Neck Dissection Results, Further Treatment, Spindle Cell Features

JAL23

Hi everyone,

For those of you who've been following my story, thank you again for your support and kind words. For those of you who are just reading, here is a quick recap: 29yo; Feb of 2017 I had an extremely small superficial SCC lesion removed from the right side of my tongue - Stage 1. At the time, I was told this was all I would need (no rads, chemo, or neck dissection) along with careful monitoring. About a month ago Oct 2017, I noticed an extremely painful lump on the right side of my neck. Despite being on a course of antibiotics and steroids, it kept getting bigger and bigger. a CT scan two weeks out showed the lump was about 3.5cm and despite the fact that a biopsy came back negative, the decision was made to schedule surgery. The week between the CT scan and the surgery resulted in a 7.5cm mass in my neck along with two additional lymph nodes involved (both of these nodes had no capsular involvement). I lost my jugular, about 20% of my neck muscle, and my hypoglossal nerve which has paralyzed the right side of my tongue.

First off, let me start off by saying that I am really mad. I am mad at my healthcare team for letting me slip through the cracks like they did. I am mad that a 29 year old who had no risk factors (nonsmoker, rare drinker, HPV negative) was given such a conservative and by-the-book followup treatment. I have ZERO faith in my current oncologist, and plan on abandoning him for the next step in treatment. I won't name names, but if anyone is planning on getting treatment in or around the NJ area, I am happy to share my personal experiences of which centers and oncologists to avoid privately.

After this grueling surgery, the same oncologist sat me down, told me he "anticipated me needing a neck dissection eventually", and that this sort of cancer and staging now has a low survival rate. He ballparked it around 50-60% and mumbled something about how if statistics were useful I wouldn't be in his office again. This is the same oncologist who said followup PET scans wouldn't be necessary after the original surgery. My wife and I were in shock. It turns out, according to the pathology, that the 7.5cm mass in my neck no longer had any lymph features in it. Both my surgeon and oncologist have suggested that it was a lymph node based on where it was located, but the cancer had essentially destroyed any of the identifiable cells. Here's what makes matters worse according to my oncologist - the mass had spindle features in it. This makes it sarcoma-like (someone please correct or clarify if I am wrong here), and apparently is the rarest of the rare when it comes to head and neck SCC. My understanding is that the data just doesn't exist to determine if rads/chemo truly are effective against spindle feature SCC. Yet, this is what is being recommended as the best we've got.

Second, I can't even begin to explain how traumatic the neck dissection was. In terms of overall pain, it was not that bad - around a 4 or 5 out of 10. The true horror here is the loss of the right side of my tongue. Apparently the mass had essentially strangled my jugular and the main branch of my hypoglossal nerve, and had to be removed. The fact that I can no longer eat on the right side of my mouth is a constant reminder of my cancer. The fact that I can't talk without sounding like I have a bunch of marbles on the right side of my mouth is a constant reminder of my cancer. Swallowing has been impaired, my right arm feels like I am constantly carrying around a 30lb weight, and the pain in my jaw is excruciating. Oh, did I mention my throat now feels like it's made out of wood? I've been promised a lot of this will tone down in due time, but I am not holding my breath. The one improvement has been speaking, and I owe it primarily due to not shutting up and going back to work two weeks post-op. The best exercise is doing the thing you want to do, right? My wife says my speech is not nearly as bad as I am describing I hear it in my head. I feel disabled, or mortally wounded, or like I've paid a huge price for treating this awful disease - and this is supposed to be the easy part...

Final report suggests my official staging is 4b. I had a PET scan about a week ago, which came back clean everywhere else! The area around the surgery site lit up, but this was expected because of all the tissue changes and scarring. I keep reiterating to myself "there is no more detectable cancer" and that is a somewhat comforting thought, despite some of the pessimism coming from my oncologist (man, I really hate all interactions with this guy). My ENT surgeon did an excellent job, and was able to remove the gross tumor and get clean margins where it invaded the muscle.

