans do not show any major problems. Will be seeing another senior Gyne Oncologist at MD Anderson for 2nd opinion.
The LMP diagnosis is very confusing. Some doctors and articles basically consider it benign and others do not. As for me, my first gyn onc who is an excellant surgeon and apprently failrly well know in gyn onc circles, does not believe in much follow-up and I was not comfortable with that since my brother and mothers family has extensive history of early onset colon cancer.
Since you did not have TAH/BSO/LND initially, you need to be especially carefull.
Was this intentional, because you wanted to keep fertility, or did you doctor not suspect potential cancer?
I am glad to see you are going to MD Anderson, they specialize in LMP as does John Hopkins.
As far as I am concerned, I am not trying to make something of nothing, but I am sure not going to wait around to become a statistic. Better safe then sorry.
Here is an interesting article.
I am post meno and the other ovary was removed a long time back when I had hysterectomy. This seems to be a tricky problem and there is not enough research for establishing a norm. I do follow John Hopkins also for info. Thanks.
Thanks for all the info. I have looked on the websites and found them really interesting.
I just want to know what my results are now, you try and diagnose yourself don't you but I suppose until you know what stage you are you can't. At the moment I am expecting the worse but suppose thats natural.
I haven't had my CA 125 done since my op but before it was 232.
Jlyer what is Cisplatin and Taxatere, are these tablets or is it a form of Chemo? Also have you both had hysterectomies?
Did a Gyn Onc do your first surgery? If not you need to get to one ASAP and have one review your surgical and pathology reports. You should request these from the hospital where the original surgery was done. This is very important.
Do you know how to find a gynecologic oncologist? They are experts at diagnosing and treating tumors and cancers of gynecologic nature. You need to make sure it is not full malignant and that it has not spread.
Yes, I had complete hysterectomy (TAH/BSO/LND) on Aug. 13 '07. They did frozen path during surgery and determined tumor was LMP. So gyn onc did pretty much complete sampling of omentum, lymph nodes, pelvic wash, to determine if tumor cells had spread, which they have not (thank God!). This is recommended surgery, unless you want t preserve fertility, then they can remove only the diseased ovary.
Are you seeing a Gyn Onc?
Hi Jo33, you should see if you can get a copy of your pathology report. Casey is right the borderline pathology is a tough one - make sure to get a second opinion from a gyn-pathologist. There are two kinds of Borderline ovca - one is LMP and the other is MPSC. LMP rarely if ever returns and doesn't require chemo. MPSC is more agressive and rarely responds to chemo.
You should also get a referral to a gyn-oncologist.
I was diag. with LMP borderline ovarian cancer stage 1 in 2002 at age 33. Drs did't think it was cancer but I had a frozen section pathology and it indicated borderline ovarian cancer. It was recommended when I was ready to have a hysterectomy. I opted for it a year and a half later. Now a days for LMP drs don't often recommend a hysterectomy. I thought better safe than sorry.
I hope everything goes well for you and know how confusing this is for you.
Take care and let us know how you make out.
Yes i'll let you know I am going to see my consultant on Thursday so only 2 days to go.
I am 33.
It is a gyn onc that i am seeing and was that did the op too.I had not heard of MPSC, so if chemo dosen't work on that is there nothing they can do for that type?
MPSC is a rare type. They often still use chemo and/or surgery as treatment. Chemo isn't very effective on slow growing tumors and borderline tumors are slow growing.
Glad to hear you are seeing a gyn-onc.
Hi been to the hospital today to see an onclogist for my results, just thought I'd let you know what they said.
Basically they still don't know 100% what it is, the tests are still coming back as borderline. The tumor was a mucus producing tumor (urgh) and they found some of this mucus in the tissue they took from my stomach which isn't normal but he didn;t really elaborate on that too much. Does anyone know what this could possibly mean?
They are saying it is something called a well defferentiated cancer which they think was confined to the ovary & cyst. Ive since looked on the internet to see what it means and its basically a low grade cancer or a borderline cancer.
They are just going to monitor me for now with CA125 & CA19 -9 blood tests for tumor markers and CT scans, they hope to see my tumor marker results start to come down now if they don't i will have to have chemo, but they are going to monitor this over a period of time. They are not sure if any of the fluid from the cyst may be hiding somewhere inside me.
They have said that if I want to have kids it is something I need to do now but think I might wait for the internal stitches to heal first! Then the hysterectomy will follow after that.
I feel more positive now but don't want to think that everything is OK like I did last time until I've been back to see if my scan is OK and my bloods results are starting to come down.
