Tongue/Neck Cancer treatment - what to expect and when to expect it?

I obviously touched on a taboo subject - was surprised to see my entry edited.  Did I miss an instruction post that indicates what we’re not supposed to talk about? 
 

Hello Juneau‍ 

The system filter removes the word keto due to a problem we recently had with spammers trying to sell keto supplements.
Your post is just fine. I thought I had already edited yours back to include the word for the context in your discussion.
I will try it again.
Thank you for your post

Lianne

Juneau‍ 

PS - I am glad you have found JamesT‍ and Ken Anderson‍ 's posts to be of help to you and I am sure they will be happy to hear that as well

Thanks
Lianne

Hello Juneau‍ 

Sorry to hear what your husband is going through.  When I had the biopsy done it did take a full week for the results to come back.  When they did it was identified as cancerous, but the doctor wasn't able to offer any more insights...Next step was getting in to the cancer clinic and that's were I found out it was throat cancer and caused by HPV.  While this was a shock, it is something that could have been from 30 years ago.

If you go under this area of head and neck I point folks to a post I did titled my story James.  It's a pretty good synopsis of what I went through and experienced.

If your hubby finds out his lump is cancerous, then the best advice I can give is to put on some GOOD weight.

Let us know when you find out.

Sincerely,


James

Hi Juneau‍.

I really can't comment on the pros or cons of a ketogenic diet.  It was something I looked at briefly, but, I honestly don't remember why I chose not to follow it.

However, I do recommend that your husband try to put on muscle prior to treatment.  Compared to most others that I've corresponded with, my eating problems have been insignificant.  Nonetheless, I went through a few weeks where I simply had no desire to eat.  It wasn't so much the mucositis (although that had some definite effect) as it was that nothing tasted good, and most things tasted bad.  Even though my stomach was growling, I had no desire to eat.  Thankfully, because I didn't lose my ability to swallow, I could force myself to eat, but it took a long time to get through a meal.

Having read my blog, you'll know that I REALLY didn't want to have a feeding tube.  That was one of my primary drivers for making decisions about which treatment paths to follow.  I am so glad that I never even came close to needing one.  But, if I had not been able to swallow in addition to not having an appetite, I would have been in a tough spot.  So, putting on weight, and keeping it on as long as possible, was one of my key focuses.

Although everyone said, "eat all the ice cream you want", I really didn't want to just put on fat; I knew I'd just feel uncomfortable.  Going to the local rec centre and deliberately building up my glutes and thighs (pretty simple actually after talking with a trainer) got my weight up without putting on much fat.  I probably started treatment healthier than I had been in 5 years.  And, yes, I ate a lot of carbs, but the muscle came from work and lots of protein.  I started eating a higher percentage of carbs after I started treatment, lost appetite, couldn't exercise without burning calories, and needed to keep the weight up.  A big plate of spaghetti is 1,000 calories, and to keep my weight as close to 190 as I could (my normal weight is 170), I needed to eat close to 4000 calories a day.  Calorie calculators indicated I needed fewer than that to maintain that 190, but that just wasn't my experience.

I see that the latest biopsy your husband had was from his lymph nodes.  I expect that was using fine needle aspiration (FNA).  I really hope that you get definitive results from that.  If not, my recommendation is that you do not have a second FNA, but immediately go for an open biopsy.  My diagnosis was delayed by about 6 weeks simply because a definitive diagnosis could not be obtained from two FNAs.

I don't know if this is true, but I've heard rumours that Toronto hospitals are likely to recommend that patients have a PEG inserted sooner than later.  Here in Victoria, the practice is to not put a PEG in unless it's truly necessary.  I've got to say, I really like the way Victoria does it; worked for me!

I truly wish you and your husband the best of luck.  As you say, "the waiting sucks."  The nice thing though, it seems, is that HPV-positive base of tongue SCC seems to progress very slowly, even after it's affected the lymph nodes.  So, from what I've seen and heard, although you may be frustrated by a slow diagnosis, the lag probably will not have a significant affect on how your husband is treated or on how he is affected by the cancer.  But it sure is annoying.

-Ken
https://dealingwithbaseoftonguecancer.home.blog/

Juneau‍,
Just a few more notes.

