Greetings from New Member

Adri28
Adri28 Member Posts: 4 Member
edited June 2022 in Head and Neck Cancer #1

Hello All !

My name is Adrianna I am semi-new to this club. After years of voice fatigue, voice hoarseness and being followed by an ENT at one of my follow-up visits he saw a lesion on my rt vocal cord on January 25, 2022. I was scheduled for surgery on Feb 9th and based on the first/final pathology I was diagnosed on Feb. 17th with BASOSQUAMOUS CELL CARCINOMA. P16 BY IMMUNOSTAIN POSITIVE (STRONG DIFFUSE STAINING PATTERN) Rt vocal cord after CT scan did not show lymph node involvement I was staged at 1 A with a good prognosis.

Note: on my other documents as a diagnosis it says, "LARYNGEAL CANCER, GLOTTIS", "T1a N0 squamous cell carcinoma of right glottis" my question is are all of these synonymous?

After consulting with the first surgeon, he stated I was not a candidate for surgery due to being HPV +. I sought a second opinion and attended Tumor Board and the final recommendation was laser surgery. I had a radiation oncologist tell me I had SURGERY, RAD, and CHEMO as weapons in my arsenal based on what he saw he recommended I do surgery to keep radiation as an option in case of reoccurrence. I felt comfortable with that plan, I had a lesion resected with a KPI laser on March 29th. After 2 weeks of healing, I noticed voice hoarseness. I was in the process of changing insurance providers so I had to wait to be seen only to find out I had a growth on top of the original location. Surgery was scheduled for May 25th. Pathology came back clean, it was a granuloma with some mild dysplasia. Dr stated surgery went well, my voice sounds excellent considering 3 surgeries and 2 tumors in 4 months so I was placed on active surveillance as of June 7th. However, shortly after my post-op, I struggled with acid reflux and developed rt. ear pain. When I get up quickly or strain I also hear an echo sound for a few seconds. The ear pain radiates to my jawline as if I ate something tart/sour. I am so concerned about reoccurrence or that maybe they did not catch something. I reached out to the surgeon to see if I can be seen or have more testing (i.e. CT or PET), that part of my body just does not feel right. Not sure if it's the "wait and see" /surveillance anxiety that is also messing with me.

I look forward to hearing about all of your experiences. I am grateful for platforms like this one. Wishing everyone wellness.

Adrianna


 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member

    Hello Adrianna and welcome to the club that as we always say no one really wanted to join. It looks like you have had your share of cancer, especially since you had 3 surgeries and 2 tumors in 4 months. You share a common apprehension among people who have had cancer that a recurrence will happen. We all go through that and it diminishes over time but is always there in the back of our minds. The acid reflux you should be able to take medication to control it, ask your doctor. As far as your echo and ear pain it may be due to the surgery and some nerves were cut, nicked, or disturbed possibly. These effects may change or diminish over time and go away. I developed a spot at my back molars on the side of my last operation for a lymph node where my cheek is and sometimes when I bite down I must pinch or scrape it a bit and it feels like a sore spot like a mouth ulcer. Both my ENT and Dentist have looked at the area and said it looks perfectly normal and my recent CT scans showed nothing they were clear Praise, God. So my ENT thinks it is probably a nerve giving me this sensation. Your situation may be a nerve also. As far s being on surveillance, or monitoring, whatever you want to call it. Your ENT is normally the front-line guy that keeps watch on you. And depending on your case is how often he will see you and order scans. After my first cancer of the throat treatment, I was seeing my ENT once a month and getting scoped and checked. Then as time moved on and I proceeded to get better he moved my monitoring out to 3 months, then 6 months etc. I am now over 2 years out from my last cancer episode and see my ENT every 6 months due to my case and get CT scans with dye of the head and neck area once a year and a chest CT is done also because that is where they say this cancer can end up going to. So Adriana you should also get a CAT scan with dye of the head and neck area probably every 6 months since you are fresh out of treatment. Then down the road once a year. Check with your ENT as per your particular case. As far as anxiety of cancer returning or a new case coming up we all have that, even people that never had cancer. You just have to keep busy and concentrate on enjoying life and you will think about it less, it's something we have to manage but there's no secret to it.

