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Looking for a Second Opinion

MattZ
Posts: 3
Joined: Sep 2013

Hi, My mother-in-law was diagnosed with stage IV endometrial cancer in November of 2008. The cancer was found in endometrial cells as well as some lymph nodes. Her initial treatment included surgery, radiation, and chemotherapy (Carbo/Taxol). By summer of 2009, her scans came up clear, and there was no trace of the cancer. Her scans were still clear 6 months later.

Then, in November of 2010, she went in for another follow-up scan, and it showed that the cancer had returned. At this time, she qualified for a trial anti-angiogenesis drug. This drug was strong with some side effects (mostly upset stomach), but it was effective in stopping the growth of the cancer cells. After a year on this drug, another scan showed that a spot in one of her lungs had grown, so she was taken off the study and put on Megace.

With the lung met continuing to grow slowly, her Dr. recommended more chemo (this time Carbo alone), which she began earlier this year. The chemo was effective in stopping activity in her lymph nodes and shrinking the spot in her lung! Her CA-125 level went down from around 500 to 15 where it still is today. At the beginning of the summer, she took a break from chemo to let her body recover. At this time, we also met with an Interventional Radiologist to discuss other treatment options. They decided to wait until her 3-month scan to make any decisions.

It's been 3 months, and the lates CT scans show growth in the lung and one "hot spot" in a lymph node. Other than that, her Dr. didn't see any other areas of concern right now. The new plan is to start on the chemo drug Topotecan. The oncologist also refered us to a radiation oncologist to look at options for radiation before, during, or after chemo. Has anyone out there had any experience with Topotecan? The Dr. said that it has shown success in treating stage IV endometrial cancer, but other than that, we can't find much information. We want to make sure that we have explored all treatment options, leaving no stone unturned. Can anyone recommend an oncologist for a second opinion? We are in Minnesota but willing to travel. There are so many names out there, so I was hoping that someone has had an exceptional experience with an oncologist and would be willing to share. Her current Dr. has been excellent over the last 5 years; we just want to make sure that we're not missing anything that might help. Is there a hospital or Dr. that is considers the leading expert in endometrial cancer? We're especially looking for someone who has had success treating stage IV endometrial cancer. Our family is so grateful to you all for sharing your experiences on these message boards and would like to share our hope and determination as well. 

BarbaraDe
Posts: 18
Joined: Oct 2013

Hi Matt,

I was diagnosed with uterine and cervical cancer January 23, 2012.  Recently - this past week, I was told that my uterine cancer has metastasized to my lungs.  I have been at Sloan Kettering in NY for surgery and visits, but had my radiation treatments at Sloan Kettering in Basking Ridge, NJ.  I LOVE all the people there!!  My sister, who lives in Pennsylvania, told me I should go for a second opinion on this new cancer at the Cancer Treatment Centers of America.  There is one in Philly, one in Arizona, and I think there are one or two other locations as well.  Just looked them up on line.  They are in Atlanta, Chicago, Philly, Phoenix, Tulsa, and Seattle.  They have an excellent reputation!

I wish your mom well!

Barbara

soromer
Posts: 130
Joined: Mar 2011

of America. They appear to promise far more than they can deliver, and they also tend to cherry-pick cases that happen to respond to their treatments.

There's a fair amount of critical material about them to find, though people are understandably always ready to try one more thing.

Anecdotally: One woman in my real-life support group tried them. She has stage IV bile duct (liver) cancer, and was told there's nothing more to do by her local oncologists. So she was wined and dined by the nearby CTC--they sent a car, for example, to the airport to pick her and her sister up, and they were housed for free--and she had about two months of treatment there. But it didn't work; she continued to have tumor growth. And at that point, they also told her they had nothing else to offer her, and sent her on her way.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 775
Joined: Mar 2013

You may need to copy and paste the link, I just am not to techy, but if you go to www.foundationforwomenscancer.com on the left hand side you can click on the left hand side that says "Find a Gynecological Oncologist".  There are ladies here who have been at Sloan Kettering in NYC - really any of the cutting edge cancer fighting hospitals too.  Hope this helps.

http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/

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