Confusion about borderline and what to do.

I am 40 years old and I was diagnosed with ovca January 2010 after my OBGYN misdiagnosed me despite ultrasound and CA125 levels of 171 with having just a cyst. In January I had a laparoskopy done to remove the cyst and thats when they found the cancer. The doctors closed me up and 3 weeks later a gyn/oncologist performed the surgery and I had a total hysterectomy (including ovaries, fallopian tubes, womb and cervix), removal of omentum, apendix, lymph nodes, and various metastasis in the diaphragm, and peritonal cavity. Optimal debulking was archieved. I was staged IIIc. CA125 dropped to 25 after surgery. After 3 rounds of carboplatin/taxol my CA125 is down to 7.

I am confused about various things regarding my cancer:

1. My doctor and the surgical pathology report say that I have "low grade ovarian serous carcinoma arrising in a background of papillary serous borderline tumor" Under the type of tumor it says epithelial, serous carcinoma. What does that mean?What is my chance of not having recurrence or survival?

2. Did I do the right thing to have a total histerectomy? I really wanted a baby. Could I somehow have done something different besides this radical surgery and had a baby?

3. I had round 3 of 6 rounds of chemo. My doctor at UCSF Helen Diller Cancer Center wants me to go on a trial for Pazopanib after I am done with my initial chemo. The confusing part is that the doctor told me if I only had borderline, I didn't need to do any chemo and I only went on chemo because I had the low grade in the background of borderline.
Does it make sense to go on the Pazopanib trial for a year taking a pill every day?

Thanks for any help with these questions.

Tatjana

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I had a total hysterectomy also, and I was stage 1a. I didn't even think twice....I wanted everything OUT. I think you did the right thing, I really do. I am doing my second session of carboplatin/taxol tomorrow a.m. Was the second session harder or the same for you? Why did you not do all 6 sessions? I'm sorry I don't have a lot of answers for you because this is so new to me still. Also my type was different, mucinous as opposed to serous. This is the place to come to for answers though, so many knowledgeable women here....and so kind!

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Hi dgmc,

I had the same feeling. Just get everything out of me. But I am so sad that I can't have a baby. I waited so long until I really had the desire and the right man to have a baby with and then it comes down like a natural desaster onto me and takes away my possibility to do so.
As for the chemo, I am still in treatment. I am having number 4 next Thursday. The first 2 sessions were not too bad. Nothing that could not be handled with a few pills against nausea, joint pain, allergies and some Altoids for the bad taste in my mouth. After the 3rd one I had a little less energy and was very fatigued. I am curious to see how the rest will affect me. The meds are supposed to be a bit accumulative but my doc said that the side effects should stay the same that you have since the first chemo.
Good luck to you tomorrow morning. I hope you will feel well!

Tatjana

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Serous tumors are the most common subtype of epithethial malignant ovarian tumors. The subtypes include serous (like yours), mucinous, endometrioid, clear cell, and transitional cell. Borderline papillary serous tumors are a subset of ovarian epithelial neoplasms and are also known as ovarian tumors of low malignant potential. By low grade, I'm assuming, your doc/pathologist means your tumor is grade 1 or G1, well-differentiated. This is good. Grade 1 tumors resemble normal cells, tend to grow and spread slowly, and are the least aggressive.

You know, you could Google Ovarian Cancer risk of recurrence or Ovarian Cancer five-year survival and find all kinds of stats on this, but you may find it pretty discouraging. I would recommend you talk to some other women on this forum who were given the same stage dx as you and are NED or in remission. Helenstandsforhope is one member that comes to mind. I think she has been cancer-free since 1994.

I personally think you did the right thing having a total hysterectomy. Stage 3c ovca is nothing to mess around with. I'm not sure if you had cancer in the pelvic area and whether your tumor involved one or both ovaries, so it is hard to say whether you could have preserved an ovary and your uterus. I can tell you that you likely have a better chance of beating this with the total hysterectomy rather than preserving your uterus and an ovary. I had to have a subtotal hysterectomy (for uterine fibroids) at the age of 39, so I know how you feel about giving up your reproductive organs.

