Just diagnosed - No idea what to expect
So... I found a lump on my neck in March. I'm male, in my mid 40's, in good physical health, don't drink nor smoke. I had just recently had a minor surgergy to my chin and my primary care physican and myself figured the swollen lymph-node was simply a reaction to the minor surgery. After a couple of rounds of steroids, etc. and the lymph-node not going down, he had me get an ultrasound. That showed a small mass or enlarged lymph-node (doctor wasn't sure), so he referred me to an ENT. The ENT didn't seem overly concerned at first. Never looked at my ultrasound, never scoped me, just felt around. On the third visit he said they needed to remove the lymph-node and check it out. He said they could do a needle biopsy but didn't see the point (no pun intended). I decided to get a second opinion and went to an oncologist. The oncologist was very friendly, was concerned and told me to pick another ENT. So, I picked a different ENT and was very happy with him. He immedatiely looked at the ultrasound, scoped me and sent me out for a CT scan. When the results came back he went over the scans with me and showed me that I had two enlarged lymph-nodes; one at 2.7 and one just below 2. He recommended a needle biopsy right then. The next day we got the results; squamous cell carcinoma. He told me when he scoped me he saw something very small near the back of my tongue, but since I didn't drink or smoke he wasn't all that concerned at the time. Now he's pretty certain that's where the cancer cells are coming from.
My ENT made a referral to OU's Stephenson Cancer Center. They called me the next day and have me scheduled for my first visit on Monday.
I guess at this point I'm just still in shock. I was warned by my doctor not to start Googling the condition as it was too early on and I'd read nothing but nightmarish scenarios.
That said, I'd really like to know what I should expect; What are traditional treatments and how long do they last and how bad are they on your body? Is losing my tongue and voice box a very real reality? How curable is this type of cancer?
Thanks in advance.
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Just diagnosed
I'm sorry you find yourself on this site but rest assured that many have gone before you and have paved the way for the treatment for the rest of us. I don't know if your doctor told you if the cancer was HPV based, and at this point you actually hope it is because it is so responsive to the chemo and radiation. the treatment is rough but very doable. I just had my 4 year tests and scans last week and all clean. I have a few little side effects from the cancer, as well as the treatment, but really more nuisance stuff as opposed to major life style impact.
It seems like most treatments involve radiation and chem. The radiation seems pretty standard at 32 -35 treatments, and there are a couple of options on chemo. Some seem to get cisplatin and other erbitux (I had erbitux which had much less side effects). My chemo wasn't that bad, the biggest side effect being acne/body rash but that went away before treatment was completed. Everyone deals/reacts with the radiation and chemo differently but for most of us, radiation was pretty rough. You may or may not need a feeding tube (i had one and still lost 40 pounds with it and I am 6'2" and weighed only 200 pounds to start so i wasn't heavy. I was glad i had the tube).
Just try and relax as your treatment plan develops. go to the dentist to get checked out and get a flouride tray as the radiation is really tough on the salavia glands, and they are key to teeth. I still use the flouride tray every night and it only takes about 10 minutes. there will be other things you will need to do and this site has a wealth of informaton, and many good people to help you as you go through your journey.
There are many on this site who had exactly what you had and are leading ful lives today and the cancer is gone. You will most likely have a rough few months as you go through treatment but knowing your chance of cure is very high gives you hope and the ability to deal with end knowing there is a finish point that you should be able to put this behind you.