Third, my wife went into overdrive to get us to a proper cancer center to get this treated. She is my guardian angel throughout all of this. I now have appointments (some have passed already) at Overlook Medical Center, Morristown Memorial Hospital, the Robert Wood Johnson CINJ at Rutgers, Memorial Sloan Kettering in Manhattan, and Penn in Philadelphia. We have been vigorously interviewing our appointments at each location to determine who we feel most comfortable with moving forward. Our best experience was at Sloan with Dr. Nancy Lee, who does radiation with proton beam technology out of a place called Procure in NJ. She is an amazing oncologist with such an optimistic and hopeful team of specialists. They are all the kind of people you want fighting for you in your corner with this horrible disease. Penn also has a proton beam machine, and we have our appointment on Tuesday with Dr. John Lukens, so we'll see how that goes. Any feedback or experiences at these centers would certainly be welcome, although I feel like we are at the best places you could be for this sort of situation. MD Anderson wouldn't bother with us, and told us their next appointment wouldn't be until well after Thanksgiving - far too late to start treatment let alone consult about it.

The general consensus is radiation plus cisplatin. The radiation sounds terrible, but the cisplatin sounds horrific. I am now confronted with the idea that I could potentially go deaf (please God don't let me lose music in addition to food!), lose kidney function, and develop permanent nerve damage on top of all the grueling issues radiation presents post-treatment. I've talked with a few survivors in-person (ironically no-one with as high of a staging as I have) and they've all described this as a rough treatment. 10/10 pain, 10/10 difficulty, 10/10 complications. I've been told to fight the PEG with all I've got, and to keep swallowing no matter how painful. I've been told that taste eventually comes back and that you can eventually go back to eating somewhat normally as recovery happens. Seems like I have quite a bit more to "pay" to stave off the disease. Sometimes I walk around the house or drive somewhere and I will just start crying unprovoked - bawling like a baby - at the thought of this treatment plan. I often imagine the thought of abandoning all of this treatment, flying to somewhere warm and tropical, and living out the rest of my short life until the cancer takes over again. This is purely a fantasy, but it does make me wonder if the treatment "price" is always worth it.

You know the old saying, "There's always someone worse off than you?" Well, I feel like I am the person they are referring to in that saying at this point. Someone give me some hope.

yensid683

Don't fight the PEG

I was dx in March of 2012 with stage IVa, base of tongue, 30mm primary, 60mm largest lymph node, the only saving grace was that the PET showed no metastises.  I had induction chemo (Taxotere, Cisplatin and 5FU), 33 days of IMRT, 8 sessions of Erbitux and two neck dissections.

What you have heard about challenge, discomfort and what have you is fairly accurate.

I would make a strong point, DON'T FIGHT THE PEG!

I was not happy when my RO said I had to have one, but the tipping point argument for me was when he said that prior to the widespread use of a PEG tube, most head and neck cancer patient deaths were due to starvation!

I had the tube, I didn't want to use it, I was sorely afraid of losing the ability to swallow, but it allowed me to get enough calories in so that my weight loss was not dramatic, I just had to keep up with the difficult experience that swallowing became.

A word of usage advice.  When you have the tube clamp open and are either flushing the tube or actively 'feeding', if you feel the urge to cough, sneeze or laugh, close the clamp before you sneeze, whatever is in your stomach or in the tube will go flying out!

hope things turn out well for you

lorijeannj

Wow, didnt expect that update

Wow, didnt expect that update.

You mentioned New Jersey.  If you are anywhere near Thomas Jefferson in Philadelphia, call for an appointment.  They will see you tomorrow.  This is where my husband went and they have one of the top centers in head and neck cancers.  He is seeing surgeon Dr. Joseph Curry, but any one of those doctors would be fine.

My husband did have radiation and chemotherapy nearer to our home in a cancer center as Thomas Jefferson does work with our local cancer center.  He didnt need a neck disecction and the treatments did clear lymph nodes (we hope).  He just finished last week and is hoping for all the swelling to subside soon.  Yes, he does have a PEG and it sucks but he had no choice as he couldn't eat before treatment his tongue was swollen and the pain excriciatin.  He is trying to get off Peg but it is difficult.  In due time.

