I'm done
Comments
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Rare indeed!phrannie51 said:T....Tracey has MCC...
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
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"0 -
After I'd had the firstphrannie51 said:T....Tracey has MCC...
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
5FU treatment (there is a reason for the FU after the 5, and we all know what that means
), 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.
p
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Do you understand whyTracyLynn72 said:I think that is where
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.
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
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SCCfishmanpa said:SCC
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"
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
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I agree...phrannie51 said:Do you understand why
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
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.
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You're right....phrannie51 said:After I'd had the first
5FU treatment (there is a reason for the FU after the 5, and we all know what that means
), 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.
p
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.
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Easy Solution...TracyLynn72 said:You're right....
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.
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
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So thatSkiffin16 said:Easy Solution...
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
made me literally LOL!
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I had the "boost" for the lastdonfoo said:extra rads
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.
10 days of rads....the only thing I noticed was the time on the table was severl minutes shorter.
p
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Cheering you on!TracyLynn72 said:You're right....
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.
I hope youCheering 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!
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30 here
I read all I could about my disease SCC BOT Stage4 and went into the meeting with the RadOnc and MedOnc after chemo (I had induction which comes before Rads) which completely eliminated any trace of my disease and tried to argue that I had found some researchers that were doing 25 Rads instead of the 35 they wanted to do. The RadOnc looked me square in the eye and said he believed that anything under 30 was close to malpractice. He actually used that word. Sat me right back in my chair. We agreed on 30 and moved forward. Please try and finish, i know how hard it is believe me, but it's your life.
Joe
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Get better adviseTracyLynn72 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....
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 .
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ahhhhhh
2 rounds of fluids, a PEG and some actual nutrition going into your body can make such a difference! Last week was no treatments because I simply wasn't healthy enough. Time to get this thing DONE
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glad the 2 rounds of fluidsTracyLynn72 said:ahhhhhh
2 rounds of fluids, a PEG and some actual nutrition going into your body can make such a difference! Last week was no treatments because I simply wasn't healthy enough. Time to get this thing DONE
glad the 2 rounds of fluids and peg helped. keep the great attitude, ur on ur way now.
dj
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sorry to hear
Sorry to hear that things are so difficult. This treatment is truly horrible. I, too, was nauseous most the time. I started receiving hydration IVs mid-course of my radiaition to help me remain hydrated and I found this helped a lot. Dehydration and malnutrition can cause nausea, too.
Ask your doctor about a short break from radiation rather than discontinuing entirely. Consider the PEG tube for nutrition.
Others on this site advised me, when I felt like you and said I couldn't do it, how I would feel a year later if the cancer progressed and I regretted quitting. THis motivated me to get through each day, as horrible as it was, and I made it. THe short term miserableness will pass and then with full treatment you have the confidence to know that you did everything you could to kill the cancer.
Ask your doctors and nurses for information and help so you can get through. Later, after doing everything you can to continue, you still can't do it anymore you can make your decision to quit.
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Good for you!TracyLynn72 said:ahhhhhh
2 rounds of fluids, a PEG and some actual nutrition going into your body can make such a difference! Last week was no treatments because I simply wasn't healthy enough. Time to get this thing DONE
Glad to hear...you will be done before you know it!
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