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Metastatic renal cell cancer: Cyst in maxilla bone area

Posted by 2ndjourney @2ndjourney, Jan 3 9:32pm

I have metastatic renal cell stage 4 cyst in my left maxilla area, moving horizontally toward sinus. Tried immunotherapy, single med chemo, spoke of radiation, now they want to do the free flap(??) reconstructive surgery. I wish we did the radiation back before I tried the last chemo pill. I've gotten mostly all the side effects, but not many results. The cyst is very slow growing, Thank God, but big enough. Any thoughts on radiation or surgery?? Very confused about what to do...waiting on 2nd opinion.

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

2ndjourney | @2ndjourney | Jan 6 10:05am
In reply to @hrhwilliam "Yes, I agree with Tom. You now should ask your physicians about their familiarity with Ameloblastoma...." + (show)
@hrhwilliam

Yes, I agree with Tom. You now should ask your physicians about their familiarity with Ameloblastoma. Further, are they pushing the free flap surgery because they want this on their resume' or because this is best for you? That sounds harsh but something here doesn't sound quite right. If it's free flap surgery, then my advice would be to go somewhere where they have had a lot of experience in this area such as Mayo Rochester, or MD Anderson. Do not hesitate to ask about the surgical team's experience in this. Free flap is a really big deal requiring considerable pre-surgery model work-up and prep.

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You and @tomschwerdt were right on target so far!! Sloane finally got in touch with me last evening. The clinical person/scheduler who my file was given to said she looked at it and was skeptical. It was a referral for the surgery from my doctor and she said "Something doesn't look right" and sent it off to be reviewed by the clinicians to decide whether it should go to an oncologist, a radiation doctor or a surgeon!!! Hopefully, the right decision is made!!

REPLY
joylondon | @joylondon | Jan 6 11:33am

Dear 2ndjourney,

I have not read any reviews of the major cancer centers, but I would rely on personal interviews.

My advice is to find at least two teams. Interview the teams regarding its expertise and success rates. You'll want to speak to the *entire* multidisciplinary team:
(1) the craniofacial surgeon,
(2) the microvascular surgeon,
(3) the maxillofacial surgeon,
(4) the chemotherapy and/or radiology oncologist,
(5) the prosthodontist (if obturation is required), and
(6) the team's other patients (if any of them agree to speak about their personal experiences).

To help determine your decision for the team you will engage, I would rely on the physician-patient experience during these initial interviews rather than reading the public comments on YELP (or some other public online review sites.)

REPLY
1 reply
2ndjourney | @2ndjourney | Jan 6 5:43pm
In reply to @joylondon "Dear 2ndjourney, I have not read any reviews of the major cancer centers, but I would..." + (show)
@joylondon

Dear 2ndjourney,

I have not read any reviews of the major cancer centers, but I would rely on personal interviews.

My advice is to find at least two teams. Interview the teams regarding its expertise and success rates. You'll want to speak to the *entire* multidisciplinary team:
(1) the craniofacial surgeon,
(2) the microvascular surgeon,
(3) the maxillofacial surgeon,
(4) the chemotherapy and/or radiology oncologist,
(5) the prosthodontist (if obturation is required), and
(6) the team's other patients (if any of them agree to speak about their personal experiences).

To help determine your decision for the team you will engage, I would rely on the physician-patient experience during these initial interviews rather than reading the public comments on YELP (or some other public online review sites.)

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Thank you @joylondon ... you are absolutely right...I am one of those people that look at the reviews of places and take heed to "some" of it. But , I do know personal interviews and other patient experience has to be considered also. For such a serious matter, I ask Everyones opinion, then make my choice.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 12:47pm
In reply to @2ndjourney "Thank you @joylondon ... you are absolutely right...I am one of those people that look at..." + (show)
@2ndjourney

Thank you @joylondon ... you are absolutely right...I am one of those people that look at the reviews of places and take heed to "some" of it. But , I do know personal interviews and other patient experience has to be considered also. For such a serious matter, I ask Everyones opinion, then make my choice.

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@2ndjourney, if you would like to consider a second opinion with experts at Mayo Clinic, here is more information about submitting a request or physician referral http://mayocl.in/1mtmR63

I also want to offer links to 2 related discussions that may interest you:
- Mandible Reconstruction with Fibula Free Flap. Is this an option?
https://connect.mayoclinic.org/discussion/mandible-reconstruction-with-fibula-free-flap-is-this-an-option/
- Diagnosed with Ameloblastoma
https://connect.mayoclinic.org/discussion/ameloblastoma/

REPLY
2ndjourney | @2ndjourney | Jan 16 8:07pm

Thank you for the info, but I'm already involved with Sloane. I wish I could have gone with Mayo Clinic, but it's too far away.

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