Just diagnosed
Hi, my name is Brian. I'm 45 and was just diagnosed with cancer last week. I had a small lump in my neck and they found "fragments of squamous cell carcinoma." The ENT doctor informed me this is not the source...I have a PET scan Thursday. To say I'm scared, anxious and nervous is an understatement! I don't smoke or drink so this diagnosis came from no where. I have no symptoms at all! I'm not losing weight, I'm not in any pain and my appetite has never been better. Yet, with the diagnosis I'm now afraid i have a death sentence. This scares me because I have a 12 year old daughter whom is my world. Has anyone out there had this type of diagnosis? Am I worrying too much? The doctor ensures me I'll be just fine but those words have not made me feel any better. Any answers from anybody on here woukd be appreciated. Thanks:)
Comments
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Proud,
I had the same thing, and it can be very scary.
My primary source NPC (Nasopharyngeal - left nasal passage).
It's impossible to do, but try to stay calm. You will find out the source and may need some treatment. But, all of the people on here are proof that no matter what happens - we're all survivors.
Keep us up on your situation, and the great people on here will help you through whatever comes your way.
I wish you the best possible news and ultimate outcome!
MG
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Glad You Found Us
Proud,
Although I am glad you found us, I am sorry you are here to start with. As MG mentioned, try to stay calm and please stay away from Dr. Google. A lot of the information out there is out dated or has bad information. Your Doctors will narrow everything down for you. As mentioned, there are a lot of survivors here willing to answer your questions and offer suggestions down the road, all you have to do is post them.
Like you, I felt fine but one day I found a small bump under my chin. It didn't go away after 2 weeks so I went to my Family Doctor and the rest is history. I am now a 16 year survivor of Base of Tongue cancer. Please keep us updated.
My Best to You and Everyone Here
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I just recently finished my
I just recently finished my treatments and am in the recovery phase. I had a lump on the left side of my neck. I had been showing some symptoms for some time before the lump appeared but my Dr couldn't figure out what was up with me. Looking in all the wrong places. Finally I had a serious sore throat that wouldn't heal. Went to my ENT and he knew what it was before he completed the exam. I had tonsil cancer that had spread to lymph noids in my neck left and right side. I hadn't drank for 35 years and stopped smoking 25 years ago, thought I was heathly. The cancer wasn't caused by either of those but was caused the HPV virus. I have great Drs who never sugar coated anything. My ENT told me that I would have to go through hell for the next year before he finished my first exam but the prognosis was good. Knocked the stood out from under me but I knew what I was facing. My Radiation Oncologist was even tougher than my ENT and my Chemo doc is a facted filled pleasant inbetween. I got to tell you they were right its been a tough time. I lost 50 pounds and many days it was hard to get out of bed to go to my treatments but I just dealt with that day and didn't worry about the next. This may not sound like encouragement but it is. Even though there have been some pretty dark days with the help from my family, friends and my medical team I made it through the treatments and my latest PET scan was cancer free. This is a fight you can win and when you come out the other end, at least for me, you'll see everything in life different. Get the support you need, listen to your medical team (at times I was a little belligerent to be honest) and hang tough. I just found this forum recently, wish I had found it sooner, and it seems like a lot of those here are willing to share their experiences and to give encouragement.
I hope this ends up being something easily treated for you and you can get on with raising your daughter.
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Thank you everyonevwag1r said:I just recently finished my
I just recently finished my treatments and am in the recovery phase. I had a lump on the left side of my neck. I had been showing some symptoms for some time before the lump appeared but my Dr couldn't figure out what was up with me. Looking in all the wrong places. Finally I had a serious sore throat that wouldn't heal. Went to my ENT and he knew what it was before he completed the exam. I had tonsil cancer that had spread to lymph noids in my neck left and right side. I hadn't drank for 35 years and stopped smoking 25 years ago, thought I was heathly. The cancer wasn't caused by either of those but was caused the HPV virus. I have great Drs who never sugar coated anything. My ENT told me that I would have to go through hell for the next year before he finished my first exam but the prognosis was good. Knocked the stood out from under me but I knew what I was facing. My Radiation Oncologist was even tougher than my ENT and my Chemo doc is a facted filled pleasant inbetween. I got to tell you they were right its been a tough time. I lost 50 pounds and many days it was hard to get out of bed to go to my treatments but I just dealt with that day and didn't worry about the next. This may not sound like encouragement but it is. Even though there have been some pretty dark days with the help from my family, friends and my medical team I made it through the treatments and my latest PET scan was cancer free. This is a fight you can win and when you come out the other end, at least for me, you'll see everything in life different. Get the support you need, listen to your medical team (at times I was a little belligerent to be honest) and hang tough. I just found this forum recently, wish I had found it sooner, and it seems like a lot of those here are willing to share their experiences and to give encouragement.