    Also just curious where did you get your treatment, was it a cancer center? And also I was wondering many times they will give you at least some light radiation as a follow-up to eradicate any errant cells that would be left after the operation, did your doctor give a reason for no radiation? I am guessing he was very confident in the fact that the operation had clear margins and they got all the cancer.


    So, Adrianna, I hope some of this helps and you stay cancer-free.

    Wishing You the Best

    Take Care God Bless-Russ

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited June 2022 #3

    Adrianna,

    I'm very sorry to hear about this. Cancer is always tough, when it comes to waiting for follow up results.

    You're in the right place at CSN, though. There's nothing like talking to people who have "been there".

    One of the great positives, that I pick up right away from your posting - is that you have a great attitude, and I sense you're a strong, resilient person. That's priceless, to help you through this process - and moving on, afterwards!

    Anyway, I look forward to hearing about your follow up test results, and I hope you get the ALL CLEAR, and the symptoms you described are easy to clear up)!

    Curt

  • Duggie88
    Duggie88 Member Posts: 760 Member

    Adrianna

    Follow up visits can be the worst not to mention every time something hurts you tend to tie it in with cancer. Soon after my throat cancer I had a pain in my leg and my first thought was....now I have leg cancer. Same way with scans, my first , three months after completing radiation, I had to wait two weeks to get the results. One thing I have tried to do is not allow cancer to control my life. I've had it three times now and I keep telling myself if the thoughts of having it again last more than 30 seconds, that's 30 plus seconds of my life I wasted on something I have no control over. If cancer attacks again, I'll kick its a.. again. Easier said then done but it works for me. (90% of the time) People that never had it can not begin to know how we feel and how it affects not only our daily lives but also in the future with what I like to call, the "WHAT IF FACTOR". I rambled on enough so I will go back to my corner.

    StayPositiveStayStrong

    Jeff

  • Adri28
    Adri28 Member Posts: 4 Member
  • Adri28
    Adri28 Member Posts: 4 Member

    Hi Russ,

    Thank you so much for your response. My circle has changed and I value the connection with fellow survivors. I am hopeful the ringing in my ear is the after-effects of surgery and just focussing on picturing a healed area. My journey started at Kaiser Permanente. Unfortunately, my father passed away from Cancer and our experience with Kaiser was not a positive one. When I was diagnosed in February, I had a similar experience but I reached out to Scrips MD Anderson in San Diego for a second opinion and received the support I needed. I quickly realized I needed to make a change come open enrollment in April. My first 2 surgeries were with Kaiser ( two different surgeons), the 2nd surgeon felt he had clear margins and caught it all. I changed insurance providers on May 1st ( bold I know) but I felt it was the right thing to do, it gave me more options. I had my 3rd surgery at UCSD ( for some reason Scrips MD Anderson was not in Network with Anthem Blue Cross). The experience and recovery were very different/better than the last two however I am a little concerned my case may have been lost in translation. My follow-up of every 3 months with scope but no scan has me a bit concerned since per my initial diagnosis of Basosquamous cell carcinoma has a tendency for going to lymph nodes. I scheduled to see the ENT in two weeks. He said we can discuss the scan, so I am a little more comfortable with that plan. Right now I am focussing on doing what is in my control keeping ( my nutrition ( which the Dr.s never talk about), my mind, and spirit) as healthy as possible. I never want to lose that "I want to soak up every second" mindset this cancer diagnosis has encouraged.

  • Adri28
    Adri28 Member Posts: 4 Member

    Hi Curt,

    Thank you for your message. It is encouraging to hear from others that have "been there"! I will keep you all posted, I am hopeful my symptoms will clear up.