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I'm done

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I have decided today to not finish my final 6 treatments. I'm sicker than I've ever been and the weight loss is getting concerning. In order to stop vomiting, I'm drugged constantly. I was given a clear path report back in March after my surgeries and rads were just to be done as a precaution. I physically can not continue. I can on sit straight up for 5 mins or less before I'm gagging, choking or vomiting. I'm right at the point of being admitted to the hospital for fluids and nutrition. Thank you all for the advice and support. I've never felt so horrible in my entire life. 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Why not do what you need to do to get the calories and hydration in you. Then decide what you want to do...

I totally respect your decision, but it's too bad that you have went this far and not get the most out of it that you can...

Anyways, just a thought...

Best,

John

cureitall66's picture
cureitall66
Posts: 842
Joined: Aug 2012

As much as I'm glad to hear you had a clear path report, I'd hope you can get to feeling better soon to do the radiation tx. 

I, too, respect your decision. But, I'm with Skiffin....would like to see you get your hydration and nutrition(maybe with PEG) under control and put your combat boots back on and finish off the recommended tx.

 

Hope you start to feeling better soon!

~C

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

 

with John and C . I hate to see you give up when you've come so close to finishing .  :( I'm wondering if some of your symptoms are due to being dehydrated ? Maybe if you talk to your Doctor and go into the hopital and get hydrated and some nutrition you would feel better and be able to finish your Radiation Treatments . My best to you whatever you decide .

Peggy

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

They arent recommending a peg as an option right now for some reason. my surgeon recommended 2-3 weeks of rads, the oncologist said 6 weeks and I'm saying DONE. I've had no food in 3 days that will stay down. Gatorade is it. I just can't do it anymore.  I feel like a weakling for saying it, but my body has been pushed well beyond  the limit of healthiness. I thought surgery was rough!! This has been much, much harder!! 

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

TracyLynn,

My treatment ended on a Wednesday. The weekend before I felt like I was done too. I was so out of it that I wasn't sure I could drive back to Baltimore on Sunday evening to face the last chemo (on Monday) and last three rads. I could barely swallow water. I hadn't eaten hardly anything and was losing weight rapidly. I don't know how or with what but I did it. I then shuffled over to outpatient surgery and got a PEG. I stayed in Baltimore two more days getting hydrated before going home.

The following weeks are a blur even upon reflection. The days just blended together for weeks before the fog began to lift and I began to function somewhat. Regardless of what you decide, hang tough. I know it's hard to imagine when you're feeling as you do now but it will get better. 

Are you getting treatment at a CCC? The reason I ask is because the Dr.'s different recommendations on rads. I've not heard of 2-3 (14-21) treatments. Six weeks (30 treatments) as what I received after surgery was the least number I've seen. Normally, that decision in a team setting has been made and not openly discussed with the patient. 

Positive thoughts and prayers

"T"

PS... from your profile:  

What have you learned from your experiences that you would like to share?

Never stop fighting. One day to the next can make a HUGE difference. Don't ever give up. God will never leave you no matter where you go or what you go through. When you need to cry, cry. Let it out. You'll feel much better :)

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Tracylynn,

everybody reaches a breaking point in treatment, some talk about and some keep it to themselves.  Treatment SUCKS no other way to say it but the outcome is LIFE! And that is priceless! I was 28 when going through this, newly married and no children yet.  I remember being so low one night, i had food aversion, if i smelled it i got sick.  I to could only handle GAtoraide in my tube and quickly lost 70lbs, so i went to bed and said to God that i was ready, i told all my loved ones that i loved them and went to bed at complete peace if the Lord would take me home.   When i woke up the next day, even after my normal mucus vomit, i said "ok Lord you must have plans for me and i will carry this cross with as much dignity as i can". 12 1/2 years later i suffer from side effects that annoy the crap out of me but i would still never trade any of that hell away to not  have had and still have my LIFE, i am now a proud mother of a beautiful 9 yr. named "Faith"!  Every decision you make is respected by me and all your family here!  But just like the others i hope you find that last pull of strength in your gut to pull yoursdlf through the rest, i promise 12 yrs from now you'll be happy you did!

whatever you decide I am with you along with my prayers 

 

God Bless,

Rachel

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

TracyLynn,

So sorry you hit the wall or shall we say your body hit the wall. If you can find a way to hang in there for the oncologist recommended dose, I would do it.  Either way I hope you feel better soon.

