ssc, hpv in tonsils on both sides and eblarged lymph node

steven59
steven59 Member Posts: 100 Member
edited November 2023 in Head and Neck Cancer #1

While the biopsy only showed ssC in 1 the right tonsil and left lymph node my dr warned me it was uncommon and cancer was probably in both, he was right. The biopsy also showed negative for HPV which the Dr also said was unlikely, he was right again. I had the tonsils and lymph nodes on both sides removed 10/10/22 and was more than a little surprised at the level of discomfort everywhere that wasn't numb.

Today I got my mask fitted for radiation/proton treatments and at 63 years old had my first panic attack! the first 6 minutes were ok because the techs were tweaking, marking and generally distracting me from the tension. Before they started they told me I could stop any time, but we would have to start over. I gutted out the last 4 minutes while the mask dried and after a short walk and bathroom break could finish the last 2 minutes.

I don't know how I'm going to get thru the 30 minute treatments tho' There's still some discomfort kin my neck and the mask puts more pressure there than I can tolerate. These treatments are necessary and I want to cooperate in my recovery, but I don't know how i'm going to handle this and when the side effects set in isn't my throat just going to become more sensitive?

Thanks for any replies Steve

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Comments

  • steven59
    steven59 Member Posts: 100 Member

    Everything happens so fast. My daughter asks me to get the swollen lymph node checked early september my gp orders a ct and biopsy, the biopsy schedules first and i'm diagnosed with scc in my lymph node while the following ct finds more cancer in the opposite side tonsil and something going on in my lungs. A month later i'm having a surgery to remove tonsils and lymph nodes on both sides..I felt invincible til the day my mom was diagnosed 3 years ago. This is not a club I can imagine any of us wanting to be in, yet here we are.

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    Yes, "here we are"... unfortunately, welcome to the club. Having both sides affected by surgery and treatment will definitely seem like a tall mountain to climb; however, a positive attitude, and staying on top of the side-effects as they happen (or even before they happen), should help you get through the tougher times. For me, the mask fitting was probably the worst part of the mask experience. The sensation of that pressure directly on the face and throat was overwhelming.. along with the need to itch both my nostrils and eyelids about 4 minutes into the fitting... it really does test people's ability to win the mind-over-matter battle being waged. I started to panic a bit.. and experienced shortness of breath. At about the 7 minute mark (which felt like 30 minutes), I almost told them to let me up; however, I new I would have to start over again... so, I stuck it out. Luckily, I calmed myself with lots of prayers and deep-breathing exercises. That was the worst part for me. After that, the treatment process was easier to endure.. partly because they don't have the mask pressed down on your neck and face as much as during the fitting process. I got so good at calming myself down and blocking out the negative thoughts. One time, the radiation machine went down for a "technical issue", and they asked me if I wanted to get up and sit in a chair while waiting. I was so in my "zone" that I opted to just lay there and wait for it to come back on line. It ended being around an hour for that treatment session.. and, it didn't really bother me at all.

    Because you had surgery on both sides of your neck, I think one thing you will definitely want to stay on top of is the lymph drainage as treatment begins. Make sure to take advantage of the therapists assigned to you to learn proper lymphatic draining massages (also good videos on Youtube).. because, the fact that you had both sides affected by surgery will possibly create lymphedema on both sides. The one thing I did, which I recommend, was use a device called an ANMA to do the massages vs using my hands. Using my hands became tiresome for me.. because, I found myself doing the massages many times a day, every day, to stay on top of the lymph swelling in the face, jaw and neck areas. Once you can re-train your lymph drainage, the need to do the massages is reduced. Don't know exactly how long that took.. just realized at one point that I didn't need to do it as much as I did the previous week. In order for the ANMA to slide effortlessly over your skin, you will need a good oil/lotion to apply all over before doing the massage (I found a lymph-flow massage oil on Amazon.. there are tons of options).

    Good luck with treatments! Keep us updated as you proceed.

  • steven59
    steven59 Member Posts: 100 Member

    Thanks for reinforcing the importance of pt for lymphodemia. The medical staff has been thorough and I started doing mouth and neck exercises a little over a week ago, but wasn't really as diligent as I can be. After the fitting I hammered google and it appears that we do get used to the mask gradually. 30 minute sessions right now seems impossible so I'm going to ask for meds to help me get started. Thanks for looking in on me. Steve

  • steven59
    steven59 Member Posts: 100 Member

    My doctor submitted for proton radiation telling me that many insurance co's deny it. My Ins approved it but yesterday my Dr called and told me the panel changed their minds and i'm getting the photon radiagtion instead! I'm frustrated because all I read was how proton rad has as much as half the side effects. When getting fitted for my mask the tech told me the proton building was working overtime with no wiggle room for scheduling. Am I paranoid in thinking the decision for the dr dropping proton is to get me in on schedule? I have been so angry since the phone call.


    I asked him why and he deflected to the surgeon, said because tonsils on both sides had tumors I needed to trust him that this is the best path. My consult a month ago this Radiologist and panel of Dr's knew I had cancer on both sides when they applied for proton rad so , What's changed except their schedule. I'm really, really stumped and it's coming out in anger\.