1. As much as I tried not to, by the end of 2 weeks post-radiation, I had lost all but a couple of the 20 lbs that I'd put on.
2. The reason that I needed 4,000 calories to maintain my weight is that, although I wasn't actively exercising, in addition to the calories needed to sustain my body's normal health, my body was really busy regenerating new tissue in my mouth.  It took me a while to clue into the fact that my body started trying to rebuild damaged tongue, palate, muscle, skin, and vascular tissue as soon as the radiation killed it.  That rebuilding effort used up calories that normal calorie-requirement calculators don't take into consideration.  And, at my lowest times, there was no way I was eating anywhere close to 4,000.  I was lucky to get 1,000 in on a day.
3. The easiest way to get protein is with Ensure, Boost, etc.  But those things are expensive, and for many people have a decidedly unnatural taste.  I bought a BIG container of 100% natural whey protein powder from my favourite international box store.  Way cheaper, but also approved by my dietitian, because it did not contain large amounts of antioxidants.  As your husband's dietitian will tell him, antioxidants are great for repairing cellular and DNA damage that can result in cancer.  However, it also offsets the effects of radiation, which is to actively damage cells and DNA.  So, during radiation, your dietitian will tell your husband to lay off ingesting large amounts of antioxidants.  Many protein powders deliberately contain large amounts of antioxidants, and you should avoid those.  Boost and Ensure are still good things to have around though; unlike protein powders, they contain other nutrients in quantities that allow a person to literally live off Boost/Ensure exclusively.  Yuck.

-Ken

-Ken

Thanks for the input.  Really appreciate it 
 

We found out today that the biopsy revealed SCC, but the test for HPV was inconclusive.  Our EMT transferred us to the Ottawa General’s oncology unit. He said they may test again, but he is of the view that the treatment is the same regardless of HPV status.   We were told we should be contacted within two weeks. 

so we wait. 

Juneau‍,
My understanding is that treatment is not necessarily the same, because the cancers (HPV-positive vs HPV-negative) do not have the same cause; many studies indicate that the cancers are actually different, and certainly the overall survivability and recurrence rates are much better for HPV-positive than they are for HPV-negative.  Therefore, your oncology team should be letting you and your husband know what your options are, most notably that, depending on your husband's staging, chemo is definitely optional. 

-Ken
https://dealingwithbaseoftonguecancer.home.blog/

Juneau‍ 

Sorry to hear the test was inconclusive and you're still waiting for answers. You may find it helpful to call our Cancer Information Service they can help explain the differences and help you navigate things it is toll-free and you can reach them at 1-888-939-3333.

My Dad's tongue and throat cancer were also tested to see if they were HPV related. 

Keep us posted,
Lacey

Radiation and Chemo...what about proton therapy?

Nov 8 update: 
On Monday we received a call from the Ottawa General Hospital for our first appointments at their cancer centre.  Two appointments were scheduled one with a Dr of radiation oncology; and the other with a surgeon.   I said to my husband...so this is how we learn that you're having surgery?  We were expecting to go in and find out if they were going to do more test to confirm it was HPV in origin and to begin talking about the treatment plan. 

We met with the Radiation Oncologist first.  She ask what we knew about what we were dealing with (thanks to you all, the internet and my husband's big brain, he really gave her a thorough explanation of what we thought was going on).  Metastatic SCC primary tumour in the base of tongue that had spread to two lymph cervical lymph notes...suspected HPV b/c of his age, the fact he wasn't a smoker or drinker...but this was not confirmed by the biopsy  performed by our ENT, but our ENT said we should be referred to the cancer centre anyway b/c treatment would be the same.). She told us that radiation would be a key part of our treatment plan, but not necessarily surgery b/c it's more challenging to be sure the whole tumour is removed by surgery and the tumours respond well to radiation (She said if the tumour was in a tonsil, this would be a more clear cut operation and would be recommended). (for more on this see: ORATOR study - https://clinicaltrials.gov/ct2/show/NCT01590355)

She looked at the back of his throat with the flashlight on her iPhone (yes, her iPhone) and excitedly said..I can see it, it looks like HPV...puffy and all paploma-y!  (a month earlier my husband's dentist tried to look for it, even after he had been told the CT scan showed something).  She had an intern scope him and the tumour was visible...they seemed to conclude visually that it was a HPV+ tumour.
We then met with the Surgeon who came in with an entourage (he said they have to travel in packs for safety).  He asked my husband to explain what is going on to the pack. 

STAGING - from the internet we were expecting the staging was 3;  but our surgeon explained that work had been done to reverse engineer staging to align better with outcomes (HPV outcomes) so he staged my husband and 1 and gave us good confidence this is curable -90%. (yay!)

