Aa
dermoid turns out to be borderline mucinous ovarian tumor
i had laparoscopic surgery last month to remove a 6.5 cm mass which the radiologists and my gyno surgeon thought was certainly a dermoid. the pathology revealed otherwise - it was a borderline mucinous ovarian tumor. my right ovary and fallopian tube were also removed, but because they didn't suspect cancer (although i certainly had a gut feeling it wasn't entirely clean), my surgeon didn't do a peritoneal wash. thankfully she DID handle the thing very carefully in a bag. i've just received the 2nd opinion pathology which confirms the diagnosis. i see the gyn/oncologist this week. i insisted on having a copy of the path report, but was disappointed to find no detailed description of the microscopic findings, just the diagnosis. the gross description (the appearance to the naked eye) was quite detailed. has anyone else ever seen so little of the microscopic findings in their pathology report? i am frustrated waiting to see the gyn/onc to get more info - i had hoped to do some research of my own with the info from the report. damn. better start cultivating more patience. waiting for answers, waiting for an appointment, waiting for surgery is the worst. anyone else have experience with borderline mucinous ovarian cancer?
I had a 16 cm growth on my right ovary, which the radiologists thought was a dermoid cyst. I had surgery 1 month ago and was told it was a benign mucinous cyst and they removed one right ovary and fallopian tube. Now , pathology report says it s atypia and I need more surgery to have a complete hysterectomy and to remove my appendix. I have to meet with gyn/oncologist in near future to book surgery, but why are they taking appendix. Janice
thank you so much, Danielle and grateful! i would have posted responses sooner, but had to deal with a family emergency. wow - this borderline tumor discussion has really heated up! i just wanted to conclude this thread with thanks and i will post additionally to grateful's latest two posts. again - thank you both for helping this here stranger by sharing your thoughts and experiences with me.
hello Nat - please pardon my exclusion of you from my previous post of thanks! a momentary oversight on my part. sorry. thank you for sharing your experience and thoughts with me. it helped. may the remainder of your chemo treatment go as pleasantly as possible. thanks for taking the time to share.
Hi again, just as I wrote what I know, I saw that Dr. Goodman answered my questions on borderline tumors yesterday, this is on the linked Ovarian Cancer Answers forum.
She is not saying this is just flat out benign, so read her answers, I find I relate a lot to her ability to "teach" us, and this is just online. So frankly, if you have any way of seeing HER, it would be a real great thing. But since you and I are on the west coast, that is unlikely.
In any event, great info from her to help us sort this issue out.
She is not saying this is just flat out benign, so read her answers, I find I relate a lot to her ability to "teach" us, and this is just online. So frankly, if you have any way of seeing HER, it would be a real great thing. But since you and I are on the west coast, that is unlikely.
In any event, great info from her to help us sort this issue out.
Hi,
I had a 25cm mucinous ovarian tumor removed at the end of April this year. The frozen section came back as borderline, the intial pathology came back as borderline and then the final pathology came back as malignant. They took three weeks to do the pathology as the cyst was so large and what they ended up finding was a 0.8 of a mm spot of malignancy within the ovary. I was staged 1c because the cyst had ruptured in one area - I'm not sure they would have done such extensive pathology had the cyst not ruptured. So yes they did a very detailed microscopic analysis - although I have never seen the actual report, the Dr passed on the information. I'm having 6 cycles of carboplatin chemo now to be on the safe side. I'm not sure how much this will help you, but hope it gives you a little more information on how these cases are handled.
I had a 25cm mucinous ovarian tumor removed at the end of April this year. The frozen section came back as borderline, the intial pathology came back as borderline and then the final pathology came back as malignant. They took three weeks to do the pathology as the cyst was so large and what they ended up finding was a 0.8 of a mm spot of malignancy within the ovary. I was staged 1c because the cyst had ruptured in one area - I'm not sure they would have done such extensive pathology had the cyst not ruptured. So yes they did a very detailed microscopic analysis - although I have never seen the actual report, the Dr passed on the information. I'm having 6 cycles of carboplatin chemo now to be on the safe side. I'm not sure how much this will help you, but hope it gives you a little more information on how these cases are handled.
University of Michigan. That is supposed to be one of the big cancer hospitals in my area, however, Grand Rapids, Michigan is fastly becoming one of the new cancer treatment areas in Michigan in which advanced procedures and treatments are performed.
I see I typed that funny! Can you tell I am not an alumni? Anyway, Hope all is well with you.
