Recurrence-ish

Mmeister15
Mmeister15 Member Posts: 1
in Head and Neck Cancer #1

Hello everyone,

I've been lurking for quite some time and have decided to post in search of advice/support/optimistic thoughts.

I was diagnosed at 32 with OSCC on the left lateral tongue in August after eight months of misdiagnosis. Initially clinically stage I post MRI and CT. Received a partial glossectomy, free flap, and left neck dissection that same month. Free flap had multiple clotting issues which resulted in two additional surgeries to salvage, which ultimately failed. Free flap was removed, skin graft was placed and I was packed with gaws for four weeks, accompanied with a trach tube and nose feed tube during that time frame.

Final path showed single lymph node metastasis(4mm mass) and lymphovascular invasion with the primary tumor (stage III). Elected for six weeks of radiation on the left side. Rang the bell (seemingly) on 17Nov.

Last week a I felt a swollen node on my right side(opposite side) and the wife convinced me to walk in to ENT a couple weeks early. Ultrasound (didn't look good), biopsies (one lymph node and a suspect spot on my recently radiated left tongue), MRI, and PET scan ordered.

Quite terrifying. Received a phone call on Friday immediately following the MRI that the lymph node biopsy was positive, no word on the tongue. I requested she call me back after she reviewed the MRI and PET that evening. She called, no distant mets, three nodes on right side lit, tongue appeared to be scar tissue.

Went in to ENT today. Tongue biopsy was atypical due to radiation but not malignant, goodnews! I did not want a radioresistant tumor that literally manifested as I was being treated. Right neck dissection scheduled for 16Feb. I'm pushing for right side radiation and chemotherapy this time around.

Questions, comments, input, concerns? Uplifting stories? Thank you for your time.

Josh

Comments

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #2
    Hello Josh

    I'm sorry you have to be here. Please read my "about me" page. you will see my mom's journey. She also had a recurrance on the opposite side couple months past the original treatment. She is still here and cancer free, it will be 4 years on 3/1/16. It seems like it was yesterday.

    there is a possibility that the cancer cells were already there during your original treatment and they are just showing up now. Get them removed. You will  be fine, this is still curable.

    Positive thoughts for you!

  • swopoe
    swopoe Member Posts: 492
    #3
    I am sorry. My husband had

    I am sorry. My husband had right lateral tongue cancer, no nodes involved. But, he had radiation to both sides of the neck along with chemo to be safe. I am sorry you now have issues on the opposite side. But you will beat this beast. Have the surgery and then hit it as hard as you can with chemo and rads so you don't have to go through this again. Sending you good wishes!

  • MrsBD
    MrsBD Member Posts: 617 Member
    #4
    Both sides

    Josh, you've been riding such a roller coaster. The cancer had probably spread but was too small to be noticed when you had your first round. That really stinks! I had BOT with one node on each side, but thankfully it was all discovered at the same time. Treatment was radiation and Erbitux, but no surgery. It's sixteen months later and I'm doing great. You caught this early, so you have every reason to be optimistic. Check in whenever you need advice or just to vent!

  • wmc
    wmc Member Posts: 1,804
    #5
    Welcome to the H&N Group

    Welcome Josh to the group, but sorry you need to be here. You have been through a lot already with it showing up again. We have many here with BOT and have done very well in beating it. It is a very bumpy road to go down wita all the H&N cancers. Have it being T1; N1; M0 is really good, even tho because of it going to a lymph gland bumps it to a stage 3. 

    Mine was SCC in the suoraglottic and I have servier COPD and the tumor was 3cm x 2.5 cmx 2.5cm, and pushing on my vocal coards. I was only given the choice of surgery if, they removed my larynx. I would not survive the 8 hour surgery with my lungs. So that is what I did and they did a neck dissection 2-5 on both sides as a precaution. When I was going to surgery it was stage 4 and T4; N1; M0; [T=tumor; N= lymph nodes; M= metastasized, meaning going to other parts of the body] When I came out of surgery it was reduced to stage 3 as lymph nodes were clear, T3; N0; M0; and I went right to my rome and never had to be in ICU which is very common. They took 48 nodes on the left and 38 on the right side as well as my larynx. So I was cut from ear to ear. I will never get the feeling back on the left but got it all back on the right side. Makes it interesting to shave an soon as I cross the center line I cant feel the razor, plus the hole in my neck to breath through. You have a trach which will be removed. Mine is called a stoma and they separated my airway from my throat. So nose became just somethings to hold my glasses.

    Don't know if you had yours done local ot went to a major hospital, like a teaching one that do hundreds of these every year. Once you recover from the neck dissection and you get the feeling back and the chemo and radiation, if needed. You will see the light at the end of the tunnel, is when this should all be done and you should be fine.

    Will add you to my list and keep you in my thoughts and prayers.

    Bill

  • lifeisDHA
    lifeisDHA Member Posts: 64
    #6
    Sorry that you have reccurence.

    I read couple of stories here with similar situation and good outcome after treatments. Go to a larger cancer center if you can.  My boyfirend also had neck lymph nodes reccurence and had neck dissection 5 months ago.  His recent PET/ct scan was good.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    I was thinking in the same

    lines as Joanna....that the cancer cells were already there during all the treatments you received on the other side, and just started growing now....They may very well decide to give you chemo as well as radiate the opposite side this time around. 

    p

  • Barbaraek
    Barbaraek Member Posts: 626
    #8
    Josh

    Hindsight is always 20/20...I think those mean old cancer cells were probably lurking there on the right side and not picked up the first time through. Thankfully it sounds like you have a plan to get them out and gone for good this time. Glad to know that what is on the tongue is scar tissue. You know the drill, you have the courage, and you have all our support here...good luck with part two...

    Barbara

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