Mayo Clinic Connect
Hi I’m Joanne. New to this group and I have Ovarian Cancer. Looking to connect with others with OVC.
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.
Jump to this post
@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.
Liked by Colleen Young, Connect Director, Jamie Olson
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.
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?
Liked by Teresa, Volunteer Mentor
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
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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!
Liked by Colleen Young, Connect Director
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……..
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
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.
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
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.
I thought I’d check in and see how you’re doing. You asked what is NED? NED is short for “no evidence of disease”. Have you heard of Dr. Rob Rutledge in Halifax? He is a radiation oncologist who started a Healing and Cancer program. You can read more about it here: http://healingandcancer.org/the-healing-program/ and watch videos. Another great resource for mindfulness work is Mayo Clinic’s Dr. Sood. He also has a guided program online here: http://stressfree.org/happiness/ Several other members of Connect have recommended these types of programs to help living better with cancer.
Talk to you later.
I had the ovarian scare at age 42. The surgery pain was as if a Mack truck hit me and rolled over me. Not to mention the hormonal changes that follow.I only wish I would have had the mind & body training I had with the many surgeries in my 20’s-30’sIn 2008 after I had lung cancer surgery (I am a never smoker) I was …the Healing Cancer physicians are earth angels. The mind body soul connection is a blessing in more ways than I could have ever imagined. The practice had given me great strength, compassion, resilience traduced to The PacedBreathing Research Study at Mayo that put me on a great track for living!Having lung cancer was shocking!But the Stigma, shame and blame was unfair and horrible. It can bring you down! Integrative medicine works for me!Most importantly, I can accept living like never before! It’s a wonderful life.I am grateful “Stress Free Living” teachings by Dr Amit Sood and the amazing care at Mayo Clinic with the “healing support” they make available…it should be an insurance requirement ! Because I now say Lung Cancer became my blessing.Mayo teams respectfully keep an eye on us and lookAt the great sharing opportunity we have with Mayo connect. Truly amazing! Thank you Colleen ❤I am so grateful, Linda Wortman
Liked by Justin McClanahan
Interested in knowing more about ovarian Cancer recurrence or ovarian Cancer matastasising
Welcome to Connect, @colfordconnors
You'll notice that I moved your message asking about ovarian cancer and metastatic ovarian cancer to an existing discussion group. I did this so you could meet others talking about ovarian cancer, like @joannedb @katethegreat @caf132 @rena42 @pauldale4 @laurieann789 @pat417 and @seansfather
Colford, you might also be interested in this discussion:
– Ovarian Cancer Stage 1 borderline progressed to high grade Stage 4 https://connect.mayoclinic.org/discussion/ovarian-cancer-stage-1-borderline-progressed-to-high-grade-stage-4/
While we wait for others to return to the discussion, we look forward to getting to know more about you. Are you looking for information about ovarian cancer for yourself or for someone you care for?
I am 2 years out from ovarian cancer Stage 3c-had a big surgery and chemo therapy. Still feel exhausted, partly because of so many checkups and Blood Tests! But my cancer dr. Just mentioned at my last visit that it could come back ( some of the contamination could have been missed) and since I had some very small breast lumps (lumpectomy) and a recent colonoscopy taking out 4 precancerous polyps I am bracing but don’t know either how common recurrence is.I am about to be 77. Would like to hear some others’ experience with this.
version 220.127.116.11.9Page loaded in 3.140 seconds