Matt

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

So sorry to read about the challenges you face. I would strongly recommend you get your team together to discuss your situation. If you are on less that 35 treatments delivering less than 70grays, then you are on some form descalation which has not been adopted into enhanced standard of care treatment options as offered in the NCCI directives and such.

This means you are on an inherently more risky protocol now and further reduction of treatments can only indicate the potential of increased risk to the efficacy of the treatment plan. There are always figures to throw for every occassion. One being lowered efficacy from less treatments. ONe figure is something like more than 1% for each day. So, if you are 5 down to start and 6 more, then this may indicate a lowered efficacy prognosis of 10+%.

Please talk to your team tomorrow to discuss other options than quitting. You are hurting big time for sure and frankly, probably not in the best decision making mode. Reach out to your team, they deal with this day in day out for probably decades.

God be with you on finding the best path forward through this very grim time. You can and will make it, just try very hard over the day or two to understand the long term side effects of all you accept as the new path forward.

 

don

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

My lymph nodes were involved so I did not have a choice. Knowing what I have been through and the long term effects of radiation, I think if it was precautionary I would have said no I will save it in case there is a reoccurance.  With that being said, I believe I read that once an area has been radiated, it cannot be done there again. I maybe mistaken but, if so, that could change your game plan. Yes, it was tough but I got thru by taking all the meds and basically sleeping 20 hours a day. I did not have the nausea but did lose 65 pounds. You'll be in my prayers that God gives you the strength to make the right decision for you. I found strength in the poem "Footprints in the Sand". many a day there was only one set of footprints going into that radiation room and they weren't mine.

Candi

katenorwood
Posts: 1808
Joined: May 2012

Hey there,

I haven't read your bio....should have.  I do understand your point of view.  I wanted to finish rads. and was told by the onc's that they may or may not help because my dx is rare, and not much known for tx's....unless it was stage 1.  Mine wasn't, and I had perinueral invasion.  I was hospitalized several times for severe unexpected complications to rads.  I cried so hard because I thought I failed.....I only made 11 tx's of rads.  This is your life, your body and none of this is an easy decision.  My suggestion would to be talk things over with your team, and step back for a few moments to make the right choices for you.  I'll be thinking only good positive thoughts for you !   Katie 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

.....maybe take a break....I was surprised when I finished rads, and they made a big deal out of the fact that I had never called in "sick" during their duration.....I didn't know we were allowed to call in and take a break, but I guess many people do!  However, one time the rad machine broke down, and I did have a 5 day break....it was amazing how fast I started feeling better in those 5 days. 

I'm kind of like John and the others on this....see how you feel by this coming Weds. or Thursday....you may feel so much better that 6 more rads won't seem like a huge deal.   

p

ET@cowboy
Posts: 15
Joined: May 2013

Sorry to hear you are having a bad time and feel like quiting. I am only three weeks out of Rad treatment myself. I can't claim to be an expert and respect your feelings. However, I had three surgeries and my surgeon stated I needed Rad tx as a precaution. My surgeon said the Rad treatments would be light. I ended up having 30 treatments that were pretty intense. When I question my onc about the heavy dose, he said even though your margins were clear after sugery micro cancer cells could be lurking in the head or neck area.  He said SCC is harder to treat on a reoccurance than the original cancer. Whatever you decide is really your desicion. Try to hang in there and maintain a positive attitude.

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

I understand how you feel I was only three days into 30 zappings and I was ready to quit because I had symptons they told me I would get 10 days in. I'm with "T" and we are sitting over here in the corner watching and asking you to reconsider. I am certainly glad I did for the reasons Don states. Communicate with your team, they deal with this all the time and will certainly have a plan.

