Newly Diagnosed - Borderline Stage 2 Grade 0

Hi ladies,

I'm a newly diagnosed stage II Grade 0 micropapillary serous ovarian cancer patient. I'm only 27. No history of cancer in my family. I have had ovarian cysts for the past 7 or 8 years, but this is the first that was suspicious. My doctor has a great reputation in South Carolina, but he thought I had endometriosis because of my age and not ovarian cancer. I had a 5 inch cyst on my left ovary that was suspicious. I had my left ovary and fallopian tube removed, and the only tumor was in the left ovary. They found cancerous nodules on my pelvis, so it's Stage II. Doc stated that in 50% of cases, once the main tumor is removed, the pelvic nodules may dissipate, so we are hoping for that. I'm absolutely scared to death. I've been married for 2 and a half years, and we are now terrified that we won't get pregnant. My right ovary has a 2cm cyst that is benign. My doctor does not suggest chemotherapy given my desire for children in the near future and the fact that it is Grade 0. He suggests a full hysterectomy after having children. Do y'all have any advice on alternative therapies, i.e., dietary changes, etc.? Also, I am actively pursuing a second opinion from Duke or UNC. Does anyone suggest a great doctor? Any good treatment suggestions? Any advice is greatly appreciated. Good luck to all of you :)

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I forgot to mention that my CA-125 and HE4 tests were all normal. However, my CA-125 went from 8 last year to 28 this year.

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Hi! The pelvic nodule thing kind of scares me...Just make sure you have the finest gynecological oncologist in your area...Although your CA-125 is still within normal limits it is my understanding that when your CA-125 doubles it is not a good thing. I'm not trying to scare you, but you need to be informed....a second opinion is smart...

Love and blessings..

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Thank you so much! Yea, the pelvic nodules are what upgraded the cancer to Stage II. They aren't on the peritoneum, which I know is good, but still very frightening. Thanks so much for your response.

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Keep us posted...I am surprised that they are not doing chemo, but then, I'm not a doctor...

Be strong..and let us know about your second opinion. ;-)

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It's rare that they do chemo for borderline. Just make sure to keep an eye on it and don't put off starting your family. I was only 24 when I underwent a complete hysterectomy. I had endometriosis and the pathology report came back as borderline cancer after the hysterectomy. I had over 25 years cancer free with no chemo. I just happened to be one of the unlucky rare occurances where mine has come back as a low grade cancer and is in the lymph nodes. This does not usually occur, although I had spread to the omentum and through the pelvis before mine was originally found. I wish you many happy years.

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It is rare to do chemo for borderline tumors, however, when they have a micro papillary architecture, it is not uncommon to treat with chemo. I'm glad that you are getting a second opinion.

I too was dx with serous borderline tumors, Stage 3C with lymph node involvement. I am two years out and NED. Borderline tumors have an excellent prognosis, even in advanced stages, so stay positive.

As for diets, have you looked in macrobiotic diet? I have heard first hand stories of people going into remission while on the diet. Another is the Gershon diet. The thing with these diets is that they are a life-long commitment. As borderline tumors have such a good prognosis, perhaps just reducing sugar in your diet (my understanding is that sugar feeds ovarian tumors) and eat an otherwise healthy organic diet, that may suffice.

Keep us posted on your second opinion. I am curious as to what they recommend for treatment.

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DAMN this disease. DAMN and I mean it as a lay person but with FULL awareness of the religious connotations. How dare it affect the young? I was pretty grumpy, let me tell you, about getting cancer as a 57 year old. I am whingeing about not having grandchildren yet and all that, but I do have kids. (Actually, I typed, 'wonderful kids' but I even if they weren't wonderful you still want them, right?) But 27? Now I am very grumpy.

Aussie_84 I am so very sorry about you being here but hope you don't go away. Hang around as there is a lot of knowledge here for you as well as all the emotional support you might not get where you thought, if you have got that far yet, where you thought you were going to get it.

Rant, cry, plead, ask; laugh, get sarcastic, get effing angry; anything goes. Just share, out loud if you want, or lurking is okay too. Plenty of people lurk and we love you all too. We can't all be extroverts.

Much LOVE
Jenny

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Thanks everyone for your responses! It really helps to hear from other ladies going through similar issues. I have looked at a few diets. Right now, I have decided to stay away from dairy and sugar, begin a mainly vegetarian diet, and eat lots and lots and lots of fiber and berries. Someone posted a great link on this website to a teleconference held earlier in the year discussing cancer and diet. Apparently, dairy is directly associated with ovarian cancer. Sugar is also a feeder for tumor growth. Luckily, I've always eaten pretty healthy, so this isn't such a drastic change for me (well, other than cheese....I adore cheese :)). Also, I have done some research, and green tea is apparently wonderful for the treatment of ovarian cancer. I'm pretty limited on my options since my type of cancer is not as treatable via chemo, so I'm trying anything I can. I have my post-op appointment with my gyn/onc on July 19th, so we will discuss getting a second opinion then. I will keep everyone updated. Thanks so much again for your responses and support! I truly appreciate each of you. My thoughts and prayers are with y'all as well.

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There was a great wonderful tHread here from Tethys - she saw a naturopath. Also xericjean has a thread going...many of us do Iscador. I am not sure if that is appropriate for you or not...you need to see and anthroposophical MD or naturopath. I myself am not doing chemo. Surgery was 1-30-12. Stage 1 grade 3 mucinous with a few itsy bitsy micro invasive destructive cells imbedded in the 15 lb tumor. I had omentum, 15 lymph nodes fluid (all clear) removed and complete hysterectomy. You are so young!!!!! I am so sorry. Keep us posted.
Blessings!

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I know how scared you are and I'm so sorry. The best doctor in the country, possibly in the world is at Duke - Dr. Andrew Berchuck. I've been seeing him for five years, ever since I was diagnosed with a borderline ovarian cancer. He knows more about the disease than anyone. Just look him up! Good luck!

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Martibr--Dr. Berchuck is who I'm planning on seeing. Thank you for the recommendation! I'm extremely interested in what he recommended for your treatment. How has the journey been for the past five years? Any details are greatly appreciated. The most frustrating part is not knowing anything about this type of cancer. I'm glad you like your doctor, and I hope things go well for you. Thanks!

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Thank you all so much for your responses! It means the absolute world to me! I have already gotten in with a great doctor at UNC-CH for a second opinion--Dr. Clarke-Pearson. I'm very excited. Hopefully I'll have some good news to report. Have a great weekend everyone! xoxox.

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