we are so confused...went to mayo for 2nd opinion

brigboo67

We are at mayo getting my moms 2nd opinion. The drs at home said that my moms stage 4a base of tongue cancer with mets to bilateral nodes (a couple measuring 2Cm) was treatable even curable. The primary tumor according to home is 5cmx4cmx2cm. Our 1st appt at MAYO was with the oncologist who said that it was treatable even curable with chemo/rad...she said she doesn't see any advantage to the induction....our 2nd appt was with an ENT surgeon...he had a young dr come in and examine my mom then the experienced dr came in and examined her...he set down in a chair and looked at my mom and said that she has already beat stats because 99.9 % of people with a tumor like my moms would already be dead and he is surprised that is has contained itself to the head and neck as it "appears" to have...he said appears because although the PET scan shows it has there is always that chance that it is somewhere else...he this is a tumor that will take her life...he said that after looking at all the scans that this tumor is massive and that it tis bigger than what Peoria says..that he has seen only 10 people in 30 yrs with this size tumor with varying outcome..he said we have 3 options...do nothing and die...chemo/rad or take the whole tongue (which will leave her with a trach...feeding tube and typing or writing all her words forever) followed by chemo/rad...my mom said she didn't want her tongue taken..he stood up and said "then you have made your decision...go home and have chemo/rad..I wish you the best and come back a month after treatment so I can see how you did with it"...we were in shock because no other dr we had seen had said the tumor was massive and that she is lucky she isn't dead already...so since he had said something so dif than the oncologist earlier in the day the nurse could see my mom was so upset she got us in with another ent at mayo yesterday afternoon...he said yes it is a large tumor but he has treated people with this size tumor before and seen them survive but he would go straight to chemo/rad and skip induction,,,has anyone else been told their tongue tumor was massive and survived???

Hondo

Hi brigboo
I am sorry to hear about your Mom having to go through this but you are in the right place at the Mayo Clinic for getting the best care. I been there and wish I would had done all my treatment with them. I am NPC and can’t help with tongue base but I think your Mom made a good decision keep the tongue and do the Rad & Chemo.

All the best to all of you, and welcome to out family here on CSN
Hondo

buzz99

Mayo's opinion
My hubby, Buzz, was diagnosed with base of tongue cancer in August 2010 and the tumor measured 4 x 2.6 cms. We also went to Mayo clinic, in Phoenix, for a second opinion. The ENT there gave us our options. Surgery sounded horrific because we were told Buzz would have most of his tongue removed, a trach (maybe permanently), a feeding tube (probably permanently) and would not be able to talk or swallow. Would anyone opt for that? We went home and he started induction chemo (to shrink the tumor) followed by 6 weeks of radiation with Erbutux chemo. He finished treatment January 10 and the first PET showed the tumor to be gone! He can talk normally and is eating 100% by mouth. The feeding tube will be removed soon. So, you have alternatives which don't involve surgery. All the best to you and your mom. We will be here for you every step of the way.

robinleigh

My husband just finished
My husband just finished treatment at Mayo. We leave tomorrow after being here for 2 months. He did have robotic surgery for tonsil and base of tongue. Then chemo/radiation. Our first appointment at Mayo with ENT surgeon, we were told that it was operable and curable even though Stage IVb. We asked if treatment would most likely be the same if we went to MD Anderson because we had scheduled an appointment there the following week. Dr. Moore told us that MD Anderson's approach is actually very different from Mayo's and that both places have a very similar survival rate. MD Anderson does chemo/radiation first and then they assess whether surgery is necessary. I would imagine that is the approach that is recommended for your mom.

An encouraging story...google People Magazine story about a chef out of Chicago who was told he would have to lose his tongue because of his tumor. He refused because his taste was his livelihood and passion and not an option for him. I believe, three years later he is winning major awards in culinary field and has a 4 star restaurant in Chicago.

Another encouraging story...when my husband found out that he had this cancer, a man from our hometown shared his story with us because he had tongue cancer. He is a radio talk show host so depended on his speech for his livelihood as well! He was treated at MD Anderson and did not have surgery. He had induction chemo and then radiation. Anyhow, obviously, there are options out there for everyone

Best of luck with all your decisions!

D Lewis

I say the ENT surgeon is wrong...
All he knows is surgery. He doesn't know chemo and radiation. No clue what they can do for your mom.

Deb