I really, really wish you luck.  My prayers are with you.

swopoe

Please don’t give up.my

Please don’t give up.my husband had the rads and cisplatin for his tongue cancer. He was otherwise healthy and young like you and he did well with the treatments. Yes, he used a PEG tube. But he wa also off the PEG one month after treatment ended. He didn’t go deaf or lose hearing from cisplatin. He loves music. Still sings to our kids, and to me, and can even still play his saxophone. He talks great, and you would never know he had part of his tongue removed unless he told you. He eats anything he wants. Last week, he had. NY strip steak, a far cry from the PEG tube. His neck has scars from the neck dissection, yes, and he does clear his throat a bit still, but he is doing great. We are two years out from diagnosis. Life is amazing. You are strong, and so is your wife.

Some tips I have for you are: Apply aquaphor at the radiation site immediately after radiation and again before bed. My husband is very fair, but his neck did really well with rads keeping up with the aquaphor. And use a pillow case that you don’t mind throwing away when you are done. Eat all you can and try to gain some weight before rads start in case you need a peg. My husband had a peg placed before rads started. That was a good idea. He lost about 20 lbs during treatment but is now back to his weight before treatment began. He looks like his normal self. There will be more tips once you have a treatment plan, but please hang in there and do not give in. You can beat this and live a great life with your wife going forward.

lorijeannj

If you were to get a PEG,

If you were to get a PEG, which I recommend, it should be done before treatments start for if you decided halfway through treatments they may have to stop while surgery site heals.  

You dont have to use the PEGt, BUT, it is there if you need it and will save you a hospital trip from dehydration.

My husband is glad he got one and has maintained weight throughout his treatments.

Now for dental, get your teeth checked out but this should be a topic for another time.

Good luck.  You are young and strong.  You got this!

johnsonbl

You have a right to be pissed off...

You've been dealt a crappy hand...  So be mad and cry it out but get it out of your system because you have stuff to do.  You're young and you have a fight in front of you.  It sounds like you have a great team of docs in your corner (now).  If you've got plenty of extra weight, you could defer the PEG tube...but if you're thin you should consider it.  Lots of good advice on these forums.  These folks have lived it.

Good luck and fight the good fight.

Brandon

JAL23

yensid683 said:

Don't fight the PEG

I was dx in March of 2012 with stage IVa, base of tongue, 30mm primary, 60mm largest lymph node, the only saving grace was that the PET showed no metastises.  I had induction chemo (Taxotere, Cisplatin and 5FU), 33 days of IMRT, 8 sessions of Erbitux and two neck dissections.

What you have heard about challenge, discomfort and what have you is fairly accurate.

I would make a strong point, DON'T FIGHT THE PEG!

I was not happy when my RO said I had to have one, but the tipping point argument for me was when he said that prior to the widespread use of a PEG tube, most head and neck cancer patient deaths were due to starvation!

I had the tube, I didn't want to use it, I was sorely afraid of losing the ability to swallow, but it allowed me to get enough calories in so that my weight loss was not dramatic, I just had to keep up with the difficult experience that swallowing became.

A word of usage advice.  When you have the tube clamp open and are either flushing the tube or actively 'feeding', if you feel the urge to cough, sneeze or laugh, close the clamp before you sneeze, whatever is in your stomach or in the tube will go flying out!

hope things turn out well for you

Thank you for sharing your

Thank you for sharing your experiences. Gives me hope that this PET scan coming back clean is a good sign, if just a small one.

It's not that I would object to the PEG, but that of all the oncologists I've seen, no one has recommended a prophylactic PEG. Maybe it's because I am a bit overweight or maybe it's my age, or even where they are radiating me. There seems to be consistency among different specialists for me.

We'll see, but at this point I do want to be careful in listening to the concensus from Dr.s about the PEG.

JAL23

lorijeannj said:

Wow, didnt expect that update

Wow, didnt expect that update.

You mentioned New Jersey.  If you are anywhere near Thomas Jefferson in Philadelphia, call for an appointment.  They will see you tomorrow.  This is where my husband went and they have one of the top centers in head and neck cancers.  He is seeing surgeon Dr. Joseph Curry, but any one of those doctors would be fine.