Sincerely,
Danielle
I see I typed that funny! Can you tell I am not an alumni? Anyway, Hope all is well with you.
Sincerely,
Danielle
Yes, I live near Portage (Kalamazoo), Michigan in Pavillion Township. I am about two hours away from you. My brother lives in Mount Clemens.
How funny, small world. I know women are here from all over the world, yet there are us two from little ole Michigan. How are you doing by the way? Tell me your story. I hope you are well!
Danille
How funny, small world. I know women are here from all over the world, yet there are us two from little ole Michigan. How are you doing by the way? Tell me your story. I hope you are well!
Danille
Without going in to my whole story, I just had my second borderline muconous cystadenoma removed, along with the ovary that it was contained in.
If you research by googling, you'll be horrified at the old research, they just didn't know much about these tumors. One report that had me in a tailspin said that the survival rate after 10 years was 60%.
The truth is that it is 100%.
What I hang my hopes on is that my doctor who is very revered (Fred Hutchinson huge cancer clinic - Seattle) has said the data does not even support having a full hysterectomy after this. Only less than 1% of these tumors will become cancerous, that is the same as fibroids and dermoids and really just the average statistic that any cyst/tumor could be cancerous. Since they can reoccur, and if you are OK with the idea of surgical menopause and are done child bearing, and feel more comfortable cleaning those organs out of there, then do so. I probably will when/if another reoccurs or when I am through menopause. I chose to keep the organs that are now healthy, my left ovary/tube, uterus.
She said that the data does not support even calling this a cancer because it is benign when removed, and there is an overwhelming probability that it will remain benign, and there are not even Stage 2,3 or 4 borderline tumors EVER. (speaking of my tumor type only) This is because the borderline tumors that are staged as later, are really not primary ovarian tumors but originated elsewhere, like the colon.
So you should, based on her opinion, feel very comfortable that your cross to bear right now is to be WATCHED closely, and to surgically remove these tumors as they develop, if they develop. You do not have cancer.
Just FYI . . .the first one was burst in my abdomen (by my OB/GYN) during c-section, and this has haunted me, but I'm more relaxed that this is manageable, and I did just have my appendix, ovary and tube removed (they an reappear in the appendix) and I'm going to be watched closely, so this is all I can do right now.
I would definitely go to the Johns Hopkins site and read the pathologist view of borderlines. They are supposed to be the leading edge pathologists on borderline tumors, and they say that this tumor should NOT be called borderline, that they are benign, and act benign, and the borderline tumor category should be eliminated.
Now, this is not the same information as other women have received. Some actually say they have "borderline ovarian cancer" and some have had full hysterectomy and consider themselves cancer survivors. I know that is what their doctors have told them, and that is their reality. To me, it just makes me confused. I just want to ask my doctor again, "Did I have cancer or not?" But she has answered it while holding my hand and looking in my eye, "NO, this is benign!"
Since I find it all confusing, I would appreciate sharing information with you, if you should find out any different information in Oregon. We are neighbors! :)
I think the discrepencies with the borderline category is simply because there is not enough research on these tumors, and the old research certainly doesn't match the newest, so it depends on who you talk to, what information you'll get.
I would really press your doctor, as I aim to, on getting studies we can read ourselves, and I am going to ask about getting a second opinion from Johns Hopkins, as they seem to be soliciting for samples, to do more research.
One thing I know with our tumors is that they are slow growing, chemotherapy would never be an option, because chemo targets the fast dividing cells, and would not affect these tumors. However, if they rarely are cancerous, that is not an issue. Surgery is the cure for them.
My next question for my doctor will be: what organs will this likely show up in, so I can make sure I'm watched. Does it stay confined to the abdomen or would cells migrate to other organs (like brain or lung) especially in my case where it was ruptured in my abdomen.
Good luck to you, share what you find out please! And today, consider yourself very lucky, because you are, this could be so much worse.
If you research by googling, you'll be horrified at the old research, they just didn't know much about these tumors. One report that had me in a tailspin said that the survival rate after 10 years was 60%.
The truth is that it is 100%.
What I hang my hopes on is that my doctor who is very revered (Fred Hutchinson huge cancer clinic - Seattle) has said the data does not even support having a full hysterectomy after this. Only less than 1% of these tumors will become cancerous, that is the same as fibroids and dermoids and really just the average statistic that any cyst/tumor could be cancerous. Since they can reoccur, and if you are OK with the idea of surgical menopause and are done child bearing, and feel more comfortable cleaning those organs out of there, then do so. I probably will when/if another reoccurs or when I am through menopause. I chose to keep the organs that are now healthy, my left ovary/tube, uterus.
