advice about surgery

Sumo

Hi everyone,

i am new to this forum. My dad (63 years) was diagnosed with squamous cell carcinoma at the base of his tongue last September. He has never smoked or drunk alcohol in his life. He received 35 sessions of radiation and 6 chemo sessions, which ended in November 2015. CT scan in March 2016 revealed there was still a lesion there, confirmed as a viable modately differentiated carcinoma through biopsy. At this point, he has been recommended surgery which will involve removal of some part of the tongue as well as a neck dissection. My parents will be getting a second opinion in a couple of days. In the meantime, my dad is having mixed feelings about the surgery. He is very apprehensive of post-surgical complications such as speech and swallowing, and quality of life. He already has dry mouth and swallowing problems as a consequence of the radiation. To give some additional background, my dad has already been through Hodgkins disease twice about 20 years ago, so he is understandably frustrated. I think one of the biggest challenges for him is to build the mental strength to face this next hurdle. I was hoping that I may be able to get more information and support on this forum, especially stories or anecdotes I could perhaps share with him to help him build his motivation to do this surgery. 

Thank you all in advance!

Sumo

CivilMatt

surgery

 

Sumo,

Welcome to the H&N forum, sorry that you are here.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  While I started with surgery on my tongue and neck, it was the rads which inflected the most trauma.  For me the surgery was much easier to live with.  

I can’t imagine that following rads your Dad’s spot is very large and should be removed without much fuss.  It sounds like they are being thorough in his care.

Best of luck,

Matt

wmc

Welcome to H&N group

Welcome and also sorry you need to be here. My tumor was just above my vocal cords on the left side the size of the first joint of a thumb. 3cm x2.5cm. First, they discussed in great detail what radiation was going to do. Then he was informed about my severe bullous emphysema so radiation was ruled out as I would not survive it. The only option I had to survive was to have surgery and remove my larynx, and breath through my neck. They also did a neck dissection on both sides as a precaution and removed 86 glands. I am glad they did the neck dissection. All were, but with them gone, there are no glands to attack. My neck is tight but I do stretching and it is all good. 

I can understand your father's doubts and frustrations. I wondered what my wife and son would think with me with this hole in my neck to breathe through. Then, what about going back to work. I too was 62 at that time. I did have a choice, have this surgery and live, or not have it and even with chemo forever it was not looking good. Now for me, it was the best decision I ever made. I did go back to work. I had to learn how to eat and swallow and also talk again. I do not regret my decision.  I can't say it is always easy. Mine was very life changing and worth every bit of it.

Your father will make the right choice for him, and whatever it is, he will need your support and understanding. I hope this might help.    https://www.youtube.com/watch?v=sL-ZuyhSMEM  This is a fun video I did for Stanford Medical to use to show persons that were going to have the surgery I had. Now remember my lungs are bad and it is stage 3 COPD.

Bill

Grandmax4

It takes time

I had di vinci robotic surgery in 2011 to remove my epiglottis, where a cancerous mass had decided to grow...

   Yes, I had trouble swallowing and speaking, BUT, with speech therepy, which includes learning to swallow a different way, I am here to say , it works..my voice is strong and loud, and clear...I can eat , drink and swallow anything. My quality of life is great, I enjoy every day I have been given  

swopoe

My husband had SCC of the

My husband had SCC of the oral tongue, and he had surgery (partial tongue removal and neck dissection as well as chemo and rads). The surgery was the easy part compared to the rads and chemo. My husband's speech was barely affected by the surgery (he sounds totally fine now) and the saliva problems he has are from the rads, not the surgery. He had the surgery first, and many of his side effects didn't start until after he started rads/chemo.

Good luck to your dad, he will be in my thoughts and prayers.

yensid683

it is never easy

I am, at this point, just over 4 years since diagnosis of SCC, stage IVa!  The primary was on the base of my tongue, I too never smoked and didn't use alcohol so it was an absolute surprise to find that the swollen glands were cancer!

I was treated similarly, I had a course of induction chemo, then concurrent chemo/radiation x 33 and then 3 months later a PET scan that revealed a couple of hot spots.  The first approach was 'wait and see' but the tumor board recommended surgery.  I had a selective neck dissection in October of 2012 that found 'weak, inactive remnant disease' and it was described as 'just a few cells'.  Fast forward to March of the next year, a second PET scan and the same issues were present.  A second selective neck dissection showed it as all scar tissue, so no worries.

The surgery and recovery from it was a piece of cake compared to the last 4 weeks of rads and the subsequent 4 months of recover.  It took almost a year for saliva to recover to a point that I could recognize it, and now it is almost back to normal.

At this point, it is very understandable that your dad is asking questions and sounds discouraged.  This is a marathon, not a sprint.

Hang in there, and fight the beast with all you've got!

Sumo

Thank you all for your

Thank you all for your support and kind words! I am sure my dad will feel better after reading this. I forgot to add that the biopsy report states that the carcinoma is observed "admist dense necrosis, and radiotherapy related changes are seen". I would imagine this is fairly standard following radiation. If you think otherwise, please let me know.

Thanks again for the support. I appreciate it very much!

Sumo