Diagnosed with Stage 3 SCC HPV positive
Diagnosed with Stage 3 SCC HPV positive.
My oncologist confirmed this diagnosis today.
Although he is having me see an ENT specialist, he feels strongly that since my cancer is only in one tonsil and one lymph node that no surgery is necessar. He is recommend 6 weeks of radiation 5 days a week with Cisplatin added the 1st, 3rd and last week of treatment. My PET scan is being scheduled to verify CT scan and no other locations. He is recommending a feeding tube for during the procedure as well as a cath port. He is also recommending removal of my teeth in the treatment area prior to beginning my journey. Just wanted to post as me and my family have many reservations due to the toxic nature of cisplatin. it is comforting many have completed this journey before me. Any tips helping my family through this also appreciated as they seem to be taking it much harder than me.
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I just got done (Jan 3) with
I just got done (Jan 3) with treatment for exactly the same diagnosis. I got carbol-taxil for chemo, but it was weekly for 7 weeks. Hard to say whether a few cisplatins are worse than weekly carbols.
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Welcome
RW,
Welcome to the H&N forum, sorry that you are here, but you might as well jump right in and get this chapter behind you.
I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads, Erbitux). It is not pleasant and not all bad, I laughed a number of times.
It is good they are giving you a PET. Normally, it will highlight all areas of activity. As I mentioned in your other post, some H&N members will PEG and others will not. A lot has to do with the doctors experience down that road.
My rad onc had to have a call from my dentist before treatment. My teeth were in decent shape and almost 5 years post, I still have them.
Start drinking lots of water and swallowing often, That was the BEST and the EASIEST advice I received from the H&N forum.
Tips for the family. Provide help and support if you are sincere otherwise stay away. Really, some people just don’t know what to do or say, others are great. What kind do you have?
Matt
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I did not get a PEG, and
I did not get a PEG, and later when they thought I might need one it was too late, and it was then a risky surgery. My ignorant impression is that a PEG will maintain you better, but may be hard to get away from later. No PEG will lead to substantial weight loss, but you will have less problems maintaining the ability to swallow. I lost 40 pounds, but my swallow recovery time was zero. Really, the medical validity of each approach is probably equal, and a judgement call by the oncol.
The port is a good idea, they are going to stick you many times otherwise. I got a PICC in week 5, and my hands were a mess from needles. But it is also a major risk for infection, so you will need to manage it agressively.
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ThanksCivilMatt said:Welcome
RW,
Welcome to the H&N forum, sorry that you are here, but you might as well jump right in and get this chapter behind you.
I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads, Erbitux). It is not pleasant and not all bad, I laughed a number of times.
It is good they are giving you a PET. Normally, it will highlight all areas of activity. As I mentioned in your other post, some H&N members will PEG and others will not. A lot has to do with the doctors experience down that road.
My rad onc had to have a call from my dentist before treatment. My teeth were in decent shape and almost 5 years post, I still have them.
Start drinking lots of water and swallowing often, That was the BEST and the EASIEST advice I received from the H&N forum.
Tips for the family. Provide help and support if you are sincere otherwise stay away. Really, some people just don’t know what to do or say, others are great. What kind do you have?
Matt
Most family has been great. I think this will be harder on my wife to watch as I go through this. There are those whose reactions and comments place me in the morgue already. I will be avoiding those during my treatment.
I was surprised the doctor was recommending a PEG. I asked him if I can still drink water and such by mouth even with the PEG and he said yes, but the farther into treatment I go I will be glad I have the PEG. I have already been getting schooled by my medical team.... water water water.
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Welcome to the Head & Neck.
Sorry, you need to be here. I always will recommend going to a large National rated hospital that has a tumor board. That way all the doctors get together and decide what is the best way for you. You want ENT because it is H&N. Oncology will always go with their profession. It is a very rough road, but many here have been down it.
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Thankswmc said:Welcome to the Head & Neck.
Sorry, you need to be here. I always will recommend going to a large National rated hospital that has a tumor board. That way all the doctors get together and decide what is the best way for you. You want ENT because it is H&N. Oncology will always go with their profession. It is a very rough road, but many here have been down it.
appreciate all the good insights given here. My wife just got an appointment next week with an ENT.
my Oncologist recommended this. i have also read recommendations for care and most seem to go straight to chemo and radiation with no surgery if it is advanced localized. Myself I am anxious to get going on this.
the oncologist said I am not an emergency case so I will have time to gather all my options and make a decision.
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CongratsAnotherSurvivor said:I just got done (Jan 3) with
I just got done (Jan 3) with treatment for exactly the same diagnosis. I got carbol-taxil for chemo, but it was weekly for 7 weeks. Hard to say whether a few cisplatins are worse than weekly carbols.
are you NED?
