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New journey
TKL4
1 Posts
Hi all,

I was recently diagnosed with stage 3 oral cancer in September, I’m 25 years old, healthy, no history of smoking, drinking or HPV. I had a hemiglossectomy, free arm flap, skin graph and neck dissection on October 28th, started Radiation December 16th and finished February 1st (30 rounds) on the mouth internally and externally.
I wanted to post and see if anyone my age with no pre existing cases also went through something similar…I feel as if I am the only one especially in Canada at my age. Everyone I’ve spoke with online is in the states and 40 years and up.


thanks!!
4 Replies
Boby1511
1029 Posts

@TKL4

Hi there, welcome.

You do sound rare. I am sorry for the diagnosis.

Perhaps @law1 could share, also with a similar diagnosis.

There is a young peoples support group, thou, I think its all cancer types.

Perhaps @Whitelilies could share as she found the link.

I am in the over 40 with a different cancer type.

I hope you are able to connect with someone, it is nice to be able to have a buddy going thru something similar.

Sending you best wishes.

Whitelilies
2440 Posts

@TKL4 Hello and welcome to our caring community - I am sorry, for your reason to find us here….but glad you have.

Feeling connected and less alone is vital…..

Here is the link: I hope it is helpful for you…..I believe the range is 18-30 yrs of age….all Across Canada for supports……and any/all cancer types….

Reach Out Today to them!

Wishing you only the best!

Warmly,

Whitelilies

law1
731 Posts

A bittersweet welcome to you, @TKL4 . It is very understandable the raw deal you have received from cancer diagnosis…..and treatments…surgery, radiation, and on and on……. I won't even minimize the hideous nature of cancer….the best news is I am 3 years cancer-free after a very tough recovery from 36 rounds of radiation following my basal tongue/ tonsil cancer in Summer, 2018. I declined chemo, and surgery was not an option. You have been through very agonizingly tough times and your mental and physical strength is extraordinary…. at the age of 25? Cancer sucks!!! I refer to it as the ‘Uninvited Guest Who Will NOT Leave’. @Boby1511 knows what she is talking about as she is also a cancer-fighting survivor…..as is @Whitelilies . What a wonderful discovery you have made joining this website of intelligent, supportive folks who have been in the battlefield---some as patients, some as caregivers, some wanting educational outlets….and most are very candid about their positive and negative experiences.

Good for you to have never smoked, nor drank alcohol, nor HPV positive…it does speak to the success of your recovery, believe it or not. My friend was also very healthy, no bad habits, yet developed aggressive lung cancer which killed her within 6 months. Go figure…life is a mysterious journey.

Cancer is very mentally internal as your mind goes through stages which no one else but you experience first hand. Adjusting to the ‘New Normal’ can affect eating, speaking, pain tolerance, emotional depression, fatigue, speech challenges, neck muscle tenderness, spacey memory, love and friends adjustments…etc., etc. And, you have a very good idea to find a peer group for your age range. Other than searching this website, you may want to scour the more specific areas of Publications, Resources, Forums-Types of Cancer-Head and Neck, all of which can direct you to information and hopefully to begin a Group for the age range of 20-somethings with your similar diagnosis. The BEST clearing house for info and in person phone support by trained oncology staff, is the Canadian Cancer Society's Toll-Free Helpline:1-888-939-3333.

Please keep us in your thoughts and continue to post your progress…be it positive or negative or just bleccch! Hang in There!

law1

elle29
1335 Posts

Hi ! @TKL4 🧚🧜‍♀️🧞‍♂️ You are not alone with this but by now been through the toughest part . I supported someone in the UK who had similar or same locations that freaked her out . Until she got a peer support person provided , through the hospital system . Her and I were silly she mentioned similar , online making fun keeping it light . As I am whimsical in my spirit . She felt she had a connection to me . And we connected to a Facebook cancer thread who were immediately giving u their courage and experience . Some sad stories pleas to find a cure of mothers with multiple cancers ! The men who had this too here who shared . It was unbelievable to read such bravery faced with cancer to get past it .
And build up your own courage in all your needed to know to talk intelligently to your specialist and others in the field . Just remember no question is too stupid to ask ! 👍

… Like here can be intense in cancer and agressive to severe treatments with side effects on some and challenging to do . With good doctors that decided to stop discontinue the chemo .

