May 23, 2017 at 7:58 pm #94862fquailParticipant
Update. I had a consultation yesterday with Dr. El-Rayes with the Emory Winship Cancer Canter. He recommends starting the standard chemo regimen of cisplatin and gemcitabine, with regular CA 19-9 tests to monitor and a CT scan after the first several chemo sessions. We’d continue the chemo if it appears to be working. Concurrently, they are sending my biopsy sample to Foundation Medicine for gene testing to see if any of the newer therapies might be promising for my specific situation. If the chemo doesn’t start working on the tumor we may look at a trial involving immunotherapy.
A couple of questions for folks out there:
1. Both Dr. El-Rayes and my primary oncologist have said that surgery is typically not an option for recurrent CC. But as I noted in my original post, my surgeon feels that surgery might be able to get the tumor, as long as we’re pretty sure it hasn’t spread. Anyone have ideas why “second surgeries” are downplayed? (My tumor is extrahepatic.)
2. I asked about the value of another opinion, and was told I would probably get the same alternatives presented to me yesterday. Anyone have a suggestion of the best place to contact, and if they can/will consult remotely if I send them a couple of my most recent imaging studies?
Thanks to all!
FredMay 5, 2017 at 6:34 pm #94861positivityParticipant
Yes, I am still on this journey of learning and understanding, but hopefully with the added research, treatments, and understanding from oncologists this will be a chronic condition to maintain and control. There has to be ways to prevent tumor from growing not just killing the cells. Which most are probably familiar with angiogenesis in which to stop the blood vessels supplying fuel for the tumor to grow. I don’t know the detail or extent of research on this form of treatment for CC, but more research will and should be on the horizon.May 4, 2017 at 5:55 pm #94860marionsModerator
Fred….you are ahead of the game in that this tumor can be removed and subsequently offers the real possibility of a cure. Please know that many others had 1 or more follow-up surgeries or other available interventions and are here to talk about it. Please try to think in these terms.
I believe this surgery will be much less taxing on you than the original Whipple procedure. You will come through it quicker and recuperation should be shorter as well.
Most likely Winship will confirm the path to be taken.
Just because you have a recurrence at this time does not mean it will happen again.
On another positive note: research into this cancer has increased hundredfold with various choices of treatments.
I am very hopeful, dear Fred, there is life after this cancer.
Hoping for others to share their thoughts with us as well.
MarionMay 4, 2017 at 5:39 pm #94859positivityParticipant
Thanks for sharing!
On the positive note, you overcame this the first time and were free for 4 years! I find that amazing. Hopefully you will experience the same outcome on the second treatment. That’s what is disheartening about CC, even with any treatment there is a possibility of reoccurrence. Try to get a few opinions.That’s so important to continue living a healthy lifestyle in exercising and eating a nutritious diet.
Keep us posted.May 4, 2017 at 5:22 pm #13289fquailParticipant
I was diagnosed with CC in February 2013. Fortunately, the tumor created symptoms that alerted us to its presence early. I had a Whipple procedure, the tumor was removed, and approximately 40 lymph nodes were tested, all negative for cancer. Follow-up treatment included both radiation and chemo.
For almost four years I have been clean. However, in December I had an elevated CA 19-9 blood test reading, confirmed by another reading in February. A PET scan last week found a recurrent tumor, and a subsequent biopsy revealed it to malignant CC in the same general area as the first (specifically, “immediately inferior to the liver and immediately superior to the transverse colon)”.
Several items of potential good news: 1) I am a 66-year old male in otherwise very good physical condition. The tumor has yet to impact my quality of life (except emotionally!). 2) Resection would appear to be a possibility given the location of the tumor. I have spoken with my original surgeon and he believes he could “get it” at an appropriate time.
I will be referred to the specialists at the Winship Cancer Center at Emory University Hospital for a consultation. Hopefully, they will advise treatment that can lead a successful resection of this tumor and “start my clock all over again.” I am realistic, however, that, even with successful treatment, this cancer is likely to come back again.
Any positive words of wisdom would be appreciated!
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