How long have you survived

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  • Dr_ROZ
    Dr_ROZ Member Posts: 5 Member
    #322

    47 years since total parotidectomy due to a Mucoepidermoid Carcinoma in the left Parotid Gland followed up with External Beam Radiation Therapy 7,000 RAD max [70 Gray] three times a week for 6 weeks. The concern of osteoradionecrosis has been present the whole time, but so far has not been an issue. My story is not over as a recent MRI for another reason identified a mass on my right parotid. A fine needle biopsy classified as a Benign Pleomorphic Adenoma.  Surgery is scheduled with the hope it the pathology remains classified as a non-cancerous tumor. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #323

    Hello Dr. Roz, and welcome to the CSN H&N discussion forum.

    I would recommend you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.


    I believe you are the only person on here and probably almost any forum that would go back that far, 47 years ago for cancer treatment. You had the hardcore radiation in those days. I am sorry all these years you have been cancer-free and now some kind of growth has shown up. Hopefully, it is as they say it is benign and can be easily excised. Praying for a smooth operation with no complications. And you mentioned osteoradionecrosis, I believe that is all head and neck patients' worst fear. Dr. Roz are you a doctor? If so what kind of doctor are you? Just wondering and good to have you on the forum.

    Our Motto On Here is NEGU (Never Ever Give Up)

    Take Care, God Bless

    Russ

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  • Dr_ROZ
    Dr_ROZ Member Posts: 5 Member
    #324

    My doctoral degree is in education, so I help the mind not the body.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #325

    Very good Roz, with all the stress and emotions involved in these cancer situations we can always use a little mind help.

    Take care, God Bless

    Russ

  • Dr_ROZ
    Dr_ROZ Member Posts: 5 Member
    #326

    Good news - My surgery was last week and the lab analysis confirms the mass in my right parotid was a Benign Pleomorphic Adenoma. I am happy it is out of my body so it does not grow any bigger (Graded as a "T2 hyperintense mass"), or turn malignant at a later date. The Surgeon was great and I have very little nerve function loss at the one-week mark. Much better than the one done 48 years ago this month on the parotid on the left side which was bigger and malignant.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #327

    Well, Dr_ROZ, this is good news. It is nice to have good news here on the forum. Not only was your tumor benign but was removed by surgery successfully with very little nerve function loss. You must have had a very good surgeon. Hopefully, this is the last time you have to go through any tumors or surgery, who needs it anyway. I am so glad that this turned out so well for you.

    I celebrate with you.....

    Wishing You The Best

    Take Care, God Bless

    Russ

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  • Mavish
    Mavish Member Posts: 93 Member
    #328

    I am happy for you. Thank you for sharing good news. God bless

  • BryanB
    BryanB Member Posts: 2 Member
    #329

    4 years as of last week. HPV+SCC base of tongue and very large tumor in right neck. 35 rads, 3 large cesplatin doses followed by radical neck dissection. I appreciate life more every day 😁.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #330

    BryanB, welcome, and so glad you hit the 4-year mark, that is surely a good feeling the farther you get away from treatment. You will soon be at the 5-year mark which is supposed to be a good thing because I think they feel the odds are pretty slim for a recurrence if you make it that far.

    Wishing You The Best

    Take Care, God Bless

    Wishing You The Best celebrate with you

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    Russ

  • rush1958
    rush1958 Member Posts: 223 Member
    #331

    SCC base of tongue January 12, 2010. Stage III. I'm more than 14 years out and still NED. After 47 lymph nodes removed, 35 radiation sessions, 3 rounds cisplatin - I'm still just onery as ever.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #332

    Congratulations Rush, so very glad you are doing so well.

    The fact that you have accrued 14 years free of cancer is quite a feat and instills great hope for the rest of us.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • MrsBD
    MrsBD Member Posts: 617 Member
    #333
    https://csn.cancer.org/discussion/200835/how-long-have-you-survived

  • MrsBD
    MrsBD Member Posts: 617 Member
    #334

    Ten Years

    Post SCC Base of Tongue with Neck Lymph Nodes Involved

    33 rounds of radiation and 8 weeks of Cetuximab. It took several years and therapy for my swallowing function to return to almost normal, but it's good now. My advice is to stay hydrated. It will help you feel better now and protect your kidneys for the future.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #335

    6 years post tx.

    BOT SCC HPV+. Tx was 3 rounds of cisplatin and 35 radiation treatments.

    So far the only lasting side effects are a little bit of neuropathy in the hands and feet, and a little dry mouth. The skin on the right side of my neck, where most of the radiation was concentrated, is a little more weathered looking. But so far only noticeable if you're looking for it. Teeth are in great shape, kidneys are functioning well. At my last follow-up the NP upped my levothyroxin dosage from 75 to 88 mg. Also just had a CT Scan (first one since one year out, maybe 🤷‍♂️), and all is good there, too.

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #336

    I had base of tongue Mucoepidermoid Carcinoma back in 2011. Surgery removed the tumor and had rads with a right neck dissection, as it had spread to my lymph nodes. My doctor wanted to see me for 15 years, not 5, like HPV. After 8 years of checkups, he finally told me that if it hasn't come back in the first 4 years, it won't. So all I do now is get a chest x-ray yearly because he said it sometimes goes to the lungs.

    So far, I've been free of cancer since then. Good to see someone else here with this rare cancer. I was very fortunate that it had clear margins.

    Tom

  • ERomanO
    ERomanO Member Posts: 323 Member
    #337

    Good for you, Tom! Glad you're doing well. Keep it going!

    My oncology docs want to see me for 10 years, so I have 4 more to go. Maybe they will continue asking me to get a periodic chest x-ray. Maybe not. We'll see.

  • kinji
    kinji Member Posts: 11 Member
    #338

    2 1/2 years NED stage 4a Oropharyngeal cancer.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #339

    Congrats, kinji you can't have much better news than NED as a H&N cancer patient, for that matter as any type cancer patient.

    I celebrate with you…

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    God has been good to you…

    Take Care, God Bless,

    Russ

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