Good luck,
Keith
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Stephenson
We just completed treatment at Stephenson for BOT SCC Stage 4. My husband is 8 weeks post treatment. Let me say that you will be getting great care at Stephenson. They will give you all kinds of information on your first visit to answer the questions you have. I know it is hard, so hard, to wait but honestly until you know more about your stage, HPV status and location of your cancer some of your questions can't be answered. That info will impact your treatment plan and prognosis. Just know you are in good hands at Stephenson. You can get all the treatment you will need there. Do you have a local support system to help you during your course of treatment? Do you know if Stephenson is in network with your insurance? That's something you can be doing now, is thinking about your support system as you will need help along the way. I would strongly encourage you to have someone go with you on Monday. I took a pen and notepad and scribed exactly, and I mean exactly, what every single person we saw said. Later we had to refer to those notes many times. My husband simply did not hear much of what was said that day and having it written down convinced him it was really said that day. He was just in a fog. Also, just to prepare you, we had had an attempted biopsy before our first visit. Since that was already done and we lived hours away, we saw the medical oncologist, surgeon and radiation oncologist all on that day. We even had his radiaition mask made that day. We had no idea that would all happen. The first visit is different for everybody depending on what has already been done that works for Stephenson. You will leave that day knowing your next step or steps. I could tell you what our treatment plan was but honestly it might not be that helpful as your situation may be very different. I want to say that every single person we encountered on the treatment team there was kind, caring and competent. They have an amazing speech path and the dieticians were also beyond helpful. You will likely have some decisions to make after your visit. Again, identifying someone to help you in thinking through decisions would be very hepful. I am sorry that you are on this journey but you can contact me anytime if you have questions about the Center. My husband read nothing. He was not in a mindset to do that as he was dealing with other life events not related to the cancer. Yes, the rest of your life continues on despite your diagnosis, then in someways it seems like your life stops and nothing happens except cancer. I read everything and for me it was helpful. I think how much information is helpful to you is personal. Yes, there is scary info out there but there is also a lot of helpful info. Do what seems right for you. The Oral Cancer Foundation has a moderated forum discussion board that has been extremely helpful for me. No matter what your treatment plan is hydration and nutrition are critical during all treatments. Again let me know, if we can help you.
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Sorry to hear of your
Sorry to hear of your diagnosis. I remember those days well when my husband received his cancer diagnosis, ssc of the piriform sinus with 2 lymph nodes affected. T1N2bM0. His treatment included chemo for 6 weeks and the radiation and chemo for 10 weeks. It was difficult physically for several months
but 5 years later life is good with very few remaining side effects. At the University of Chicago, where he received treatent, surgery was plan b if the chemo and radiation didn't do the job.
This site is filled with useful, up to date information and help in dealing with the side effects of treatment. The people are wonderfully supportive and will be there for you when you need help, ideas or questions answered.
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Second What Was Said
Getting an appointment with a dentist is important. It needs to be someone who has a clue about HNC. Also, they will set you up through the Center for a hearing screening if it is required for your treatment plan. We got ours at home because of the time crunch. Also, just a heads up that like most comprehensive treatment centers, they prefer/require you to use their imaging equipment and staff for some of the DI. We ended up wishing we had done absolutely everything there, lab, imaging and all treatment. We did do some things at home and it worked but added a layer of complexity to the process.
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Thanks everyone for the
Thanks everyone for the responses.
So far, all that's been done (through my ENT) was a scoping (saw something near the base of my tongue - but so small he initially didn't pay it much attention), a needle biopsy which came back positive and two confirmd swollen lymph-nodes near the place where he saw the spot on my tongue.
Soonermom; Right now they've scheduled me with Dr. Cannon. They said they were just giving me the first available doctor. Ever encounter her? I have a dentist I've gone to for years. Do I just call his office and see if he has any experience with this?
I don't know much about HPV but my doctor assumed that was the cause - since I don't drink or smoke. I assume Stephenson will conduct a test?
I'm hoping the fact I'm young-ish and in very good health that I will come through this okay in the end.
Still just very scary and my wife is still just trying to take it all in.
