#67642 01-15-2008 05:32 PM | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | i went back to ent today he couldnt give a clean report like last time.said he wasnt markedley concerned the spot he saw wasnt like last time.HE did move my prt up a month.he said it wasnt ulcerated. but my vocal cord was swollen.told me twice he didnt want to scare me.im so scared .
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Well done for starting your own thread! If he says don't be scared, don't be! I know that's easier said than done, but at least you're being 'dealt with' sooner, rather than later--hang in there!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Good answer Brenda. Listen to her lolita and don't think about, LOL as if that is easy, but Brenda has been thru all the hell there is and gives good advice.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | THANKS guys it is so hard.i can go to dr and walk out and never remember what they said . seems i only hear the scaary parts.should have wrote it down now iwonder if that is what i heard .so afraid it will go some where else.now afraid for the pet since they moved it up.i know this sounds crazy.
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Lolita,
We always tell people to take someone with you to help you remember. If that's not possible, take a recorder and tape the visit. If that's not possible, tell the doc to slow down and write his responses down so you can read them later. Write your questions down in advance as well.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2006 Posts: 46 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2006 Posts: 46 | Lolita, You can also ask the doctor for a copy of the chart note that will be generated after your visit. It sometimes takes a bit of time, but that medical record is YOURS and you have a right to a copy of it. If there are things you don't understand, you can take the note back in with you at your next visit and ask for clarification of terms and whatnot. Good luck!
CG to spouse, tonsillar SCC, T2N0M0, tonsillectomy 9/06, 35 rad tx finished 12/06, no chemo. Positive PET 3/07 in tonsillar fossa (residual tumor), surgery 4/2/07 composite resection tonsillar fossa and BOT w/forearm graft and right ND.
| | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | Hey how is every one doing//? Im still learning to type on this.Can any one tell me how to stop this ear ache.?Igot some pain pills be afraid to take them.Went back to ent mon here is what he said.there was marked edema of the right arytenoid.what could that mean. And there wasa nodular apperance to the cord its self.when i go back he will see if it is gone along with the edema.they moved my pet up.to feb instead of march.if it is still there then a bio nothing in the neck every thing else was clear. pray it is gone and nothing else shows up .im so afraid it is going to move some where else thank you so much
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Lolita. 2 things. You should never leave the doctor's office without understanding what he is telling you. Never. It is his responsibility to explain it to you in a manner that you will understand it. Don't worry about him thinking you are dumb, or whatever, you can't make good decisions unless you understand things, and he's the guy that is supposed to explain it to you, in plain English that you understand. But if you don't tell him that you don't understand, he isn't going to make any further attmpt to explain it in simpler terms.
Number two - you are asking people on this board how to stop your ear ache, which no one here can actually tell you. We are not doctors, but it stands to reason that if you took the pain medication that the doctor who does know how to stop it gave you - the pain would go away. Does this not seem logical to you?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | DEARbrain thank you. im going to get my onc to explain my vocal cord nodual to me ,. it just scares me that they moved up my pet scan,. im so afraid it has moved some where else.he said he didnt want to scare me .we will do the pet then if it lights up a bio after he looks agai with the scope.im so scared i feel like giving up.
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | C'mon Lolita---I haven't given up yet--none of us have! I think what you need, besides talking to your oncologist, is someone maybe just not in the medical profession to talk to you. Personally, as well as coming on here, and having a loving partner, I couldn't cope without my network of friends--and over the last couple of weeks the 'designated' support workers attached to the Health Service. Have you close family and friends? Does anyone come with you to appointments? If not, can someone on here recommend a support service available/accessible for Lolita in her area? As we all well know--cancer isn't just in the body! Hang in there Lolita, we're all thinking of you and it sounds like you shouldn't need to worry as much as you are, but I know that's easier said than done!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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