Emotionally draining

To wake up again Day after day to go for radiation , drive and go yourself , not wanting to . A male cancer patient expressed not from here but the states . But you did what was required to and you had to do , eradicate your cancer within .Get that ugly monster out is commonly shared ! Often describing weakness in even going up stairs easily done before cancer & Treatment . Perhaps this may not be your path ? Because each of us are différent reaction in cancer’s schedule and agenda but maybe similar in treatments . Ridiculous like a lab rat ringing a bell at the end of a maze but for some this is grabbing at as a symbol towards life .Some may wear their feelings on their sleeve for all to see or more restrained or familiar or had family , already giving them an air of confidence !
…..I texted my UK friend on her cell phone freely sometimes before or after treatment she ‘d pop up with pic of herself of that day of her silly hair . Or few subjective comments stressed out . Then go back, arriving to a place to sleep she shared . I was not sure if it was hers or temporary accommodation ? By no way or means was this the End of life but the fear always hovers over because there is no cure for advanced / Metetastic cancer .
We talked of music 🎵 she liked and what it was like in England where she lived in Manchester . That had pop concerts pre pandemic there ? And she shared her girlfriends too , she hung out with .Even though there was a difference of age I have 3 daughters making me feel their young spirit , teasing me .

I preferred the short texts of Facebook in conversation . Instead of formal writing and then having to explain justify myself here .

She was also taken to dinner regularly to keep her calories up .

I hope u got someone like that ,or form a group , a true gift and advocate too being single . Of friends who went through Radiation too . Although she my UK friend shared ane often just crashes after Radiation ☢️ Treatment & sleep for a whole day on her own .That some said here so needed fatigued & depleted but felt a lot better doing that ! As a single I bought or made certain foods for those times I knew I might be tired or weak or not hungry . I found I could eat only some foods my appetite and taste changed with the treatment or loosing , muscle , with some vegan meals being lighter , my daughters shared we enjoyed .

That person would also take her to eat out ! Which is needed on Radiation Treatment for the neck and thyroid she had and to try tastebuds that went flat but keep calories . More want u liked to eat but in nourishment for strength . The hospital - Even gave, my UK friend a special Protein smoothly drink , just for cancer patients .
The most important thing is never to be àlone : accept when offered , provided comforts of a peer friend., or home nurse or PSW to call or check in ! Encouragement is always free . From after care from treatment being tired to drive , cook or eat . And losing weight already slender . Or staying nearby to the hospital without your family not allowed bc of COVID spread .
They even got her a new housecoat / bathrobe with her medical team name on it that unified them together ! In her best interests !
There is hope , and action with compassion , neither can survive alone . I am sorry for what brought u here but u will find this connection to other women or men is invaluable . ..The first step is the hardest I found that difficult in the response I received with obstructions to access from the beginning wondering if it was deliberate to make me angry to persevere .
I am now NED no evidence of disease of cancer of the lungs or breast after a year of different treatment on the consult advice from my Primary Onco .Yes I do know of reoccurence reading it can be any where from as early as 6 months to 3 years . And having had cancer before it took decades being unclear an upsetting time for me .

All the best supports bc many of us had to do it all ourselves ! Not sure why , perhaps a result of the pandemic , horrors and crisis's, closures and lockdowns ! So glad u have the connection here .There are wonderful supports here on CC , who know and understand more to connect with .And also other sources for a bigger picture or access to information with active chat lines to research on or look yourself that is current . You also can go to any library online in any known cancer hospital to read their books . I found out . Our province has a a Cancer Web page .
I use various resources but always come back to this site being reliable worthy contacts in , confidentiality and being a night owl . You choose your path , make decisions , commitments with your physician and be empowered by it . £lle29

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