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    I think that I was lucky in that I had a radiation oncologist at a university hospital who was also one of the senior professors as well... and he had an open mind. Several years prior to me entering the building, that same doctor had seriously considered leaving the teaching university to partner with the proton radiation place... but did not. Initially, he thought he might only treat one side.. at which point, he said, I was a prime candidate for proton radiation. However, since he ultimately decided to treat both sides (because of my nodal extension in one lymph node). He also gave his honest opinion that it was a coin toss between proton and IMRT if both sides are getting treated. When I asked him what he would do if he were in my place, he picked his staff to do IMRT.. because he knew his staff was really good at what they do. The radiation oncologist at the Proton place was a graduate of that same university medical school as the IMRT doctor.. and knew where those doctors were coming from in recommending IMRT (because the university hospital didn't have a proton machine to offer as an option). The proton doctor also told me that it was basically a "toss-up"; however, he 100% told me he would take the proton route if he was in my shoes. Not because of his staff.. but, because, as he put it, the proton route is much more "elegant". He said the track record for proton is one of minimizing collateral damage (i.e. saliva glands, etc.).

    Choosing between the two treatments caused me a great deal of anxiety... which it shouldn't. If you ask a Ford salesman what make of car you should buy... he will say a Ford. I just happened to have a Ford salesman who said that if I didn't want a Ford, I should buy a Toyota... and that is a rare thing.

    Ultimately, both doctors were telling me it was essentially a "toss up", and that the other teams were very competent. So, why not pick the one you feel the most confidence in? In my mind, from all the research I had done, I really wanted to go the proton route. Then, the IMRT doctor really presented a compelling case for his route by emphasizing how awesome his team was. Ultimately, my thinking was that if I went IMRT, and had serious side-effects, I would always regret my decision not to go the proton route.

    My IMRT oncologist was really a great doctor. I called him probably 4-5 different times to ask questions and clarify things. He spoke to me very candidly.. and I really appreciated it. I really didn't know which route I was going to go until the absolute very last minute (although, I picked the route I wanted to go in the first place). If your IMRT doctor suggests the only option his/her facility provides... well, I think it is because he/she can't honestly recommend a treatment team with which he/she is not familiar. If you were at a place that offered both IMRT and Proton, your experience might be different.

    The decision is up to you. Don't be angry.... Pray on it! Pray on it! Pray on it!. Make your decision and be happy with it (and don't look back). When I made the final decision, it was such a relief! To get there.... I asked lots of questions, did lots of research, and made informed choices for all of my procedures... and that is all I could do. Also, my proton radiation place did a great job sharing schedules and scan results with the university ENT / chemo oncologist.

  • steven59
    steven59 Member Posts: 100 Member

    Thank you so much for sharing. This Dr that said he would write a convincing letter to my ins for proton for its very benefits is now asking me to trust him. I'm having trust issues because the only information that's changed since the post surgery consultation is the tech that fit my mask told me the proton building was working overtime trying to keep up. I'll try to talk to to my surgeon and get some facts I can swallow. If I have an option it'll be proton specifically for the reduced side effects. Thanks again.

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member

    Steven, LuvnTN is very smart and has a good story he related about his treatment and what guided his decisions and it should help you possibly with your situation. I hope you get your trust issues with your surgeon worked out and get the treatment plan you can be comfortable and confident with and move forward. If absolutely necessary, get a second opinion if you don't feel comfortable with your treatment plan. And like he said Pray on it! Pray on it! Pray on it! There is power in prayer.

    Take Care God Bless-Russ

  • steven59
    steven59 Member Posts: 100 Member

    So my radiologist did admit the proton building is backed up 4-5 weeks and that it would be better for me to start with IMRT, he also has confidence that he can avoid the tongue and further damage to my saliva glands. He said the panel recommended starting with IMRY was better than waiting the time it took for a slot in the proton bldg to open. He also said the proton machine couldn't do the range necessary to get my whole throat. I Started IMRT tuesday the 13th

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member

    Very good Steven and thank you for the update. Glad for you that your radiologist is watching your case closely and did not want to keep waiting to start treatment. IMRT is another tool in the shed that they use and it sounds like this combination will work well to eradicate your cancer. They can tailor their radiation plan to give less radiation in areas they want to protect so hopefully your tongue and saliva glands can be mostly spared. That means a lot in the coming years. How is treatment going, apparently you have been able to tolerate the mask and the IMRT treatment? Are you also getting any chemotherapy with radiation or just radiation? You are on your way moving forward in the process to be cancer free.

    Wishing You the Best

    Take care, God Bless-Russ


  • steven59
    steven59 Member Posts: 100 Member

    Thank you for your post and well wishes. I opted for surgery and radiation, time will tell and if the cancer doesn't return I don't have chemo on my schedule. Dr prescribed ativan and I bring a SKLZ hand grip that helps me focus on grip exercises when the mask starts to stress me out.

