Hello, I am a 26 year old who is undergoing Proton beam therapy on his head for salivary gland cancer. AMA

Wow salivary gland cancer, I've never heard of that! What were your first symptoms of this type of cancer considering its in your mouth? Over/under salivation, weird tasting saliva, or any pain?

It was just a lump on the side of my face, under the ear. That was all.

There was no pain or any other symptoms

Wow I guess it's lucky you had a physical sign. I've heard of people not having any symptoms until it's too late. I wish you the best of luck with your treatments OP ♡

Thank you very much. Greatly appreciated

How big of a lump??

Sorry for late reply

The lump was the size of a medium sized coin and about half a cm in width

My aunt has just been diagnosed with this after surgery to remove a lump on her jaw. I think she is going in for radiotherapy soon. She went through breast cancer a few years ago and had to have quite aggressive treatment. It seems so unfair. Wishing you all the best.

Thank you very much and the best wishes for your Aunt.

I assume it came and never went away?

Exactly

Is it true those cancers can be hard to diagnose because they are often confused for oral abcesses an sebaceous cysts? (I have Stage IV breast cancer myself and my metastasis were non traditional showing up in random places) I just got a small new lump im my mouth so I'm really interested in how it felt and your diagnosis experience. I am awaiting an ultrasound and possible biopsy and would be curious if it took a while to determine it was cancer? Was there anything distinguishing about the lump? I really hope your treatment is going well and proves successful for you, you got this!!

First of all, thank you very much.

The cancer was hard to diagnose but it was noticeable on the outside and first passed off a a lipoma by my doctor. My family pressed on and had two ultrasound guided biopsies and then I was diagnosed properly.

After that I had the removal and now therapy.

Best wishes to you and I hope for the best outcome.

Thank you. Do you get any S/E from the proton beam? I dont know much about it

Sorry for late reply but didn't see it. I haven't noticed any yet apart from a bit of swelling

It sounds like you are getting the best Treatment. I hope it goes well. I had an MD misdiagnose a Squaema Cell Skin Cancer-told me to come back in 6 weeks- he was not my regular MD, who was away- so I went to the skin cancer clinic. Within 2 weeks they had Diagnosed it and removed it. So glad your Family pushed harder for you. Are there any side effects from Proton Beam Therapy?

There are side effect from protons. In short, the biological activity of protons is roughly the same as conventional radiation (photons). Both protons and photons deposit an entrance dose, that is they leave some radiation along the path to their target. The main difference is that photons also have an exit dose, that is radiation continues on after reaching the target depositing low doses of radiation in the tissue downstream from the beam path, whereas protons for the most part do not. He could probably expect skin changes on that side of the neck and some mucositis on the inner cheek on that side but will likely have less scatter of radiation into the mouth and thus less irritation of the oral cavity as a whole

Thank You so much. It certainly seems to be a more efficient and less invasive method of Treatment. I wish no one ever needed it.

It’s got a lot of potential. There are certain disease sites where it makes a lot of sense and can really spare a lot of toxicity. Unfortunately the costs are astronomical and there really isn’t a ton of clinical trial data showing it is materially different with regards to long term toxicity or effectiveness.

Just curious, are you a Radiation Oncologist or Physicist? Your explanation leads me towards that direction. I am a Radiation Therapist in Canada that unfortunately does not have PBT, just EBRT and Brachytherapy

Yes I’m a radiation oncologist.

I tip my hat towards you. You are great and I respect you a lot

Just saying that you guys are great and I respect you a lot

In case anyone wants to know what I have to keep me occupied during the 15-20 mins I'm in the mask, I can connect my phone to play music through the speakers.

Which is almost torturous since I listen to Death metal but I am physically unable to headbang in there due to the mask. I also play one Queen song a day since they are great and the staff have requested I play some.

Hey- just wanted to say I had the same mask! I actually kept mine after head/neck radiation treatment, as I thought it would be intellectually interesting to have in my office. Boy was I wrong. I pitched the damn thing.

My treatment was something like 18-19 minutes, so I had a CD picked out and they played it the room. I'm glad I don't associate the music with the discomfort. Have you had any negative association with the music and the treatment?

Now I need to read up on proton beam treatment. Sounds really interesting.

Be well!

Thank you very much.

No, I don't have any bad association with the music although I do have the memory of hearing this (https://youtu.be/V-KME77Pi60?t=44) and not being able to bang my head

What music you into? If youre feeling angry with the world I suggest some "Strangled" also been enjoying "Defamed" recently.