      Jeff

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Tracy,

Aww hun. I'm so sorry you are going through this and feel like you just want to quit.  I can only imagine, but I also would like to ask you to reconsider.  Only because I care and I'm sure everyone in your life really cares and is concerned aslo.  I know all of these side effects have to be rough, but you can do this! You gave me such great advice for watching dad go through this.  6 treatments seems like nothing now that you are down to it.  I don't know about breaks, but I would suggest you take one if you can and defintely defintely like everyone on here said consult with your team.  See if they can make these last treatments more tolerable for you! Best of luck Tracy, hate to hear this.  I'm thinking of you and praying for you always!  Be strong whatever you chose!

 

Laralyn's picture
Laralyn
Posts: 433
Joined: Apr 2012

I remember how that feels, vividly. For me, the narcotics for pain caused gastroparesis (my stomach and bowel shut down) and I wasn't able to keep anything down at all. I was hospitalized twice (3-4 days each time) for it, and had to have hydration IVs every other day for almost 3 weeks.

My oncologist said I did "a little better than most" patients in terms of hospitalization time, which put it all into perspective for me.

It's your decision for sure, but here's my advice, having been through it: you're trading a couple more weeks of misery for potentially years more on your life. Think of it as betting $100 on something that will return $100,000 with 90% odds you'll win. Who wouldn't take that bet?

It feels endless when you're in it. I can promise you--as someone who was exactly where you are--that it ends and, a year later, it's just a bump on the road. 

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

I just remembered when I said "I am done, I am not going back". Not sure if I meant it at the time, what I do recall is having a sense of control over an uncontrollable situation when I said it. Just saying it made me feel better but I know now that it caused my loving caregivers a sleepless night. I woke the next morning and trudged over to tx. I think I did it for them and not myself but it got me there. Think it through.....

backachedp
Posts: 124
Joined: Oct 2009

My Husband was ready to give up near the end of rad's he was too sick but I said we have to do this and finish and he did and is very glad he did.  I know from seeing him how sick and what it does to you but I hope you try and finish....but it is your desicion....like others have said if you get rehydrated maybe you will feel a bit better and get some strength to finish...you are in my Orayers and hope to hear some good news from you that it is getting better.  You have come so far.

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

1- I remember my team telling me how important it was to have good teeth because if you have to stop treatment in the middle  you would basically have to start over- so I went to the dentist and had my teeth fixed

2- I remember my team telling me how well encapsulated the infected lymph node was when they removed it and they were sure it didn't travel- however rads and chemo has proven to be the best insurance policy - 

3- I remember going into treatment thinking I was not letting anything kick my ass - and about 20 treatments later I was saying uncle. I clearly remember looking into the mirror and seeing a cancer patient that had just lost 40 lbs.and asking myself why would I put myself through this, as dying has to be easier than this. I couldn't drink or eat anything without forcing it down including water, no matter what drugs they were giving me. I continued googling with the baking soda and salt mixture 7 or 8 times a day- magic mouth wash was my appetizer - I would take a swig gargle as long as I could then swallow it followed my something I could eat or drink - I still have boxes of it - I will give you my email if you want me to mail it to you - I was going through 2 bottles of it a week at the end

4- I agree with the rest - if you can finish the treatment then finish it- stopping now seems a mistake - but you know your body and its limits. I didn't know how tough the treatment would be. I will be 6 months out of treatment in a few days- seems like when I was in treatment the days wouldn't go fast enough and now that its over the months just pass by. You are going to get all the side effects, why not get all the benefits if you can.

stay strong and may your higher power guide you to your decision 

Ralph

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I spent 4 hours today getting IV fluids.  Do I feel better?  Not really.  I am more confused now than ever.  My surgeon told me maybe 3 weeks of rads, oncologist says "30 rads, I never do less".  My mom, aunt and uncle are the only people in my family that have had cancer.  NONE of them had 30 rads?  My oncologist said 30 was the magic number?  I'm waiting now to hear back from my surgeon.  Dr. K (surgeon) said that the chance of the type of cancer I had returning was less than 10%.  My oncologist said it's 30-40%.  What?  I've never been sicker in my life and it seems like my oncologist is confused on certain things lately...he came in to check on my IV (which had already been removed) and to tell me 2 more hours of fluids.  Um...I had already had the amount he prescribed.  Several other things like that, but I'm too tired to type out, but equally as strange.  My hubby and I left there today with a lot more faith in my surgeon and the cancer team than the oncologist I was sent to.  (He is part of the "team" but at another location much closer to my home)

 

Thank you all for the encouragement and advice.  I can't think too clearly right now, but I have had another oncologist tell me that he wouldn't have recommended 30 treatments.  It's all so weird.  I have information flying at me from all directions and I'm trying to process it all, but honestly until I can lay flat without jumping up to vomit, I can't do treatments anyway.

