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Serous Borderline Ovarian anyone?

I was recently diagnosed with Borderline Ovarian Cancer. On March 27th I had my CT scan and a tailspin of appointments followed. On April 4th I had a Total abdominal hysterectomy, omentectomy, bilateral saplingo-oopherectomy, with cancer staging. I am 41 and wanting to find more information from actual women who have borderline. It is hard to find information. My gyne/onc says no chemo. Sounds great at first till I read that chemo does not work on this kind of cancer. I am scared because I don't want to obsess about when it will come back. I am hoping to find others who are living normal lives and many years post op. Thanks. Stephanie
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667078 tn?1316000935
I hope you live a long life and see them all married. I had no children I shoot for raising the Dalmatian Puppy I got a month ago and using her for a Service Dog so my 12 year old Service Dog can retire. Both my Dalmatians were both born deaf and both were slated for Euthanasia simply because they were born deaf. People don't know the secret to deaf dogs they are easy to train because they always watch you and a lot of sounds that scare or distract a hearing dog do not bother them. My dogs are happy they do not get hung up on being different. They do not know they are different. They have taught me to be happier. It takes patience to train a deaf dog but I have all the time in the world.

Alex
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Avatar universal
Your courage and postiive attitude about your battle was one of the things that I used to put on my brave face as I began this journey.  When they first found the growth on my right ovary, I was afraid I wouldn't see my next child graduate from high school.  I no longer worry so much about that, but I do have a renewed appreciation for the little things in life that I used to take for granted.
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667078 tn?1316000935
dabultler,
  I think it is harder to be told you are in remission and wait for it to come back and worry about it. My Cancer is so bad I have to thank God I live a few more months. In away it is easier to just have it full blown and have to deal with it. I have no choices to make I just have chemo I up to 17 rounds. I have scans every 8 weeks. I go for treatment of some kind every week. I know where I will be next Thursday. Hooked up to an I.V. at the Cancer Hospital. The anxiety is replaced by gratitude.I also do not have to worry about getting old. I live in today not in yesterday or tomorrow. I got a puppy last month and hope to see her grow up.

Alex

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Avatar universal
I had my right ovary and tube removed in January due to a tumor which was determined to be a Low Malignant Potential Tumor (Borderline Tumor).  At the recommendation of my gynecological oncologist, I had an SAH and removal of the left ovary and tube in April.  My CA 125 was normal before surgery so they have not drawn it after.  I had a PET scan before the second surgery and it showed on sign of cancer anywhere else in the body, but I will still have to have scans every six months for the next fifteen to twenty years.  I had eight previous pregnancies with two being twin pregnancies, so I also had an abdominoplasty at the same time as the hysterectomy.  After eight weeks, I am feeling better than I have in years, but I am still terrified.  Every pain or lump I feel makes me paranoid that I am having a recurrence already.  My doctor has assured me that my risk of a recurrence is less than 2% since my cancer was Stage 1A and that, if I do have a recurrence, it would most likely be borderline again and just require surgical removal of the tumor.  I know I should be reassured, but I doubt I will ever feel totally at peace again.
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Avatar universal
Well said. I hope you are doing well. Your outlook has helped me elevate my emotional responses and outlook on life and living with cancer. I don't dwell on it as much. I will let you know how my ultrasound turns out. I also know my body and for peace of mind I am going to ask for a repeat CA 125 in 2 weeks instead of waiting till August.
I am so glad you have found great doctors who care. What a blessing.
Stephanie
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667078 tn?1316000935
38 is not so bad post surgery. Mine right now is 36 which is above normal but the doctors are not worried since my scan looks good. No test can stand alone. The doctor interprets it with everything else. Trusting your doctor is the most important thing. I started with one who was not paying attention to how sick I was. I changed and the next doctor gave me fluids to pints of blood and got me to a nutritionist right away. I was what they call failure to thrive. All my blood work was bad and I was 40 pounds under weight. I gained the weight back and am having far fewer problems. I totally trust my doctors now. I also have a great breast doctor. I am not at all worried about the BRCA 1 because she is so wonderful. I do not worry because I know she will catch anything.

