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Scared of Treatment for Oral Cancer

 

Dear Eva,
I am a dental hygienist and I have just been diagnosed with squamous cell carcinoma in my right tonsil. I’m finding it all very frightening. I’m 46, but up until this I felt 28, fit and healthy. Or so I thought! I’m scared about the treatment.
Jennifer

Jennifer,
There is a high probability that the squamous cell carcinoma is HPV+. Has your tissue been tested yet?  The most recent studies show that the HPV associated oropharyngeal cancers have a higher cure and survival rate. How did you find me? By any chance did you see my music video about oral cancer? I’m trying every avenue to raise awareness about the disease.

Dear Eva,
Thanks for responding so quickly. They are testing the tissue biopsy for HPV, and the specialist said they feel that 100% it has presented as such.  I just want it resolved quickly. My biggest immediate problem is the anxiety this is causing me. I’m also concerned about how to have the correct mindset I need to beat this!! I heard about you from a friend of mine that is also a dental hygienist here in Toronto. She heard you speak live at a conference last year, and told me I should make contact.
BTW, Awesome video!!!
Jennifer

Jennifer,
Radiation is like the worst sore throat you ever had, but it is a blip in the picture of your whole life. You have more strength than you know!

Dear Eva,
I’m full on expecting the sore throat, and I think I can deal with that. My huge concern is the chemotherapy! I’m very afraid of chemo, and the risks involved with it. I had a CT scan with a contrast dye today, and I will find out the precise stage of my cancer on Monday. Then it will be determined whether or not I am a surgical candidate. I would much prefer surgery, and radiation if it’s an option.

Jennifer, that’s what I had, surgery and radiation only. 15 years ago when I was treated, there was no research proving chemo made a big difference. But, mine was in a different location, lateral tongue. Every cancer is different.

Dear Eva,
It’s so crazy!! I eat healthy, haven’t smoked for 18 years, I take great vitamins and exercise regularly! None of the doctors who examined me thought this could possibly be cancer because my medical history is so boring, and I have no predisposing health risks. I thought the healthy lifestyle I chose was supposed to prevent this sort of thing. Shocking that I actually control nothing.

Jennifer, Did you see this page on OCF website? http://www.oralcancerfoundation.org/hpv/hpv-oral-cancer-facts.html. What were your symptoms? Sore throat? Hoarseness? As a hygienist, did you know the signs?
How did you finally get diagnosed…through your dentist referral? Sorry for all the questions. Send me a pic of yourself so I can picture who I’m conversing with 🙂

Dear Eva,
My only symptom was an asymptomatic lump on the right side of my neck below my jaw. Once in a while it would feel like I had a popcorn hull stuck at the back of my throat, on the right side. I had no pain. I discovered the lump the first week in September, and actively pursued a proper diagnosis with several specialists, all the while being told that it didn’t look, or feel like anything cancerous. JenniferCI finally got diagnosed via a tissue biopsy in December. If I had not been persistent with these doctors, I would still be just waiting for surgery in the late spring!
Thanks for sending this information along!!
I’ve already forwarded it to several colleagues. If I can help even one person to avoid this path, either by education in advance, or by early detection, then I will be overjoyed!

Jennifer,
You may find hope in watching my survival story taped professionally at a conference for Radiation Technologists. It’s a FREE download.

Hi Eva!
I watched the video of your experience, and I’m so happy that I did! You are very brave, and very strong…it gave me hope. I saw a second radiation oncologist yesterday, at a different hospital here in Toronto, and got a 2nd opinion. Turns out that I’m a candidate for robotic laser surgery that is going to be performed by a brilliant young ENT here. This young surgeon completed his advanced training in NYC, and they both met with me yesterday to review my scan and all of my options. The did not speak down to me or act superior because of their brilliance. Rather, they made it clear that I have options, and may be able to avoid chemo with a surgery/radiation approach, and quite possibly have the same future prognosis. They presented me with all the information I feel I need, and they did it with the attitude of us being a team in this. Because of my healthcare background, this attitude is important to me, and I now feel much more relaxed about treatment. I am currently just waiting to hear when my surgeries will be scheduled, and hopefully they will be able to do both the pharyngectomy and the neck dissection in one operation!! The robot is very busy, and there is only one here!!

I want to thank you for sharing your story Eva! I think you are so courageous, and inspiring to listen to. When I come out at the other end of this, I plan to share my experience in at least the dental community. I’ve had to really be an advocate for myself in order to get this diagnosis. I’ve been chasing it since the first weekend in September, and although it was tough to hear it, I’m so glad it’s been diagnosed!! I will be strongly encouraging others to listen to their gut instincts, and hopefully get an earlier diagnosis than I did. Thankfully, even though I have two lymph nodes involved and am classified stage IV, the type of head/neck cancer I have has the highest cure rate and best prognosis.

I will spend every day focusing on my blessings, and praying for a complete recovery!!