Regarding the "borderline . . . no need to do chemo" comment, I'm not a pathologist, but I think what your doctor was saying was that if your tumor was JUST borderline papillary serous, then you wouldn't need to do chemo, but your tumor was, first and foremost, low grade ovarian serous carcinoma and, additionally, had a background component of borderline. I was dx with a clear cell subtype of tumor that had an endometrioid component. My stage was 1a, grade 3 (clear cell). If I didn't have the clear cell, then I wouldn't have needed chemo either. I have completed 4 of 6 treatments.

I can't comment on the Pazopanib trial question, but I did find posts on this forum as well as on the American Cancer Society Cancer Survivors Network about the trial. Type in Pazopanib trial in the search window to find more info and members that have first-hand experience.

By the way, I am in the Bay Area as well. I contemplated going to UCSF for treatment, (my gyn recommended me to Dr. John Chan) but when I contacted his office, I had not been dx with cancer yet, just an ovarian cyst and a high CA-125. The woman I talked to told me their patients usually have already been diagnosed with cancer. I'm curious what your experience with UCSF is to date?

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Hi CaLuckyGirl,

Thanks for your extensive answer. I really appreciate it!! They were very helpful although I think I have to read you desciption of the cancer again very slowly since it is hard to comprehend.

I agree with you that I don't want to google too much about reccurence because that just triggers the fear of, "OMG I am incurable" and will have a reccurence sooner or later. I try to believe that I am healed when the chemo is over instead!

If grade 1 is slow growing and it has spread through so much of my peritonal cavity, I wonder how long it took to get to this stage and I just missed all the signs over years. I must have had cancer since years without noticing it.

Meanwhile I found an interesting blog on medhelp. http://www.medhelp.org/posts/Ovarian-Cancer/Calling-all-Borderline-ladies/s how/944426
Check it out.

I was diagnosed with cancer at the General Hospital initially and my surgeon was Dr. Jenta Shen who is great. However, he is only there every couple weeks so I don't get to see him much. That's why I switched to Dr. John Chan. It took me a while to get to see him and you have to bring all your documents like pathology slides, CAT scans, pathology and surgical reports. So far the people working with him there are all very nice and helpful and I even got an earlier appointment when someone cancelled. I am glad I switched because that gave me a second opinion. Dr. Jenta Shen wanted to do 4 rounds of IP after my 6 IV chemo sessions were over. Dr. John Chan on the other hand believes that there is no evidence showing that giving IP afterwards improves my chances. I am very glad because I really don't want to have another surgery so soon to have an IP port installed. And not to speak of the side effects. Although I would have done anything to maximize my chances.
Dr. John Chan wants me to be part of a study instead. They currently have 2 studies going at UCSF. I am interested in the Pazopanib study there.

I am sorry to hear Dr. Chans office did not want to take you as a patient just based on the CA 125 value and the cyst. It seems to me that many women here on inspire had exactly this problem before they were diagnosed.
I chose Dr. Chan because I would like to have a gyn/onco involved in my future care and for the fact that he works at a cancer center where he has access to cutting edge research. I hope that you have good care right now. If you should still want to become a patient of Dr. Chans, you should try again now that you are diagnosed. I think it is a very nice environment. Please let me know if you have any more specific questions and I will be glad to answer.

Did you want to have children too? That is more an issue for me than not having the actual reproductive organs. It was brave of you to have the hysterectomy.

Thanks for recommending HelenStandsForHope. I'll check her posts.

I hope you are having a great support system and you are doing well. Let me know how things are going for you. I would also like to recommend to you Barb Silver at the california pacific medical center at the Womens Health Resource Center. She is a great person to talk to and a great resource for everything.

Keep in touch.

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