Hello everyone!

Pretty much all the information related to the case is present in my signature.

My dad just had surgery (also mentioned in the signature) and the histopathological reports showed the presence of PNI. Doctors will tell us what is the planned course of action coming Friday. Before that I wanted to gain some knowledge to make sure that we opt for the best treatment strategy. Now, I went through some research papers and I have the following information (feel free to correct me):

• PNI in general increases the probability of locoregional recurrence (recurrence in the same place), distant metastasis and reduces the disease free survival period.
• PNI presence often calls for adjuvant radiotherapy.
• Whether or not radiotherapy helps depends on a lot of factors, including the focality of PNI
• Till now there is no conclusive research on whether chemotherapy helps specifically for PNI or not

Now, I have the following questions (as of now):

• If margins and nodes are clear of tumour and PNI was detected in tumour, does that not mean that the nerve branch where PNI was present has been cut off and tumour was not able to reach the margins or the nodes from that nerve? Since the margins and nodes are clear of tumour, so why should the probability of LR increase? Similarly, why should the survival period decrease?
• Is there anyone else who faced a similar situation? pT1N0M0 with PNI present? What did you do?

Looking forward to some helpful information from you guys.
Kind regards
worried son

Welcome son of patient!

I just mentioned you in another post with a new member, who has PNI in the tongue found after surgery. I asked they contact you if they get a chance.

I’ve had PNI two or three different times, i forget, and was able to beat it last time, so far! There is still much to be learned about this type of cancer, and not too sure how much they accomplished since mine? You may know more than me, as I don’t recall discussing it much here since, and had to think twice before posting, and seems so long ago (a good thing).

It’s probably not done everywhere, but I had my PNI resected with a radical neck dissection in 2012, and High Dose Intraoperative Radiation done during sugery. This was the first part, and after 4-6 weeks recovering, I had chemo, erbitux and taxotere, along with IMRT radiation.

My second PNI was almost a year later, after a resection with my carotid, did the same radical neck dissection after testing, and IORT, but was sent for Proton Radiation with Carboplatin about 6 weeks later, which seemed to do the trick! Tomorrow I go for my 6 month PET/CT.

I just realized the time, so I hope this little bit helps!

Good Luck!

Hi Paul!
Thank you so much for sparing time and replying to my post. It's really good to know that you successfully defeated PNI twice! I'm really happy for you. Hopefully the PET/CT went well for you!

I have some questions for you:

• First time when PNI was detected, was it detected through some physical tests along with the tumour and then surgically resected? Or found in histopathological analysis of surgically removed tumour and then the doctors concluded it must be present in the vicinity of tumour and can be resected?
• Any side effects you experienced from radio/chemo? What did you/doctors do to ensure that the side effects are minimum?

Take care Paul!

Hi son of patient, i’m sorry for the delay as i got back home at 7pm, after a long day, but it was worth it since my PET/CT was free of cancer!

To answer your two questions:

1. All of my PNI recurrences was found after the resection found upon further analyses of the tumor biopsy, so it wasn’t known before or during my surgery. They were found by the pathologist later on. My doctor, a radiation oncologist, oversaw the head and neck cancer departments, and co-chaired head and neck surgery, who suggested the treatment plan for the PNI I agreed upon, twice. My first PNI started in one hospital, quite reputable, but my surgeon left the practice, and the treatment suggestions was kind of minimal, I thoight. I quickly interviewed several more places, and decided to go with one particular head and neck radiation oncologist, and his team, due to his reputation i had read about, and believe it was the best choise I made. I’m at another cancer now, but came with the my surgeon at my last hospital.

2. I hate to admit it, but i have debilitating side effects for 9 years, most from the Induction Chemo in 2009, but all the recurrences and treatments following added to my issues. I don’t think much about it now, initially i did, and accepted certain lifestlyle changes, and do what i can.

I hope this helps, and ask any time!

Paul

Hi Paul! Good to know that your CT/PET was clear.

Thank you so much for answering my questions. It means a lot to me.