I hope this ends up being something easily treated for you and you can get on with raising your daughter.
I just wanted to thank everyone who responded. I feel better already...I will keep everyone updated. It's great to hear of your trials and the beauty that awaits after treatments. Im blessed to be on here! Thanks again!
Brian
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Me too
Proud Dad,
I feel for you ... like the others here. Mine was HPV as well; left side tonsil that had spread to lymph. I had the TORS radical neck dissection, chemo and radiation. Each of those were just as bad as I had read (here). The good news about this site is that we wont sugarcoat things ..but the information here is golden and valuable. We have ALL been "there". We each know what you are about to experience..both physically and emotionally. Let me be very clear on one point over all others ..... you will read this often ... no matter how close the diagnosis, EACH OF OUR CANCERS ARE DIFFERENT. Each of our treatments are different. There are things that I did not experience for which I was fully prepared to experience through the radiation. Others experienced them in spades. Be prepared for it all and rejoice at those that do not affect you so much.
A member here, Piplilly, writes for her husband. When it comes to the radiation, her potion of lotions worked very well for me.It is hard not to get overwhelmed by all of the information; I get it. It is hard not to 'get down' as the realization of what you are facing grows in your life. But there is one huge upside .... folks with our type of cancer tend to live. Your daughter is likely to have you at her wedding, share her kids with you, and appreciate your guidance in her life. Now is when you have the chance be a HUGE example for her how to handle crisis and setbacks. How to overcome the worst life has to throw at us. She will see you at your weakest, most fragile, and lowest moments ..and she will see you triumph over that. You will get to a point where you won't be able to "be strong" for her .... and that is OK. These chemicals and radiation waves are heavy duty treatments.
We each have our motivators as we travel through this..she is likely yours. Let her help, let her be a part of your pain and recovery. Your family will want to be there for you as much as they can, even though the will not understand the difficulties your body and mind will experience. For me, I thought EVERY DAY of three important people in my life that had died from cancer in the past 3 years .... each of them, when they got their diganosis, was told to get their affairs in order. They never had the chance to have the chemo, the radiation, the ICK that I had to endure. I imagine they each would have given up an arm to have had that opportunity to "endure" what I had to.
It may not sound like much right now to you ..but remembering that you are liekly to live through this can be HUGE.Stay with us here ... share with us here. You will find 4 or 5 of us that respond often, and you will get to "know" us. I just ended my treatments Feb 27th. My recovery had gone GREAT. I have been back to work since April, have all my energy back, but still have some swallowing and throat issues.
Keep letting us know what is up and ask questions about the varios options..we are NOT doctors, but we are survivors and have our own, individual, experiences to share that may help you prepare for what you will have to deal with. Trust me...every little bit of knowledge like that is invaluable.
I was very fortunate...Highlands Oncology in northwest Arkansas was TERRIFIC every step of the way. I hope for your sake you are fortunate enough to have an equally involved and professional care team.
In this forum you can send a private message...if you want to, feel free to send me one with your email address and I will be glad to communicate with you directly as well.
Don--Beagledad--Survivor.
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Been there.