My husband did have radiation and chemotherapy nearer to our home in a cancer center as Thomas Jefferson does work with our local cancer center.  He didnt need a neck disecction and the treatments did clear lymph nodes (we hope).  He just finished last week and is hoping for all the swelling to subside soon.  Yes, he does have a PEG and it sucks but he had no choice as he couldn't eat before treatment his tongue was swollen and the pain excriciatin.  He is trying to get off Peg but it is difficult.  In due time.

I really, really wish you luck.  My prayers are with you.

Hi lorijeannj,

Hi lorijeannj,

Thanks for the good thoughts and prayers. That's truly appreciated.

As of now, I feel comfortable in the appointments in front of me. I figure Penn and MSK are considered some of the best (not to say Thomas Jefferson is NOT the best either) and so I feel confident if there is concensus from both on how to proceed. I will admit that I am feeling quite fatigued from all of the Dr.s appointments, and so I don't know that we have it in us to add another to the list. Complicating this is the fact that treatment really needs to start right after thanksgiving as there is concern about tumor formation.

I just want to live, so ultimately I know I have to proceed. I would have never imagined I'd be spending my late 20s early 30s like this.

JAL23

swopoe said:

Please don’t give up.my

Please don’t give up.my husband had the rads and cisplatin for his tongue cancer. He was otherwise healthy and young like you and he did well with the treatments. Yes, he used a PEG tube. But he wa also off the PEG one month after treatment ended. He didn’t go deaf or lose hearing from cisplatin. He loves music. Still sings to our kids, and to me, and can even still play his saxophone. He talks great, and you would never know he had part of his tongue removed unless he told you. He eats anything he wants. Last week, he had. NY strip steak, a far cry from the PEG tube. His neck has scars from the neck dissection, yes, and he does clear his throat a bit still, but he is doing great. We are two years out from diagnosis. Life is amazing. You are strong, and so is your wife.

Some tips I have for you are: Apply aquaphor at the radiation site immediately after radiation and again before bed. My husband is very fair, but his neck did really well with rads keeping up with the aquaphor. And use a pillow case that you don’t mind throwing away when you are done. Eat all you can and try to gain some weight before rads start in case you need a peg. My husband had a peg placed before rads started. That was a good idea. He lost about 20 lbs during treatment but is now back to his weight before treatment began. He looks like his normal self. There will be more tips once you have a treatment plan, but please hang in there and do not give in. You can beat this and live a great life with your wife going forward.

Hi Swopoe,

Hi Swopoe,

I don't know you personally, but I want you to know that after reading your message I've been sitting at my desk sobbing. It's so hard to pull anything positive from this horrible situation, but I want so badly to be where your husband is now. I desperately want to feel normal again. I want a family and my life back. This has been robbed from me, and so knowing that it is possible to steal that life back is enough hope to keep me going.

Thank you.

JAL23

lorijeannj said:

If you were to get a PEG,

If you were to get a PEG, which I recommend, it should be done before treatments start for if you decided halfway through treatments they may have to stop while surgery site heals.  

You dont have to use the PEGt, BUT, it is there if you need it and will save you a hospital trip from dehydration.

My husband is glad he got one and has maintained weight throughout his treatments.

Now for dental, get your teeth checked out but this should be a topic for another time.

Good luck.  You are young and strong.  You got this!

Thank you for your tips. I

Thank you for your tips. I want to be somewhat careful about the PEG, as that has not been offered to me yet by my oncologists. Of course if it is recommended or offered I will take them up on it (as seems to be the general thought on the forum). I'll update if that changes.

MSK is doing a full dental workup in the city. I have never had a cavity or filling in my entire life, so I guess that is hopefully a good thing as far as dental issues go! I am also getting fitted for trays for a protective gel.

Thank you for the kind words. I really do appreciate it.

JAL23

johnsonbl said:

You have a right to be pissed off...

You've been dealt a crappy hand...  So be mad and cry it out but get it out of your system because you have stuff to do.  You're young and you have a fight in front of you.  It sounds like you have a great team of docs in your corner (now).  If you've got plenty of extra weight, you could defer the PEG tube...but if you're thin you should consider it.  Lots of good advice on these forums.  These folks have lived it.