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Good to knowAnotherSurvivor said:I did not get a PEG, and
I did not get a PEG, and later when they thought I might need one it was too late, and it was then a risky surgery. My ignorant impression is that a PEG will maintain you better, but may be hard to get away from later. No PEG will lead to substantial weight loss, but you will have less problems maintaining the ability to swallow. I lost 40 pounds, but my swallow recovery time was zero. Really, the medical validity of each approach is probably equal, and a judgement call by the oncol.
The port is a good idea, they are going to stick you many times otherwise. I got a PICC in week 5, and my hands were a mess from needles. But it is also a major risk for infection, so you will need to manage it agressively.
the oncology team did say that I can still have food and water orally even with the peg in. Hopefully I can at least manage most of my water in take this way so I keep swallowing through this process.
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Husband did not have surgery
So sorry that you're here but you've come to the right place. My husband was diagnosed with Stage IV SCC HPV+ oropharyngeal cancer last May. Primary tumor was in lingual tonsil at base of tongue (BOT) and had spread to two lymph nodes on left side of his neck. He was given the option of surgery but the tumor board (combo of ENT oncology surgeon, radiation and medical oncologists) thought he'd still need radiation and chemo so they recommended not to have the surgery. They said the outcome should be the same if he has radiation and chemo without surgery vs surgery with radiation and possibly chemo and they didn't want him to have to endure all three. He finished 35 treatments of proton beam radiation therapy and 7 cisplatin treamtnets (once a week) on August 31. His PET scan in December showed no evidence of cancer (NED).
He started without a port because he has great veins but after 4 treatments they had to put in a port because of some clotting in his veins. So I personally think the port is the way to go. He almost got a PEG at 4 or 5 weeks but then decided to "tough it out" (his words, not mine). He was on a liquid diet for two months and lost 30 pounds. The good news is that he was able to eat many foods one month post treatment.
Everyone is different but that's his story. Hope it helps.
Wishing you all the best.
Nancy
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Teeth
a So sorry to hear of your diagnosis. Did an Oral Surgeon recommend the teeth removal? If not, I'd look for a 2nd opinion before they start pulling. My Oral Surgeon is part of my cancer team and all three kept in contact with each other regarding my condition. Lucky for me, my teeth were in good condition so they left them alone. As long as they think you'll lose them anyway then it may be the best course of action.
My C was different than yours so I can't give any advice about your procedures. What I will offer is my support for you and your wife. My wife had a very hard time being a caretaker. Yes, I suffered through the pain from surgery and rads but she felt helpless to do anything. Try to think of ways she can help you before you start treatment so she feels part of the team. In some ways I think she had a worse time of it than I did. Just my opinion of course.
Hopefully, in the near future you'll be posting a NED report and working on getting back to a new normal. Life as you know it is gone. But the future is still there waiting to happen. My outlook on life took a very positive lift after I healed. Everyone here helped me through it and I'm glad for all the support received.
Let us know how you progress. Just believe that one day it will be over and you'll start to feel a bit better day by day.
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tommyodavey said:
Teeth
a So sorry to hear of your diagnosis. Did an Oral Surgeon recommend the teeth removal? If not, I'd look for a 2nd opinion before they start pulling. My Oral Surgeon is part of my cancer team and all three kept in contact with each other regarding my condition. Lucky for me, my teeth were in good condition so they left them alone. As long as they think you'll lose them anyway then it may be the best course of action.
My C was different than yours so I can't give any advice about your procedures. What I will offer is my support for you and your wife. My wife had a very hard time being a caretaker. Yes, I suffered through the pain from surgery and rads but she felt helpless to do anything. Try to think of ways she can help you before you start treatment so she feels part of the team. In some ways I think she had a worse time of it than I did. Just my opinion of course.
Hopefully, in the near future you'll be posting a NED report and working on getting back to a new normal. Life as you know it is gone. But the future is still there waiting to happen. My outlook on life took a very positive lift after I healed. Everyone here helped me through it and I'm glad for all the support received.
Let us know how you progress. Just believe that one day it will be over and you'll start to feel a bit better day by day.
some time back I lost many teeth to an accident and have partials already.
They are recommending removal and then post recovery implants
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You Can Do This!
Sorry to hear about your diagnosis. In Jan of 2015, I was diagnosed w/stage 4 SCC HPV positive as well. My cancer was on the base of my tongue, lymph nodes and tonsils...I had a great surgeon, Dr Dale Brown at Wake Forest Baptist Medical Center and did my chemo and radiation back at home in Hendersonville, NC. My treatment was much . I same as yours. 30 sessions of radiation and 6 weeks of cisplatin for the chemo.
Everyone is different, but I did fine with the cisplatin. Never sick. It did keep me up after each treatment
I finished all my treatments at the end of June 2015. Now it looks like everything is clear. Still testing, but all is looking good and I've even put some weight back on.
You can do it. You will do it and you will always have good support and prayers. Your family will be fine once they realize that it's still the same you and you are a fighter!
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NED exam comes 3 months afterRusticWindmill said:Congrats
are you NED?