  • steven59
    steven59 Member Posts: 100 Member
    edited December 2022 #12

    2 weeks down, 9 treatments of imrt/igrt and therapy is becoming a bit of a struggle. Dr prescribed lidocaine and my wife found a spray bottle small enough I can angle towards the tender parts of my throat and get some relief. My mom had brain radiation and never complained so I thought this was going to be the easy part, yikes. I have a buddy that went through 60 treatments

    On a lighter note doing 20 minutes or so of cardio is helping with saliva, while my mouth is very dry now, half from surgery and now from radiation after exercise I get a nice half hour break from the dry mouth.

  • JohnVon
    JohnVon Member Posts: 25 Member

    Steven I also had to go through the back and forth with my doctor with Proton vs Photon. We decided to do both starting with Photon. I'm 2 weeks into radiation and my mask has become so excruciatingly tight on my throat I can't bare it anymore. My throat is already very sore. I've read that the masks are supposed to be tight but not cause pain. What is your experience with your mask?

  • steven59
    steven59 Member Posts: 100 Member

    The mask is tight, but not painful around my throat yet. During my radiation consult a nurse gave me a tube of lotion and recommended eucerin lotion and unscented soft soap. The oral therapy is getting to painful to do because of the soreness around my tongue and the back of my throat is starting to burn.

    I've seen modified masks and I wonder if they would trim yours for you after you tell them it's getting too painful. The lidocaine really helps and I'd be done already without it. Let me know if you get any relief

  • steven59
    steven59 Member Posts: 100 Member

    Today finished up the 3rd week and there was a day that plaster/clay pillow they made me wasn't quite right under my head and I was in more discomfort than usual. My Dr prescribed me some pain killers upon request today along with something he calls magic mouthwash. its got a bunch of lidocaine in it so i'm to stop using the spray. If it helps me do the therapy i'm all in.

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member

    Steven, you are handling this well and I am glad your doc provides some painkillers and is actively working with you to get you through this treatment. One day at a time and soon you will be there. Please let us know what you are dealing with as you go such as thickening saliva from the radiation or other effects and possibly we can offer some insight or suggestions to deal with whatever you are facing.

    Forward

    Take care, God Bless-Russ


  • steven59
    steven59 Member Posts: 100 Member

    I lost half my saliva from surgery and most of the rest within 2 weeks of radiation. I do find it interesting that I'm the only person I see in the waiting room carrying a water bottle? While reading about side effects I found a study that claims 50 yg's? is as effective at treating cancer as 60 yg so I'm going to ask my dr if he can turn back the dial a couple clicks . I'll show him the thread on this forum

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member

    Steven, sorry you have lost a bunch of your saliva-making ability but it is part and parcel of this H&N cancer experience. I too like many on here either need a coffee and or water or something to sip to keep our mouth moist. Another thing I do is chew gum because it helps stimulate saliva. Also, you can use Xylimelts which adhere to your tooth and help with saliva issues. When choosing gum read the ingredients and the closer Xylitol is listed to the beginning of ingredients the more Xylitol it has in it. Also, choose sugarless gum. Xylitol increases saliva flow so more is better for us dry-mouth folks. If the gum has no Xylitol in it there is no saliva-stimulating benefit.

    Like any other sweetener, xylitol increases salivary flow which helps combat dry mouth. As seen above, lack of saliva is the reason your mouth gets dry. Increased salivary flow also promotes mineralization that is much-needed for strong and healthy teeth and gums[v].

    Steven once through treatment and on the other side you may experience some return of saliva. Some have noticed a return of saliva in varying degrees. It seems we are all different in that respect so time will tell how much you get back.

    Take care, God Bless-Russ

  • steven59
    steven59 Member Posts: 100 Member

    why does everything I drink taste like castor oil? Even water is difficult to drink because of the aftertaste.

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member
    edited January 2023 #20

    Steven your poor taste is due to the radiation. Eventually, everything will get to the point of tasting odd to bad to lousy and to no taste at all which is an odd experience itself and all this is a common occurrence in H&N radiation treatment. With no taste, I liken it to eating cardboard. It is very hard to eat when you have no taste. You literally have to force yourself to just eat the amount of food you need calorie-wise. Wishing you the best, hang strong. Your taste will slowly come back sometime post-treatment usually starting differently for most people but say maybe 3-6 weeks post-treatment.

    Take Care God Bless-Russ

  • MarieO
    MarieO Member Posts: 41 Member

    Steven, I am following your journey as my husband was just diagnosed with Cancer on his left tonsil. HPV Positive P16. He will be having radiation treatments for 7 weeks and we will find out on Wednesday if Chemo will be included. Im reading your posts because it seems like my husband will be right behind you. This has all been quite overwhelming.

    He was diagnosed 11/4 but there has been a lot of change of regarding treatment. He was supposed to have surgery and radiation. But the Surgeon wanted him to be off his Plavix for 30 days and cardiologist wouldnt approve that. So no surgery and back to radiation and possible chemo.

    I appreciate people being so open about their treatments, side effects and tips.

    Good thoughts to you and everyone else going through their own trials.