Good luck and fight the good fight.

Brandon

Hi Brandon,

Hi Brandon,

Thanks for the advice. I hear that constitution and mindset are so important in this situation, but that even the strongest of both get broken by the end of it.

If I am being honest, I needed to drop some weight a long time ago. My diet wasn't the best during grad school and I certainly put on some weight over the last few years. Not necessarily bad foods, more overconsumption than anything else. Maybe this is why my Dr.s aren't overly concerned about the PEG? Either way I think my biggest worry is hydration and being able to continue to swallow water. Guess I won't know how tough it truly is until I get under the mask.

Here's to the "fight" in all of us!

soonermom

Treatment

My husband was pretty much in your situaiton excpept he's much older.  I won't lie. The treatment is brutal.  I also won't lie when I say you can do this!  My husband's treatment center strongly encourages a PEG prior to treatment.  There is no one right decision about this but I can only tell you that even with a PEG, calorie intake and hydration were an enormous struggle even after treatment ended.  I am forever grateful that my husband opted to do it and that we got all of the issues with the PEG placement, and he did have a few, behind him before the real tough times started.  Having said all of that please know that he got the PEG out less than 4 months after treatment ended.  He can swallow and talk (he totally lost the ablity to talk during treatment and we did not know if he would ever be able to work again.)  He's not deaf,  Cisplatin does not make everyone deaf and his kidneys still function I believe partly because he did have a PEG.  It is very important that you maintain hydration when you are on Cisplatin.  He would simply not have been able to take in enough fluids enough without the PEG.  One thing I have learned is that everyone responds differently to this treatment plan.  You don't know how you will do.  Just take it one day at a time.  My husband is still seeing improvement in his ability to eat and enjoy food.  He works full-time again.  He was able to return to riding his motorcycle and just rode to Canada and back.  Yes, you have been dealt a lousy hand.  I mean really lousy but you can still decide how to live every day.  I think it is important to take sometime to really grieve all that you have lost.  Then, I think you just have to decide how you want to spend tomorrow?  Take the power back from this beast of a disease and know that life can be very, very good again on the other side of treatment.  My husband actually told me he has never been happier than now, 7 months post treatment. It is a game changer for sure.  Your age is in your favor overall, so there is that on your side.  I don't think any of us are saying to insist on a PEG, just that it is something to remain open-minded about and in the end do anything, and I mean anything that you decide will get you  through this treatment.  It's up to you.  Stay strong and keep us posted.  

swopoe

JAL23 said:

Hi Swopoe,

Hi Swopoe,

I don't know you personally, but I want you to know that after reading your message I've been sitting at my desk sobbing. It's so hard to pull anything positive from this horrible situation, but I want so badly to be where your husband is now. I desperately want to feel normal again. I want a family and my life back. This has been robbed from me, and so knowing that it is possible to steal that life back is enough hope to keep me going.

Thank you.

JAL,

JAL,

we felt like you are feeling just two years ago. Like we had been robbed. My husband doesn’t smoke or drink and was hpv negative too. But there is life on the other side. Treatment is rough, but you plow through. You never know how strong you are until you have to be. Tomorrow is my husband‘s birthday. And he is still here.  Birthdays are what it is all about. Hang on for the ride. Prayers.

CivilMatt

Good Luck

JAL23,

Your case has taken a number of turns from your first post.  Are you up to 10 doctors now?

Regardless to all that has happened and no matter what Doctor Google says, it looks like there is agreement on treatment of this cancer with rads and chemo.  You are correct, this cancer is different.

In my opinion, they just looked at your age and thought, no way.

I also think, you need to get your head in this game to win.  Treatment can be rough and can kick the c _ _ p out of you.  Nutrition and hydration are the lynch pins; they are also the easiest and hardest to satisfy.  I drilled it into head that I would drink tons of water and swallow often. I ended up drinking about 10 glasses of water a day.  I had 2 PEGS and managed to drink one meal a day and the rest by PEG.  I was happy to drink my meals and had the PEG popped at 2 weeks post.

There is a never ending debate about a PEG or not.  If you need one, it is a life savior.  If you can swallow, you can drink your calories.

