Hello everyone- While attending Cancer Support Groups at a local hospital, I met a lady that has a husband with tongue cancer. He went through many weeks of radiation, but his cancer is growing in spite of Doctor's efforts. He is too weak to receive chemo therapy and the doctors told Jim and Bonnie that a total glossectomy is barbaric. I know that there are a few people on here that have had a total glossectomy. Could you tell your story and let me know if you think a total glossectomy is a good choice. Jim is going to be starting hospice soon and I would like to get this information over to Bonnie as soon as possible! Any comments would be so appreciated! Thanks!

I would say they should get to a CCC (comprehensive cancer center) ASAP. I would say death by oral cancer is more barbaric then a total glossectomy every day of the week. Several members on these forums have had them and are living a full life, they have challenges sure but they're not dead.

Now not knowing Jim's diagnosis and situation its hard to give advice so the best advice that can be given is to have them get a second opinion from a CCC, preferably a nationally ranked facility. Get the best medical advice available.

Best of luck
Eric

Look for posts by misskate, who had a total glossectomy and is thriving. In addition to providing ongoing support for many posters here, she wrote a blog of her experiences from diagnosis through the all-clear from her doctor 18 months later.

And I agree with Eric's recommendation that they seek a second opinion from a well-regarded comprehensive cancer center. Geography shouldn't necessarily dictate a treatment facility -- but if your friends would find cross-country travel difficult, the closest ones to Door County would be the Carbone CCC at the University of Wisconsin in Madison, the Lurie CCC at Northwestern in Chicago, the University of Chicago CCC, the Karmanos Cancer Institute at Wayne State in Detroit and the University of Michigan CCC in Ann Arbor. More information is here.

All of these have National Cancer Institute designation as a CCC (meaning they are on the cutting edge of cancer research); the Lurie CCC is also a member of the National Comprehensive Cancer Network -- an alliance of more than 20 of the nation's leading cancer centers that together publish the state-of-the-art annual cancer treatment protocols.

Leslie and Eric, you two are so awesome! Thanks for writing back so quickly! I appreciate it!

Keep us updated on how it goes please. Good luck to them! I hope he will be able continue enjoying his wife and family for many years!!

Hi there,

Well it is a personal choice. Sure wish people (and Doctors) were more informed of this surgery and didn't refer to it as "barbaric". Yest it is a very extreme surgery but dying from tongue cancer is much MUCH worse than having the surgery and surviving it.
Life will never be the same but it will be much better than being dead. Cancer isn't something you can really bargain with or reason with. It is a disease and if you don't get rid of it it will multiply and spread and kill you. It is as simple as that.

If his cancer isn't responding to the other treatments then it sounds like it his best chance at survival. I am not his doctor and I don't know how advanced his disease is. If the disease has metastisized it may not be helpful to have the surgery.

Thank you everyone for your responses. I relayed as much information to Bonnie that I could, but unfortunately Jim's cancer was too far advanced. Jim passed away Saturday night after battling the cancer for only six months.

Oh my god! I'm do sorry for his family! Take care!