My Friday's visit to the doctor resulted in the following conversation:

• Depth of tumour is 6mm (>5mm) and PNI is present, therefore they have decided to go forward with radiotherapy which the doctor said will be 5 days/week for 5 weeks (25 days in total)
• I asked him that since there isn't any detectable tumour present then how will we know even after radiotherapy whether or not it has been effective. Doctor said that radiotherapy is only to decrease the chances of recurrence.
• I asked him about the side effects he said: discoloration of the area where radiotherapy is done and dryness of mouth. I asked if the side effects will be permanent, he said they employ techniques to ensure from their end that the side effects are temporary.

To me it seems that the side effects will be visible immediately however I won't be able to measure the positive effects.

Is there something I should watch out for, Paul?

After your first radiotherapy, do you happen to remember what were the side effects? Did you have any permanent side effects from that first radiotherapy treatment? I will ask the doctor about the possibility of those side effects then.

Any relevant questions that I am missing, which I should be asking the doctor?

Kind regards

Hi son of patient,

I must say, you’re well versed with head and neck cancer at this time! I remember knowing nothing when I was first diagnosed, not even who an ENT or an Oncologist was, even though I was seeing both lol, but we learn quickly!

With that, I’ll try to answer your question:

I know some treatments can be different for tonsil cancer in the oropharynx, which I had, vs oral cancer

My initial cancer, primary in tonsils, and bilateral lymph nodes were treated with 70Gy IMRT, lesser to uninvolved lymph nodes. They didn’t want to do chemo at that time, due to my poor condition from prior Cherno about 9 months earlier, which floored me, so that wasn’t offered with my first radiation treatment.

I’ve had IMRT radiation for a recurrences with 25 sessions, 50Gy, after about 30Gy with Intraoperative Radiation. In my case, my RO, Radiation Oncologist, said 50Gy would not be enough! Prior to that, my then current RO and another, only offered 50Gy, and when they heard who I was seeing, they said I was in good hands, so I didn’t see them.

I received a printout, and was informed of the possible side effects from radiation. Hopefully they counciled all parties, gave you one, if not, you can ask for one and any questions.

It takes about two weeks or 10 radiation sessions for most of the side effects to start showing, but some things can start earlier in some people. Side effects depends on the radiation dosage in Grays, areas radiated, duration, and frequency, if I got most right lol. A few years ago, I knew it like the back of my hand!

Magic mouthwash was a savior as was taking thrush medication, pain meds like oxycodone, later on it was a stronger opioid, and having my mouth sprayed out daily at the radiation center. I didn’t have it for my initial radiation, but having mouth guards were helpful, so I have heard.

Side effects are broken down into short term, less than 3 months, and long term side effects lasting longer than 3 months.

It can be rough from midtreatment to just as long as radiation lasted, in my case 7 weeks, then other side effects.

I think dry mouth persisted for years! Maybe two years ago it seemed to lessen, and no longer use OTC dry mouth products, but still carry and use bottled water.

Depending on area radiated, the thyroid can be effected by hypothyroidism long term, so I take thyroid medication daily.

All my teeth were removed due to recurrences, and treatments, but you wouid need prescription fluoride treatment and impeccable oral care to help preserve the teeth, but sometimes that’s not enough in some cases.

I would suggest another opinion or two at a CCC or CC, I think it was the best thing I did. Hopefully, there is more time for you to do so. Treatments from surgery to end of radiation should be kept around 100 days from what I recall.

I hope this helps, and probably mixed up my responses. I think most will fall into place once treatments start!

All the best,

Paul

Hi Paul!

Thank you so much for your reply! Without kind humans like you who choose to share their knowledge and experience, it would certainly be difficult for someone like me to learn. So thanks once again!

