My story

Russell8
Russell8 Member Posts: 7 Member
edited October 2021 in Head and Neck Cancer #1

2.9 cm Varrucous Carcinoma  Tumor inner right cheek T2NOMO  NECK DISECTION, RADIAL FOREARM FREE FLAP RECONSTRUCTION  March 2021

25 Radiation Oncology treatment. last  27 September 2201

The time between surgery and oncology is part of my journey with the VA.

My 69th birthday this year. . 

 

I live in a small town in MississippiNovember 2019 my dentist was concerned about an area inside my cheek. I called the Biloxi VA and earliest appointment was late January. She made an appointment with the ENT late March. He was in a hurry as the hospital was shutting down for covid and used me to teach his assitant on how to do a pinch type biopsy on the edge of effected area took several tries and it hurt. He said he would have pictures made next visit. Next saw him middle of June Oral lichen planus. Something must of looked od because he sat at his computer for a while and found I had been treated for Psoriasis previously. He thought that might be it. The next appointment with Dermatology was in October.

It was a training clinic from LSU. The resident had the teaching MD look at me said she did not have the facility to do a large biopsy and took a small punch. They called for a hospital photographer and had several pictures made.  Next appointment with Dermatology in  November. Resident visably upset weh she looked in my mouth and called for teaching staff and this time the MD was the head of thier department. The punch also said lichen planus but immediately that it has to be incised and to wait while he looked for a surgeon. Hospital still not fully open but was able to get a referral to a civilain oral surgeon for late December.

 I saw the original ENT late November and he  got angry that I was referrred to an outside surgeon. He took a quick glance towrds my mouth and said I was fine and gave me some anti fungal lozenges, His chart note said he was no longer folowing me as his patient.

When I saw the Oral Surgeon he said it was to large for him to excise but will take several large biopsies. He sent them to Tulane medical center in New Oleans, It was SSC.

Back to VA ENT in January who said Tulane makes mistakes often and it was not cancer. That I had to arrange the tissue sample to be sent to the Biloxi VA pathology lab. Luckily for me my care RN  researched how to get the tissue from New Orleans. He still hasn't taken a good look in my mouth since last march.

Late January Biloxi VA Path lab agreed it was cancer. VA ENT still disagreed and wanted it semt to the National Pathology Lab "becasue they had real scientists there" and the VA requires it (it doesn't) and that the VA would want to waste any more money .  Early Feb it was sent off.

 Early March I called the head of Pathology at Biloxi VA. He said he did not understand my call becuse I do have cancer. I told him the ENT said I could not have any treatment until the NAtion Path Lab report came back . He old me his office was just down the hall from the ENT and would consult with him.

15 minutes later got a call from the ENT. He asked me did I know I  had photographs of the tumor in my chart? the photo taken a month before my last visit with him.  He spoke rapidly saying lots af stupid stuff like "how did i miss the cancer" HOW ABOOUT LOOKING!!!He said I had several options for a flap and then said he had a colleague at the Air Force Base that could do a procedure he could not.

Magic words. OFF to the AFB surgeon, PET Scan then scheduled surgery 5 days after I met with AF doctor I had my surgery. The said it took 12 hours. I was kept sedated for 24 hours. 10 days in hospital total. Now it has been 17 months since that dental appt.   

Surgeon ordered Radiation treatment a total of 3 times at my followup visits. Being the VA they call me in June to ask if I had my Oncology treatments yet. Well they needed to get that done!! (no ****)

Saw Oncologist in August.  I would have 25 over 5 weeks last on 27 September.

2 weeks after radiation most of the pain gone , sore throat, no sense of taste. Some facail disfigurement . Stretch exercising mouth fight Trismus.

If I had seen an ENT with less of an ego there would have been much less tissue loss. I felt it growing larger then acoss the inside of my lips. I have a modest retirement income and no medical insurance as a disabled Vet i always went to the VA. I was not injured in combat.

I struggle with anger and depression.

 

Thank you for being there for me to tell my story.

 

Russell

 

PS quite emotional when I wrote so may have not caught all spelling and other errors.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    edited October 2021 #2
    Your Story

    Russell, 

    First let me say "Thank You" for your Service to our Country. Secondly, I am so sorry you had to deal with so much grief with your local VA ENT Doctor. I read your post yesterday and I got upset so I could not even reply last night.

    I just wanted to thank you for sharing your story with us. Once here you are Family, we get it....

    Since you are pretty recently out of treatment, you will feel the effects of the treatments for several weeks afterwards. We call it "Cooking" from the Radiation, much like a Microwave oven works. Taste will return but may be slow, ask questions here and some of the knowledgeable people will reply and offer suggestions. Try to measure improvement in weeks not days, you didn't have the Flu so it takes a bit longer to bounce back.

    If you are up to it, you may want to view the first Thread on the Board (Super Thread), many helpful suggestions about Head and Neck cancer there. 

    Again, thank you for sharing your story and we are glad you found us. 

    My Best to You and Everyone Here

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #3
    Well You Had

    Quite a journey and not straightforward either.
    I first want to second MarineE5 by saying thank you for your service to our country and I want to go an extra step and also extend thanks to MarineE5.
    That's quite a story and there were delays and mistakes made I believe.
    I think more biopsies should be done upfront rather than wait and risk a worse situation.
    They were certainly putting stuff off and passing the buck it seems.
    I am sorry your situation was not properly addressed in a more timely manner.
    It's no wonder you were emotional writing this bringing back the memories of it all.
    Please ask or run stuff by the folks on here we will help as best we can.
    Wishing You The Best-Take Care-God Bless-Russ

     

    https://www.youtube.com/watch?v=QgOBvm05IaQ

     

     

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