My words of wisdom, go to the best. Often local not up to date. I went local & regret daily. Was over dosed for the 7 weeks for HPV skin over left tonsil didn't have tonsil. No tumors, no lymph now know great place in TAmpa they would never of done to Me what they did. No info just pushed to start immediately since traveled all over Europe full of energy, strong no symptoms nothing for 3 yrs no Dr was concerned felt great, but told I would die if didn't start with them immediately. If knew about Moffit in TAmpa wouldn't be in My position. Side effects miserable. Had to have feeding tube, due to major radiation burns from old marchine. . So PLEASE go somewhere good & really push you want quality of life. I'm on 5 yrs in horrible pain & no help cause IM alive, their words. So suffer daily throat fried, no saliva, thyroid, long list can barely eat. My kids older but time to really enjoy My adult kids but can't since 1/2 time lose voice from pain. Can't gain weight can't swallow well from bad scar tissue so tender & even choked on scrambled eggs & water.and 1 slice of banana another time. Scar tissue everywhere and gave 2 Chemo drugs & 1 ruined my insides. I'm really not asking for pity or scare you but why I push better Center or Hospital........very importat. Really good luck to you. Hope all works out. Can beat this for your daughter but doesn't need to be as hard as Me........bad Drs & radiation machine doling out high doses & 2 drugs. Good luck.....this board the best will learn so much since wasn't getting info, they helped so much as I went thru. Daisy
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For starts, bummer. But you
For starts, bummer. But you got here so your luck is improving. I did the standard 35/7 treatments. 35 radiation, 7 chemo. There are lots of variations on that, but for now exhale. Probably you have HPV - 16, which is the more common form of throat cancer now. The key term for you now is "Standard of Care" which is the medicalese for this is how this should be treated. Things to know include stuff others have already advised: CHECK HERE FIRST! The web is loaded with bizzare stuff on cancer. Dr. Goggle is a very common thing to do when you are freaked, but it WILL NOT give you the accuracy you will get here.
This board sees it all. We have had people posting that pure Chinese Food diets, heavy Marijuna use, leafy greens, will be your salvation. Pretty much the posters here will call B.S. when they see it.
The stats on survival you have already looked at are not wrong, they are incomplete. The world of treatment changes constantly, the Standard of Care evolves, but no one updates the survival stats. In fact there is probably no one that even has updating stats as part of their job description. I was told +95% when I entered treatment 5 years ago. After I got thru treatment, came out with clear post-treatment scans, given excellent prognosis, and told I had a +90% of 5 year survival. What? 95 - 90 = why did my odds go down? Cross examined my onc finally copped to he had no real clue on actual stats, but was well satisfied I would make it. My minor was Applied Statistics, I expected rigor. My Kid[2] is an ER doc. Getting him thru middle school Algebra was a battle of Stalingrad proportions. He's a good doc. My oncs are good docs. None of them should ever try to add or subtract long numbers in their head, let alone calculate propabilities.
This site is loaded with historical posts on almost everything you will encounter, from people on the front line. Take the time, actually read the suggested reading, and learn to use the search. But also, this life event sucks, no one is ready for it, and this is a pretty good place to come and completely freak out.
Cancer is not a guilt or innocence thing. It is a pretty common disease, you did nothing wrong in getting it, other than being human. That may seem obvious, but sometimes for people here it isn't.
I went thru treatment with Kaiser Perm in Denver. It has a very high Standard of Care, but that is true for 100s of cities in the US now. You have a depressingly common disease. Care will work, cure will happen. But the next several months are going to suck.
I have spent the last 5 post treatment years digging up dinosaurs, traveling to remote places, not being productive in my woodshop, swimming, sailing, riding, skiing. I have a bit of drymouth treated by sucking on a tree bark tab, sometimes get jaw cramps, have to slather on sun screen,. Otherwise my new normal looks like the old one. I met incredible people. You are going to see some of the finest humans on the planet, and they will be very kind to you. I did lose a my taste for single malts, otherwise pretty much taste everything. Kid[2] saw the opportunity, plundered the scotch collection.
You will very probably have a similar story.
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Sorry you are here...but try and relax...
As others have said, first step first is to determine whether you have HPV related cancer. I'd bet you do. If you do, you've likely caught it very early and it's extremely responsive to current treatments (surgery, chemo and radiation).
I was diagnosed at 41..had a lymph node on my neck swell up. They did an FNA which showed squamous cells...later HPV testing was positive. Had my tonsils out and they did a shot in the dark biopsy at the base of my tongue and got a hit (these are the most common locations for HPV head and neck cancer). Neck disection to remove the cancerous node and check others for spread... Then another surgery to remove the tumor from the base of my tongue. Followed by 6 or 7 weeks of radiation...don't even remember now, lol. Worked my office job all the way through. Only missed a few days post surgeries.
It's not easy by any means but I'm now like 4 years out and beyond some neck stiffness and random stuff I'm basically the same as I was before. One day at a time and hopefully you'll be on the road to recovery before you know it.
I second other peoples suggestions on going to a good center. I prefer an academic medical center where all the different specialists work in coordination (Oto, Oncology, Rad Onc). An NCI designated center is the best.
