Left tonsil and left lymph node.
Hi I have just been diagnosed (4days ago) with cancer in my left tonsil and left lymph node. I am 56 and reasonably fit and well. In general I did not have any symptoms to speak off (still don’t) until the lump in my neck appeared at the beginning of June. I saw the dr after 14 days as the lump had not gone and he put in the referral. Based on the initial examination I was told there was no visual sign of oral cancer but to be on the safe side they got the Ultrasound and biopsy on the same day and an MRI a couple of days later. A couple of days prior to the MDT meeting I had a PET scan and dental checkup.The diagnosis is T1,N1,M0 and the suggested treatment is 6 weeks radiotherapy and up-to 2 chemo sessions which is due to start around the 21st August. What I don’t know at the moment is whether the cancer is hpv positive or hpv negative. In my case it could be either as I have only recently quit smoking.
Trying to get my head around this is a bit tricky but have decided to focus on sorting family and work matters out as well as trying to put on a few pounds in the next few weeks by increasing the protein and calorie intake.
Any advice as to questions I should be asking and anything that might help me prepare for what is about to happen would be much appreciated.
This is all a bit of a shock at the moment but after reading discussions on this forum there are some truly wonderful people on here with so much knowledge, thoughtfulness and compassion.
Thanks in advance
regards
T
Comments
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I know this will sound weird, however the diagnosis sounds good for what it is.... I personally was in the HPV category. If you have any questions please let us know. The 2 chemo sessions can vary greatly in potency and type. Off the cuff it sounds like lighter dose of chemo that will help make the radiation more effective. This forum has so much information so search around and ask questions! Good luck, you've got this!
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I also found out from the medical report that the diagnosis is p16 positive SCC of the left tonsil. I understand that this is a marker for HPV which, if I have understood things correctly, might make it more receptive/responsive to treatment. Hope I have understood that correctly looking round the forum.
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Yes, the p16+ is more responsive to treatment. My original diagnosis was Stage IV (due to the size and number of lymph nodes involved) but when the p16+ was confirmed my medical team told me I was Stage II. I have full faith you will come out of this on the other side NED (cancer free) but it isn't easy. I am sure others will have different versions but it seemed like right when I was at my physical and emotional breaking point, the next day got a little better and the next a little better and so on.
I wish you didn't have to go through this but you will look back on it and remark how lucky you really were to catch it soon and treat it. Good luck!
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Hello Montus, welcome to the forum. I see you have found it is HPV+ which responds much better to treatment to eradicate this evil disease. So one of the things you should be doing is gaining weight, eat, eat, eat, all you can handle unless you already have extra weight. Because you may find it difficult to eat for a while during treatment. Probably about halfway through radiation it may affect you depending on the area radiated and the strength. You may have soreness and trouble swallowing. Keep us posted as you progress and we can help with issues. Also, you will get thick saliva that you will need to spit out and keep clear and it is best to sleep in a recliner during this time as laying flat with the thick saliva gets in your throat and gags you. so sitting up or reclining is best. Also, you will need to use a salt and baking soda rinse as often as necessary to keep it cleared out. Rinse and spit as needed.
I am glad you were proactive on your teeth that is good and going forward you will have to be fussy about dental care as this treatment affects saliva usually in everyone.
Here is a website that may help and at the top is a category called "Navigating Cancer Care".
Also here is a site PDF that you can download with info and the menu is on the left and you may have to click on the + plus at the top of the page to increase the size of the print, again scroll menu on left.
Also here are some of the baking soda, and salt recipes you may want to mix in larger quantities.
Salt and Baking Soda Rinse Recipes
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.
Wishing You the Best
Take Care God Bless-Russ
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Thanks Russ for all the information. I will get it on the list to be ready. Your advice about eating I saw you give that to another gentleman from Poland on this site before I posted myself.. I have already taken that to heart and am stepping up the calorie in take. I am also making sure in still carry on with some regular but light exercise.. I am a keen golfer so the walk does me good. The night after my diagnosis I was due to play a chap in the last 16 of a seniors knockout competition.. I really was not sure what to do but did it anyway as I thought it would sort of take my mind off things.. it kind of did… anyway the only time I was up in the match was when I sunk my putt on the last. The quarter final is at the end of my first week of treatment which might or might not be a bit of an ask but my mate who is a Dr (neurosurgeon) said he would caddie for me which I thought was nice.
thanks again for the info and all the support from everyone..
will keep you posted and also look around other peoples experiences for good advice…
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For everyone.. thank you for all of the advice as it has been invaluable.
just to let you know I worked on sorting out what needed to be done, as well as got a bit fitter and a little fatter.. the last bit was hardly worth it considering I have tried to be an eating machine but I did manage just over a kilo.