The surgeon started explaining options and began with the do nothing option and noted the right to physician-assisted dying, but quickly added this might be a logical place to start if my husband was 98. 
He noted that surgery is done for these types of cancers in some places and mentioned that at the University of Pennsylvania it is used for hang nails....he noted that each patient needs to be assessed individually.  He didn't think surgery was a good option for my husband b/c evidence shows that results are similar and the long-term effects of surgery can really affect quality of life and you still have to do radiation b/c you can't be sure the robot cut everything out.  

He then said we had a choice over whether to do radiation alone or radiation and chemo; in his view the jury was still out on whether or not it was beneficial to have with radiation or not.   We are supposed to speak with a medical oncologist before making the decision. 

With radiation they explained he would have 35 treatments - 6 a week (one day with 2 treatments 6 hours apart) . They gave him the impression that he should be able to drive himself to treatments...but he would start feeling fatigued after the 3 week and might not be up to driving in the last couple weeks.  (hey kids, Christmas is cancelled!).
Chemo if done would be done 3 times by IV (platinum?  I think was mentioned). 
The Surgeon noted that patients that use chemo have a higher chance of requiring a feeding tube.  I asked about hearing loss and he said yes, this can be an affect. 

So, we are definitely leaning towards just doing radiation. 

But then last night a friend suggested we explore proton therapy in the US.  His Dad had done it for another type of cancer in Boston and was still suing his insurance company to recoup the six figure cost of the treatment..My friend nicely noted we could finance it ;-).    I did some research and found out 1) yes, it's a new form of treatment that doesn't use x-rays but instead precision pin-pointed protons which prevent nearby tissue from being damaged; 2) it's expensive and not all insurance companies in the US cover it 3) there doesn't seem to be much clinical evidence of it being better for cancers other than brain and pediatric...but I didn't do much research on this, most of these conclusions came from articles talking about how hospitals are not getting their money out of these expensive machines.   Do any of you know about proton therapy?

Things are moving along for us, I feel grateful to be in Canada and almost wish my friend hadn't mentioned this US option.  
 

Juneau‍,
Congratulations on the Stage I diagnosis!  That's WAY better than Stage III.

It sounds like you're going through the same kind of "process" issues that I had; little advance notice of what's going to be happening to you within the short term.  Long term sure, but exactly what's going to happen at my next appointment...not so much.

I briefly investigated proton therapy, but decided very quickly that it wasn't going to happen in Canada, and I couldn't afford to do it in the States.  You might also get email from people who recommend you look into Keytruda, an immunotherapy treatment available through trials in the U.S.  I was advised by my oncologists, back in July 2019, that immunotherapy options, although promising for some, were simply not available in Canada at this time, and were not recommended for early stage base of tongue SCC.

I, too, had the 6x6 RT schedule.  Radiation treatments themselves are very easy.  The patient feels absolutely nothing, assuming claustrophobia is not an issue.  Speaking for myself, who declined chemo, getting myself to and from the clinic was not an issue at all.  Maybe because I didn't have chemo, I had no fatigue, so getting around simply was not an issue.  As I've told friends, I never really felt sick; I just had a pretty sore throat.

I understand that you've already had a look at my blog, but just in case you'd like a refresher on the investigation I did regarding chemotherapy, have a look at https://dealingwithbaseoftonguecancer.home.blog/tag/chemotherapy/.  That page shows, in reverse chronological order, the posts I made as I delved into the world of chemo.

-Ken
https://dealingwithbaseoftonguecancer.home.blog/

Juneau‍,
In addition to investigating chemo options, I strongly urge you and your husband to look into the use of radiation stents to reduce the number of mucositis ulcers he might have.

Have a look at https://cancerconnection.ca/discussions/viewtopic/66/63559/ where I explained how I learned about radiation stents, then Google "backscatter mucositis radiation stents shields", and then talk to both your radiation oncologist (RO) and the dentist who will be recommending whether or not your husband should have any dental work done prior to radiation.  If either your RO or dentist feel that a stent might be useful, they need to have one built before the RO commences designing your husband's radiation plan, which will happen after your husband's had a PET scan done to show exactly where his tumors are.

From what I've heard, not all RO's or dentists feel that radiation stents are beneficial.  But, given what I know now, and given how painful just one ulcer was and how difficult it made chewing, if I had to go through RT for base of tongue SCC again, I would want good reasons from them why I shouldn't have a stent made just in case it did have some benefit.

-Ken
https://dealingwithbaseoftonguecancer.home.blog/

Thanks Ken! 