Good luck.
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A quick note. When you enter
A quick note. When you enter your program you will probably get a day of training/briefing on what to expect. Given your state of mind there may not be much retention. My wife was in charge. You will need someone in that role. Initially, treatment has no impact, you wonder what all the fuss is about. The later weeks may not be like that. Get a supervisor, let them drive. Get a spiral bound notebook, widelined, with a pocket to hold business cards, cheap, but a plastic cover proved useful when it got spilled on. In that notebook record everything. EVERY.THING. Your temp, your blood pressure, your weight, the PA's email addr and phone number, when you took a med, it may come to it that you record when you took a ****. I managed to go 5 days without. The med types get personal at that point.
I entered treatment at 235 pounds. Exited at 177 pounds. The weight will come off. I've managed to keep it below 195, but the last year has been a battle. My blood chem got trashed during chemo, bounced back to stunningly good level. A cholesterol problem vanished. Getting cancer may have added 10 years to my life quality. I did days in the ICU, an Irish Marathoner who posted here was going thru treatment at the same time. He was running races a couple of weeks after end of treatment. Your Milage WILL VARY.
Oh, and you have read all kinds of horror stories on nausea, etc. A big part of that is ancient history. Some very expensive anti-nausea drugs became generic, they will probably give you bottles of 50, with refills. It will be a struggle, but again, be very WARY of what you read on Dr. Google. Learn to shorten your planning horizon. Getting thru a day, an hour, is good enough. Then you get thru the next. Then the next. Eventually you're done.
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take it easy
There's a lot you still do not know about your problem. Thinking worst-case scenario just compounds the worrying/stress, and is pointless- serves no purpose. Take it easy until the ENT gets the PET/CT results and what the Dr.s have to say about their plan. "Fragments?" I take it you had a surgical biopsy? If not, then it might be nothing. I knew something was wrong almost a year before the lumps showed- weight loss. And that was nearly 13 years ago. C treatment has advanced, big time. I ditto the going to a major C Center, even if just for a 2nd opinion and to have them decide the best course of treatment to rid you of the C. I should have gone to the U of Iowa, instead of the local locos- became Feeding Tube dependent a little over 9 years out from overkill on the Rads to the base of my throat for NPC. NPC is nasal- the 2 lumps were on my throat, though.
Come what may, proud dad, using your head to get the best treatment to rid you of the C, and keeping it in the Positive.
As a footnote: I went thru it all without a caregiver. Some people get overwhelmed by the diagnosis. Just a bump in the road of life, man.
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prayersproud dad said:Thank you everyone
I just wanted to thank everyone who responded. I feel better already...I will keep everyone updated. It's great to hear of your trials and the beauty that awaits after treatments. Im blessed to be on here! Thanks again!
Brian
Brian aka proud dad
We are blessed to have you here!!
I pray for your well-being and for you to be there for your loved ones!
When I was younger my dad was diagnosed with neck cancer - well, he first noticed a lump in his neck, and even after diagnostics it kept growing : ( He only got treatment after it had grown quite a bit, which did not make it easy. He did make it though!! I know he tried to be brave but I could tell he was scared. It's not easy.
Just know that you are not alone and that you are loved. Peace & blessings your way!!!
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1 Year Anniversary of my tonsil and lymph node surgeryvwag1r said:I just recently finished my
I just recently finished my treatments and am in the recovery phase. I had a lump on the left side of my neck. I had been showing some symptoms for some time before the lump appeared but my Dr couldn't figure out what was up with me. Looking in all the wrong places. Finally I had a serious sore throat that wouldn't heal. Went to my ENT and he knew what it was before he completed the exam. I had tonsil cancer that had spread to lymph noids in my neck left and right side. I hadn't drank for 35 years and stopped smoking 25 years ago, thought I was heathly. The cancer wasn't caused by either of those but was caused the HPV virus. I have great Drs who never sugar coated anything. My ENT told me that I would have to go through hell for the next year before he finished my first exam but the prognosis was good. Knocked the stood out from under me but I knew what I was facing. My Radiation Oncologist was even tougher than my ENT and my Chemo doc is a facted filled pleasant inbetween. I got to tell you they were right its been a tough time. I lost 50 pounds and many days it was hard to get out of bed to go to my treatments but I just dealt with that day and didn't worry about the next. This may not sound like encouragement but it is. Even though there have been some pretty dark days with the help from my family, friends and my medical team I made it through the treatments and my latest PET scan was cancer free. This is a fight you can win and when you come out the other end, at least for me, you'll see everything in life different. Get the support you need, listen to your medical team (at times I was a little belligerent to be honest) and hang tough. I just found this forum recently, wish I had found it sooner, and it seems like a lot of those here are willing to share their experiences and to give encouragement.