Even my PCP who missed the cancer would do anything to help. A good health team is so important. These Cancers are hard because they are internal.

Alex

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Avatar universal
Hi Alex.
I found out my CA 125 is 38. I was hoping it would be in the normal range now since I had surgery to remove all the cancer. Can you tell me if this is normal 5 weeks post operatively? I don't want to wait for 3 months till my next appointment to find out if it is rising.

My gyne/onc ordered an ultrasound of my groin to see what it is, lymph node or recurrent hernia. I had that done this afternoon. Won't know anything about that for awhile.
Thanks for all your insight.
Stephanie
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667078 tn?1316000935
I know there is a lot to worry about but take it one step at a time. My groin lymph node swells every once and awhile and so far it has meant nothing. Surgery could do it. I have to wait a week for CA 125s. I have waited up to six weeks for results. It is normal.

Many things with the body resolve themselves. Like I had vaginal bleeding and was a little freaked since I had everything except the Vagina removed. Turned out to be nothing. Two months ago they found a lump in my breast on a CT Scan it was a normal lymph node after mammograms and ultrasound. They thought I had Cancer of the jaw years ago it was an injury. So many times I have freaked for no reason.

The more sophisticated the test the more false positives.

I care yes it is concerning. I have just learned from experience there are a lot of false positives. There is no substitute for a good doctor and a hands on exam.

You can write me any time.

Alex
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Avatar universal
Alex I wanted to let you know I got all the paperwork filled out and faxed so St. Joseph's hospital will send my slides to MD Anderson in Houston for a second opinion. They say about 3 weeks to get the results.
Had my CA 125 drawn yesterday and still no news back on what it was. I do wish there was a faster turn around on test results.
Last night I was walking and noticed pain in my right groin and felt a lump. I thought lymph node and texted my doctor. He said to watch it and it could be from surgery and if not better in 2 weeks let him know. Later in the evening I was no longer able to feel anything. I did have a right inguinal hernia repair laparoscopically a few years ago and now I am concerned it has reherniated. I am upset considering I just had open abdominal surgery and I can't bear to think I need another one. Will be getting an ultrasound soon I hope.
Thanks for writing me back.
Stephanie
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667078 tn?1316000935
MD Anderson is great good move. You just can't live waiting for the shoe to drop it might not. A little worry is normal but when you get used to living with a thing its better.

Alex
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Avatar universal
What a great asset you are to this site and to other women with ovarian cancer. I am grateful you responded to my post. I saw my gyne/onc today and he is so optimistic which is great. I am a worrier and have been my whole life. Hard to stop now. I must though for my own sanity.
I got my CA 125 checked for the first time since surgery so I can't wait to find out what it is. I too have a puppy, 9 months old, who I love dearly and he is a fantastic companion while I am home recovering from surgery. Animals are terrific.
With a Borderline diagnosis I find it hard to wonder when it will come back because it will eventually. I am seeking a 2nd opinion from MD Anderson to make sure my pathology is in fact correct. I would hate to be miss diagnosed and not have chemo.
Any other insight is very helpful. I have been reading others posts and have learned a lot. I hope you continue to do well and I pray for a cure.
Stephanie
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667078 tn?1316000935
Hi,
   I don't have borderline. I do have stage 4 Ovarian cancer and I am 51. I have cancer over 15 places but it is shrinking with treatment. I am in treatment all the time. I had six chemos now I have over 30 treatments and 9 chemos in nine months. I go every week. I just work around it. I always wonder if it had been worse having a remission and worrying about it come back. At least mine is always there.

I also have Multiple Sclerosis which is unpredictable. Some days I get up and I can't walk with out a walker of crutches. Then it goes away. With both illnesses I get tired easily.

All you can do is live your life and be as happy as you can. I feel fortunate everyday. I do theraputic riding every few months. I am getting a puppy. I am for the most part happy. I do not take things for granted.

Hopefully you will not get full blown Ovarian abut there are lots of treatments, Soon they will have more than just chemo to work with. I am in a clinical trial testing a new drug.

I am also BRCA 1 so I have an 87% of breast cancer. At first I worried about it. Then they found a lump and the doctors were sure it turned out to benign. I did not like worrying so I stopped.

Alex



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