By staying on top of your condition during treatments, your team can adjust things to make you more comfortable, to preserve your hearing, to hopefully make life less miserable.

You haven’t officially started, so it is a little premature to garner 1^st place in the worse off category.  Some members really do have horrific stories and I don’t want anybody to travel there.

I was Stage IVa, scc, bot, 1 lymp node, hpv+ (surgery, rads & Erbitux). I am 6y 8m post, I do eat and taste most everything, my life is very different, but it is good.  I hope yours is good too.

Matt

 

johnsonbl

JAL23 said:

Hi Brandon,

Hi Brandon,

Thanks for the advice. I hear that constitution and mindset are so important in this situation, but that even the strongest of both get broken by the end of it.

If I am being honest, I needed to drop some weight a long time ago. My diet wasn't the best during grad school and I certainly put on some weight over the last few years. Not necessarily bad foods, more overconsumption than anything else. Maybe this is why my Dr.s aren't overly concerned about the PEG? Either way I think my biggest worry is hydration and being able to continue to swallow water. Guess I won't know how tough it truly is until I get under the mask.

Here's to the "fight" in all of us!

I lost 20lbs...

Over a 4 month period.  Age 42.  Started at about 200lbs.  At 180lbs now.  I didn't have chemo with my radiation (which is known to be harsher).  I didn't get a PEG tube.  I am one of the lucky ones who made it through relatively unscathed...but I do believe my hydration played a big part of it.  I drank water CONSTANTLY from the get go.  I used the salt/baking soda rinses from the start.  I was on gabapentin from the start as well.  My team knew to get me going early to fend off side effects as long as possible and I believe it worked.  Everyone is different and you've already been through a lot...  But you can handle more.  And you will.

Good luck!

 

Brandon

JAL23

Update - there is now a plan

Update - there is now a plan in place. I’m being treated with proton therapy out of Procure in NJ. My radiation onc is Dr. Nancy Lee from MSK Manhattan. They are going to do simultaneous cisplatin (3 mega doses) and knock this thing out of me once and for all. Everyone is saying I’m still in the “cure” box, but I’m quite skeptical of anything Dr.s say at this point.

the Procure facility here is beautiful. Big open windows, a fireplace, a snacks bar, and so on. A happy and calm place. I’m writing this as I am sitting in the lobby waiting for my simulation. I’m just imagining that I’m probably not going to feel quite the same way in a few weeks no choice right? I have to give this everything I got for my family, for my friends, and even for all of you. Time to get fitted for that dreaded mask, so I’ll update at a later time. Thank you again for everyone thinking about me. Here’s to shooting for the cure!

JAL23

CivilMatt said:

Good Luck

JAL23,

Your case has taken a number of turns from your first post.  Are you up to 10 doctors now?

Regardless to all that has happened and no matter what Doctor Google says, it looks like there is agreement on treatment of this cancer with rads and chemo.  You are correct, this cancer is different.

In my opinion, they just looked at your age and thought, no way.

I also think, you need to get your head in this game to win.  Treatment can be rough and can kick the c _ _ p out of you.  Nutrition and hydration are the lynch pins; they are also the easiest and hardest to satisfy.  I drilled it into head that I would drink tons of water and swallow often. I ended up drinking about 10 glasses of water a day.  I had 2 PEGS and managed to drink one meal a day and the rest by PEG.  I was happy to drink my meals and had the PEG popped at 2 weeks post.

There is a never ending debate about a PEG or not.  If you need one, it is a life savior.  If you can swallow, you can drink your calories.

By staying on top of your condition during treatments, your team can adjust things to make you more comfortable, to preserve your hearing, to hopefully make life less miserable.

You haven’t officially started, so it is a little premature to garner 1^st place in the worse off category.  Some members really do have horrific stories and I don’t want anybody to travel there.

I was Stage IVa, scc, bot, 1 lymp node, hpv+ (surgery, rads & Erbitux). I am 6y 8m post, I do eat and taste most everything, my life is very different, but it is good.  I hope yours is good too.