She said that the data does not support even calling this a cancer because it is benign when removed, and there is an overwhelming probability that it will remain benign, and there are not even Stage 2,3 or 4 borderline tumors EVER. (speaking of my tumor type only) This is because the borderline tumors that are staged as later, are really not primary ovarian tumors but originated elsewhere, like the colon.
So you should, based on her opinion, feel very comfortable that your cross to bear right now is to be WATCHED closely, and to surgically remove these tumors as they develop, if they develop. You do not have cancer.
Just FYI . . .the first one was burst in my abdomen (by my OB/GYN) during c-section, and this has haunted me, but I'm more relaxed that this is manageable, and I did just have my appendix, ovary and tube removed (they an reappear in the appendix) and I'm going to be watched closely, so this is all I can do right now.
I would definitely go to the Johns Hopkins site and read the pathologist view of borderlines. They are supposed to be the leading edge pathologists on borderline tumors, and they say that this tumor should NOT be called borderline, that they are benign, and act benign, and the borderline tumor category should be eliminated.
Now, this is not the same information as other women have received. Some actually say they have "borderline ovarian cancer" and some have had full hysterectomy and consider themselves cancer survivors. I know that is what their doctors have told them, and that is their reality. To me, it just makes me confused. I just want to ask my doctor again, "Did I have cancer or not?" But she has answered it while holding my hand and looking in my eye, "NO, this is benign!"
Since I find it all confusing, I would appreciate sharing information with you, if you should find out any different information in Oregon. We are neighbors! :)
I think the discrepencies with the borderline category is simply because there is not enough research on these tumors, and the old research certainly doesn't match the newest, so it depends on who you talk to, what information you'll get.
I would really press your doctor, as I aim to, on getting studies we can read ourselves, and I am going to ask about getting a second opinion from Johns Hopkins, as they seem to be soliciting for samples, to do more research.
One thing I know with our tumors is that they are slow growing, chemotherapy would never be an option, because chemo targets the fast dividing cells, and would not affect these tumors. However, if they rarely are cancerous, that is not an issue. Surgery is the cure for them.
My next question for my doctor will be: what organs will this likely show up in, so I can make sure I'm watched. Does it stay confined to the abdomen or would cells migrate to other organs (like brain or lung) especially in my case where it was ruptured in my abdomen.
Good luck to you, share what you find out please! And today, consider yourself very lucky, because you are, this could be so much worse.
The reason I asked, is because I live in that area, U of M, Ann Arbor, and was curious if you lived nearby. :)
Hi again. Thanks so much for sharing. My tumor was a 13cm tumor which was contained in one ovary. I was staged 1c because the tumor burst in my abdomen. When my OB-GYN surgeon saw it he thought for sure it wasn't cancer. He took it out and it burst. My washings came back clear however, I woke up to "Danielle you had a complete hysterectomy and it was cancer". I haven't been the same since. I lost all of my innocence as far as living forever is concerned...and thus, my story began.
That surgery was on July 25, 2005. As I am approaching my one year from diagnosis, I am having to take all of the other tests again and am scared. I should get my results back on Monday, but I believe I am still clear. I have a wonderful Gynecological Oncologist and had a new procedure called intraperitoneal hyperthermic Chemotherapy. I only had this surgery becuase the cancer burst in my abdomen. This treatment might actually been a bit more aggressive than it would have been had my cancer not burst (my ob-gyn surgeon, with tears in his eyes apologized for allowing it to burst, he said it never should have happened. Bless his heart, what a wonderful doctor!)
I am physically doing fine, the second surgery was the Ovarian Cancer Staging and that was way more difficult than the hysterectomy. They did the Ovca staging with the IPHC, a ten hour surgery so it was tough. I woke up with 7 incisions and puking. Ouch, it was because of the chemo, I am sure, I never get sick off of anesthesia.
Long-Story short...I am doing well. Monday I will know for sure. In my opinion you have two things going for you. One - It is borderline, Two - it's mucinous, most often caught early. I have faith you will be fine. Do what your gynecological oncologist tells you and by all means get a second opinion.
I was sent to the best gynecological oncologist in my area and I still went for a second opinion. It is your body and your life. I called my insurance company and they did cover second opinions so I did it. I went to the U of MI to the Head Gynecological Oncologist and chose to have my surgery done instead by the original ob-gyn I saw.