I was also diagnosed with a seromuconous borderline tumor. I also had mucous in the abdominal cavity that was sampled by doctor and sent to cytology and mine had no sign of malignanacy in the fluid. You need to find this out. Get a copy of the complete pathology report from your doctor and ask him this in particular. Also, I had read and was told to get a second opinion on the tumor and the fluid or pelvic wash, because sometimes (approx. 10%) origninal pathology is wrong with borderline tumors. They say to find a path lab that is very familiar with these borderline tumors (like a major cancer center).
If the pelvic wash or mucus from abdomin is indeed clear of borderline cells, this is very good and you have stage 1A LMP tumor and no further treatment is necessary, just follow-up with CA-125.
If pervic wash is positive for questionable cells than they may consider chemo.
All and all an LMP or borderline prognosis is excellant (99%-89% five year survival) relative to full malignant OC.
2 years ago my wife had an ovarian cyst (15cm) and we were told it was borderline, she had the cyst and right ovary removed. The question is' she had a followup one month after the operation and was given the all clear.
No other follow up appointments were given or advised. she now has Ovarian cancer and is about to undergo a full Hysterectomy and chemo will follow after.
Have the hospital Gynae team, or someone made a fundamental error here by not given her 6 monthly /yearly follow ups, scans etc.
They have only told us she is very very unlucky to have developed this after the intial surgery.
Most borderlines follow the same protocol as later staged cancers, for the first 2 years appts are every 3 months, and then years 2 to 5 every 6 months.
There are many doctors that will tell you that borderline will not develop into full blown cancer and others that will disagree. It could be that the cancer was already in the other ovary at the time....who really knows.
Right now I would concentrate on getting her through the surgery and through the chemo. After sugery she will be staged and the doctors might have more answers to your questions.
Be certain that her surgery is preformed by a GYN/Oncologists and don't be afraid to ask the doctors questions.
Best of luck to both you and your wife, keep in touch and let us know how it goes. There are people on this forum that are a wealth of knowledge and can help you and your wife through this. You will get better responses if you start a new post, vs adding to one that is a few old.
I had a hysterectomy on January 29, 2009 due to a 10cm mass on my ovary. It wound up to be an "atypical proliferating tumor" also known as "borderline."
My doctor, who is a nationally known gynoc, told me it is NOT cancer. This is based on years of watching these types of tumors. He said years ago it was considered cancer and treated as such until they learned that it doesn't behave like cancer and that the usual cancer treatment did more harm than good. My treatment is 6 month follow ups probably for the rest of my life.
There's a 3-4% of recurrance, usually in 20+ years, and the treatment would be the same -- removal of the mass.
The cancer could have come independently from another source. I wish your wife the best with her treatment.
Hi to both of you and thankyou for your reply and support.
Unfortunatly my wife has bcome extremly unwell, after around 7 weeks of waiting we now have the results of her condition.
She has a later stage of cancer and has since had blood clot to both lungs where i almost lost her, her age of 39 may have help her to survive this. but before her condition got worse we were in and out of our local Hospital in Huntingdon England which had made a catologue of errors and in the en were reluctant to take her back for another asites drain. Since this she is now in the hands of Addenbrookes in Cambridge and I feel they are now picking up the pieces from Huntingdon.
Addenbrookes are leaders and experts in cancer cases and I now have every confidence in them to make her well again.
She has now started Chemo instead of the pre planned hysterectomy to suppress the cancer so that she can become strong enough for surgery at a later date.
This is all because she was left suffering for too long from the imcompetence of our local hospital and should have refered her to Addenbrookes sooner, as they admiited to me they could not do anything for her but just sent her home with nutri drinks and a bag full of pills and in an agonising condition.
The cancer has been there for months but much of the terrible pain could have been avoided had she been able to have the surgery first and sooner.
I wish you the best in your future treatments. Just always remember to have your family doctor recommend a gyncological oncologist to deal with these issues, They are the experts in the field. Research has proven that women are more likely to recover successfully when a gyno oncologist is at task, rather than an oncologist. do you get Ca125 tests and ultrasound done every 3 months? eventually CT scan, too?
Thanks for your best wishes. The doctor who did my surgery is a gynecological oncologist, one of the best in the field. Since my tumor was Stage 1 (which, according to my doctor and everything I've read, act like benign tumors), no further treatment was necessary. And because I had a complete hysterectomy including removal of both ovaries, fallopian tubes, omentum and lymph nodes, he said 6 month follow-ups are fine.
I don't understand how we have two different posts stating different recurrance rates in borderline. From 3-4% in 20 years to 20% and "often present as full malignant". This is why this tumor is so confusing. Even the professionals cannot agree. I think we all have to do our own due diligence and not take for granted that our physcians know all the facts. My surgeon also said low recurrance rate and he has never seen one recur in his practice. However, on this and other listerves, I see recurrences all the time. Are these recurrances women who were not diagnosed correctly in the first place?