Thank you again,
Jennifer

Jennifer, you are a testament to the value of getting a second opinion. I hope everyone who reads this understands the importance of taking the time to find the treatment that fits a person and their lifestyle best and that they should feel like a participant in all healthcare decisions. Thank you for sharing your story. I join all of the readers in wishing you the best possible outcome. For me, from surgery to recovery was under 6 months, just a blip of time when you look at my life. When you are feeling low, don’t hesitate to contact me to raise your spirit. I will be in touch with you during your treatment. If you feel up to it, I’d love to hear back but no pressure.

Sending you love, courage and strength,
Eva

Comments 21

  1. What a very inspiring story! You make a very good point about not blaming anyone or pointing fingers. I think it should be required reading for anyone going through this. Love you for all you do Eva. Keep fighting the good fight.

  2. Thanks to you both for sharing your stories, strength and inspiration. CDHA is proud to have helped make this important connection through our recent conference. It is only through education and increased awareness for early detection and oral cancer screenings that we can limit the impact of this disease. Best to you both.

    Angie D’Aoust
    Director of Marketing and Communications
    Canadian Dental Hygienists Association (CDHA)

  3. Wishing you strength through your treatment Jennifer. I can only imagine how frightening this has been for you and having Eva as a support will help keep you strong as you go through this.

  4. Dear Jennifer

    I wish you very well on this journey. If you are strong by Oct 18 I would be thrilled to invite you to Ottawa. We will be hosting Eva for our society. I would be thrilled for you two to meet and continue your advocacy on Oral cancer. Ida Ryan

  5. Eva and Jennifer….What a beautiful dialogue between the two of you! My best friend’s son David, age 42, a very healthy young man was diagnosed with stage 4 cancer of the tonsil 5.5 years ago. He has been cancer free even though he was advanced and undiagnosed for months, perhaps more than a year….David is doing well today. He had surgery and radiation. I will pray for you to have a positive outlook as that creates a positive outcome. Modern medicine creates miracles. You have many friends and supporters in your corner….Eva is such a beautiful role model for so many…I am honored to call her my friend. Linda Miles

  6. Dear Jennifer – You are in my prayers and I am sending healing energy your way. Eva was such a treasure to my brother when he was going through treatment for oral cancer. She is truly a gem. Linda Miles and I founded Oral Cancer Cause (OCC) to raise awareness about the importance of early detection and treatment for oral cancer. Your story is such an important one, and I thank you for sharing it. – Robin Morrison

  7. Dear Jennifer,
    My name is Dr.Madlena Kantscheff. I worked as a dentist 25 years, 20 of them at my own dental practice in Germany. I am also 16 years uterine cancer survivor. I would love to support you with anything you may need. I have a wonderful friend who is a gifted Chinese medical doctor and has helped countless cancer patients from all over the world. Feel free to contact me: kantscheff@gmail.com. Cancer my dear friend, is a wake up call for all of us…always, even when we live a healthy life. Have you looked at your emotional state? Did you take appropriate care of the needs of your soul? Now is the time to do it if you have not done so. Looking forward to hear from you soon.
    God’s blessings for you!
    Madlena

  8. Hi everyone! I just want to extend my heartfelt gratitude for your prayers, and words of encouragement! It is comments from friends, like those you’ve left, that help give me the courage to do everything I need to do. I am so richly blessed with love, and support! For all of it I am exceedingly grateful!
    In approximately 36 hours, all of this yucky cancer will almost certainly have been removed from my throat, and neck. I will be back here to comment as I recover over the next few weeks. Thank you all for sharing with me, and a special thanks to Eva for making this support network possible!

    With love and hope,
    Jennifer

  9. This month will be 10 years since my husband found a lump on his neck. SCC on base of tongue. With exception of a scar, today you would have no idea what he had. As with other cancers, treatment is a long road. Please keep everyone posted. Those of us who read here will be thinking of you. The size of your village just grew, we care. Stay strong, and when you feel weak, rely on others to support you. Contact me anytime

  10. Hi Jennifer! What a great story,it’s wonderful to be a part of this network of amazing women! So happy to hear you are an advocate for your own health!
    It was my mothers own oral cancer which inspired me to enter this profession. Times have changed a lot since then, as I was only 16 when she had her sugery, but it definitely shaped my career! I hope you take the time you need to recover physically, and allow the extra indulgence of your emotional and spiritual health! Soon the Robins will be back, Spring and flowers and a new beginning! I know it is all hard to imagine…we are all cheering for you on your path! Dental Hygienists- don’t forget to care for the caregivers! Be kind to your Self!

  11. Post
    Author

    I just heard from Jennifer everyone!

