r/HeadandNeckCancer

My husband and I are caregivers to his brother. He was found to have oral cancer and they removed his entire tongue and some lymph nodes in his neck.

Around six weeks ago he was sitting on the couch, just grunting. We knew something was wrong so I called 911. When they got him to the hospital it was found he was in septic shock and had respiratory failure. He was in the MICU for three weeks. He was barely responsive and totally immobile.

Three weeks later they transferred him to a rehabilitation facility, where they hoped to get some of his physical strength back. This facility wasn’t close but we went every chance we got.

Last week the case manager said he wanted to come home. We resisted at first because we’re not trained medical personnel and he needed a lot more therapy etc. She said oh he’s come a long way. He walks around the unit and can use the restroom by himself. We reluctantly agreed.

My husband picked him up yesterday, and he can’t walk period, period! My husband has to push him to the bathroom, more or less bath him. He does everything for him.

They sent a nurse out today and I asked him why the hospital lied to us. He admitted it was probably an insurance issue where they can only let him stay a certain amount of days. That’s fine, I know that’s how insurance works. But why tell us he’s fine and walking around taking care of himself when that is so not true. I told my husband I wanted to call the case manager Monday morning and go off on her for lying to us so we’d take him back into our home. He says to let it go, that the nurse will be there three times a week. Am I wrong to be upset with the care manager and/or the hospital? Or is the one that I should be mad at the insurance company?

Hi everyone,

I’m 42F, about 3 weeks out from finishing head and neck radiation (parotid gland, which is a bit less invasive RT than the tongue/other areas, but my throat was hit pretty hard with 20GY scatter dose), and I’m trying to make sense of the fatigue I’m dealing with.

During treatment, I actually managed pretty well overall (aside from brain fog, feeling "lazy", and a bit of a sore throat). But now, even though the fog has lifted and I feel mentally “back,” the physical fatigue is hitting me harder than I expected. I can do things like work, walk, or be active, but I seem to crash much more easily and take longer to recover than I did even during treatment.

It almost feels like my body is catching up now that treatment is over, or like the healing phase is more demanding than I anticipated. I’ll have a relatively normal day, and then the next day I feel completely drained.

For specifics, I'm trying to do my usual 60 minutes of cycling, but at a much lesser intensity. And this seems to be messing me up for days after: I end up feeling flu-like and crappy for days.

For those who’ve been through this:

• Did your fatigue peak after treatment rather than during? How long after?
• How long did this phase last for you?
• Did you find pacing yourself made a big difference, or did it just improve with time regardless?

I’m trying to figure out what’s “normal” versus me pushing too hard.

I should add that this is my second primary cancer. I went into radiation therapy without a thyroid gland and rely on Synthroid for hormone replacement. So the usual concern about radiation affecting the thyroid doesn’t apply in my case. If anything, the considerations would be medication absorption or effects on the parathyroid or pituitary glands—not the thyroid itself. At least this is what I understand.

Would really appreciate hearing others’ experiences 🙏 Thank you.

Hello everyone, I am 22F who finished RT 4 days ago, and I am struggling extremely with the side effects. My throat is so sore and my mouth is full of sores. I try to manage it with magic mouthwash and lidocaine, but it’s a lot of effort to swallow anything except ice water. I have been doing the baking soda rinses and I started using Healios right after therapy (probably should have started using it in the beginning but didn’t because of the cost, very stupid).

I can’t talk and I am constantly spitting, with the occasional coughing of mucus. I have medicines to deal with this and possible oral thrush. Regardless, I can’t eat much and I don’t have a feeding tube. Even swallowing the medication is extremely painful.

My main concern is I wanted to attend my college graduation next Saturday, but I planned to fly out 4/29, and I am not sure if this is extremely ambitious. My radiation oncologist is optimistic, but I don’t know if he is overestimating me because I’m young.

I’ve developed extreme depression the last few days and reminiscing about eating proper food. I love spicy and acidic foods and I find myself watching cooking content or going on DoorDash just to vicariously eat.

Is there anyone younger who can give me some hope? Please be honest but I genuinely don’t know how much longer I can do this. I don’t know if I can wait months just to eat something since it’s been since December since I’ve properly eaten without care.

Hi everybody..... I've been reading all the posts on this site which I find to be extremely helpful and encouraging. Thank you all for your insights.

My husband has been diagnosed w SCC HPV+16 via FNB of involved lymph nodes, level 2 and 3 in the Rt side of his neck.

Initial U/S in early Feb said mildly enlarged....repeat U/S mid -March said they had grown to 2.3 cm with loss of hilium and cortal thickening. Biopsy end of March confirmed SCC.

Lack of experienced medical resources here in Las Cruces led us to seek treatment and appointments in Albuquerque, 3 hr drive away at the only NIH Cancer Center in New Mexico.

