Will radiation and chemo be a part of my treatment can I forgo that part?

Sabrina23

I am 57 year old female diagnosed with stage 1 tongue cancer base of tongue on left hand side.  I am writing to ask they are doing a partial or glossectomy they said with a thigh graft and then neck dissection - will i have to have radiation or chemo treatments after surgery?  Or can I be spared of that and forgo the treatment - what are my chances of not having to go thru radiation and chemo?  Will I be 100% cured with just surgery.  Will they tell me the pet scan results soon?  I am having one Tuesday?  I have my surgery on June 3rd - they said I will need feeding tube and neck tube - how long do those stay in?  Can I go back to eating normal food after tube comes out?  What kind of diet should I be on - foods to have and foods not to have?  What kind of exercise should I do.  I pray to God and St Jude that I don't have to do radiation ane chemo and that I have no perineural invastion or lymphovascular invasion that surgery got it all out and that will be all I need to go thru forever.  Never to have cancer show up again in any part of my body whatsoever. I am praying so hard and I pray for everyone on this board and forum you are all angels of God and I am getting thru this time by the communication I am having with all of you sharing your experiences.  Thank you with all my  heart fo those that respond to me God Bless you all. 

ERomanO

I didn't want to do chemo...

... but I followed my doctor's (and medical oncology's) recommendations and did 35 radiation treatments and 3 chemo treatments.  I had it pretty easy, but it was still rough going for a while.  It's almost one year later and I feel great.  Just plan on throwing away a year of your life because you'll need that time (or longer) to be focused on recovery.

swopoe

It is going to depend on the

It is going to depend on the pathology of the tumor and how close the margins are and if all the nodes are clean. I hope you can avoid all chemo and rads. Fingers crossed!

johnsonbl

NCCN guidelines...

Sabrina, you've asked like 4 questions on this board over the last day or two so it's apparent you are pretty nervous...but good for you for seeking out information.   The folks who are active on here have been through the ringer and have a wealth of knowledge to share and are happy to do it.

Regarding chemo and radiation, there are pretty specific guidelines about what the generally accepted treatments are depending on all the variables that your cancer team identifies...  They are called the NCCN guidelines.  They look at whether your disease is related to HPV or not, they look at whether they can find the primary tumor and how large it is, they look at specific features on that tumor like whether it shows signs of being extra aggressive, they look at whether or not it has spread to nodes in your neck...  Depending on all these different things they will likely refer to the NCCN guidelines to tell them whether you are at low, medium or high risk and that will guide your treatment.  Some folks have just surgery and then watch and wait.  Others have surgery and then 1 or more adjuvant treatment like chemo and/or radiation.

As others have said, it can be rough but it's doable.  Accept what their treatment plan is and then go after it with all you have.  There are a lot of stories out there about folks who opted for less than recommended treatment and it turned out to be not enough.  Good luck to you!

Brandon

Sabrina23

johnsonbl said:

NCCN guidelines...

Sabrina, you've asked like 4 questions on this board over the last day or two so it's apparent you are pretty nervous...but good for you for seeking out information.   The folks who are active on here have been through the ringer and have a wealth of knowledge to share and are happy to do it.

Regarding chemo and radiation, there are pretty specific guidelines about what the generally accepted treatments are depending on all the variables that your cancer team identifies...  They are called the NCCN guidelines.  They look at whether your disease is related to HPV or not, they look at whether they can find the primary tumor and how large it is, they look at specific features on that tumor like whether it shows signs of being extra aggressive, they look at whether or not it has spread to nodes in your neck...  Depending on all these different things they will likely refer to the NCCN guidelines to tell them whether you are at low, medium or high risk and that will guide your treatment.  Some folks have just surgery and then watch and wait.  Others have surgery and then 1 or more adjuvant treatment like chemo and/or radiation.

As others have said, it can be rough but it's doable.  Accept what their treatment plan is and then go after it with all you have.  There are a lot of stories out there about folks who opted for less than recommended treatment and it turned out to be not enough.  Good luck to you!

Brandon

how long does tongue cancer surgery last

About how long does tongue cancer surgery last is it like a quick procedure when you have a glossectomy and neck dissection? They said they were going to do a flap reconstruction what does that mean?  Can anyone share their experiences with this on flap reconstruction, glossectomy and neck dissection? Thank you for helping me

motorcycleguy

Sabrina,

Sabrina,

I was diagnosed with Nasopharyngeal Cancer (left nasal passage). I have subsequently had 35 radiation treatments, and I'm on my 2nd (of 3) follow up chemo treatments.

I sincerely hope that your Doctors tell you that no further treatment is needed!

But, I'm here to tell you that, although it is challenging - the follow up treatment is certainly survivable to a strong, positive person. And, you will very likely live at least 30, maybe 40 more years, after it is all over!

The most important thing is to knock it out in the long run, so you have time with your loved ones. One thing about these types of diagnosis, they remind you how precious your life is, and you tend to start telling the people you love ... that you love them, quite often!

I wish you the best of luck, no matter the outcome. You're seeking help, and advice - which automatically tells me that you're very likely going to be a survivor!!