Keep us posted on your progress and your surgery date.
Danielle
That surgery was on July 25, 2005. As I am approaching my one year from diagnosis, I am having to take all of the other tests again and am scared. I should get my results back on Monday, but I believe I am still clear. I have a wonderful Gynecological Oncologist and had a new procedure called intraperitoneal hyperthermic Chemotherapy. I only had this surgery becuase the cancer burst in my abdomen. This treatment might actually been a bit more aggressive than it would have been had my cancer not burst (my ob-gyn surgeon, with tears in his eyes apologized for allowing it to burst, he said it never should have happened. Bless his heart, what a wonderful doctor!)
I am physically doing fine, the second surgery was the Ovarian Cancer Staging and that was way more difficult than the hysterectomy. They did the Ovca staging with the IPHC, a ten hour surgery so it was tough. I woke up with 7 incisions and puking. Ouch, it was because of the chemo, I am sure, I never get sick off of anesthesia.
Long-Story short...I am doing well. Monday I will know for sure. In my opinion you have two things going for you. One - It is borderline, Two - it's mucinous, most often caught early. I have faith you will be fine. Do what your gynecological oncologist tells you and by all means get a second opinion.
I was sent to the best gynecological oncologist in my area and I still went for a second opinion. It is your body and your life. I called my insurance company and they did cover second opinions so I did it. I went to the U of MI to the Head Gynecological Oncologist and chose to have my surgery done instead by the original ob-gyn I saw.
Keep us posted on your progress and your surgery date.
Danielle
Danielle - i just read your posts from 7/20 and thought i'd tell you there's no need to answer my inquiries from this post about your current health status. i will look for your upcoming post re: your test results. i will pray that you get them mercifully soon and that they are 100% normal. very sorry to hear about your sister. i am in a similar situation with my sister too. thanks again for your input. stay strong.
thank you for responding, Danielle. how did your cancer manifest? was it a single tumor on one ovary? i am assuming you had a total hysterectomy in addition to the chemo. was your surgery/treatment effective? i hope it was and that you are enjoying good health now. i am indeed grateful that i am only dealing with the borderline variety and that i may not need chemo - "just" a total hysterectomy and probable lymph node dissection. i am finding it difficult to relax with this diagnosis so far, however, because of having been so recently surprised by the dermoid turning out to be something else. it's very tricky to want to put your faith in your doctor's assessment of your case, but somehow be simultaneously waiting for the other shoe to drop. what a lesson in learning to accept the the status of not knowing...of the unknown. fortunately, i have found an excellent gyno/oncologist at the Oregon Health and Sciences University - a place known for excellence in oncology. anyway, thanks for sharing your experience with me. i hope you're doing well now.
I had mucinous ovarian cancer, but mine was not borderline. I was treated differently because the tumor was mucinous. My chemotherapy agent was Mitomycin C (most colon cancers are mucinous and mitomycin c is a chemo agent used most commonly in colon cancers).
My pathology was done at the hospital but they could not determine whether it was colon cancer or ovarian cancer because it was mucinous. The hospital sent the pathology to The Cleveland Clinic and they stated it was primary ovarian.
I know this about Mucinous Ovarian Cancer (Not sure about borderline but assuming the characteristics could be the same):
Mucinous Ovarian Cancer is caught early around 60% of the time compared to Serous Ovarian Cancer (Serous is the most common form of ovarian cancer, mucinous is rare)
My cancer was non-metastatic I am not sure if that is a normal characteristic of Mucinous or not. I am assuming so that is why it is more often caught early.
Please make sure you have a good gynecological oncologist and you get a second opinion. I will be thinking about you.
Danielle
My pathology was done at the hospital but they could not determine whether it was colon cancer or ovarian cancer because it was mucinous. The hospital sent the pathology to The Cleveland Clinic and they stated it was primary ovarian.
I know this about Mucinous Ovarian Cancer (Not sure about borderline but assuming the characteristics could be the same):
Mucinous Ovarian Cancer is caught early around 60% of the time compared to Serous Ovarian Cancer (Serous is the most common form of ovarian cancer, mucinous is rare)
My cancer was non-metastatic I am not sure if that is a normal characteristic of Mucinous or not. I am assuming so that is why it is more often caught early.
Please make sure you have a good gynecological oncologist and you get a second opinion. I will be thinking about you.
Danielle
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