I am into Death metal even though my favourite band is Queen and I would play one Queen song a day and some DM including the Chuck Schuldiner's band, Death, as a tribute since he died due to a cancer in his neck/brain.

Hey! I'm getting my PhD in medical physics and I'm applying for medical physicist positions next year.

There's a big push in medical physics to have patients meet with not only the oncologist, but also the physicist. Some people say it's not a good use of time, but others say that the patients are more satisfied when a physics consult is included. Did you get a chance to talk to your physicist about your treatment at all?

Sadly not. It would have been nice though since my hero was a nuclear physicist. (Feynman)

Dang! Proton therapy is especially cool. It takes a ton of energy to accelerate the protons, and they're able to deposit energy very locally because of their Bragg peak. I'm sure if you want to talk with the physicist they would love to discuss your treatment or how proton therapy works.

Also, if you're in europe they're coming up with very cool new treatments using carbon ion therapy, too. They require even more powerful accelerators!

Edit: also, of course, I'm wishing all the best.

If you don't mind the science joke, proton therapy is very positive.

I just hope you're not gluon' to a quark doctor!

I also hope that, unlike your therapy choice, you end up massless!

I've been meaning to lose some weight, just not all of it.

It wasn't my choice for the therapy but the Doctors' recommendation.

Did they cross the streams?

Even though I ain't afraid of no ghost, I rather they don't do that and thankfully they haven't

Last thing you want is ever molecule in your body exploding at the speed of light, most insurance doesn’t cover that.

Thanks for being a good sport and good luck with the recovery.

No worries. Thanks for the well wishes.

What superpowers have you developed?

Came here to ask this question. Good luck OP, hope to see you saving the world soon

Thank you very much. None as of yet

Keep us posted

I was hoping for radioactive spit but alas none yet.

Still hope

I am.

Maybe I might get Dr Manhattan like powers

A giant blue dick wouldn’t be so bad, I guess.

I don't know, I was more into the control over atoms part of him.

Given that you had a literal death ray fired at your head and are still alive I assume you have gained some form of immortality.

We will have to see.

But as Freddie sang, "Who wants to live forever?"

Are you being treated at PSI? The team there is great. I did my bachelors thesis there. Good luck on kicking cancers butt! Hope you are doing well :)

I am in Manchester in the UK. At the Christie

You might have seen my mum toddling around if you've been going a while. We had her funeral yesterday sadly.

Good luck with the scifi treatment!

I am sorry to hear that.

Thank you very much

Glad to hear PT is picking up in the UK. I participated in installing 3 of them, from another firm than the one you are treated on. But it's great to actually hear from people treated with such systems anyway. Good luck and fingers crossed!

Thank you very much for your firm.

I owe my life to it.

My Nana has salivary gland cancer and it sounds like treatment has come a long way! I was a kid when she was treated for it, but I know she did radiation treatment. She also had to have her glands removed which was a bummer, but I remember she had to alter her diet because there were so many foods she couldn't eat from the lack of saliva. Are you in the same boat? And if so, which food do you miss the most? Best wishes!

Edit: just saw pics of your mask, my Nana's was hot pink!!

I had a small part of my right salivary gland removed which has reduced the amount of saliva in my mouth but I can still eat the same old food, just have to drink more fluids.

That's good! Yeah, my Nana had hers completely removed so Cream of Wheat and soup was her go-to. The lack of saliva also did a number on her teeth, so watch out for that! I remember one time she was so sad that she couldn't eat steak anymore and missed it so much that we cooked her a filet minion and she just chewed on it as much as she could and had to spit it out, but she was just so happy to have real meat again.

Not to be a target for hate but due to my family and religion preferring it (Hinduism), I am a vegetarian.

Thanks for the tip though. I have been drinking lots of water to stay hydrated in the mouth.

Nothing wrong with that! I'm in Texas so steak is basically like a religion here lol (not poking fun at you, poking fun at us!)

I understand. My religion respects the cow since it is a very motherly animal (first milk given to a child after mother's own) so I could never eat one but I wouldn't prevent anyone else eating beef.

Also, I didn't get to choose the colour of mask sadly.

How much is it costing you?

(and best wishes I hope all goes well)

It costs nothing.

As I live in the UK, it is all part of the NHS

That’s crazy I’d say the average course of treatment here in the US is around $200,000 for one single course. Many patients will come back multiple times

That's why I'm thankful for the NHS and the work they do. (Not meaning to boast)

I live in the U.S. and even with decent insurance we've still come out of pocket roughly $45K since I was diagnosed in 2011.