 

Sorry for all the whining...I am miserable and tired of being told different things.  

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

Dearest TracyLynn,  I feel so bad for you.  My brother got conflicting information, and is continuing to get different "stories" since the very beginning of his treatment (but not about major things like you are hearing) and it is totally driving him and his wife nuts. In my opinion, all you can do is pray about the decision you are going to make and have faith that you are "hearing" the correct voice in the answer you receive. While praying for the right direction to follow, try praying as well,  for the strength to go on.  We will be praying for you too. May God bless you, Tracy.

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hello,

As far as hydration, there are things less controverial, saline via IV is goodness for the body. Since you are really beat up, it may be hard to notice, but many times, you will leave infusion feeling better than when you arrived.

Based on how you describe your team, it may not be an integrated team that many of us seem to reference. When you go to a CCC, comprehensive cancer center, the team is made of members who really do work far closer and more often and tighter in the way a patient is seen, diaxnosed, treated, and receives support services. From the way you describe it, the different doctor specialists come from different practices and do not an integrared approach.

A key factor is a truely integrated team pretty much sing off the same song page. If there are a couple vialbe options those are stated but not in a confusing or conflicting manner.

Different doctors take the "lead" at different stages of treatment. If you can probe a bit, explain your confusion with too many different ideas being thrown out there and find out who is the "leader" for now and ask they all line up with this person or cleary articulate the different opinions amongst the team.   --   fully explain the conflicts. things will get better. hang in there. don

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Percentage wise on here, the majority has had 30 - 35..... Is your oncologist both for chemo and rads... Most here (I believe) have had both, a MD whose specialty is in radiation theraphy, and an oncologist specily in chemo, or mine is also blood..., and an ENT that is my main (lead MD)...

You can do three weeks like a few here...(if you do rads twice a day)..., sorry, a little attempt at humor.

You're not whining, nor are we professional MD's... We can only relate our experiences and stories...

We are with you whatever your decision...

I'm just one that prefers to be hit as hard as I can take and be done hopefully once and for all... If you feel you are at that point, that's a decison that you need to make and live with..., that's all that matters.

John

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

but I've been on this board for a while....never have I heard of anyone getting 21 radiation treatments....I'm trying to remember if someone had 28 (one person)....generally it's 30 or 35 radiation treatments for HNC....I always looked at those who were getting 30 lucky Smile.  I don't understand why the Onc and the RO aren't putting their heads together....is the "surgeon" an ENT??  If so, why aren't the three of them putting their heads together.  I've always thought the James Hospital in Cleveland did work as a team effort.

There can be confusion on IV rates....after having had 6 chemo's and countless hydrations....3 or 4 transfusions.....the fact is, the nurses control the rate you get what's coming to ya.....they walk around changing it all the time, too.....I swear on busier days, they'll stair step everyone's rate, so we all don't get done at once.  Even getting my port flushed since treatment ended, the time has varied a lot.....once it was two hours (ticked me off)......the next time an hour....the last two times 50 minutes.  Anyway, I don't think the Dr. being confused that you were already done is that big of deal.

I'm sure you're pretty darn dehydrated after being so sick for so many days.....3 days getting IV hydration might just perk you up more than you anticipate....the one time I got totally dehydrated I'd never been so sick in my life....and it wasn't just nausea, it was weak....it was dizzy....it was every thing crappy, except I wasn't thirsty.

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

Is calling my surgeon tomorrow.  Asking him where did the less than 10% come from if the oncologist is saying 30-40%.  I remember the surgeon showing us these charts and types of MEC and of course mine was one of the rarest out there.  He said that the tumor was sent to two major pathology centers and that's how he was basing his low percentage.  It's a big difference from less than 10 to 40!  