I hope this ends up being something easily treated for you and you can get on with raising your daughter.
One year ago today I had surgery to remove my left tonsil and a bunch of lymph nodes in my left neck. My cancer was HPV in the lymph nodes and HPV and small cell in the tonsil - my oncologist said that was very rare. I went through 12 chemo treatments and 30 radiation treatments. The chemo mostly just made me very tired; the radiation made an incredible mess of my mouth. I had to use a feeding tube for a short time. I finished my treatments late October and had emergency surgery December 22 for a perforated stomach ulcer (I believe caused by my feeding tube). I've lost about 40 lbs. but I was overweight to start with. I had a CT/PET scan in early March - 100% clear. I had a CT scan in early June - still 100% clear. I feel incredibly good. I have very dry mouth and really don't enjoy eating very much but I believe it's getting better all the time.
What has helped me the most is my faith in God, prayers from so many people, the love and support of my family and friends. And of course, my wonderful health care team (Baylor Scott White-Dallas and Rockwall, TX).
The radiation really scared me, so when I was going through it I would silently sing the song "One Day at a Time"
I've often heard that when you have someone that really needs you, you will fight really hard to survive. I wish everyone the best and keep strong.
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Form a team
I think Logan51 was advising you not to do this alone, even though he/she did it that way. I formed Team Mike, appointed my loving wife Terry its captain, and let anyone who wanted to help pitch in--under Terry's coordination. That left my 'job' basically to concentrate 100% on getting through treatments, following my docs' advice, and staying as strong as I could. Remember, with cancer, "No news" can turn into really scary thoughts when people don't hear from you and fear the worst has happened. There is no "I" in cancer--it affects not only you, but many other people in your life--in some way.
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I agree with Logan.Logan51 said:take it easy
There's a lot you still do not know about your problem. Thinking worst-case scenario just compounds the worrying/stress, and is pointless- serves no purpose. Take it easy until the ENT gets the PET/CT results and what the Dr.s have to say about their plan. "Fragments?" I take it you had a surgical biopsy? If not, then it might be nothing. I knew something was wrong almost a year before the lumps showed- weight loss. And that was nearly 13 years ago. C treatment has advanced, big time. I ditto the going to a major C Center, even if just for a 2nd opinion and to have them decide the best course of treatment to rid you of the C. I should have gone to the U of Iowa, instead of the local locos- became Feeding Tube dependent a little over 9 years out from overkill on the Rads to the base of my throat for NPC. NPC is nasal- the 2 lumps were on my throat, though.
Come what may, proud dad, using your head to get the best treatment to rid you of the C, and keeping it in the Positive.
As a footnote: I went thru it all without a caregiver. Some people get overwhelmed by the diagnosis. Just a bump in the road of life, man.
I agree with Logan.
Yep, lots of us have to go through and Continue to go through with No caregiver. No one. No one going to appts with us, no one taking us to biopsies, or even to the Emergency room at times ( and being admitted, have to find someone to go retrieve my vehicle from the Emergency Dept parking deck!!)... Ah well, so it goes.
And yes, I'm at an NCI/ NIH Comprehensive Cancer Center. It's one of only 47 in the nation and it's been continuously accredited since 1990, every year. It's the #1 Cancer Center in this state. And we are highly ranked for head and neck cancer..
Also, in the height of the pandemic last year, our comprehensive cancer center did not miss a beat! Everyone got timely care. In May, 2020 for instance, yours truly had no less than 8 appointments that month, including a PET scan and an all day infusion. It felt like a ghost town at times, but my care never lapsed, not once.
Today I got bad news though--- I just got out of the Cancer Center hospital June 10th for bilateral bacterial pneumonia ( Double pneumonia) and went home with a PICC line to do 12 more days Intravenous antibiotics. ( and Yes, I did them completely alone).... At the end, the home health nurse came and took out the PICC line.
today was my hospital follow-up visit with my Internal Med doctor and---- He heard Crackles and Rhonchi, both sounds, in Both of my Lung Bases, and also prominently throughout my Right lung.
