No radiation or chemo

slk2015

I am starting this to ask if anyone else here only had a glossectomy and partial neck dissection, with no radiation or chemo.  Most everyone seems to have one, the other, or both.  I'm just curious.  I guess i feel lucky to have avoided all of that and am wondering if this is very unusual.   (I had stage 2, but it had not spread to the lymph nodes.)

zaac23

not unusual

this isn't unusual. this is great, you have many options remaining if the cman returns

LiseA

That's really amazing and

That's really amazing and wonderful.  I would be celebrating. Mine had gotten to the lymph node so besides the neck dissection, removal of 3 teeth and gums and  39 lymph nodes removed, they recommended radiation and chemo. I said no to chemo, so they are treating me with more rads to compensate. 

 

wmc

I only had surgery.

I had my larynx removed and a neck dissection on both sides. They did level 2-5 and took 48 glands on the left and 38 glands on the right side, as a precaution and all were clear. They did the pathology in the surgery room so when I came out we had all the results.  Did not need chemo or radiation. That was 34 months ago and still NED on every check up. Also, never have had to have a PET scan after surgery.

Bill

LiseA

Bill, where did you have

Bill, where did you have yours done?

slk2015

LiseA said:

That's really amazing and

That's really amazing and wonderful.  I would be celebrating. Mine had gotten to the lymph node so besides the neck dissection, removal of 3 teeth and gums and  39 lymph nodes removed, they recommended radiation and chemo. I said no to chemo, so they are treating me with more rads to compensate. 

 

Celebrating

I am very happy my cancer was caught so soon.  I'm not complaining, I'm just wondering how often it happens.  

slk2015

wmc said:

I only had surgery.

I had my larynx removed and a neck dissection on both sides. They did level 2-5 and took 48 glands on the left and 38 glands on the right side, as a precaution and all were clear. They did the pathology in the surgery room so when I came out we had all the results.  Did not need chemo or radiation. That was 34 months ago and still NED on every check up. Also, never have had to have a PET scan after surgery.

Bill

Only surgery

I vaguely remember reading either one of your posts or your profile and it said you had no surgery.  Thanks for reminding me.    

The lucky one

My story sounds very similar.

My story sounds very similar. I had stage 1 anterior tongue squamous cell carcinoma and only needed a partial glossectomy with partial neck dissection to make sure nodes were clear. I am in awe of everyone who has been through so much more than me and was also wondering how common it is to not need chemo/radiation with this diagnosis. Also wondering how common it is for my age group to have this? I am 37, nonsmoker nondrinker and HPV -

slk2015

The lucky one said:

My story sounds very similar.

My story sounds very similar. I had stage 1 anterior tongue squamous cell carcinoma and only needed a partial glossectomy with partial neck dissection to make sure nodes were clear. I am in awe of everyone who has been through so much more than me and was also wondering how common it is to not need chemo/radiation with this diagnosis. Also wondering how common it is for my age group to have this? I am 37, nonsmoker nondrinker and HPV -

Age?

Thank you for your comment.  I was 59 when I got the cancer.  I was also a nonsmoker, nondrinker and HPV-.  The ENT said he had no idea what caused it.  

swopoe

My husband was 40 when he was

My husband was 40 when he was diagnosed with stage 1 SCC of the tongue last fall. He was also HPV-, non smoker, non drinker. His doc suspects his diagnosis may be autoimmune related. While his cancer was small and did not spread to any nodes, he had chemo and radiation in addition to the partial glossectomy and neck dissection. He did this because his tumor had peri neural invasion and his docs said that because he was young with a family, they wanted to hit the cancer as hard as possible. Now at 6 months post treatment, he is NED and doing great, so I think we all made the right decision. Fingers crossed.

wmc

LiseA said:

Bill, where did you have

Bill, where did you have yours done?

Mine was done at Stanford.

I had many to choose from, but with my research, I went with Stanford Medical. I had other health problems and when I met with the tumor board, which was the next week after my lung doctor called them. They only do the tumor board on Thursday and he called Wed, in the afternoon so I had to wait a week.  I was coughing blood and large amounts and aspirating as well. My Lung doctor found the tumor and did only a brushing. He was afraid if he did a biopsy, he could not stop the bleeding and I was in a hospital, and he was afraid.

Stanford did the PET/CT and had all my x-rays, CT, throat swallow study. I got the doctor I wanted and he was the head of everything. Anyway, he sat down and said, Your lungs are bad and you will not survive surgery or radiation.  He then said the only way they will do this is if they remove my larynx, and I will breathe through my neck forever, but with that, we can get air to you and remove the tumor. Not really a choice, be a neck breather, or see how much time I have.  According to ACC with stage 3 supraglottic SCC your odds are 53% to see the 5 year mark. Going into surgery I was stage 4 [T4; N2; M0] but came out T3; N0; M0 and stage 3. 

I am very involved with a support group for other Laryngectomy's and am Admin for the Facebook Group and their online form I am the host. Stanford asked if I would do some videos so they could share how much I have done, and some simple devices I made to do thing's we no longer can. They show them to the ones that will have to go through this life changing process living with no vocal cords, and learning how to swallow as most of what you use to swallow is attached to the larynx, and we don't have one.

I have talked/written hundreds and I don't have the problems so many do. I had a better surgeon and it matters.

This is me doing what they say we can't.  https://www.youtube.com/watch?v=sL-ZuyhSMEM  I now have 9 videos they use and they have been seen in 70 countries. [I think only 30 countries watched them, the others just clicked on them]

 

Bill

LiseA

Swopoe, where did your

Swopoe, where did your husband get treated?

swopoe

LiseA said:

Swopoe, where did your

Swopoe, where did your husband get treated?

In Houston at Memorial

In Houston at Memorial Hermann Hospital, although his rad onc is also affiliated with MD Anderson. His oncologist and ENT/surgeon are docs with University of Texas.