I'll try to summarize your reply in points for my benefit and for the benefit of others who may find themselves in this spot:

• You had cancer in tonsils and bilateral lymph nodes for which you received chemo and chemo had a harsh response.
• 9 months later, you underwent IMRT: 70 Gy, 5days/week for 7 weeks, a total of 35 sessions.
• Before radiotherapy, you received a printout which had all the possible side effects, which I will ask the RO to do.
• Side effects experienced by you started approximately after 10 sessions, this varies from patient to patient and from the dose and frequency of radiation, intuitively I feel, this makes sense because every adjacent part/tissue should have an upper limit on the accidental dose that it receives, for example cells in salivary gland may have a limit of, say, X Gy and if the radiation dose exceeds X Gy that may affect the functionality of salivary glands. Similarly, the cells undergo cell cycle and in some phase of the cell cycle it might be more sensitive to radiation than in the other phase so frequency will also determine side effects.
• Side effects which one should look out for:
  • Dry mouth.
  • Hypothyroidism
  • Teeth requiring extra care.

I'll ask doctor about the feasibility of mouth guard, what does it look like? Is it like some material which covers all your teeth?

What is CC/CCC?

I have to visit the doctor on Monday to get dad's nasal feeding pipe removed. I'll make sure to ask all the relevant questions. Thanks Paul!

Kind regards

I believe CC = cancer center, below is from "abbreviations" on this site.

CCC - Comprehensive cancer center or clinic; A tumor board at a cancer center will include doctors trained in different disciplines. Having your case presented and evaluated by this type of multidisciplinary team will give you the best options for treatment, considering all possibilities from their different areas of expertise.

I don't know if this "CCC" term is used in India. Certainly you will have hospitals that specialize in cancer (and if there are choices, the one with a strong history of working with Oral Cancer is best).

In my case the CCC warned me that the use of any alcohol would cause the cancer to start again.

Thank you tlc356!

I did not see he was in India! You're correct in your CC and CCC terms, although they are abbreviations many use, so it's name doesn't mean much as there is no license or requirement to use such term, so many do. There are two organizations that are highly regarded, and those are members of the NCCN and NCI, that use designated CC or CCC, which you can find here. Another place I use is U.S. News Reports Best Hospitals, where one can probably find most all the institutions from the NCCN and NCI centers., I look under Cancer and ENT, which will show the best hospitals by rank in the U.S. for the best hospitals, then go to the hospitals cancer and otolaryncology web page, and find out more. It's not a difficult process. Still, I found the best hospital eventually, that wasn't on any of the listings, maybe now since it joined another hospital, and that was the reason I bypassed it from the beginning, but wound up there at the end! I only go in NYC where I live, and had treatment in NJ for Proton Therapy since none are in NYC, yet, though there

Son of Patient,

You're correct in your analysis! Each area has a maximum dose toxicity level, and radiation dosage is kept in those limits. I have permanent side effect, arm paralysis, from brachial plexopathy, from radiation due to a recurrence near the collar bone in level V. Usually they do not radiate level V or are kept to a minimum dosage, since tumors are less frequent there, but I was warned before of the possible side effect.

The material a mouth guard uses, maybe vinyl.

One should get a dental exam before radiation, and have teeth repaired, and if they can't be repaired, they should be removed. After teeth removal there should be 2-3 week, closer to 3, healing period before doing radiation. The dentist should fit a mouth guard.

Yes, tumors go through a cell cycle before death. I forget it mostly, but recall G0, G1, S G2 and M phases.

There can be many more radiation side effects some that are more common, less common and rarity. I thought there was a page on radiation, IMRT here? It's probably best to look there instead of me trying to repeat as much as I recall, but can help clarify any questions. I've read just about every page here on OCF. What I recall is another story lol!

Why are they removing the nasal tube now when one may need it during radiation? They can still use it during radiation on the inside of the mask. If one is put in after radiation has already begun, it should go on on the outside of the mask. I always had a peg tube, so that was no bother, mostly. Now, they don't like to use a tube until it's needed though.

When does treatment start?

I hope this helps, and read up here if you like!

Son of Patient,

Like PaulB said, there are a lot of possible side effects from radiation (and chemo, for that matter). During treatment, it’s important to make sure the patient isn’t dehydrated. This can happe very fast and can make the patient feel really awful. The other is mouth sores. These need to be monitored so that there is no infection.