    Hi Eva and all her blog readers about me,
    Surgery went well last Thursday! The pharyngectomy was performed with clear margins, and now just awaiting the results from pathology on the lymph nodes. Took a little bit to get pain meds straightened, as I’m a bit sensitive…to almost everything! Up walking dutifully every day now, and trying to re-learn swallowing. It’s been a fair-sized bump in my life path, but I find reasons for belly laughs every day. I am surrounded by brilliant Drs, and the most wonderful, caring nurses. I’m so deeply grateful for all the brains and compassion to whom God has handed me to entrust in their hands my care.

    Thank you for the care and kind uplifting words from the readers! You all mean so much to me.
    Jennifer

  12. Hi Jennifer! I am a big believer in doing your own homework when it comes to any kind of healthcare. It seems you made some great choices! May God continue to bless you with love and support as well.

  13. Hi everybody!
    Wanted to touch base now that I’m feeling stronger.
    Feel so wonderful to be able to eat solids again….I was so hungry after losing so much weight from surgery, and recovery. It is now 5 weeks since surgery, and my throat is relining beautifully!! I saw my Radiation Oncologist today, and we will be forging ahead with Tx in 2-3 weeks. I’m sure it will be challenging, but I know I’ll get through it, as so many before me have!
    During my post-surgical recovery, I won’t lie. I definitely had a few down moments….I think I’m still somewhat in disbelief that this has happened to healthy me!! I finally had a pep talk with myself in the mirror last week, and that’s when my real recovery began. I decided that I could no longer indulge in living as though I’m sick, or feeble, but instead I needed to start to eat real food, and move my body….and to live my life!! I woke up the next day with a new determination, and haven’t looked back!

    Thanks again for all your support Eva, and readers!
    And to Nancy Johnston, thank you for your reminder to take care of ourselves….you are so right! This trial has taught me to be much kinder, and gentler to myself…and to treat myself the way I would treat another!

  14. For readers who missed parts of Jennifer’s story, they are all linked to this 4th installation about her story: http://www.sixstepscreening.org/jennifer-chapter-iv-discharged/

    Jennifer, you have provided inspiration to so many. Everyone who knows you will learn from you how to focus on what you do have, and not what you’ve lost….it’s a skill and doesn’t come easily. You have been given an opportunity to leave a legacy, and you are doing it well. Thank you for sharing.

    If you have any questions for Jennifer, feel free to ask.

  15. Jennifer, so glad to hear you are doing well, both physically and emotionally. It sounds as though you found the best medical team to care for you. Stay positive through the healing process and surround yourself with peace and love – it really does make a difference. I look forward to hearing your updates.

  16. Jennifer & Eva,
    It is because of your personal stories and struggles that I as a dental hygienist in Pennsylvania do six-step screening on each and everyone of my patients.I applaud both of you for your openness and strength to spread the word about what you and now Jen, went through.
    I saw Eva at a local college a few years back telling her story and it empowered me to do better. To spread the word and educate more than I was and all my patients respond so gratefully. My thoughts and prayers are with you Jen through this medical nightmare and journey -God Bless You!

  17. Thank you ladies for sharing your stories. I will keep you in my prayers and your experience has helped me to be vigilant in doing a thorough examination of all of my patients and to continue to educate an motivate them to take care of themselves as well as to share their knowledge with others. May God bless you both and keep you strong as you continue to REALLY LIVE!

  18. Thank you Eva for sharing your story. Your courage and commitment on this journey are inspiring. Oral cancer has touched our family in a very personal way. Your experience and openness in sharing your story will go on to save many lives. In the interim, take care of you. Healing thoughts and prayers are sent your way. I look forward to further updates.

  19. Post
    Author

    Update on Jennifer: “I wasn’t sure I wanted to post this on the blog. I never want anybody to feel discouraged by me. Although the inside of my throat is healing beautifully, my latest scan showed another enlarged lymph node that appears sinister in nature. It is not typically a node that tonsil cancer goes to. My surgeon said that my case is very atypical to begin with. It has been 7 weeks since my first surgery, and I was set to start radiation next week, but my rad/onc is comfortable postponing for a couple of weeks to recover from a neck dissection where they will remove nodes and my submandibular gland. My surgeon is brilliant, and I trust his judgement.

    I will likely start radiation two weeks after surgery. I was dreading radiation, but now I welcome it. Fry up those residual C-cells so nothing more can get me!!! This latest swollen node is very bruised feeling and painful…I will feel much better as soon as it is gone!

    The rest of my recovery has been pretty good. I am eating all solid foods, driving again, and I walk at a quicker pace than most of my healthy friends! I am so blessed and thankful to God!

  20. Post
    Author

    Dear Jennifer,
    Normally it’s the nodes that are NOT tender that are the sinister ones. I’m hoping it to be true in your case: It may looks sinister but it’s just the lymph node doing it’s job. Sounds like your body is telling you that radiation is better to do now so you do get rid of all those baby C cells.

    Selling your house in one day to finally move into the home you built is a sign….a sign of the balance of life. When things are tough, other things ease up to make room for the energy to keep you here! With your permission, I will post your story and my response to all those who are waiting for an update.

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