I'm really sorry to hear that. Everyone deserves healthcare without making themselves bankrupt

Proton therapies are super expensive does not normally get covered by insurance in the US. Is this treatment covered by your public healthcare?

Also there are not too many proton linear accelerators around so did you need to travel far to get this?

Yes, the treatment is done by the NHS for free. However I did need to take a 2-3 hour train journey to the city where the centre is located.

Thankfully, the hospital has a hotel relationship where they put the patients from far away.

How long are each of your treatments

Each treatment lasts about 15 to 20 minutes. The whole course is 30 weekdays long

Hi first of all sad to hear man, i wish you all the best.

My question is: Does your view on life change when u experience something like this, if so how?

Already a thank you and respect for doing this again i wish u all the best.

Thank you very much.

Yes, since the first time I have had radiotherapy, I have become braver and less bothered about risks. Also more religious.

I would also recommend reading some philosophy if you become more religious. Always good to get anothers perspective on life.

I read the myths and stories from my religion which is used to convey the philosophy like the Gita.

What is proton beam therapy? Is it new and more successful than other treatments?

Wishing you the best in your health journey btw, hope you get well soon!

PB therapy is a bit new and it uses protons rather than photons since they can give the dose of radiation directly in one spot rather than all throughout the path they take and therefore is safer and more effective.

Thanks for the wishes.

How are you doing with throat or pain? I'm with you in spirit. I had proton therapy 4 years ago w same face mask as well for lymphoma on my heart/around aorta/up neck. It's so claustrophobic being stuck down around the neck during treatment. How are you dealing with that? You got this! Proton beam therapy is such an amazing medical advancement. So grateful. Good luck to you. If you're having swallowing or throat pain and need ideas let me know. You got this.

The mask is a bit constrictive but it forces me to keep my eyes closed and then I can listen to the music from my phone which I can connect to the speaker system in the room. So it is not that bad but I can't head bang which is spirit breaking.

Does the therapy make your mouth change at all or do you taste anything during it?

Just a bit of swelling on the inside

Proton beam? That sounds so badass and futuristic

I know, right?

Do you have any long term side effects from the treatment of your first cancer?

Did they discuss any risks of this part of your body undergoing radiation twice?

Also, do you have a good relationship with your radiotherapy doctors?

(radonc here, feel free to hit me back with any questions you might have)

No side effects from my first treatment that I have noticed and the staff have said that due to the precision of the treatment, the risks are very small.

And I do have a good relationship with the staff since I say terrible jokes to them and they enjoy it since it is a bit of silliness in a very serious job. One staff member has actually decided to find a joke that I don't know.

Radiation therapist here! (Or therapeutic radiographer as you'd know them.)

We don't have many proton therapy centres in Canada and certainly none where I live and work, so I've always been curious about them! How long are the treatments generally? (In terms of total time on the bed, or the radiation treatment portion itself, whatever you happen to know.)

Also, since you're nearing the end of your treatment, have you noticed much by way of side effects? I'm curious how this might differ for such a precise form of treatment compared to conventional radiation.

Good luck!

The actual treatment time per day is only about 15 to 20 mins but it is over 30 days on the weekdays.

The main side effects have been tiredness, sensitive skin on my neck and a bit of swelling there as well.

Dentist here , does the proton therapy have side effects ?

The doctors did refer me to the maxilofacial clinic who removed my wisdom teeth on my right hand side and gave me specific toothpaste to use, as a precaution.

I have also been told to gargle salt water and sodium bicarbonate water after every meal.

So far, no negative effects

How are you doing?

Tired but cheered up by the good wishes from my fellow redditors

Have you been feeling more positive?

I am generally always a bit happy when I am around people since I don't want to make people sad. So i have stayed the same through out

what type of cancer is it and any word if this works on adenocarcinoma?

it is a Mucoepidermoid carcinoma and I am not sure about the adencarcinoma

I feel ya brother, I had proton beam radiation therapy on my spine back after my cancer surgery, I still have the mask too but it went all the way over my head. How crazy was the feeling when they first molded it? It was such weird sensation of the hot wet plastic being pushed and formed to me, and I havent spoken to anyone else with the mask

Having the mask made was not a new experience but it was a bit unusual having pushed onto my face.

Worse was that I chose some music to be played while they do it and one song was called "incised before i've ceased". Bad mistake

Do you experience any pain when eating? I.e. when your salivary glands are stimulated (first bite syndrome). I have something like this but don't have an official diagnosis, was curious if you did!