 

I can't even speak, so once my husband calls the surgeon and gets the info he needs, he's calling the oncologist and we'll make a decision based on the information gathered from them both.

 

I'd love to say "hey...just  hospitalize me for the remaining 6 days and let's knock it out" but we have NO insurance and currently owe $105k as it is.  Medicaid is a joke and keeps telling us "your chances would be better if y'all weren't married or if one of you would quit working".  Nice. 

 

Yep.  I'm frustrated.  Thanks for letting me vent.

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

That seems frustrating!   I hope you choose what is best for you.  I don't know what to say bc I don't know much about cancer,  esp your type but I hope toy do what your team recommends.   Best of luck, praying you feel better fast. 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

DONT QUIT! Never heard less than 30 rads. I had 7.5 weeks i think that was 37 and i was getting fluids everyday at the end.  I wiuld sit in RO room, vomit terribly after treatment, he would walk in i would sit straight up smile and say i was great judt so i could go home and sleep and not get fluids that day, never worked my Mom ratted me out. 

I hopd as you read all these you see that were all in same boat, but we are here to tell you about it!

God Bless you,

rachel

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

totally confuses me.  I'm in NC, not sure why that would make a difference, but my mom only had 15 rads.  She had a tumor removed from her breast, and the path didn't come back clear, so she had a second surgery to remove more tissue.  Got a clear path but had 15 rads as a precaution.  My aunt had a tumor in her chest (not breast cancer), and had it removed, clear path with 20 rads as precaution.  Both are completely fine and doing well :) The more local people I talk to, seems like only SOME have had 30.

 

I just want to hear from my surgeon AND oncologist.  My oncologist has called me FOUR times already this morning asking if "I'm better yet and ready to get started back tomorrow?"  Dang, I was puking until about midnight last night.  I told him that and his reply "I just don't understand why you're so sick, you don't look too bad"

 

Sigh.... 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

different measures.  I have a friend who had breast cancer....she too had 15 rads.....but breast cancer is a different type cancer cell....I don't know what cancer your aunt had, but seeing that it was in the chest, the chances are it too was a different type of cancer.  You are trying to compare apples and oranges.....the only thing they have going that is the same is they are fruit, other than that they are vastly different.

The fact that you had part of your jaw removed without clear margins, tells me loud and clear....that the standard treatment....that being 30 to 35 rads would be in order.  It would truly be the pits to find out in 8 or 12 months that the rest of your jaw has to go.  The rads are what KILL the cancer cells.  Keep in mind also....the lymph system in the head and neck area is very dense, unlike the rest of the body.....

Please try and think of this as a "break" in treatment and not the end of it.  The more you get hydrated, the better you'll feel.....I honestly don't think 5 or 7 days off will hurt much.....but it may save your life in the end. 

Your Onc may go to any length to get you back on track....did you ask him about Emend for the nausea?  It's high powered stuff....if you're half way knocked out, but not vomiting.....so be it.....as they say eat, drink and be sleepy Smile....if that's what gets you through this, then good.

p

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Tracy,

Phrannie gave you some great advice.  I too would be devastated if you (or anyone else, especially my dad) gave up and then later had to go through it again - or worse!  I really hope you continue even if you take a minor break.  I'm thinking of you dear.  Once again, I can't compare myself to any of your experiences bc I'm just here for my dad and to help offer what support I can.  I just know that thinking of my dad saying the words you spoke "I'm done", would devastate me. I truly think your quality of life will majorly improve once these treatments are out of the way.  I know all in all, the decision comes down to you... I think there is just so many ppl that care and don't want to see you EVER have to walk this road again come hell or high water. I know these types of decisions can't be easy, but try to think of your future and stay positive.  Prayers!  

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

P's right Tracy,

Two different animals. Squamous Cell Carcinoma Head of the Neck is a really nasty bugger. All cancers are bad but this one is one of the nastiest and the treatment is equally viscious. My understanding the standard is 30 rads minimum, usually concurrent with weekly chemo for a situation where the tumor was extracapsular.

Ask about Emend. I did Ok with the other nausea meds but around the 3rd-4th week I got pretty sick. They gave me Emend during my infusion and the other nausea meds by IV when they were hydrating me afterwards during the week. A few days break is Ok but I recall my RO saying during the last week and a half when I was going down hard that it was critical to the success of the treatment to keep going.