Re: staging.  I have a feeling you would likely be staged at level one now too; I got the impression it has only recently been re-adjusted and may not be fully adopted at every hospital.   
I did mention the use of dental stents to my radiology oncologist, she didn’t seem to understand what I was talking about; I have been doing some research and my husband will bring some of these articles with him when he meets with his dentist next week. 

For the benefit of others - here are key articles...it seems kinda obvious and affordable so I’m surprised it isn’t common practice. 

https://www.jpsr.pharmainfo.in/Documents/Volumes/vol8Issue12/jpsr08112607.pdf 
https://www.ncbi.nlm.nih.gov/pubmed/23927311

https://www.redjournal.org/article/0360-3016(82)90076-1/abstract

https://www.medpagetoday.com/meetingcoverage/mhncs/30933

https://academic.oup.com/jrr/article/57/6/709/2605915

https://www.jpsr.pharmainfo.in/Documents/Volumes/vol8Issue12/jpsr08112607.pdf

 

Nov. 17 update

Thanks again Ken for the information about metal fillings and back shatter.  My husband went to see his own Dentist and had impressions made and is getting a mouth guard made - we hope it will be ready in time for his CT Sim appointment otherwise we will either have to delay the CT Simulation or do them all without the mouth guard.  It seems odd to me that we had to take this into our own hands.  Once the oncology clerk knew we were pursuing this she seemed to jump on board and started coordinating the appointments but someone told her most patients just use the dental trays used for fluoride treatments.  

I

Juneau‍   Ken Anderson‍  
Hello to both of you, and all of us affected by the base of the tongue cancer. I, too, was HPV+, discovered by my dentist,and additionally, I was a long-time cigarette smoker (quit 16 yrs ago) and a lover of Gin+Tonics....until my biopsy revealed cancerous tongue and right tonsil. 
I have read Ken's blog, and also followed Juneau's entries...and I find you are both on the right track. Oncologists and the resulting treatment options can be daunting. Like Ken, I declined chemo and refused to allow any feeding tubes...thankfully, the radiation was a successful curative treatment. However, I suffered mightily from tongue blisters and sore throat...which made it hideously painful to try eating or swallowing. I lost a lot of weight, and then after 9 months I felt my tongue healing and so was able to eat small bites of mushy foods like mashed everything!, made sure to swallow with lots of liquid so as not to gag or choke when swallowing, and have gained back 15 lbs. My salivary glands were fried, so now I am trying acupuncture to awaken them (if it works!)
This location for oral cancer sucks! Tongues are responsible for speaking, breathing, swallowing, chewing effectively, and even smiling and brushing one's teeth.
Juneau, you are on the right track and doing your research with intelligent people and solid web sites are commendable.
Keep strong, keep patient, keep stress to a minimum and continue giving us all updates. Tongue cancer is curable and I am grateful to be cancer free for almost 1 year!!  YAY!
law

Thanks for the encouragement.  My husband just got back from a dental appointment and will have dental trays ready before his CT sim.  The word stent doesn’t seem to be resonating with the dental medical team.  I get the impression it is standard practice in Ottawa to use fluoride trays to limit backscatter from fillings.  My husband will have a custom set.  I’m grateful to Ken for getting me on this;  it’s so nice of people to share what they wish they knew to those in a position to act on it.  We have our first appointment with the medical oncologist tomorrow where we will discuss chemo.  We are still leaning towards declining it.  

I also just found out about EI caregiver benefits...all the things I didn’t know about.  

My husband starts his radiation treatment today. We got the call yesterday.  Today starts with two treatments   He’s gained weight, got his dental guard, has been doing the shallowing exercises he was taught, and we’re loading up with club soda, mouthwashes, smoothie ingredients ...all systems go.  I planned on making him a radiation calendar, (like an advent calendar). My son and I hastily put it together and it isn’t pretty. Today he gets to open two doors and will find a note revealing his gift (the Giller-prize winning book). I also made a radiation playlist on Spotify...I don’t know why I do these things.  Likely more for me and the kids than him. 

ready, set, Radiate!

Juneau‍ 

All the best to you all as your husband starts radiation. It sounds like you have done everything you can to prep! That is awesome.

I think you do it because your thoughtful person :)

Keep us posted,
Lacey

Juneau‍ 
Please pass on to your husband my best wishes for comfortable results.  It sounds to me as if you're both as prepared as you could be.

If you haven't yet, get a Curaprox toothbrush.  It's really soft and comfortable, and easier on sensitive mucal skin than an electric.  Here in Victoria, it was my SLP that gave me a free one.

-Ken
https://dealingwithbaseoftonguecancer.home.blog/