Thank again.0 -
Cancer Center
Dr. Cannon is great. At Stephenson, even if you do not have surgery, it is the surgeon that you see on the first visit and the surgeon follows you for 5 years, even if you have no surgery. If you are not an immediate candidate for surgery but need other therapy they will have you see those members of the team as soon as they can arrange it. For us, my husband was not a surgical candidate so they called up the MO and RO who were in clinic that day and that became our team. Honestly, you cannot go wrong with whomever they assign to you. They try to be efficient and have you see the first available person. Dr. Cannon is very direct which we like. We are acquainted with some of the staff at OU and I will tell you they all can do what you need. Dr. Cannon is respected. She has also had a resident working with her and we liked him very much as well. We had Dr. Razak for our MO and Dr. Bogardus for our RO. We were sort of on the fast track because we had already had several things done at home for staging and diagnosis before we were referred to Stephenson. You may have different steps to go through, I don't know. We did not get in to Dr. Cannon as quickly as you are. Once we began therapy, which for us we had chemo and rad, we did not see Dr. Cannon again until one month after treatment ended. Now we see her for most all of our visits. If you need radiation, the team that delivers those treatments were also outstanding. Yes, I would just ask your dentist if he feels comfortable seeing a patient with HNC. As someone else said there is a very good chance you will need special toothpaste and trays in the the future.
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Welcome
OKC,
Welcome to the H&N forum, sorry that you are here.
It looks like you already got a lot of good advice. You will learn a lot fast, like we all did. You might give the superthread a skim through, it has some good info.
I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux). I am now 5+ years post and things are good. Get yourself all geared up to travel this road and it will all be doable.
Good luck.
Matt
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SimilarOKCnative said:Thanks everyone for the
Thanks everyone for the responses.
So far, all that's been done (through my ENT) was a scoping (saw something near the base of my tongue - but so small he initially didn't pay it much attention), a needle biopsy which came back positive and two confirmd swollen lymph-nodes near the place where he saw the spot on my tongue.
Soonermom; Right now they've scheduled me with Dr. Cannon. They said they were just giving me the first available doctor. Ever encounter her? I have a dentist I've gone to for years. Do I just call his office and see if he has any experience with this?
I don't know much about HPV but my doctor assumed that was the cause - since I don't drink or smoke. I assume Stephenson will conduct a test?
I'm hoping the fact I'm young-ish and in very good health that I will come through this okay in the end.
Still just very scary and my wife is still just trying to take it all in.
Thank again.Hi OKC, first off...sorry about your situation. It's hard and will get harder. I have a similar story...age 41 (42 now), random lump in neck, non-smoker, casual drinker. I was diagnosed with HPV+ SCC (T1N2bM0)...had a neck dissection for the lymph nodes, robotic surgery to get the primary on the back of my tongue and 30 radiation treatments...completed on April 21st, 2017.
Over the next month or two your path will become more clear. Might have surgery, might not. Might have chemo, might not... Lots of expertise on this forum and lots of people willing to share war stories.
Yes, the pathologists will test for HPV. It may or may not influence your treatment but has been shown to make a significant impact on the ability to cure it. HPV+ is a good thing (in the crappiest of crappy situations).
Fact is, no two people go through it the same way... Some people can't tolerate the treatments, some have no problems... But, yes, you are young and it will benefit you in the end.
Happy to share stories as you move forward.
Brandon
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Oh, and to answer in more specifics your questions re: radiationjohnsonbl said:Similar
Hi OKC, first off...sorry about your situation. It's hard and will get harder. I have a similar story...age 41 (42 now), random lump in neck, non-smoker, casual drinker. I was diagnosed with HPV+ SCC (T1N2bM0)...had a neck dissection for the lymph nodes, robotic surgery to get the primary on the back of my tongue and 30 radiation treatments...completed on April 21st, 2017.
Over the next month or two your path will become more clear. Might have surgery, might not. Might have chemo, might not... Lots of expertise on this forum and lots of people willing to share war stories.
Yes, the pathologists will test for HPV. It may or may not influence your treatment but has been shown to make a significant impact on the ability to cure it. HPV+ is a good thing (in the crappiest of crappy situations).