Just a bit of swelling on the inside and a bit of skin irritation on the outside

As someone who is trying to become a radiation therapist, what things can a therapist do to make you feel more comfortable or what do you wish they would do?

Just tell them that it's painless and give them choices of what to do when they are in there

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I would like to point you to this image which has my full name at the top with my radiotherapy schedule for my H(ead) + N(eck) treatment at the Proton beam therapy centre.

My name can be linked to my account as my name is Kish(ore) (Sh)enoy

https://drive.google.com/file/d/1ueiq9FAdQjV69k2-5KBPFq--cA2ulJjs/view?usp=sharing

Here is a link to photos of me and the radiotherapy I'm undergoing, the hospital treating me and my neck after 5 weeks of radiotherapy

https://drive.google.com/folderview?id=1taHtiSMYdjHnFi_0OKOWyRR_pdpjVOPD

Do you shout "Proton Cannon !" whenever the therapy start to pretend you're Iron Man ?

I wish I could but the mask keeps my mouth shut.

First off, get well soon and we're all rooting for you. Now to my actual question: Has exposure to the proton beam had any effect on you re: the busting of ghosts? Asking for an incredibly slimy green friend.

First of all, thank you. Secondly, no noticeable effect on any ghost busting ability. Not that I had any in the first place.

Allow slimer to relax

Hey I had to go through proton radiation for a cancerous tumor in my pituitary a few years ago. Fortunately, I went to the Mayo Clinic in Minnesota. Where are you getting your treatment at?

Love the mask I’ve got mine displayed on a bookshelf at home.

I am being treated at "The Christie" which is a treatment centre in Manchester, UK.

Thanks for the mask comment but I was told that this mask wouldn't prevent COVID19, which is a bit disappointing

If you are to gain a superpower from the procedure, what would you choose? And seriously, I wish you a successful and speedy recovery.

I would choose ability to manipulate atoms but if that is too OP, I would choose Dragon ball super God powers.

What symptoms you had before you found out about it? Wishing you good luck!

And thank you very much

Just a small hard lump under my ear and that was it.

What are the survival rates for your type of cancer?

My cancer is a low grade one so 90%+ I think and the doctors have been positive that I would survive

Are your doctors aware of the newly discovered salivary glad and the effects of radiation therapy can have on it?

I only found out yesterday night (thank you, Scishow) about this news and I will ask them on monday.

Do you have any idea of how it works/does and also how has it left you feeling?

I believe the protons are put through a cyclotron and then they get a certain amount of energy which is calculated using Braggs peak so that they only penetrate a certain distance.

To add more information, it has left me very tired after the treatment on the weekdays and I feel devoid of any strength

Are you at U of Penn? They have proton therapy. They saved my Goddess's life there.

Best wishes.

No, I am at the Christie in Manchester, UK

Thanks for the wishes

Did your salivary glands swell and get hard/painful? How quickly did it come on?

Ive noticed this among my submandibular salivary glands. I chewed tobacco for years

I just noticed it one day and due to my previous history, I reported it and the doctors investigated it. No pain though at all but was a bit hard.

Did you get a genomic panel? It could be helpful to identify potential treatments. If not, maybe ask your doctors about it.

Nope but I will ask.

So no dry mouth to that extent that you have to rehydrate ?

Not much or maybe an occasional sip of water.

Did they give you a palette of treatment options, and then you picked one based various criteria? I mean, there are a lot of factors to consider:

• The amount of time and trips to the hospital one treatment requires versus another.
• Then there is the financial cost factor. The luxury treatment might be $10,000 per day, but only the very rich can afford it.
• There might only be 5 different treatments options available locally, but if you are willing to drive 10 hours each way you can pick between 9 treatment options.
• Then there are the side effects. Chemotherapy can cause permanent nerve damage so some live in constant pain. But I guess it's cheaper and can be administered at any hospital.
• There are various recovery rates as well. Some might give a 70% survival rate after 5 years vs 50% compared to another (but the financial cost or side effects are very different).

So how do you pick a treatment, and how did you end up with this one compared to say surgery, chemo, immunotherapy, drug therapy and what have you?

The doctors chose the treatment after going past a board of experts.

I rather leave the choice of treatment in the hands of experts rather than my uneducated hands.

Have you seen the recent SciShow episode about the discovery of a new salivary gland? It's important because your therapy can be adjusted.

I did see it last night but I think I am too far in my treatment for them to change any details.

Do you have a wife?

No, not yet

What are you reading? And could you ask around about how I can get free PET scans taken for research purposes?

I am the patient here so not reading anything