As of today I am 2 days into my treatment.
On Monday a chemotherapy day lasting from 8am to 6.30pm as well as my first zapping session follow by my next zapping session today and more tomorrow and then etc etc until the end of September.
To sum up the chemo day it was a giant pissing contest that I came out marginally ahead on. My chemo team have been affectionately name the chemical brothers and sisters and the radiologists the atomic kittens, both teams are lovely and look after me really well.
it is very early days but so far the chemo is behaving and all is ok with the world. To help this along I set up a couple of WhatsApp support networks. Firstly one for my extremely good lady with people watching out for her and one for myself which is an eclectic bunch of people offering me support of a sort, which consist of a bunch of bag jokes and Micky taking that make me laugh , lifting my spirits and help me through the day and I trade back with daily reports with dubious humour.
All that is left to say is “the game is a foot” and thanks to your help I am in the best place I can be to “play said game”
I will post a bit more in later weeks
regards
T
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Just to give you and example of English humour and encouragement from yesterday left on the WhatsApp group by a scientist friend I have that knows a bit about chemo.. I quote “Good job T! Get some rest and if you s* ** yourself at any point, don’t worry, you can always boil wash your pants back to their former greyness”. Nice touch I thought and helped up my score in the great pissathon . Hope the humour works for you.
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So sorry to hear of your cancer. I too had hpv in my right tonsil. Had to have my tonsils removed at 54, which was no picnic. But luckily that’s where the tumor was. Only had radiation as a cleanup procedure. Wasn’t too bad until week 3 when loss of taste set in. You will get through this. I am 2 years out with no evidence of disease. Just keep fighting and before you know it, cancer will be in your mirror.
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My SCC P16+ also started in my left tonsil. I was diagnosed Nov 23, 2021. I completed 6 rounds of chemo and 30 radiation treatments on March 9, 2022. I am still not able to eat because my hyoid bone became dislocated from weakened muscles on the left side of my neck. I've lost over 60 pounds, I chose not to get the feeding tube. I have found drinking thin pudding gives me more calories than anything else. I have recently stopped losing 5 pounds a week! I've also had an oral yeast infection that I've got control of by oil pulling and then a hydrogen peroxide rinse. The swelling in my throat has been horrible and some days the pain has been more than I can tolerate. I recently started hyperbaric chamber treatments to help my throat heal and they have truly been AMAZING!! I HIGHLY recommend hyperbarics to regain your taste as well as heal any radiation burns inside or outside your throat and neck. My first treatment the sores inside my mouth were 80% gone and I could taste a lot more than nothing as it had been previously. It's been an exhausting learning experience. My Dr's were kinda lost with how to treat or help relieve radiation side effects I was having and I turned to hyperbaric medicine after a lot of research. When you are finished with radiation you might check in to hyperbaric treatments near you. I'm so grateful to the team at Idaho wound care as well as my Dr's at Huntsman cancer Institute for saving my life. I haven't got the cancer free prognosis yet, but I'm sure it's coming after the next PET scan.
I wish you all the best! It is a rough road but you will make it through!!
😊 Joy
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Hello Joy and welcome to the forum.
You have gone through some tough treatments and had more than your share of side effects, but we never know what exactly might happen going in. I must say I never heard of the hyoid bone becoming dislocated, in fact, I am not sure if I ever heard of it other than looking over a representation of the head and neck area showing the many different areas. I am glad for you that your weight has stabilized and you found a solution to your sore throat and mouth through hyperbaric. I have had HBOT in preparation for a tooth extraction. There are some side effects so just be on the watch for them but I think that is if you get a lot of treatments. It started affecting my eyesight a bit which is one of the known effects. Recovery from all this can be tough but you seem to have a very positive attitude in dealing with all this.