Fact is, no two people go through it the same way... Some people can't tolerate the treatments, some have no problems... But, yes, you are young and it will benefit you in the end.
Happy to share stories as you move forward.
Brandon
They take 15 minutes. You don't feel a thing. Likely you'll get between 30 and 35 treatments. Can irritate your skin on your neck and could cause mucositis (google it if you wish). It's painful. Some people need help with nourishment because of the throat pain. I didn't. I ate a regular diet all the way through (sans crunchy things like chips and apples). I worked all through radiation. Chemo + radiation is a little harsher it seems.
I would be a little more tired by the end of the day but was able to do ok. I missed like 2 days of work..one for some tummy trouble and the other because I just wanted a day off !
If the primary is on the lingual tonsil (the back part of your tongue) you're at little risk of damaging your voice. Seems to me that you've caught it early and that you have a good team available to you. That's important.
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We know how you feel. It is a
We know how you feel. It is a tough place to be in, but you will make it out alright in the end. My husband was almost 41, non smoker, non drinker, in great health, when he was diagnosed with stage 1 , non HPV, tongue cancer in Oct. 2015. He had a swollen lymph node on his right side and a sore on his tongue that would not go away. The first ENT though he had an infection and gave him antibiotics, which did not work, and thought nothing of the sore. His dentist eventually told him to go to an oral surgeon who did a biopsy of the sore, and it came back SCC. In his case, the node ended up being reactive to the SCC, and not malignant, that is why he was stage 1 only. But still real scary.
We have young kids, ages 7, 11, and 13 now, and we all need their dad. My husband had surgery to remove the tongue lesion and a neck dissection. Followed by radiation and chemo (cisplatin). That was over the holidays in 2015 and into January 2016. He contined to work in his office, and did great with the treatment. It was tough though, no lie, but we did get through it. Your young age and good health will help you with this. My husband also had hydration sessions each week which helped, and he did get a PEG (feeding tube) at the start of treatment, which he did end up needing. But my 6 weeks after treatment was over, the tube was removed. And he was back to eating by mouth.
In any case, we are 21 months out from treatment, and life is normal. My husband is clear of cancer. He eats everything, he works full time, we travel, we live life. And it has been this way for at least a year. It is just a blip in the road of our lives, and hopefully it will be for you too! Prayers and best wishes.
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Sorry you have to go through
Sorry you have to go through this. Its tough but you WILL make it! You must keep a positive attitude. Lots of good advice here. The only thing that I can add that may help some is EAT! Try to eat as healthy as you can prior to treatment. Protein and lots of it. I lost over 100 pounds my first time around. I am getting ready to face the beast all over once again and my Doctor told me to eat as much protein as possible for the long journey ahead. When you start your treatments also you will not feel like eating but nutrition is a must if you want to get through this. Force yourself to eat! Things will get better. My hope and prayers go out to you and your family.
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Good Luck!
you have already received great advice. My husband will have his last treatment tomorrow! Same scenario... non smoker non drinker and discovered a random lump on his neck that didn't go away. Ended up with HPV+ SCC with an unknown primary. 7 weeks of chemo (started with cisplatin and switched to carboplatin due to hearing concerns). Tomorrow is number 36 of 36 rads. He did not have a feeding tube and is still eating regular food . (He does avoid super spicy and very hard foods like crusty bread). I want you to know that some people get through relativelu easily and others have a very hard time. It all depends on how you tolerate the treatment. Magic mothwash has been a lifesaver and he is on 5ml oxycodone every 4 hours. You will get through this!