These are just questions that keep going trhough my mind.
My doctor told me that he also has not seen a recurrence in his 30 years of practice. He said he believes that women who have recurrences in the first couple of years after surgery, or whose cancer turns invasive, were not diagnosed correctly. That's why he did a full staging during my surgery. He took samples of everything (stomach, colon, pancreas, lumph nodes, etc., etc.) and sent the samples out for a second opinion. Borderline malignancies and other malignancies can exist together.
Sometimes I wonder if recurrence happens more often in women who didn't have a hysterectomy/BSO.
My 18cm ovarian tumor was also called Borderline after surgery (don't know if LMP or MPSC or ?), yet I was also told "it IS cancer" and it was staged as Stage IV Ovarian Cancer, with infiltrates found in the lungs via a bronchoscopy and lavage -- some abnormal cells were found in the lung washings, but I was told they couldn't definitely be diagnosed as ovarian cancer cells; it is just presumed that they are. This is all very confusing! My surgeon is a gynecologic oncologist at Johns Hopkins, so I feel like she and the pathologists are probably on top of their game. The surgery was a full hysterectomy/oophorectomy and debulking of the tumor, and the surgeon also removed the omentum and the appendix.
What does MPSC stand for, and where can I find out more about that kind of Borderline tumor? Also, what does TAH/BSO/LND mean? I can figure out that BSO is "bilateral salpingo-oophorectomy" but what's the rest of it? I'm not up on all these acronyms!
A pulmonologist I saw last week said that having abnormal cells in the lungs means the cancer is in the lymph system, since that's how the cells got to the lungs, but no one has said anything about testing lymph nodes. Should I be asking someone about that? The gyn-onc? I'll see her for a check-up in about 3 weeks.
Thanks for all the info you've shared! This forum is a great resource!
The surgeon takes out lymph nodes during the surgery. If you are stage IV your lymph nodes tested positive for cancer. Maybe LND means Lymph Node Dissection. You can ask your doctor for a copy of your Pathology Report from the surgery and it will give you all the information you need to know about the extent of your disease and your exact diagnosis.
I can't stress enough how important having a ca-125,cea and ct scans done every three months. Also have gyn. oncologist perform your hysterectomy. I also had a borderline tumor and I went to MD Anderson for a second opinion and they agreed with my doctor that I needed to have ct-scans, ca-125 and cea tests performed every three months even though they didn't think it would ever come back but it did. Thankfully because I was being monitored so closely the recurrence was caught early. I don't want to scare you because you may never have a recurrence. I think it is safe to assume that the women who also had borderline tumor but never had a recurrence are not active on this message board, so you won't hear from them. So don't let our stories alarm you. Julie
grrr! once again people should not say borderline is not cancer or that it may not turn to cancer i am living proof!
stats vary according to stage and if there are noninvasive implants or invasive implants as well. only 4% normally turn invasive and thats within 7-10 years even less! If borderline is diagnosed at stage 3 or 4 there is then a 30% chance it may turn invasive!
mine was also staged correctly each time by two different hospitals. personally i know plently of women whos borderline reoccurs the rate is quite high for stage 3 and 4 victims with implants as it has already started spreading, completely different to stage 1 or 2 borderline. Stage one borderline has nearly a 100% survival rate and low reoccurance but that is not the same for later stages of borderline. you must remember having additonal implants to the original tumour is an important factor.
It's always important to know what kind of borderline tumor you had, not just the stage.
For example, a borderline Atypical Proliferating Serous Tumor (APST) behaves relatively benignly. In contrast, a borderline Micropapillary Serous Tumor (MPST) is usually designated as a micropapillary carcinoma because they can be associated with invasive peritoneal implants and behave more like low-grade cancers than other borderlines. My gunoc explained that he would treat a micropapillary tumor much differently than another type of borderline tumor. I really think you should ask what kind you have.
This is a complex field and doing as much research as you can is beneficial. And always ask your doctor. For most borderlines, 3 to 6 months follow-ups are sufficient. Not all borderlines are alike.
Thanks for the info. I don't know why I didn't ask for the pathology report already, but I haven't! I'll do that when I see my gyn-onc this month. All these different types of tumors, which behave so differently, are very confusing. I want clear-cut answers about what kind I had and the specific prognosis for that type of tumor. I'm normally the sort of person who wants to learn as much as I can about things that impact my life, but in the case of cancer, I've had my head in the sand a bit. Very uncharacteristic! I've just started to ask these important questions, since joining this forum. I have a lot to learn!
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