Do what you have to do Tracy... kick and scream and beat this beast into submission! Don't let "Jack" get the better of you! You've come so far and the finish line is within your reach. C'mon girl! Dig those heels in and fight! YOU CAN DO IT!

"T"

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

What exactly is Squamous Cell Carcinoma?  I honestly have never heard of it until this board.  

 

When I first was diagnosed I was told by the cancer specialist at Levine Cancer Institute that the type of cancer I had rarely responded to radiation treatments and if my lymphnodes were good there would be no chemo treatments required.  My nodes were all clear and fine.  He said if rads were required that it would only be as a precaution and there wouldn't be many required.  I've been digging up my paperwork :)  He said the surgery was my cure

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

Squamous Cell Carcinoma is what makes up the majority of H&N cancers. I hadn't heard of it until the ENT told me I had it! I was sure I had lymphoma of some sort. SCC is a type of skin cancer that can and does affect the mucous membrains as well (BOT, Nasophaynx, orthopharynx, etc.)

What type of cancer were you DX'd with?

"T"

 

 

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

 

 

I had a contained, 4 cm Mucoepidermoid carcinoma that had grown through my lower jaw bone.  They removed the entire lower. left jaw and sent the tumor off to 2 major pathology centers.  Everything involving my cancer has been "strange", "unusual" and "different".  I guess I should have expected this!  ;)

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Yep, it can grow both internally as well as externally....

I have a neighbor that has had it a few times on her ankle...

And like mentioned...the rads protocul is totally different depending on the area in question... I mean look at prostate cancer, they plant a radition capsul in some cases... H&N is one of the worse to treat, and pretty much gives you more bang for the buck as for collateral damage..., but it works.

JG

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hi,

A KEY resource to refer to for many things related to head and neck cancers is the list of related discussions listed here. Bookmark and reference often

Head and Neck Cancer Superthread

One if the items listed is a link to discuss SCC, most head and neck cancers fall into this type of cancer cell.

 

 

SCC

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I was browsing the superthread and missed this area! 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

mucoepidermoid carcinoma, the treatment is still the same for it as SCC.  The cancer was in her jawbone, and they removed part of her jaw...but did not have clear margins.  That's why I think her Oncologist is right on the money about the 30 rads.

Oh..BTW, Tracey.....thank you for filling in your Expressions page...it helps everyone to know what you have, and how the Doc's are dealing with it.

p

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

 

my doctors are having a disagreement.  I had clear margins after they went back in and took the rest of my lower jaw.  Pathology showed no signs of cancer even in surrounding tissue that was taken during the second surgery.  And my nodes were all clear.  The MRI showed that the tumor was very contained and with the clear margins, my surgeon recommended a "few" rads as precaution but he and pathology marked me as CURED.  The oncologist I saw downtown said he never does less than 30 regardless of what my surgeon wants.  He said "I don't care for surgeon recommendations" so of course I told him that I needed to have treatments closer to home at the location near my house.  Well, he discussed things with the oncologist I have now and he said 30 were required or I wasn't cured of cancer.  HUH?  I was given the all clear already from two pathology centers.  I'm just sick, confused and very tired.  

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

the Oncologist has more concerns about this than the surgeon?  ENT's handle HNC....and....they also handle a host of other maladies....all things ears, nose and throat.  The Oncologist handles only cancer.....he only reads about cancer.....all his updates are about cancer.  I'm wondering about maybe sending all your stuff to John's Hopkins (where T went)....it's pretty close to NC, and see what they say....when there are two Dr.'s disagreeing, why not a third to break the tie?

p

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

 

 

and that's why I was going with Dr. Asim Amin's suggestions from the beginning.  He it THE TOP Oncologist/Researcher with Levin Cancer Institue.  The Levine name is HUGE and he is their "top Cancer man".  He doesn't even do surgeries anymore.  He is the one to go to when you're getting your game plan.  He said surgery with minimal rads if any.  Same as my surgeon.  

 

I wish I could speak.  My mouth is so sore and full of spit that I can't make phone calls.  So, I am just relying on my husband and son to call/answer the calls for me.  