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ChickletteChicklette said:Good Luck!
you have already received great advice. My husband will have his last treatment tomorrow! Same scenario... non smoker non drinker and discovered a random lump on his neck that didn't go away. Ended up with HPV+ SCC with an unknown primary. 7 weeks of chemo (started with cisplatin and switched to carboplatin due to hearing concerns). Tomorrow is number 36 of 36 rads. He did not have a feeding tube and is still eating regular food . (He does avoid super spicy and very hard foods like crusty bread). I want you to know that some people get through relativelu easily and others have a very hard time. It all depends on how you tolerate the treatment. Magic mothwash has been a lifesaver and he is on 5ml oxycodone every 4 hours. You will get through this!
So excited you are finishing treatment tomorrow!
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You can do it!
Good luck OKCnative! You can do it. I just found this forum today. Such great responses and people!
You're smart for checking here for what to expect and start your support network. I was in such shock about my diagnosis and just wanted to get on with treatments that I didn't think to find out any information on-line. Luckily I took the advice of my oncologist and got g-tube and IV port implants. A friend of mine went through all this 5 years ago so I had a fantastic resource to help me out. He recommended getting the g-tube and IV port implanted ahead of time. Both made it much easier in some respects to get through this far, especially when I couldn't eat any more and also when I needed hydration between chemo sessions. Each has their anoyances, but it was better for me than having to get them implanted during treatments. I had them removed in mid May.
My Oncologist said the treatments are "wickedly intense" and it would be a rough 6 months, but the radiation is very effective and the cancer very curable. He wasn't BSing and it helped me mentally get straight.
I finished 35 rads and only 2 rounds chemo April 7, 2017. Cisplatin can be a bugger. I'm completely deaf in my leaf ear, and the 2 rounds of Cisplatin caused damage to the hearing in my good ear as well as increased Tinitus. I also lost 50lbs in the 7 weeks of treatments. I'm very thankful I don't need surgery at this point. I had 2 lymphnodes with cancer on the left side of my neck and one on the right side on the Carotoid. Biopsy confirmed HPV. Main tumor (small) was found through PET scan on base of tongue. I go in July 10 for another PET scan and find out results from my ENT and Oncologist on July 11. I'm praying for the best, but I hate not knowing. The hardest part now is no taste and no saliva. I really miss the taste of food and hope both taste and saliva return. Right now I think that is the hardest part to deal with. I loved to eat and cook and am trying to figure out this part of recovery.
The ray of sunshine and hope that helps keep me positive is my friend is 5 years cancer free! Since going through all this I've learned about many more who have endured and are cancer free. Many for 15+ years. It sounds like treatment options have progressed over the past 20 years and they don't take the drastic approach of surgery unless absolutely necessary.
I wish you the best of luck. Please reach out to me if you need to talk.
Mark
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Update - First Cancer Center Visit
Thanks for all the words of encouragement, personal disclosures and advice.
Wife and I met with the cancer team at Stephenson Cancer Center most of the day yesterday. Really like my first impression of the center and Dr. Cannon. She was very professional, polite, no-nonsense and clear with her plan so far. She re-scoped me and found the spot the ENT was suspicious of. It's a relatively small enlargement at the base of my tongue - no discolorization, but some out of place blood vessels. She has me set up for a PET scan in the coming days to aid in her confirmation and to see if the cancer is anywhere other than my nodes. She is also having me do a swallowing test and then will recommend if I should be fitted with a feeding tube now or "wait and see." She is also planning a tongue biopsy and a hearing test. My original needle stick biopsy tissue has also been sent for HPV testing. She wasn't willing to speculate at this point but felt I was a very good candidate for a successful outcome (found relatively early, young-ish, in very good health, no drinking or smoking).
The radiation Dr was more willing to speculate. He felt there was no reason to even consider neck dissection until all treatment was finished. He said in most of his patients the nodes simply shrank down and were cancer free. He said only if the nodes resist shrinking would he remove them. He also felt the cancer was caught in an early enough stage that surgery was not very likely at this point. The radiation Dr. felt my biggest obstacle and lifelong symptoms would be from the radiation itself. I hope he is correct and not being to pie in the sky.
At this point we are hesitantly hopeful.0
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