I went to University of Virginia Health Systems where I had my initial surgery in June. I did a new MRI and apparently a large area at BOM in the former surgical area is lit up with cancer.
My ENT ONC wants to do another surgery and the RO says radiation didn't work the first time, so doesn't recommend again.
I asked if they minded me seeking a 2nd opinion and they did not. They actually have set it up with John Hopkins in Baltimore. The nurseline at my insurance company recommended them.
I am hoping a doctor calls soon with an appointment. I think I lost 2 months when a resident took a biopsy from an area adjacent to but not at the former cancer site. The hospital seemed to find it more important to not admit to wrongdoing before finally retaking the biopsy from the area where they performed the initial surgery.
I am more frightened than I have ever been. In this scenario they want to remove teeth on the left side of my face. They want to remove jawbone to fix an area of bone they exposed and then a huge area of surgery to fix an radiation ulcer and cancerous area. Essentially all of the base of my mouth.
Has anyone here heard anything on how John Hopkins is with OC?
It's one of the best. They have lots of experience with oral cancer treatment, and have been one of the centers of research on HPV and oral cancers.
I see an ENT at Hopkins. When I first called them for a second opinion, I had no trouble getting an appointmnet within a few days. Send me a PM if you want more info; contact numbers, etc. I have not gone through the tx you have, but I like and trust this doctor.
Wishing you the best!
Hisnibs, I can imagine the fear you are having. Good luck and you will be in my prayers at church in the morning.. I have to get an MRI of my area Tuesday the 12th. I'm not really looking forward to it. I know it's back by the way my mouth and thraot hurt. Good luck.
So sorry. Looks like Happy New Year...not so happy. March forward & press on.
For their Ear Nose Throat program they earned the top honors last year (2009) and third in cancer care out of all US hospitals...according to US News and World report. I don't think you can go wrong with Hopkins at all.
Hopkins and MD Anderson Houston are rated highest in both ENT and Cancer care in the US.
Good luck, keep strong
Eric
So srry about this news. I will defnintely put you on the prayer list at church. I know how scary this must be for you. Keep strong and we are here for you. Vent all you want or need.
i was treated at Hopkins in 2001. my experience is all positive. best wishes to you... i think that Hopkins is as fine a hospital as you can find and their OC group is highly rated. the cafeteria at Duke in Durham, NC probably is better.
I have Dr. Koch who appears to be the director of the Head and Neck Ceter. I am going in on the 15th of February. A Dr. Boheme (I think) is doing the jawbone and flap reconstruction. Thanks for your off of help.
Hi Jim,
Good to see you since I dropped off for a while. Hope you are as well as can be.
Thanks Brian and everyone who has posted back to me. Happy New Year!
I decided to go with John Hopkins and am being scheduled for surgery on the 15th. They will do a similar surgery as described above. They will remove teeth, the outer portion of bone in my jaw under the teeth removed. They will excise the cancer areas BOM but also recommend removing about half of my tongue. They will reconstruct using bone from a leg and tissue as well as tissue from a forearm.
They are calling this my last best chance at removing all of the cancer.
I still do not know if this is cancer that was left after last surgery or something new. I am assuming it was left because a skin graft there never looked like it healed correctly. A dentist told me it looked like it was 2 weeks old after a surgery when it was close to 6 months old.
I guess I should move this conversation to the recurrance forum
He is the ENT at Hopkins I see. I think you have made a wise decision.
Good luck with the surgery, and keep us posted about how you are doing!
good luck with your surgery. keep us updated. i will send prayers out to you.
Thanks, I am new at prayer. I have been seeking spirituality in all the wrong places and cancer got me to look at what is right in front of me. I will be praying for OCF and it's members always.
Hang in there. It sounds like you've got some great docs and a good place to take care of the surgery you need. Will definitely be keeping you in my prayers. Take care.
Dr. Koch is my husband's ENT and I have the greatest respect and admiration for his skills and compassion. My thoughts are with you as you go through this as I can only begin to imagine how frightening it must be to be preparing for your upcoming surgery.
Take care.
Dr Koch is a great Doctor! The University of Virginia Med Sys told me I had a recurrance of BOM cancer, I think the Pet scan showed I had no other active areas, and Dr. Koch found I had no cancer recurrance! So I am seeing him on monthly visits for a while. Probably 2 years.
Oh... and Knock on wood....
[quote=hisnibs]Dr Koch is a great Doctor! [/quote]
There are several of us here that agree with you!
Congratulations!
I'm another one who agrees -- he's my husband's doc.
I am not the only one on this Forum to have benefited from Leslie's sage advice. Thank you Leslie for steering me in the right direction toward JH.
It is very reassuring to read the many favorable recommendations on Dr. Koch at Johns Hopkins � he is doing my surgery next week!
My Mom, Minnie, went to Dr Koch as well. He is a wonderful man. His assistant Cheryl is one of the nicest women I have ever met!