Laryngoscopy by ENT showed no lesions he could see. We go for PET SCAN in a few days to find a source.

My husband has a lot of pain in his neck, shoulder area....spasm like, grabbing, ice pick, twisting....numbness in the area into top of shoulder and right upper chest.....

comes out of nowhere. When it happens , it is so severe, RX's for gabapentin, Norflex, diclofenac help a bit, but relief is hard to maintain after a few hours. Drinking hot coffee somehow helps ease the spasms for awhile.

Did anyone experience pain in the neck area before treatment started? ( Don't know what treatment yet).....he says the pain is getting worse the past 3 weeks since biopsy. Could it be an ECE breaking open?.... I'm at a loss right now. Pain is much worse since we saw initial appt w ENT 3 wks ago. Neck is swollen but soft....no greater Amt. of swelling that I can see since initial symptoms started....

Any comments and thoughts on your experiences are greatly appreciated.

Had my PET scan on Monday and got the findings yesterday. T2:N1:M0. Still don't have the HPV results back from the biopsy on the 10th.

To get prepared, I've been reading the journey's here and while not looking forward to the effects, understand them and have something to talk to my dr. about (learned what a PEG Tube is, pain management experiences, a ton of other info.) Thank you to everyone who shares.

I am not afraid, nor anxious. I'm taking it all in with an "It is what it is. If thousands can get through it, so can I." attitude.

Shockingly, I did also learn from the PET scan I have atherosclerosis around the heart, and arthritis in my hip (that explains the decades of sciatic nerve pain down that leg - LOL).

Thanks again to everyone here sharing your experience, strength and hope for those of us starting the process.

Hello comrades, I start radiation and chemo next week for HPV+ SCC on the right tonsil and lymph node. Last week met with the speech therapist who gave me four swallowing exercises to do: The Effortful Swallow, the Mendelsohn Maneuver, the Masako Tongue Hold, and the Jaw Stretch. Supposed to do ten reps three times a day. I'm so anxious about getting out ahead of swallowing problems I've been doing more like 50 reps a day. Did your therapist give you these same exercises? Different ones? Different instructions for repetition? I'm willing to do anything if it helps lessen problems later on.

Hi again :) my mom is currently one week post radiation and 2 weeks post chemo. She has oral cancer with one lymph node affected so the radiation shot straight at her upper neck. Right now, she’s in severe pain and describes it as someone cutting the inside of her throat with a knife. Do any of you have any home remedies for throat pain? Her doctors prescribed liquid morphine and not even that is helping her. We are going to request a different pain medication but wanted to see if any of you have any ideas.

Side note: if any of you are experiencing rawness on the outside of the neck, we have been using emu oil and it seems to help with the itchiness and pain!

Thank you in advance!

I am truly grateful for all the comments and and the guidance of everyone’s journey through this terrible club we’re all in. A question I have for the group is I see a lot of people that are doing chemo and radiation therapy to rid the Cancer cells from their body. I was diagnosed with stage one squamous cell carcinoma with metastasis to one lymph node. I am also an unknown primary tumor diagnosis which has me concerned that they’re not being aggressive enough. I had two surgeries, one to remove the 58 lymph nodes and my tonsil, then went in for another surgery to remove the lower tonsil to find the primary which never was found. I am in my second week of radiation. I’m concerned that my treatment maybe not aggressive enough however, my oncologist team @ Rush/Anderson in Chicago said because of my staging they don’t want to be too aggressive. Has anybody in this group been through the surgery and radiation only with no evidence of disease years down the road. Just trying to get some peace of mind that I am doing the right things.

Again, thank you to all

I couldn't be there unfortunately but my husband attended his first 3 month check after 2 x laser cordectomy, ENT happy with how it all looks apart from there is a bump on the larynx, consultant convinced it is benign (could be a polyp or nodule) but looking to book in another lasering to have it removed within the next few weeks as it could improve his voice more ! even though I'd say it's operating at around 90% already.

I was really worried about this appt, he had a one off of coughing up blood a few weeks ago which panicked me, consultant said nothing to worry about could have been scar tissue. I don't think I'll ever stop worrying about him and the possibility of recurrence but so far, so good ! another short relief before worrying about the next scope I suppose 😭

💛

I have had 3 surgeries so far [scalpel & laser] for recurring leukoplakia. At least half of my tongue has a prickly feeling 100% of the time. Feels sort of like if you skinned your knee and air flows over it. It's not painful, but very disconcerting and never goes away. I'm not sure if that feeling is spreading. My surgeon just shrugs and says they probably disturbed nerve endings during surgery. He's seen so much worse in his patients, so to him, this is nothing. I agree that it could be much, much worse, and yes, I can live with it, but if there is anything I can do about it...