Matt

 

Hi Matt,

Hi Matt,

thanks for the reply and it’s always good to hear from you. I feel like at this point we are friends in the club no one wants to join, even if we don’t know each other personally outside of the forum. In fact, i often reflect on “Matt’s positive attitude and sincere advice” when it gets tough. Youve been a big part of how I’ve been mentally preparing myself for this.

i appreciate the honest feedback, and I agree with you that this is a beast of a diagnosis and a beast of a treatment. Maybe I’m not ”the worst off” just yet, but sometimes it gets overwhelming when I look at friends my age and i wish this hurdle wasn’t in front of me. But here it is and treatment needs to happen.

I would love to one day be a role model for future young adult head and neck cancer patients down the line, just as you are for many of us on the board. That’s the goal and the dream. Thank you again.

John

OKCnative

I'll just throw in my $.02.

I'll just throw in my $.02.

I'm young-ish at 47 and was in good health when diagnosed (SCC BOT Stage IV).

I too had heard all the horror stories regarding treatment and the side effects and pain. My treatment was the standard 35 radiations with 3 mega doses of Cisplatin.

My experience may be far from the norm, but, it's obviously possible.... Overall I never felt any worse than if i had the flu. I never threw up and was only stuck in my bed for about two weeks. I also never had a feeding tube.

I did have a consultation with the surgeon who would place the PEG tube just in case it became medically necessary and we'd have that step out of the way (it never did).

My reasoning for no tube was simple; It was a mental bummer and the docs wanted me to swallow water orally and do tongue exercises several times a day. I figured, why not just add my liquid nourishment orally then too (I was on liquids only for maybe a month or so due to throat pain). I also was warned that becoming dependent on the PEG tube for an extended period of time would make rehabilitation into eating solid food more difficult and could result in a 'woody' or rigid throat that may never tolerate solid food again. As a result, two months post treatment I can literally eat anything I want (had Mexican food with chips and spicy salsa last night).

Regardless what you choose to do in any of your treatment, it doesn't all have to be hell. I found that my mental outlook helped so much.

When I was forced to drink my liquid meals and my throat literally felt like fire, I went outside and looked out at our garden or pond to remind me why I was willing to go through this. I also do some breathing exercises I found online. Those really helped with anxiety.

Good luck to you!

phrannie51

I know I’ve been kind of

I know I’ve been kind of absent here for a little while, but I have to say something when I hear a story like yours.  You got dealt a crappy hand for sure, for that I’m truly sorry.

 Everyone here is pretty damned experienced with this beast.....we’ve either been through it or we helped someone else through it. Here’s what I know about the PEG....there is NO reason to “fight it with all you have”....that’s BS. If you never want to have to relearn to swallow, then PEG tube or not, you must swallow something (water, tea, coffee, a little Boost) every single day even if it feels like ground glass....BUT that is not the same thing as having to swallow every single calorie and all the hydration a person needs to get through treatment.  

As for the Cisplatin....it can affect hearing it sure isn’t a fact that you will loose your hearing.....you would want to report any ringing to your Oncologist. Cisplatin would make me a little sick and a lot tired for a couple days then I had 3weeks to recover before the next round. Most of us will tell you that this won’t be a walk in the park,  but I would also venture to say that the majority of us would say a year from now it will be you telling another newcomer that this is very doable. 

For now, put your anger about what happened to you on the back burner, and put your energy into kicking some cancer a**.  You’re in good hands now. 

P

lorijeannj

JAL23, how are you making out

JAL23, how are you making out?

SuzJ

You can do this!

Something you said - about being skeptical of being in the cure box - get out of that mindset - You CAN and WILL do this. You will WIN.

 

It's not easy, but nothing worth having is easy, right?

 

Rads and Cisplatin are not a walk in the park, but you can do this

I thought I was superwoman - that it was going to be  easy (hahahah) while I certainly don't feel like I had it as bad as some others, my armor got a little dented and my self confidence took a swift kick.

 

But I'm here, rads, cisplatin, neck disection later - Im here, and the expiration date I felt I had stamped on my back in january/february - has faded away.

A big part of the battle is believing in your team. Sounds like you have a good one now.

 

You are going to do this too, and you'll be here cheering others along 6 months after, just like I am.