NED exam comes 3 months after end of treatment. They keep you hanging.
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when my husband went in for
when my husband went in for about same treatment just finished up 6wk chemo with 35 radiation. They told him only teeth that may need to come out anyway at some point would have to be removed prior to treatment. It has to do with bone damage from the treatment. We were told if he waited til after treatment it may not heal right. I wish you luck and much support. I hope everything goes smooth for you.
My question to those who have gone through this is how long did it take til you were feeling "normal" if you ever really do after. If you have feeding tube did you have it for long after treatment? My husband still cannot swallow without it causing him to gag but he is also dealing with thrush.
my husband is about 2 months done with treatment now the waiting continues to see if it worked.
You are correct Rustic Windmill it is very hard to watch your love one go through this. For me it was a feeling of helplessnes. There is nothing I can do to make him feel better it is just takes time and that is the hard part waiting for my husband to be him again. I know I still need extra I love you or smiles or little rubs. It helps me when I start feeling down like it will never end. my advice is to ask for anything that could help you feel better.if it is an extra pillow or blanket anything. Your wife will prob go to your appointments if not make sure she knows everything and feels comfortable talking to your doctors. Do normal things until you don't feel good enough to do them. Most of all let them help you. I know I drive my husband crazy sometimes asking if he has done his mouth rinse, did you take your nause med? I get the eye roll sometimes but I need to know cause I love him. I can be the nagging wife but that is what found this cancer and he was stage 4a hpv caused tonsil and 3 lymph-nodes.
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welcomeJennifer_J said:when my husband went in for
when my husband went in for about same treatment just finished up 6wk chemo with 35 radiation. They told him only teeth that may need to come out anyway at some point would have to be removed prior to treatment. It has to do with bone damage from the treatment. We were told if he waited til after treatment it may not heal right. I wish you luck and much support. I hope everything goes smooth for you.
My question to those who have gone through this is how long did it take til you were feeling "normal" if you ever really do after. If you have feeding tube did you have it for long after treatment? My husband still cannot swallow without it causing him to gag but he is also dealing with thrush.
my husband is about 2 months done with treatment now the waiting continues to see if it worked.
You are correct Rustic Windmill it is very hard to watch your love one go through this. For me it was a feeling of helplessnes. There is nothing I can do to make him feel better it is just takes time and that is the hard part waiting for my husband to be him again. I know I still need extra I love you or smiles or little rubs. It helps me when I start feeling down like it will never end. my advice is to ask for anything that could help you feel better.if it is an extra pillow or blanket anything. Your wife will prob go to your appointments if not make sure she knows everything and feels comfortable talking to your doctors. Do normal things until you don't feel good enough to do them. Most of all let them help you. I know I drive my husband crazy sometimes asking if he has done his mouth rinse, did you take your nause med? I get the eye roll sometimes but I need to know cause I love him. I can be the nagging wife but that is what found this cancer and he was stage 4a hpv caused tonsil and 3 lymph-nodes.
Jennifer_J,
Welcome to the H&N forum, sorry that you are here, but happy you are on the healing side.
Rumor has it, once finished you are Abi-Normal from then on. So, welcome to the club.
I had my PEG popped at 2 weeks post and was happy to see it go. I wasn’t eating much, but had a happy hankering for smoothies (burned up one blender and bought another).
Your new normal is just waiting for you to heal. Swallowing and gagging may persist for some time, but you learn to live with you modified eating and swallowing equipment and go on to enjoy food once again (at least most do).
Have fun.
Matt
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Tongue pain 8 months later
I also had stage 3 SCC HPV+. No surgery, just radiation for 6 weeks and cisplatin x6. But here i am 8 months later, still dry mouth and tongue pain on the same side as the tumor. Has anyone gone through this? Also no dental issues before treatment, but afterwards 6 cavities and 2 crowns, and still need 2 more crowns with cavity repair but after 3 hours in the chair i had to call it quits. But the burning sensation in the tongue is the most agravating. Any thoughts?
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implantsRusticWindmill said:some time back I lost many teeth to an accident and have partials already.
They are recommending removal and then post recovery implants
Make sure you are seeing a dentist that has lots of experience with cancer patients, especially BOT. Implants in the lower jaw is iffy, i was told.
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Getting nutrition after (and during) treatment
I bought one of those ninjas that mix right into a drinking cup, and made shakes. I started with an Ensure protien shake, then added fruit (lots of bananas) and berries, and if it was too thick i added milk. I got those fat straws to drink through. I managed to maintain my weight within 10 pounds, and recovered the weight loss pretty quick afterwards. I'm skinny at 155, and never got below 145. I'm probably closer to 160 right now, since I can't get out and walk due to all the snow and ice in idaho.
I do have energy issues, pretty much tired all of the time, but i never missed a day of work throughout the treatments and recovery. My company did finally make me take a week off since they were worried i was overdoing it!
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