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

And I thought unknown primaries were rare at 1-2% of SCC H&N cancers... But yes, upon looking that up, treatment is the same as SCC protocol... and it's one of the roughest treatments there is!

"T"

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

5FU treatment (there is a reason for the FU after the 5, and we all know what that means Surprised), I honestly wondered how I was going to manage 2 more.  Two and a half weeks of bleeding mouth sores....nothing could get past my lips, not water or Ensure....I couldn't even lick them, and had to apply aquafor with plastic wrap because my fingerprint ridges would make them bleed.  After the second treatment I gave a lot of thought of how to get out of the third treatment, knowing what I was in for.  The day of that treatment I was in the "quit mode"....I literally had to drag my body, and let my mind stay at home (or follow if it wanted)....but I knew in my heart that IF I should ever have a reoccurance the pain of wondering if that last treatment would have made the difference.  

This is a ONE DAY AT A TIME disease...sometimes, one hour at a time.....tomorrow isn't any of your business, it will take care of itself....not to mention it'll be here soon enough.  Yank your mind away from how they treat breast cancer....or any other cancer, and stay with how they are going to treat your cancer.  That is where your work lies....No rads today...well, ok....but don't hang the "no rad" sign on tomorrow till it gets here.

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

 

 

I shouldn't just quit.  I can't lay back without vomiting, so they will have to figure out how to get me on that table if I go back. 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Flip you over face down..., LOL and reverse the machine direction...

OK..., so you see whay I'm Abi-Normal and in no way a medical professional...

JG

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

 

made me literally LOL!  

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Cheering you on!

I hope you pull through the last treatments Tracy!  I know it has to be uncomfortable...but I'm rooting you on!  Do it do it! ;)

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

I just want to hear from my surgeon AND oncologist.  My oncologist has called me FOUR times already this morning asking if "I'm better yet and ready to get started back tomorrow?"  Dang, I was puking until about midnight last night.  I told him that and his reply "I just don't understand why you're so sick, you don't look too bad"

Unfortunately, many doctors receive too little poeple skills training in med school. Somethimes they are not very empathetic or for that matter sympathetic. OK, so you "look' ok. The key takeway from his comment is he just plain assumes you are going to restart and finish. Even if you feel you told him you wanted to QUIT, it may not have registered because from his point of view this is just not realistic. Because you just do not quit with only 6 sessions to go, even you feel like absolute ****. Guess what, nearly everyone feels like crap but this treatmen plan is life SAVING and not completing greatly increases your chance you will die. So it really is a no brainer decision to complete treatment. There is PLENTY of room for discussing and negotiating a schedule that works for you and your doctors. Get the treatments reschedule and wrap this up and go to the next life SAVING phase. Best, don

 

Eddie J
Posts: 23
Joined: Sep 2012

Please call the American  Cancer Society , and they will connect you with a person in the cancer field on their  staff that can help you make the right decesions . I did and connected with  a ,25 yr s of cancer experience ,nurse from the NIH. She  talked to me for an hour and a half and set me straight on acceptable protocals and the best treatment path for my type of cancer . HNC stage 4 base of tongue and two lymph nodes . I am sure some one there  can give you the advise you need at this critical time.

Above all dont give up .

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

My oncologist originally said 30 treatments for me - at around somewhere in the 20's they told me I will be getting 7 more concentrating on the surrounding lymph nodes- I was disappointed but I did it. It really sucks that you are feeling so bad- hang in there,

 ralph

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hi,

A couple weeks ago, I heard this term called "boost" and it was a term for describing a different rad map that is applied at the end of the normal radiation treatmen plan, either totally different or just the last step in a single plan, not sure.

Either case, the last map targets the key areas where the tumors are found: primary and nodes. The idea is to reradiate an area known to have neoplastic cells and feeling it can only help to go zap that area one last time.

Where this caught my interest is how does this change the normal side effects if the map had not changed? Some ppl reported having some change in intensity of side effects toward the end of treatment or shortly after completion of radiation treatments.

I just have not had time to follow up with the dossimetrist to see if this is something that is done with the maps, this whole reradiating high risk areas.

 

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