I still have Double Pneumonia ..... Which I was aware of already. I knew, because my cough is still productive plus it's infected....
this is my 6th ( Sixth) pneumonia and it's just not good.
he called my Pulmonary; critical care Team today, after hearing it in my lungs . To let them know...
Drats !!! I don't know what is next
Proud dad, here's hoping you can get to the Best possible cancer care. It will then be one less thing to worry over and you can concentrate on doing your best on your treatments. Having trust in your Team is worth it.
LitlCJDoll
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Another Idea
Some great advice in all these responses. We each react to this junk differently, of course, and what gets us through differs as well. Some can work, others, like myself, could not even get off the couch for 3 weeks ...I am STILL amazed about that; I am a busy-type person and just cannot picture myself merely "lying there", but that is exactly what I did. Praying for sleep to make the days/nights shorter.
But to my point....I have a computer repair business and as such a TON of contacts, friends, vendors, customers, business associates, etc, not to mention some family. To avoid having to explain everything to everyone every day, and not to scare off my customer base, I started journaling on Facebook about the realites of my cancer. I was VERY real ..not garnering pity nor sympathy, but to inform those around me how it was LITERALLY going. The pains, the ups, the downs, the meds, the emotions, all of it. I was (and still am) AMAZED at the "following" that created. If I failed to write for a bit, I started getting people asking for more .... they were insatiable. I think this is due in large part to the fact that friends want to know but do not want to or know how to ask.
They wanted to share with me and help me, but if they do not know how I am doing then they don't know how to react. For me, it was positive reinforcement of all the people out there that supported and cared for me .. many of whom I have never met. They knew of my cravings for a chili dog when I could not eat, they understood the pain I went through post surgery and could picture it for themselves. I did not just say I hurt, I explained how it hurt, what actions hurt and how I tried to ameliorate them. My friends and contacts LITERALLY went through this with me. For me it was a great source of cathaticism to share my experience and know that folks were interested. And, to boot, I only had to say things once rather than tell every person individually "how I was doing".
So, if you are a "communicator", consider such. Not only did I have my awesome wife as primary caretaker (and never underestimate THAT tough job), but I had a whole country full of "friends" helping me get through day to day. And then there is this forum. I did not share as much here about my day to day, but did find great support and some EXCELLENT ideas on how to handle things like tiredness, the radiation skin burns, the constipation (One thing often not talked about, but very important to address), and "life hacks" to help some of the bad things be easier. (Like taping my mouth closed at night to help avoid the discomfort of dry mouth).
We know you are scared and extremely curious. Maybe even pi**ed off. All natural and all "ok" here. This is a safe place for those emotions as we all understand perfectly.
As you will read from all of us ..enjoy what you have now. The eating, the energy, the verve. You will lose most of it temporarily .... what will seem like ages when going through it. But there is motivation to come as you begin your healing in the little things like taste, saliva, swallowing, etc. I am only 4 months post treatment and still have a difficult time swallowing...I have been able to taste again for quite some time, but stuff still goes down hard. I hear most of that will go away with time, so I just enjoy each day as it comes and keep trying the pop tarts or sour cream and onion chips ... one day I will be surprised to feel that stuff slide right down there like it should! But for now, well, for now they are just things to anticipate.
Don aka BeagleDad
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Quick questionLitlCJdoll said:I agree with Logan.
I agree with Logan.
Yep, lots of us have to go through and Continue to go through with No caregiver. No one. No one going to appts with us, no one taking us to biopsies, or even to the Emergency room at times ( and being admitted, have to find someone to go retrieve my vehicle from the Emergency Dept parking deck!!)... Ah well, so it goes.
And yes, I'm at an NCI/ NIH Comprehensive Cancer Center. It's one of only 47 in the nation and it's been continuously accredited since 1990, every year. It's the #1 Cancer Center in this state. And we are highly ranked for head and neck cancer..
Also, in the height of the pandemic last year, our comprehensive cancer center did not miss a beat! Everyone got timely care. In May, 2020 for instance, yours truly had no less than 8 appointments that month, including a PET scan and an all day infusion. It felt like a ghost town at times, but my care never lapsed, not once.