You should ask the doctor how much radiation your father is going to get. My husband got 70 grays (gy) initially and then 20 gy twice in a different area. What the patient gets each day depends on how many days the radiation treatment lasts — my husband initially got 2 gy per day over 35 days, then the next two times he got 4 gy per day over 5 days each treatment.

Thank you so much for replying tlc356, Paul and gmcraft!

Paul,
They removed the nasal tube because Dad asked them to. He was experiencing irritation in throat due to the tube.I informed him that we may need the tube again once RT starts, he said we'll again get it installed if we need it. He's more cheerful now with the tube gone, probably psychological. Still, whatever makes him happy.

gmcraft,
We haven't contacted the radiation oncologist yet. The surgeon who performed dad's surgery is saying that RT won't start before atleast 3 weeks from now. We will have weekly follow-up visits till then to see dad's status. Once the surgeon says we can start with RT, I'll ask the radiation oncologist about the radiation dose, fractionation, areas to be radiated etc.
Thank you so much for your advice! I will ensure that dad stays hydrated during RT and will watch out for sores.

Hoping that he won't have to go through any permanent side effects.

Will update after the next weekly follow-up.

Thanks once again everyone! Your help means a lot to me. Hope you and your loved ones recover soon!
Kind regards

You’re welcome son of patient! If any questions pop up, ask here, besides with the doctors!

Good luck!
Paul

Welcome to OCF! Im sorry its taken me a while to welcome you. I knew you were in great hands with Paul and the other members who have been helping you. Some of the more technical things that have been discussed, you should discuss with your fathers medical team. Since our members do not come from medical backgrounds anything said is never intended to replace the medical advice of a physician.

The 3 weeks until rads starts will go very quickly. There are lots of things that need to be done to prepare for rads. He should have a full blood panel done including thyroid and testosterone levels. Down the road most patients who have had radiation to the head and neck areas have issues with those things. Its important to get the numbers now, later when your father has issues with his thyroid and testosterone levels his doctor needs to know what is normal for your father.

Radiation treatments for OC patients has a major impact on the patients ability to eat. Patients sense of taste, ability to swallow, saliva and painful mouth sores (almost all patients who have rads will eventually get mouth sores) may be some of the issues patients go thru during rads and in their recovery phases. The side effects I mentioned are on a temporary basis but to the patient it seems to be forever! Im sure at this time after the surgery your father had he isnt able to eat as well as he normally would be. When going thru radiation and the recovery phase (after completing radiation treatments), most patients struggle to take in enough calories and drinking enough water. Eating and drinking are the most important things a patient can do to make everything as easy as possible. The better your father can do with taking in at the very least 2500 calories and 48-64 oz of water every single day, the easier this will be for him. I know it sounds like alot but those are the bare daily minimums, if you can get your father to push himself to take in more that will only help to make everything easier on your father. Cancer patients going thru a cancer diagnosis, treatments and then the recovery phase affects how their body burns calories. Trying to fight the cancer and rebuild the body causes patients to burn calories at an incredible rate which is why they need such a huge amount of calories and water. I tend to nag our members about intake. I hate seeing anyoen struggle especially when its something that they can change just by upping their intake.

Best wishes for your fathers continued recovery.

Wow, that was really informative. Thank you so much Christine!

I will make sure to get the testosterone and thyroid hormone levels noted before the RT starts. Will also read up about it as to why these hormones are affected.

I also understand that in order to get advice on technical issues I must see the doctors and I do exactly that. However, people at OCF have learnt so much from their experience that I love to get your perspective and note down what all I need to tune my ears to when the doctor brings something up, or what all to ask the doctor.

I will also make sure that my father's calorie and water intake is sufficient. Will ask the doctor to recommend a dietitian who can give us the right diet plan.

Thank you once again. Take care!

Hello everyone!

I followed Christine's advice and got CBC and KFT done before the RT to have his testosterone and thyroid numbers. Wanted to share the developments as of now.

