Oral Cancer

What is recovery like after tongue cancer surgery and treatment?

Hi everyone. I am a 4x cancer survivor: Hodgkin’s Lymphoma (radiation, chin to pelvis at age 22); Acute Myelogenous Leukemia (two rounds of chemo at age 33); Breast Cancer (bilateral mastectomy & 5 years Tamoxifen at age 40); avoided Thyroid cancer by pre-emptively removing it when a nodule was growing at age of 44); Plus, 2 extensive DVTs and surgeries in the last two years. And now Tongue cancer at age 58! While waiting to see the ENT, and now waiting for surgery, the lesion on the underside of my tongue has grown and is encroaching the top of my tongue. I have asked for an urgent referral to UTSW for my surgery and treatment. I’m in waiting limbo and it’s driving me crazy. The growth in 8 days was significant and it scared me. Anyone want to explain recovery after tongue surgery? If reconstruction is needed, is it standard to take skin from the forearm? Can they take it from somewhere else so it’s not so obvious? I’ve read some people have to have a feeding tube—what is that like? How soon does radiation and/or chemo start? How soon did you return to work, or were you unable to work? I’m struggling because I need to process what is about to happen. I just came out of a 2 1/2 to 3 year ordeal of treatment resistant depression. And BAM! Let’s add to the misery! I’m a Christian and have leaned on my faith to get me through. I know God has a reason for everything, but I just don’t understand cancer happening again! Anyway, I’d appreciate any insights thst might help me get through this! Thanks!

How do I stay positive when cancer survival statistics seem scary?

I’m just going to say this! I’ve read about everything you can read about cancer and have figured out everyone’s is different! My wife’s sister had liver removed/ replaced they told her 7 years tops to live! She died 19 years later! Don’t always believe the estimates they are just basic! When I read with my diagnoses that 5 years 62to 65 percent were still alive I thought about that? Shit that’s better odds than a coin flip! I’ll take it! Wake up everyday thank god for the privilege of being alive and do your best! I’m 63 and surprisingly am still alive ! I am planing for 85! Be happy treat your family well!

Why don't cancer doctors tell you all the side effects before chemo starts?

My rant / Bitching for this month. Back on chemotherapy and feeling like crap not from the cancer but the treatment. My gripe with oncology is every day is like a jack in the box, you don’t know what is jumping out at you until it does and nothing close to being fun. So the first time I had chemotherapy I also was being microwaved radiation never told me all the crap I could expect until I was done by then I had already been kicked in the jewels by everything that was a possible side effect and never told about all the crap was or could be coming for a year and it was almost 2 years of changes but not told until it was happening. Oncology is the same I asked what to expect and was told I may loose hair, feel weak, have nausea, first run of chemo felt like shit and at the same time was so out of it. I had no idea where I was who I was I’d couldn’t give a crap. If not for my wife I would be dead as I was ready to drive 3 hrs a day to get treatment and there was no way I should be driving at all. Now the new round of chemo all kinds of stuff and if I question what I should do I’m told probability is caused by chemo. So my question is if they know all this stuff why is it not just printed in a big ass book titled CANCER why it sucks and what to expect. It’s not like I / we didn’t ask what to expect. Any patient should be told before it starts.

What are the long-term effects after surviving chemo complications?

In July of 2023, a biopsy of a swelling in my neck revealed that I had cancer. After returning home from a vacation that couldn’t be canceled I started chemo in mid-October 2023 and my first session went well - no bad reactions from the drugs. However, on 27 October 23, and as I got ready for bed, I coughed - and a huge glob of blood landed on the bed. From there, things were hazy for me and I have few memories past hearing an EMT talking to me and, later, someone asking about my blood type. I lost three weeks of my life; I learned that I had died twice, once from near-total blood loss and then because of hypoxia and only blood and a tracheostomy saved me from a permanent death. I still think the chemo made the tumor disintegrate. I learned that I had an HPV-related cancer. I am into my third year of post-cancer checkups and I remain cancer free but with lingering effects from both chemo and radiation.

How long does nerve pain last after tongue cancer surgery and radiation?

I had 1/3 of my tongue removed,lymph nodes on right side of neck, and cancer removed from under my tongue (stage 4b tongue cancer) in September. I completed radiation and chemo (done at the same time) in December. Recovery from radiation has been difficult and I still struggle daily. The operative side of my tongue has healed. I don't have any mouth sores, but my tongue is very painful. Just talking hurts. Water or anything in my mouth makes my tongue hurt. I rate the pain 6 out of 10. I'm wondering about nerve damage causing the pain. Has anybody experienced this? Doctors don't have any answers. I live with a feeding tube and would like to eat normally so the tube can be taken out.

Has anyone been through chemo and radiation for tongue cancer?

Hi, I recently was diagnosed with tongue cancer I'm getting ready to start chemo and radiation. It's at the base of tongue had anyone been through this

What happens if you choose not to treat oral cancer?

I am new here and in the early stages of possibly having oral cancer on the roof (upper palette) of my mouth. From reading many of the posts & comments, this does not sound good at all. Especially if there is only a 5-year life expectancy of 5 years, if caught early! Also, what is the life expectancy after you have all of this treatment (surgery, radiation & chemo)? My question is, what if you choose not to have treatment? Like no surgeries, removing parts of your mouth, pulling teeth, not being able to speak or eat, etc, and having a feeding tube. What does it look like & how painful is it to just let it run its course? I don't mean to sound morbid, but I am very interested in quality of life. Please respond if you have any info or advice. Thank you!

Has anyone had mouth cancer surgery and used a palatal prosthetic?

Has anyone here had a cancerous lesion/white spot on the roof of their mouth? From what I've read, they will often do surgery yo remove the layer on the roof of your mouth, and then you have a plastic palette to wear that hooks onto your teeth. Doesn't sound fun to me! I'm wondering if anyone has had experience with this type of cancer & what the complications might be. Thanks!

What should I expect from oral cancer biopsy and potential treatment?

I am new to this group. My dentist noticed that the tissue on the roof of my moth looked abnormal. I can see a white spot in the center top roof of my mouth, about 1/4 - 3/8" in size. I go in for a biopsy in 6 days and will get results in about 1-2 weeks. I've been researching oral cancer & it does not look fun! The prognosis is 5 years if caught early. It looks like treatment is all or a combo of surgery, radiation, & chemo. I am a 6 year survivor of breastfeeding cancer. I had radiation for that. I don't mind radiation as much, but both surgery & chemo really freak me out. I

How long does Keytruda work for tongue cancer before it stops?

Well I’m back to give an update. Latest pet scan is not good but deep down I knew this as my speaking has been getting worse and it’s been well over a year since the radiation has stopped. My ENT Dr has been fantastic through all this but now told me what I have been expecting all along but it is just sooner than I ever expected. I have been on Keytruda now for several months but it seems although the oncologist who must be an optimist she has been wrong thinking it’s working it has not. Tung tumer s are back and now lymph node by my kidney is also lighting up. So they want to move onto Keytruda and 2 chemo drugs to try to extend what time I have left. I did ask about surgery knowing most of the answers but was told it would turn me into a human pezz dispenser removing my tung, voice box, lower jaw and rebuilding it with my leg bone and the lymph node is not operable all this is a hard no . Also on-top of the bad news the Keytruda is attacking my thyroid and it seems the drugs I have for that even tho have been upped 3 times still have not helped making me so weak. So to put this into prospective at the onset I was told this squeamish cell throat cancer is very treatable it turns out not so much.