Motorcycleguy (aka: Curt)

johnsonbl

Sabrina23 said:

how long does tongue cancer surgery last

About how long does tongue cancer surgery last is it like a quick procedure when you have a glossectomy and neck dissection? They said they were going to do a flap reconstruction what does that mean?  Can anyone share their experiences with this on flap reconstruction, glossectomy and neck dissection? Thank you for helping me

I can't comment on that...

It wouldn't surprise me if a flap reconstruction could take 10 hours...  Basically it means they are taking tissue from one part of your body and using it to rebuild your tongue...  My neck disection was along with tonsillectomy and I think I was in for 5-6 hours.

 

Brandon

ERomanO

Sabrina23 said:

how long does tongue cancer surgery last

About how long does tongue cancer surgery last is it like a quick procedure when you have a glossectomy and neck dissection? They said they were going to do a flap reconstruction what does that mean?  Can anyone share their experiences with this on flap reconstruction, glossectomy and neck dissection? Thank you for helping me

I ran into a friend on Saturday....

... that had tongue cancer.  She only had surgery.... didn't want chemo or radiation.  They cut out the tumor and she also had a neck disszection.  I didn't get all of the specifics like whether it was HPV+ and what stage, but I remember her saying one surgery was (and I'm going by a weak memory here) something like 13 hours and the other 9 hours.  They could've been longer.

Edited for error

OKCnative

I took the opposite approach.

I took the opposite approach. My first doctors wanted me to have robotic surgery on my tongue and radical neck dissection followed by radiation and chemo.

I rejected that idea (partially based on people I met in this forum). I sought a second and third opinion. The oncologist I choose said my treatment plan was ultimately up to me. She said they could do the robotic surgery and the neck dissection. However, she said they could also just do the chemo and radiation and then re-evaluate and see if I really needed any surgery at all. I also had the option of a feeding tube - which I also rejected. 

I'm so glad I kept seeking opinions.

While the chemo and radiation were no treat, I've met too many people who continued to suffer both physically and emotionally from tongue and neck surgery. I also know people who struggled to wean themselves from their feeding tube.

I'm almost two years post treatment (3 big doses of chemo and 35 radiations for stage 3 BOT HPV+ cancer) and I've been basically 100% for most of that 2 years with zero evidence of any cancer remaining.

The chemo and radiation sucks, but it's doable and thousands have already walked that path.

 

Good luck to you!

dnelson964

opposite approach

Yes there are other options. Try to avoid getting a feeding tube, harder to recover later from. Make healthy blender drinks and it will go down easier and give enough nourishment. I suggest you find a Proton treatment center also as there will be less pain and less healthy tissue damage later. You can have a RX mouth numbing rinse prescribed later if needed temporarily also. Have your blood Vitamin D level checked (edited by CSN staff). Try a keto diet going forward also to help prevent cancer return.

Always other better was if you investigate.

OKCnative

BOB438 said:

I opted out of radiation

I was given the option for radiation (35 sessions) and chemo after I had a cancerous liason removed from the floor of my mouth in 2017, cancerous lymph node removed from my left neck (june 2018) the right neck (August 2018).  I heard of all the horror stories about the after effects of radiation.  I had a Pet Scan in December 2018, all clear.  I had another Pet Scan in June 2019, all clear!  My surgoen did a visual inspection of my month and it too is all clear.  He sees me again in October for a visual, then is recommending a Cat Scan June 2020.  I am so happy I choose not to do radiation and chemo.  If I did choose to go that route the doctors would have said I am clean because of the treatment.  It's you body, your choice.  

I'm 2-years post with no ill

I'm 2-years post with no ill effects of either the radiation or chemo. 

BOB438

I opted out on radiation and chemo. So far so good

Sabrina you can read my story and situation under the Head and Neck Cancer Group under the topic "Radiation or No Radiation".  In short I opted out of the recommended radiation and chemo treatment.  Glad I did, last 2 Pet Scans came back clean (Dec 2018 and June 2019).  

Sabrina23

BOB438 said:

I opted out on radiation and chemo. So far so good

Sabrina you can read my story and situation under the Head and Neck Cancer Group under the topic "Radiation or No Radiation".  In short I opted out of the recommended radiation and chemo treatment.  Glad I did, last 2 Pet Scans came back clean (Dec 2018 and June 2019).  

Thank you All for all your responses I really appreciate it

Thank you all for all your responses I really appreciate it.  Bob I will check out under Radiation or No Radiation to read your story.  Thanks for posting to me.  God Bless everyone on forum your kind thoughts and responses and prayers are so much appreciated.  I am eternally grateful for all the help and support. 

Sabrina23

Just an FYI

See my post under good news to share as my Doctors recommended no radiation and chemo - surgery was the treatment for my particular case.  

BOB438

I opted out of radiation

I was given the option for radiation (35 sessions) and chemo after I had a cancerous liason removed from the floor of my mouth in 2017, cancerous lymph node removed from my left neck (june 2018) the right neck (August 2018).  I heard of all the horror stories about the after effects of radiation.  I had a Pet Scan in December 2018, all clear.  I had another Pet Scan in June 2019, all clear!  My surgoen did a visual inspection of my month and it too is all clear.  He sees me again in October for a visual, then is recommending a Cat Scan June 2020.  I am so happy I choose not to do radiation and chemo.  If I did choose to go that route the doctors would have said I am clean because of the treatment.  It's you body, your choice.