Wishing You the Best
Take Care God Bless-Russ
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Hi, my husband was diagnosed with cT2 N1 MO along with a few lymph nodes. He underwent 33 rounds of radiation and 7 of chemo finishing treatment April 5th. Healing from treatment was worse than the treatment he said. From our experience I would recommend mouth stretches as soon as you feel your jaw muscles tighten. Trismus or lock jaw is what begins to happen. Radiation changes the structure of the muscle cells and muscles never are the same. Do ask about this would be my recommendation and how you can help prevent it. Right now he is able to open his mouth at 25mm or two fingers together and this is at the end of the day when he's done his stretches.
Yes, get as many calories/fat as possible until you don't have a desire. We were on the KETO diet before he was diagnosed (almost humorous) and he had to work at eating all the things his body had worked so hard to give up. Towards the end of treatment that's when eating became difficult and the simple act of drinking water (we had to buy purified water). If they offer IV hydration take it. Supplements such a Duocal (powder) to add to smoothies and KateFarms nutrition drinks (amazon) were and continue to be key to his caloric intake.
You will get through this. Focusing on your family and only matters of importance is what is necessary. Continue to stay clear headed, positive, optimistic and surround yourself with good energy. Make sure you ask questions and then ask even more questions. There aren't any dumb questions. Take care of yourself and good luck.
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Russ,
I probably haven't been so positive through all of this but I'm getting myself where I need to be mentally and physically! The mental side is probably worse than the physical side, as I'm sure, with all you've been through, you know!!
Today I was talking to a very close friend that is battling brain cancer and we both agreed not all of the cancer journey is bad. It reminds us to be grateful for our blessings, reminds us of our priorities and what truly matters, teaches us to keep our loved ones closer than we ever have, basically shows us how to REALLY live!! I always try to learn from challenges and grow as much as I can throughout life and cancer has definitely been a great teacher!! It was hard for me to get passed the "I don't want to have this, I don't want to do this, I don't want radiation or chemo, I just don't want to go through this at all!!". Once I accepted that I was going through this and stopped feeling sorry for myself and powered through radiation and chemo I began to see the positives that had been realized through this journey! Although I have had a difficult recovery I am at peace with cancer and grateful for all I've learned and those I've met along the way! I still have my days of darkness but I have learned to have a sad day but don't live there! Once I accepted that nobody was going to rescue me I had to rescue myself I began to really fight for my life! When I went many weeks with no food at all I was very weak and had lost so much weight I truly had to fight to get back up. I've finally done that I eat at least a few bites of solid food every day even though I fight to swallow it eventually goes down my weight slowly goes up and I am one step closer to getting all this behind me and I am a stronger, better, wiser person than when this all began!
Never EVER give up!!
Joy
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Dear Joy, What A wonderful sharing overview of your cancer journey. You show great knowledge and wisdom and tell a lot of what you have learned through this. And you have found like many of us that the cancer journey can also carry and bring many blessings. Strangely some have said this is the best thing that ever happened to them. Sort of a wake up call that changed their life. I really like your write-up of how you want and got yourself past the denial. Where you didn't want this you didn't want to do this. Your description is where we've all been and sums it up so beautifully. Keep Fighting and persevering joy you will get to where you want to be you will reach your goals I am sure.
Take care God-bless Russ
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hi all
Thought I would let you know I rang the bell on my treatment today.. In the end I have come out ok so far.. in summary at the end of week 3 I lost my sense of taste, the beginning of week 4 I had the second round of chemo which knocked me sideways to the point that for about 5 days all I could do was sip water at best. Fortunately that passed and then started the fight back after loosing a load of weight. Stabilised the weight loss and the search began for what I could eat, anyway I know have a few things on the menu and also drink lots of milk. Neck and throat are very sore but have kept the exercises up etc.. pain relief am managing with the normal paracetamol and ibuprofen, using two different strengths of CBD oil on the side and have morphine as a back up…
anyway… ding dong people.. the treatment was no joyride but stayed positive with a happy heart and have got through it.. I can now hope that it has done that trick and I can focus on the next stage of the healing process.
thanks all for your help..
kind regards
T
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Montus so glad to hear, that is such a great milestone to reach. In fact the best. I am so glad for you. It sounds like you had challenges along the way but met each one head-on and conquered them. You do have a very positive outlook and that was probably a huge help to you. So now you can continue to recover and take a break from appointments for a while.
Wishing You the Best
Take Care God Bless-Russ
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