Stage 1 SCC HPV+ Journey

camlitlow
camlitlow Member Posts: 6 Member
edited September 2019 in Head and Neck Cancer #1

Hello all. I have not posted much on here but wanted to create a post that may, hopefully, help out others who are just starting their journey. To give a little back story, in April 2019, I noticed a lump on the left side of my neck. Went to my primary care who prescribed antibiotics. Those did not change anything so I looked for an ENT. He examined me and bluntly stated "this looks like HPV+ cancer". Talk about being floored. Did a CT scan with contrast, fine needle biopsy and a core biopsy. Yep P16 SCC. I then met with an amazing Head and Neck Oncologist at the University of Virginia. He examined me and stated that there was no sign of a primary but the Lymph Node really needed surgery. I was scheduled for Bilateral Modified Neck disection with concurrent Laryngoscopy biopsies (to see if the primary could be found) on June 29th. The surgery was not too bad other than the biopsy made swallowing quite painful and the 4 drains being pulled out was not a great time. Was out of the hospital in 3 days (2 overnights). Not bad for a 10 hour surgery. They almost did not find the primary but eventually did in the left sulcos (area between tounsil and base of tongue) so staging was Stage 1 T1N1M0. 2 weeks after surgery I met with the UVA Radiation Oncologist. I was prescribed 66 GY (33 days of treatment) of Tomotherapy IMRT on the left side only starting July 31st. Midway through, the Radiation Oncologist decided that since I had never smoked, do not drink and since the primary was really a patch of cells, not an actual tumor, he was okay with de-escalating me to 30 days from 33. My last day of treatment was September 10th 2019.

I go into all the detail above to let those who are just starting this fight know that there is light at the end of the tunnel even though it does not seem that way at the beginning. I thought I would never be done with Radiation treatment but it indeed ended. I lost 30 pounds from the start of surgery until now and have been on an Ensure only diet since week 3. But there is good in this. I was able to keep working all the way through treatment. I didn't need a PEG tube.

Everyone's journey is unique and radiation does affect everyone differently. I was fairly lucky the way the my body took the radiation. Your journey may be less, it may be more.

Below are some pointers that have helped me. Hopefully this may help anyone that may be starting their journey. Please let me know if I can answer any questions concerning the modified neck disection or radiation treatment.

Dental Care:

I ordered the Curaprox 5460 toothbrush from Amazon. This thing is amazing, super soft and really helps me be able to brush my teeth even with the sores

Sensadine toothpaste

Act No-Alcohol mouthwash

 

Skin Care:

Aquaphor Skin Protectent. Wife put this on for me everynight and every morning. So far, not much readness and skin problems (knock on wood)

Vit E oil for neck dissection scars. This seems to work well as my scars are starting to fade some

 

Food Replacement Shake (3 times a day)

1 bottle of Ensure

1 package of carnation instant breakfast

2 Tablespoons heavy cream

Ice

Blend till desired consistency

 

Comments

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #2
    Blessings to you

    Thank you for the encouraging email and positive news on your outcome.  God's Blessings be upon you.  One thing I could suggest is getting VHC Boost as meal replacement shake Very HIgh Calorie Boost can order off of Amazon has like 530 calories it is what got me thru.  HOpe it helps too.  You are right on about aquaphor and your suggestions are helpful as well. I did not have to have the neck dissection or radiation treatment but konw that so many others have gone thru this journey.  I pray we all may be NED and get thru our journeys together with our faith, hope and love of one another.  

  • bugsyboy
    bugsyboy Member Posts: 39
    #3
    Nice Post
    Congratulations! As you begin your way towards reaching your new normal, you'll plateau several times along the way. Do not despair. The shake that tasted bad today may taste good tomorrow. I remember I lived on grilled cheese and chocolate milk for what seemed like months because nothing else tasted good. I'm 5 years post SCC T1N2aMO at the base of my tongue with no defined mass and 33 radiation treatments. Some things, like watermelon, cantaloupe, and ice cream still haven't come back, but that's ok. Attitude makes the difference and yours is great. Thanks for sharing. Keep us posted and take care.
    Best of luck.
    Bugsy

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