I have ovarian cancer

Posted by joannedb @joannedb, Jul 1, 2016

Hi I'm Joanne. New to this group and I have Ovarian Cancer. Looking to connect with others with OVC.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@elenab

I am planning to get a second opinion at Mayo Clinic. The medical facility is rated as No. 1 by US News in the treatment of Ovarian Cancer. Is there anyone in the group that might share their experiences with the Mayo Clinic.

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@elenab Welcome to Mayo connect. I decided to go to Mayo Clinic in Jacksonville cause their GI department is rated #1. Wow is all I can say.. They have totally SPOILED me rotten. My appointments are always on time. I have a team of Doctors from 3 different departments that coordinate together my appointments. So when I go for blood work each department gets their order in and the blood is drawn at once. Literally with in a few hours they give me my results. The Dr's spend time with your and cover every concern.. I was diagnosed with 2 different primary cancers. Lymphoma and Cecum cancer. They did surgery to remove the cecum cancer and so far so good. Same with the lymphoma. They automatically set up my appointments too. The Dr's are top notch and everyone is so nice.
You will be in good hands at Mayo Clinic. Wishing you the Best.

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Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Welcome to Connect, Kate. I'm glad you found us. @joannedb @rena42 and @cynthiawick can tell you more about their experience with Avastin.

Kate, here is some information from Ovarian Cancer Canada about recurrence symptoms http://www.ovariancanada.org/living-with-ovarian-cancer/recurrence. I can understand the concern about watching for symptoms of recurrence and how going for blood work or scans can increase the anxiety levels. But this type of monitoring is your best defense. I'd like to bring @hopeful33250 (Teresa) into this discussion. While she doesn't have ovarian cancer, she has had 3 recurrences of carcinoma.

Kate, what do you do to ease the fear of recurrence?

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Welcome Kate, glad to hear you are doing well. Going for tests and bloodwork is always nerve racking. Hopefully you will continue to be clear. Recurrence is something we all live with. The operative word here is "live". I ve recurred twice, currently in chemo, and have bounced back nicely. My longest remission was one year and I credit avastin for that. When I recurred I received carbo, taxol and avastin until my scans were clear then continued with monthly infusions of avastin. I had some side effects from the avastin, but generally felt well and appreciated the time away from chemo. My doc did have to put me on a high blood pressure med with avastin as that seems to be one of the most common side effects. I was also tired for a couple of days a,fete my infusion and sometimes had join pain. It is defiantly worth discussing with your doc. Best of luck to u. Joanne

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Hello @katethegreat and welcome to Mayo Connect. As Colleen Young mentioned, I have not had ovarian cancer but have had three surgeries for neuroendocrine tumors, a rather rare malignancy. I can understand your concerns and questions regarding your treatment. It is important to be an advocate for your own health care and I can see that you are doing that through Mayo Connect. Have you given any consideration to a once a year trip to a larger city to visit a medical facility with more experience in treating your cancer? While it might involve a little more of your time it might be worth the time and expense to be sure that you are getting the best cancer care available. After reviewing your records, the doctors at the larger facility can then communicate and make recommendations with your local doctors to ensure that your treatment is appropriate. Best wishes to you for a healthy 2017!

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Two replys...had an acquaintance that came thru the chemo and everything just fine...so just want to encourage you..I really don't know anymore about her than that.
The other is that I would suggest that you get the shingles vaccine as when your body gets down, you can get shingles and it takes you down even more and you need to stay as healthy as possible to get thru this....knew someone where this was true... keep us posted as we care........

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Hi Kate-Congrats on your success so far. that is really great and hopeful for all of us out here. I was diagnosed April 2016 with stage 3b OC. Have finished chemo in October and right now NED. I was told Avastin might be my next step is I reoccur.
Best of luck to you! Carol

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Thank you for your reply. What is NED? I have not had Avastin mentioned to me, but I will keep it in mind if and when needed. The universal health care system is not always what it is cracked up to be. I was in contact with another OC patient here in Halifax. She did have a couple of reoccurances, but did manage to survive for 13 years. She felt that taking a ginger supplement helped quite a bit. I spoke to my doctors and she said that if I thought it might help to give it a try. I wish you all the best as well. Hopefully treatments will progress and improve. In the meantime, take care.

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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I also received Carbo and Taxol as well. I think it was the Taxol that they had to reduce by 20% as due to it I developed neuropathy in my hands and feet. It has subsided somewhat in my hands but is still in my feet. Time will tell I guess. I think part of the secret is to just try and get back to things that make you happy (for me needlework) and try to keep spirits as high as possible. At the very best to you. Kate

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@katethegreat

Hi, I have just joined this Mayo site tonight. I was diagnosed with Ovarian Cancer in July 2015, had surgery followed by six (6hr) chemo sessions. So far so good. Going for blood work next week. I live in Halifax, Nova Scotia and the treatment possibilities here are not great. I asked what followup there would be and was told that they would know that there was a recurrence when I developed symptoms. What those symptoms might be have not been described to me. I was told I am a Stage 3C. Anyway any suggestions, ideas, thoughts, whatever would be greatly appreciated. Would be interested in knowing more about the drug Astivan - its use, etc. Thank you for taking the time to listen to me. Appreciated.

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Thank you falconfly with the mention of the shingles vaccine, I did have it a few years back when my husband had cancer. It was recommended by our family doctor. So, at least that is out of the way.

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