So today is the 15th session of IMRT (28Gy/60Gy received). Dad is developing ulcers in mouth and throat but he seems to be determined to go through the remaining 15 sessions without nasal feeding pipe.

• Diet:
  • That said, he is having difficulty swallowing food because of the above mentioned ulcers and doctor recommended that he should use glycerine and Mucaine gel (mild local anesthetic) 15 minutes prior to eating anything to reduce pain in ulcers when he tries to eat something.
  • We have modified his food intake to semi-solid and liquid diet which consists of oats, protein shake, cooked pulses with boiled rice. He is drinking around 70-74 oz water everyday.
• Other symptoms:
  • He's also experiencing headache and Dr. recommended Ultracet to take care of that.
  • Apart from that he's experiencing mild fever ~99-100 degrees fahrenheit which comes and goes.
  • His teeth have become particularly sensitive as well, we are planning to start using toothbrush with soft bristles and thermoseal RA toothpaste to take care of this sensitivity.

That's it as of now. Let me know if you have anything to say on the above points.

Thank you!

Your father is at the half way point where most patients begin to notice the side effects. For mouth sores, your father should be rinsing his mouth at least 4x a day with one cup warm water, 1 tsp baking soda and 1 tsp salt. The salt will probably burn like heck. Its ok to cut it back to 1/2 tsp or even less. Just try to get some salt into the mixture. Swish it around for 30 seconds or longer if he can tolerate it and spit it out. Over the years Ive heard from quite a few members who have touted the wonders of using manuka honey on their mouth sores. Im sorry but I cant remember which number is the best for the manuka honey but it was discussed a good 5 years ago, maybe longer.

Pay close attention to your fathers intake. Every single day he must take in at the very least 2500 calories and 48-64 oz of water. Sounds like he is doing great with his water consumption. Weight loss is an indicator that your father isnt getting enough calories. Doctors prefer to have their patients maintain their original weight when going thru treatments, even those who have extra weight they could easily afford to lose. Its very difficult to eat when you have a sore throat and mouth sores.

Another thing to get is a prescription from his doc for magic mouthwash (MM). Theres several variations of MM. The combo I had was malox, benedryl and lidocaine. Your father would swish this around in his mouth and spit it out before trying to eat. It will numb his mouth long enough for him to eat without so much pain.

Hello everyone!

It's been a while and I'm back again to share the progress as of now and to listen to you guys in case you have an idea as to what's going on/ if there's someone who's been through a similar situation before.

So 6 months after my father's radiotherapy we went for the first post RT/surgery MRI scan as per the doctor's advice. The MRI report said the following:

• No abnormal enhancement in the primary site (tongue) to suggest any recurrence. (YAY!)
• Mildly enhancing soft tissue thickening involving left mylohyoid which was not seen in the previous MRI (?)
• Few small nodes seen in level 1b and 2 (?)
• Degenerative spondylotic changes in visualized cervical spine. Mild posterior disc bulge at C3-4 level and diffuse disc bulge at C4-5 and C5-6 levels. (?)

I have an appointment with the doctor today to understand points 2,3 and 4 but I'd love to know if anyone else has faced something similar.

As far as the psychological side of things are concerned, father is more moody now. Gets angry quite easily but realizes there was no need to get angry afterwards. He has all of my love and support. He stopped smoking but resumed alcohol consumption a month after the radiotherapy despite my constant questioning. He doesn't drink too much, it's more like either a pint of beer or half a quarter whisky (not both of them together) but that's on a daily basis which worries me given that the doctor had asked him to use a non alcoholic mouth wash.

That's is as of now. Hopefully points 2,3 and 4 are not to be worried for. Hopefully dad will stay football fit.

I hope everyone's happy, healthy and making progress in their lives. There's a beautiful hymn in sanskrit which I'd like to end this post with:

सर्वे भवन्तु सुखिनः
सर्वे सन्तु निरामयाः ।
सर्वे भद्राणि पश्यन्तु
मा कश्चिद्दुःखभाग्भवेत् ।
शान्तिः शान्तिः शान्तिः ॥

Here's the line by line meaning:

1: May All become Happy,
2: May All be Free from Illness.
3: May All See what is Auspicious,
4: May no one Suffer.
5: Peace, Peace, Peace.