Today I got bad news though--- I just got out of the Cancer Center hospital June 10th for bilateral bacterial pneumonia ( Double pneumonia) and went home with a PICC line to do 12 more days Intravenous antibiotics. ( and Yes, I did them completely alone).... At the end, the home health nurse came and took out the PICC line.
today was my hospital follow-up visit with my Internal Med doctor and---- He heard Crackles and Rhonchi, both sounds, in Both of my Lung Bases, and also prominently throughout my Right lung.
I still have Double Pneumonia ..... Which I was aware of already. I knew, because my cough is still productive plus it's infected....
this is my 6th ( Sixth) pneumonia and it's just not good.
he called my Pulmonary; critical care Team today, after hearing it in my lungs . To let them know...
Drats !!! I don't know what is next
Proud dad, here's hoping you can get to the Best possible cancer care. It will then be one less thing to worry over and you can concentrate on doing your best on your treatments. Having trust in your Team is worth it.
LitlCJDoll
Pneumonia - how is your swallowing? Do you cough a lot?
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Hi SuzJ,SuzJ said:Quick question
Pneumonia - how is your swallowing? Do you cough a lot?
Hi SuzJ,
I have Silent Aspiration. Meaning I cannot detect it at all. My Primary tumor was large, actual tumor size 6.3 centimeters by 3.1 centimeters by 22 Centimeters thick. It invaded so much ( tonsils , bilateral salivary glands, gums, floor of mouth, entire tongue, jaw one), then I've had 4 recurrences and a New Primary, after radiation. Many, many surgeries....
But it was my primary tumor which altered/ damaged my swallow.
My SLPs actually do not know How I am able to swallow, because technically its not possible . They've told me that somehow I trained alternate muscles, to enable a swallow.
I aspirate Everything, Thin liquids, thick liquids, pudding consistency and runny puree. All of it. The last cancer Modified Barium Swallow study I had done, was my worst yet. Tragically bad !!
I am allowed PO for Comfort purposes.... There is No possible way for me to gain much of anything in way of nutrition by my oral intake. Its just not possible.
I'm allowed a Teaspoon or Less, in my mouth at a time to swallow.( liquids) And I can have 1/4 cup only, within a 15 minute time period.
They show me all my videos, swallowing. The last one I had.... Beginning of test she told me to take a mouthful and swallow. So I did. It felt just fine to me, and I was about to take another swallow, when she ran into the room and grabbed the cup out of my hands, saying " You just aspirated that first swallow!!".
I shrugged my shoulders. Heck, I couldn't feel it.
I went on to finish the test.
They say I'm aspirating " with Every Swallow". Thus, the strict rules about how much in my mouth at a time, etc.
This E. Coli pneumonia --- I had it in one lung in 2019. Right now, its bilateral ( double) pneumonia. Desd serious. I've also had Sepsis secondary to a pneumonia. Not good.
This E. Coli didn't come from the liquids I drink. No.... Somehow, I aspirated my stomach contents.
I sleep in my very nice hospital bed, and I elevate the head every night. Obviously though, that's not enough intervention to stop this from happening.
I'm beginning to wonder about my esophageal dilation.... I have one every 6-8 Weeks, ongoing and I have had to do it over 2 Years now. Radiation literally closed up my esophagus, and a specialist does repeat dilation to keep it open. I'm beginning to wonder if I am as pirating what he is bringing up, from my stomach, while I'm under anesthesia. I am going to put my theory forth, to this doctor.
Anyway, thanks for asking. My swallow is comparable to a persons with ALS, or a major stroke victim.
All because of a monster SqCC tumor in the head/ neck of this very petite person. I've never smoked ( not once) I do not drink, and my tumors ( 6 recurrences so far) have all been hpv Negative.
Positive for Perineural Invasion...
Just bad luck.
LitlCJdoll
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Never said "must"Logan51 said:alone is not an issue
Mike
The footnote was just how I went thru tx, and I was not advising or suggesting anything. There's also no "U" in Cancer, but you got it, as did "I."
Hoping the best for you, proud dad. We are all proof you can get thru this ordeal-like bump in the road of your life. Know you must feel overwhelmed, but just take it one day at a time, and know you will survive- we all do with the first bout of H&N.
I never said, or meant, that someone MUST have a caregiver. I just wrote how I managed my care. What worked well for me might not work well for others. And, I am aware that HNC treatments are not as invasive as they were 12 years ago when I had mine. Bottom line, take stock of your needs and the resources you have on hand to deal with HNC and its treatments, and go from there. But, I will stand by my opinion that there was no "I" in cancer for me. This "I" would not be alive today if not for Team Mike.
