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Diagnosed with oral cancer
Benni
11 Posts

Just found out I have oral cancer a few days ago, I've suspected it for quite some time.

First symptoms started a little over a year ago. I, now, have pain in my tongue, bottom lip, and I have what they called tongue-tied. My tongue is stuck to the floor of my mouth, making it difficult (and painful) to eat, talk, and swallow.

I've lost weight after months of eating very little.

I'm not opting for chemo/radiation. I will have a pain management team whenever they contact me.

So, I need support and understanding while going through this.

Thank you for letting me join.

14 Replies
Brighty
8197 Posts

@Benni welcome. I'm so sorry for your diagnosis. I'd like you to meet @law1 . She can talk about her experience and recovery with you. @Benni

Brighty
8197 Posts

@Benni hi….its a very personal decision to not opt for treatment….are you comfortable sharing with us why you chose no treatment? If not thst ok. Treatments now a days are not as bad as they were in the old days. But like I said, its your body and your decision. We have some discussions on the site under ‘forums’and ‘cancer types ’..then click on your cancer type. You may also want to talk with the cancer info line at 1888 939 3333 . Do you have support?tbe social worker at the cancer center can help you as well if you need anything. We are here too. Feel free to lean on us.

Benni
11 Posts

Working in an Assisted Living facility, I saw so many go through chemo, etc. and it was a horrible life experience for them, then only living for a few months longer.

I'm 72 years old, suffered from a stroke almost 6 years ago leaving me paralyzed on the right side of my body. So, no – I'm not wanting to go through any of the treatments. Doc will have a pain management team contact me soon. I'm fine with that.

I have a lot of support from family/friends. But I wanted support from people who knew what I was going through.

Brighty
8197 Posts

@Benni thank you for sharing that with us. Id also like you to meet @r042wal and @dayone who have experience with oral cancer .

law1
645 Posts

Hi, @Benni, and with mixed feelings I welcome you to this amazing website full of supportive people. As a 3-yrs. survivor of basal tongue cancer, I can tell you it was a miserable time in my life. Painful sore throat for over a year until I finally received a diagnosis from an ENT doc following months of waiting to see him. Then my mouth opened only 1 cm wide so i felt like a mailbox slot which could only accommodate a slice of pizza….I hated to yawn as it was excruciating and I, too, stopped chewing, drinking, swallowing, brushing my teeth…..too painful ….I declined chemo, but accepted 36 rounds of radiation which killed the cancer, but the recovery will continue for my lifetime. It took 9 months for the tongue blisters to heal, and I am having 2 molars extracted because the decay from no salivary glands has begun. Also, I lost my senses of smell and taste. i eat a variety of soft foods, and some foods with texture…just to make food more interesting since I cannot taste it. @Brighty tagged me and I am rooting for you to improve the tongue situation and its sticky-ness with the floor of your mouth….Please post your progress and/ or regress. Hang on!!

law1

r042wal
5 Posts

Hi @Benni and welcome to the group. Sorry to hear about your diagnosis. It's not a pleasant experience no matter which way you attack it. I had surgery in April where they removed the front of my tongue and grafted in muscle from my forearm. Two lymph nodes in my neck were positive so I went for chemo and radiation in June and part of July. My recovery has been long and slow but I'm better today than I was yesterday. Tomorrow, I will be better than I am today. I also have the support of an amazing wife. She found this site and passed it on to me.

There's a fellow in Edmonton in 2015 that had tongue cancer at the back of his tongue inside the throat. He went through chemo and radiation and wrote a book about the experience called “No Quit In Me”. I wish I had read that prior to my surgery just so I would have an idea what to expect. I find the doctors are very vague and I can see good reason for that in hindsight.

Feel free to reach out to me anytime you want. This site is an amazing forum of caring individuals who have all gone through similar experiences.

Rob

dayone
13 Posts

@Benni Welcome to the group here. I am sorry to hear of your diagnosis.

I applaud your ability to articulate your wishes around your care. I was diagnosed with cancer to the back of tongue with tonsils involvement and a tumour on the side of my neck in early February . I opted for radiation/chemo and then required surgery to hopefully get the last of the cancer left in my neck. Truthfully I don't know if I will take further treatment if the surgery hasn't removed the remaining cancer. I do know at this point I do not want CPR or to intubated.

