New and looking for some insight.

mkwalters88

And the ball is rolling!

Hey everyone! Just wanted to thank everyone for all the kind words and support. Apologies on the delay in responding to all of you it's been a crazy couple weeks. After 2nd Laryngoscopy with tonsillectomy was finally diagnosed as a true CUP. HPV negative kerratizing squamous cell carcinoma. Surgeon was pretty stunned by my age. Had 3 FNA's done all negative for p16/HPV. The tumor board was in agreement for an aggressive approach with upfront surgery (bilateral modified RND) follwed by chemo/radiation. Met my radiation and medical oncologists as well as the hospital dental clinic. Since I'm in the occult primary scenario the radiation fields will be more extensive which means all my remaining teeth need to be extracted (15) that was the biggest shock to me so far, as well as the bi lateral surgery. I didn't have the best access to dental care when I was younger but got on top of all that and wear partial dentures, I have all my front teeth top and bottom but mostly missing all the back ones. The teeth I have now aren't bad per say, but they have all had some work done to them at some point and the dentist said the risks of dental complications post treatment is really high and it's for the best to be safe in that regard. I'll do whatever I have to do to fight this for my beautiful partner and our 2 year old baby girl. Honestly the worst part for me in all of this is seeing my loved ones worried and scared. I'm grateful for the support and things like this are less scary when your not alone I just hate that other people are hurting by this. There was a clinical trial with the bio drugs that the medical oncologist was really pumped about but I have a pre existing condition that makes me ineligible. One thing my surgeon said was although Im young I couldn't be better suited for a trimodal treatment approach. Surgery is scheduled for May 17 with dental appts before and after then the fun begins! Thank  You all again for the support and taking time to share stuff with me. I'm going to make more of an effort to be more active on the site, been struggling with keeping a positive mindset, most likely because I'm keeping things in my head instead of talking about them, found some counseling centers nearby and also thinking of seeing a therapist as well. The cancer center I'm at provides all that stuff but it's about 45 min away so thinking something closer would be better. Gotta keep a positive outlook if I want to live and still be a good partner and father. Anyways I just wanted to thank everyone and give an update on everything going on. Hope all of you are well and have a great day! 

Tonita

I had a tumor carved out of

I had a tumor carved out of my tongue a little over a year ago.  I don't post very often but I come and read every day.  I consider myself extremely fortunate in that I didn't have any after treatment (chemo, radiation).  I will post if I think maybe I can help someone else and I'll give a vent if I need to.  It's a safe place and I encourage you to visit often.

MMDowns

mkwalters88 said:

And the ball is rolling!

Hey everyone! Just wanted to thank everyone for all the kind words and support. Apologies on the delay in responding to all of you it's been a crazy couple weeks. After 2nd Laryngoscopy with tonsillectomy was finally diagnosed as a true CUP. HPV negative kerratizing squamous cell carcinoma. Surgeon was pretty stunned by my age. Had 3 FNA's done all negative for p16/HPV. The tumor board was in agreement for an aggressive approach with upfront surgery (bilateral modified RND) follwed by chemo/radiation. Met my radiation and medical oncologists as well as the hospital dental clinic. Since I'm in the occult primary scenario the radiation fields will be more extensive which means all my remaining teeth need to be extracted (15) that was the biggest shock to me so far, as well as the bi lateral surgery. I didn't have the best access to dental care when I was younger but got on top of all that and wear partial dentures, I have all my front teeth top and bottom but mostly missing all the back ones. The teeth I have now aren't bad per say, but they have all had some work done to them at some point and the dentist said the risks of dental complications post treatment is really high and it's for the best to be safe in that regard. I'll do whatever I have to do to fight this for my beautiful partner and our 2 year old baby girl. Honestly the worst part for me in all of this is seeing my loved ones worried and scared. I'm grateful for the support and things like this are less scary when your not alone I just hate that other people are hurting by this. There was a clinical trial with the bio drugs that the medical oncologist was really pumped about but I have a pre existing condition that makes me ineligible. One thing my surgeon said was although Im young I couldn't be better suited for a trimodal treatment approach. Surgery is scheduled for May 17 with dental appts before and after then the fun begins! Thank  You all again for the support and taking time to share stuff with me. I'm going to make more of an effort to be more active on the site, been struggling with keeping a positive mindset, most likely because I'm keeping things in my head instead of talking about them, found some counseling centers nearby and also thinking of seeing a therapist as well. The cancer center I'm at provides all that stuff but it's about 45 min away so thinking something closer would be better. Gotta keep a positive outlook if I want to live and still be a good partner and father. Anyways I just wanted to thank everyone and give an update on everything going on. Hope all of you are well and have a great day! 

OK, so now you have a game

OK, so now you have a game plan.  It's sounds extensive but you can do it.  As a caregiver I can tell you that it is absolutely scary when you're loved one is sick.  But, we spring into action and fast when we need to.  The scariest part for me was the actual waiting on the treatments to begin.  It's the fear of the unknown and it is definitely unknown.  You will hear (you probably already have) "every patient is different. Every symptom and side effect is different."  So very true.  Unsolicited advice; communicate, communicate, communicate.  I read that it's not really your thing and that is OK, but emotions run high and roller coaster all over.  It may be tough, it may be unpleasant to hear at times, but it's so good to get it out.  You will have fears, and they will have fears and even though you're on this journey together, the road splits and you are on one and they are on the other.  You are already a good partner and Dad,  you're concerned for them, you're thinking of them.  I am also a firm believer in therapy.  As soon as my husband can talk without coughing we are going to ours...a lot has happened and we need a neutral party to help us navigate this "new normal".  Good luck.  Enjoy your time with your family now...laugh, and love, and talk.  We are here for you!