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Suggest you read some stories under this topic
I fully understand how you feel after being diagnosed, I felt the same way. Please read my story, go to my Topic "Radiation or no Radiation" within this group. There is alot of info, research and personal experiences within this group. The size of this group should give you some ease that there are MANY MANY survivors. Try to stay calm. Be well.
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Keeping people in the knowBeagleDad said:Another Idea
Some great advice in all these responses. We each react to this junk differently, of course, and what gets us through differs as well. Some can work, others, like myself, could not even get off the couch for 3 weeks ...I am STILL amazed about that; I am a busy-type person and just cannot picture myself merely "lying there", but that is exactly what I did. Praying for sleep to make the days/nights shorter.
But to my point....I have a computer repair business and as such a TON of contacts, friends, vendors, customers, business associates, etc, not to mention some family. To avoid having to explain everything to everyone every day, and not to scare off my customer base, I started journaling on Facebook about the realites of my cancer. I was VERY real ..not garnering pity nor sympathy, but to inform those around me how it was LITERALLY going. The pains, the ups, the downs, the meds, the emotions, all of it. I was (and still am) AMAZED at the "following" that created. If I failed to write for a bit, I started getting people asking for more .... they were insatiable. I think this is due in large part to the fact that friends want to know but do not want to or know how to ask.
They wanted to share with me and help me, but if they do not know how I am doing then they don't know how to react. For me, it was positive reinforcement of all the people out there that supported and cared for me .. many of whom I have never met. They knew of my cravings for a chili dog when I could not eat, they understood the pain I went through post surgery and could picture it for themselves. I did not just say I hurt, I explained how it hurt, what actions hurt and how I tried to ameliorate them. My friends and contacts LITERALLY went through this with me. For me it was a great source of cathaticism to share my experience and know that folks were interested. And, to boot, I only had to say things once rather than tell every person individually "how I was doing".
So, if you are a "communicator", consider such. Not only did I have my awesome wife as primary caretaker (and never underestimate THAT tough job), but I had a whole country full of "friends" helping me get through day to day. And then there is this forum. I did not share as much here about my day to day, but did find great support and some EXCELLENT ideas on how to handle things like tiredness, the radiation skin burns, the constipation (One thing often not talked about, but very important to address), and "life hacks" to help some of the bad things be easier. (Like taping my mouth closed at night to help avoid the discomfort of dry mouth).
We know you are scared and extremely curious. Maybe even pi**ed off. All natural and all "ok" here. This is a safe place for those emotions as we all understand perfectly.
As you will read from all of us ..enjoy what you have now. The eating, the energy, the verve. You will lose most of it temporarily .... what will seem like ages when going through it. But there is motivation to come as you begin your healing in the little things like taste, saliva, swallowing, etc. I am only 4 months post treatment and still have a difficult time swallowing...I have been able to taste again for quite some time, but stuff still goes down hard. I hear most of that will go away with time, so I just enjoy each day as it comes and keep trying the pop tarts or sour cream and onion chips ... one day I will be surprised to feel that stuff slide right down there like it should! But for now, well, for now they are just things to anticipate.
Don aka BeagleDad
Being a professor at the time, like Don I knew a lot of people who were concerned about me and just wanted to stay in the know. With all of the time and effort needed just to manage the day to day stuff, I decided to start a blog that friends and family could read to keep up with everything, so Terry and I didn't have to make a bunch of calls and texts to do that. When someone is diagnosed with Stage 4 cancer, no news can easily turn into major worries and fears by those who wanted to know how WE were doing. (Remember, there was no "I" in my cancer). I kept the blog for 8 years--it took that long for things to reach some level of consistency with my health and prognosis. Late in 2019 I decided to use the blog as the basis for a book about my experiences as a patient, then as a survivor coping with many serious side effects. It came out in 2020. Like Logan51, I am FT-dependent and will be for the rest of my life. My CSN profile photo is the cover of the book. You can use that to find it on Amazon and Barnes and Noble. This is not a plug to make a few bucks from royalties. All of my royalties are donated to the Head and Neck Cancer Alliance. Bottom line, it all started with just wanting to keep friends and family in the know. Lots of ways to do that these days, without having to spend a lot of time and energy that you might not have much of.
mike
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