I am not sure what province you are in but in BC I know that we have excellent resources in Hospice and I have found them to be totally supportive in the choices that you make. The hospice teams are well versed in pain management and take a very pro active approach with pain management and support during this difficult time. (this is from work experience) And they also help to support your family as you go through this journey. One of the things that I am using for pain management right now is CBD salve and I am using it on my face and neck and I am finding that this is helping a lot, and it does help with sleep.

Again I only know of resources in BC but we have advanced planning and I was given this information early on in my diagnosis period. With advanced planning you have the ability to discuss your plans for care with your doctor and your family and have your wishes regarding advanced care recorded and filed with the hospitals so if you are admitted for some reason your wishes will be followed. I have had those discussions with my family and it is a hard discussion as one daughter wants everything possible done and the other is understanding that I do not want to live in a state of disability.

I think that is all on the depressing thoughts right now. Now for the better thoughts, do you have any big plans or projects that you are going to do. What are the things that you have wanted to do but have put them off. Do you have exciting plans for Christmas? I really hope that you are able to get out and enjoy the Christmas lights where ever you are. Say the hell to COVID (but still with some precautions) and go see all your friends and enjoy the season. When you need to vent and rage feel free to message me. We will be here to support you with all your choices that you make as there is no wrong decision.

Benni
11 Posts

Wow! Thank you all for such a warm welcome!!

I'm confident that I can come here with any questions I have, and get the comfort and assurance I need to get through this.

I will post separately for any questions I have. It might be later on as I wrap my head around all this.

Thank you for being here!

Hi there @Benni …. A welcome to this group its amazing!!!!! I was diagnosed with oral mouth cancer in September of this year surgery on Oct 27th where they took out half my tongue… reconstructed it with a piece of my skin and muscle from my wrist …. Removed all lymph nodes from both sides of neck two of which on the left side .. same side of the tongue reconstruction.. had cancer but they got those in time ….so now I am home… feel awesome eating is a chore but I am now able to chew food and swallow…. Speaking is not too bad…. But I’m sure that will improve….My tongue is still pretty swollen…. But they say that will go down… if not they will fix it with day surgery in March or April of next year…… my surgeon is very very confident that they have gotten all the cancer so I am going to not do 30 treatments of radiation…. As there is nothing there to radiate……. Again welcome to the group

a3a
95 Posts

thinking of you Benni, and sending a big hug from Vancouver Island.

Benni
11 Posts

Thank you both for the welcome!

josk
22 Posts

@Benni

Hi Benni .. glad you found this forum and the group of wonderful people here (I am not one of the active ones but do find this group … amazing and most supportive). I had nasopharyngeal cancer (cancer of the back of the nose) more than 15 yrs ago - and lately have acquired ‘speech issues and/or articulation’ and am learning and going through all the various steps/means to handle! Stay strong and wish you the best in whatever you opt to go for! Sounds like you are one strong woman!

Benni
11 Posts

Thank you!

MaryAnne
6 Posts

Hi Benni

I was diagnosed with oral cancer in August. It was late stage so I chose all treatment options. ⅔ of my tongue was removed as well as over 30 lymph nodes. I'm now left with a permanent speech impediment as well as a 6 inch scar across my throat, making me look like an attempted murder victim. (My son says I should get a zipper tattoo).

I've just finished 30 rounds of radiation and 6 chemo infusions.

I know you have chosen no treatment. And thats your choice. As one who did I will tell you at this point my feelings are that other than the fact I'm still alive there are many times in a day when I question if it was worth it. I am in as much pain now if not more, than I was pre-diagnosis. I have also, since, developed a blood clot in my leg. Another side effect to cancer they don't tell you about.

I once told someone that taking treatment or not had to be their choice. Everyone else's opinion, tho it may come from love, is solely to meet their own need to keep you with them. Only you know whats best for you.

I chose treatment because I have grandchildren I want to be around for a little while longer yet.

I hope you have a good support group to walk with you on this journey and please consider us a part of that support

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