Thanks for the beautiful hymn.

I’m afraid that, like you, I have no clue what the radiology report means. It really is best you take it up with the doctor. I would also talk to the doctor about the drinking and get him to speak to your father. If you father won’t listen to you, he may listen to the doctor.

Thanks for the advice gmcraft!

So, according to the doctor the above mentioned suspicious looking points are RT side effects. He did a physical examination by pressing the mylohyoid area, he said it seems clear as of now. He asked to come back again for a checkup after 3 months. I want a second opinion though.

I also had another conversation with dad about alcohol and he said he'll quit altogether. I told him if he can do that then that's great otherwise start slowly. Reduce the frequency and gradually get to the point where you don't feel like having it. He seems on board.

Glad to know it’s good news all around.

So much better that your Dad buys into the idea of giving up alcohol, it will make it so much easier for him and the family.

Wishing you happy holidays!

So we moved to a different city in January and took a second opinion from one of the best government Hospitals here. This doctor over there did a thorough physical examination and came to the same conclusion that whatever is mentioned in MRI report is simply RT sides.

Fast forward to April, dad started complaining about back pain and pain in his hips, we took him to a "reputed" ortho and told ortho about his history of tongue cancer, he took X-rays of his hip and after some more examination asked for MRI of LS spine. We did that and he concluded it has nothing to do with cancer and put him on meds for slip disc pain relief and slip disc related physiotherapy which he said will take another month to show results. Dad's pain didn't reduce and post one month when we went back to the doctor he mentioned it's possible that given his age, it is arthiritis related pain and prescribed meds for arthiritis which we didn't consider because it felt like he's just doing hand waving instead of a proper diagnosis, meanwhile we took second opinion from another ortho and he also concluded slip disc and prescribed some other meds and alternative massage therapy for one more month.

We wasted 1 more month but the pain didn't come down, 2 days ago it became so severe that he could barely walk. We went to a third ortho and he asked for hip MRI. The hip MRI showed osteolysis in pelvic region and soft tissue development. We got him admitted to the best hospital in this city and had the best oncologist here look at him. The oncologist prescribed a PET/CT scan and we got the PET/CT done today morning. The results will come by evening. I'm really worried. I hope everything goes well.

Son of Patient,

Good luck with the PET/CT results!

I’ve had back problems for 38 years, with several slipped and bulging discs since I was 21. A year or so later after that, I had intradiscal therapy called chymopapain (discontinued) injection into the spine which was only done at one place in the US. It helped, and brought me here today. it seemed like when i exercised by back improved. When I didn’t exercise it seemed as the back got weaker, and the pain increased sometimes.

As far as the back, with doctors appprproval, I think physical therapy to be one of the best treatments, if they approve it.

Now, I have osteoporosis of the femur. I’m suppoaed to start physical therapy one day, but haven’t found the time between all my doctor visits, but I’ll have to make room before it gets worse or need surgery!

Good luck with everything

Hey Paul! Thanks for the reply. Please find time for yourself and your health. I believe nothing is more important than that.

So the PET/CT results showed that the primary origin site is lungs and from the lungs it has spread to the right leg compartment. Now the doctors are saying it can possibly be a second cancer, lung cancer which has metastasized but there is a possibility that it is TB.

His bronchoscopy biopsy was done today and after convincing the Doctor who was going to perform it, I was able to get some sample of the tissue for myself which I sent to a third party histopathology test lab to double check the conclusions of the hospital as I don't want to take any sort of risk.

Meanwhile, they're giving pain killers and bone strenghthening medicines to dad to relieve the pain which is severe as of now.

I really hope it is a silly issue like TB!!! The results will come out sometime next week, till then I have my fingers crossed.

Stay strong folks.
Love

Son of Patient,

I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!

I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.

Take care for now, and my thoughts are with you along the way!