Parotid gland cancer

arena113

I’m 54 year old male. First diagnosed in 2024 Had the tumor removed, decided no radiation. It can back this year, had surgery in September. A full parotidectomy and 6 lymph nodes that it spread too. My doctor said i need radiation this time. Can someone please tell me how the radiation is, the side effects are a lot.

wbcgaruss

Hello, arena113, and welcome to the CSN H&N discussion forum.

Sorry you are here in the club nobody wanted to join.

I was just wondering in 2024 was radiation offered and you refused it or did the doctor feel it wasn't necessary?

So your cancer came back and you had some major surgery to remove the cancer.

Your doctor is recommending radiation and I believe it is aptly called for.

I recommend you listen to your doctor and get the radiation follow-up post surgery.

They saved your life by removing the major cancer areas and now you need radiation as a mop up for errant cancer cells that are left after your surgery.

When we are talking cancer cells the size in microscopic which means they can only be seen under a microscope so your surgeon can't see them thus the radiation follows up and kills any remaining or errant cancer cells.

This is standard procedure in many cancer cases and I would say especially when surgery is done first.

I have had cancer that was treated with radiation and chemo alone and I also had another cancer that was like yours in the fact that it was surgically removed and I got radiation follow-up.

Here is a link to some side effects you may experience during radiation and post radiation long term….

Side effects of radiation therapy

https://www.cancercouncil.com.au/head-and-neck-cancer/treatment/radiotherapy/side-effects-of-radiation-therapy/

It would be wise to follow your doctors advice otherwise your cancer may come back.

Do not be afraid of radiation, it can be difficult but your care team will work with you to get you through it.

The effects of radiation vary depending on how much your particular case needs radiation, what strength and how much you receive.

Our motto on here is NEGU (Never Ever Give Up)

Also, I recommend when you get a chance check out the "SuperThread" at the top of the page on the home page of the Head and Neck Forum here. It is a gathering of information, links, videos, etc. to help those dealing with H&N cancer. You will find much information in there about radiation.

Wishing you the very best…

If you have any more questions please let us know.

Take Care, God Bless

Russ

arena113

thank you so much! I did turn it down the first time, which i do regret. This was a much more intense surgery and had to take muscle from my leg and put it in place of the parotid gland. Doc told me yesterday about the side effects, Just scared they will be forever and not go away when radiation is done. I’m scared of them.

wbcgaruss

Well, I don't know how strong or severe your radiation will be, but it is not easy, but it will save your life.

My first cancer, throat cancer, I believe I had the standard strong radiation and chemo to get rid of it.

The radiation nurse and doctor kept telling me to prepare myself, that it would be tough.

I was under no illusion that they were straight with me.

When it was all over, I looked back and I feel like it was worse than described to me, and I think that is because unless you live it you can't describe it although they tried.

It was the hardest thing I've ever done.

People on this forum will tell you the same thing, but they will tell you it is doable.

Your job now is to do the radiation and get this behind you so you can live.

Did your doctor mention getting a feeding tube?

If he does get it, don't turn it down.

One thing you will encounter is thick saliva, and there is a rinse for that.

John Here Are Recipes

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days before returning to this mixture.

Also, below is a fellow who documented his radiation journey; it may help you prepare for the worst and hope for the best. It is off another forum and there is a link at the bottom that will take you there for more discussion and research.

I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requires an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).

On that, yes, I'm still getting tinnitus. It's intermittent and was much worse directly after the chemo - but it's still there. I don't know if it will go away fully or not, but I hope so. (If not, a small price to pay to fight the cancer).

I never lost my voice, but when the mucositis was at its worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillain or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.

(And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm), and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldn't get my hands on any in time to help me.

I stopped eating around weeks 4-5 of treatment, mostly because of the rancid taste dysgeusia.  Everything in my mouth tasted contaminated. (A side effect of the chemo).

It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).

Yes, I still have a sometimes sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury because the treatment actively attacks the stem cells (which normally help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at its worst the first 2 weeks after treatment.

When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.

For me, it went something like this, over the span of treatment:

Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels

So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.

Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"

Here is the link to the forum this came from if you want to read more discussion on it.

https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2

Wishing You The Best

Take Care, God Bless

Russ