Surveillance in NC

[TomNC]

Hi Folks! New to the Forum, and looking for some help. Diagnosed in Feb, left orchiectomy in March. Stage 1 Seminoma, 1.5 cm, no invasion, no markers. I've chosen surveillance, but just found out my doctor hasn't had a surveillance patient before! Has anybody done surveillance in central NC and can tell me of an experienced doctor? Many thanks.

[Already Bald]

Tom, welcome to the forums. Here is a list of TC Experts: http://tcrc.acor.org/experts.html
I give you credit for going for the second opinion, you will want to have your slides read again by another pathology lab.
Best,

[Fed]

Hey Tom,

Welcome to the Forum! It seems to me that you have done your homework investigating all of the inroads pertaining to your diagnosis, so kudos for that. With the pathology you report, you are an excellent candidate for surveillance, so as long as you can handle the pre-lab anxiety, you will be set. Do let us know if there's any way we can help out. Cheers,

[Scott]

Welcome! We do have a few members from North Carolina, so I hope they'll be able to offer some advice on oncologists in your area.

[TomNC]

Thanks....

... for the quick replies and encouragement. You guys are awesome. Joe, I checked out the experts list back in March and have been in touch with the recommended Dr. at Duke. He told me that really all he does is Prostate! So, back to square one. Anybody out there from NC, who's been through it?

[Margaret]

Hi Tom (waves ) I can help!!

I live in Apex, NC and that must be pretty close to you. Please feel free to call me and I can give you lots of useful information. I am sure with the two of us working together, we can come up with a really great game plan for you.

Margaret
919-215-9464

[Margaret]

I was actually surprised by the lack of support we got from Duke. They told us that they did not have any dr.'s on staff that felt experienced enough to do Boyce's RPLND and they suggested we go to REX cancer center for treatment and care...which we did. They were excellent, in fact our doctor, Dr. Jeff Craine, is supposed to be one of the best.

http://www.rexhealth.com/masthead/doctor/rexradonc.htm

I am not saying Duke is not a wonderful hospital, it is, but it just did not fit our needs in regards to TC.

[TomNC]

Thanks again for the responses. I live in the Triangle area and would be happy to travel to Duke, UNC, Rex, etc. I've heard that Wake isn't so good.

My initial treatment was at a private clinic; but they have so few TC patients that I'm concerned about a lack of expertise. My next thought was Duke and I made an appointment with Dr. Moul, but three days ago his office recommended that I not keep my appointment. He had looked over my case and said that, although he used to deal with TC, his primary interest now is prostate cancer. On top of that, he couldn't give a strong recommendation for anyone out there who regularly sees surveillance patients. He himself said that when he did do TC patients, he recommended doing radiation and getting it over with. His office helped me reschedule with Dr. Walther at Duke, but given Dr. Moul's comments, I'm not sure I'll find what I'm looking for. All the more, I've looked over Dr. Walther's webpage, and it's mostly about prostate, kidney and bladder cancer. The only thing about TC is RLND surgery.

All that to say, I'd be delighted for someone to tell me about a doctor in the Triangle area who sees a decent number of patients specifically for surveillance.

Or, is it not really that important for the Dr. to have strong experience in the area of surveillance?

[Margaret]

Please check out the link above for the REX cancer center. They are top notch and a good location for you as well.

We also contacted Dr.Moul and got the same response. Duke is wonderful for other issues, just for us, not the best fit for TC. I am not sure why he changed focus.

I hope we can help.

M.

[Already Bald]

Or, is it not really that important for the Dr. to have strong experience in the area of surveillance?

Tom, this is an excellent question. We are all essentially working towards the goal of surveillance. After we are treated with rplnd or chemo, we all go on surveillance. Our oncologist base their decisions on the expertise of the radologist who prepare our CT Scan reports- and then of course they review the cd as well. Blood draws are also important- although I'm not so sure about Seminoma.
So essentially I suggest you seek treatment at a center of excellence that has excellent radiology as well as tc experience in oncology.
You should PM Margaret and Boyce, they know the area- and can probably connect you with their doctor.
Best,