I'm done

TracyLynn72 said:

I'm more confused now...

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.  

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

TracyLynn72 said:

My hubby

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.

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. 

TracyLynn72 said:

My hubby

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.

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 said:

The 30 rads minimum

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.... 

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 ....if that's what gets you through this, then good.

p

TracyLynn72 said:

The 30 rads minimum

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.... 

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 said:

a stupid question

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

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 said:

The 30 rads minimum

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.... 

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

Roar said:

By the numbers

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

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.