As many of you know I had my second combo Pet/Cat scan on Wedesday, May 19th. I was scheduled to see my ENT next Wednesday, May 26th. His office called me yesterday to rescheudle to June 2nd. I was ok with that but requested a copy of my test results be mailed to me as soon as they received them. They informed me that they couldn't send them. I was to get a copy from my radiation On'gist as it was he who ordered the test. I had no appointment set-up with the radiation doctor. He told me to alternate seeing the ENT and him every three or four months. The Radiation head nurse told me she would mail me a copy as soon as they received them.

In that case I told the ENT nurse to cancel the June 2nd appointment. I would get the results from my rad guy and would have no need to see the ENT. I told them I would call and reschedule if I felt I needed to. This seemed to upset them quite a bit.
I just didn't feel waiting two weeks for my test results was necessary. It didn't seem to bother the ENT office at all. Was I wrong to be pissed about this?

Dan

Dan,

No one should have to wait for their test results. You have every right to be upset. My doctors even call me with my results, and if they don't call quickly enough I call them.

You are the patient and the physician is providing a service to you, not the other way around.

Take Care!!!
Lynn

Dan,

You are never wrong to want to know your results as fast as humanly possible. My ENT scheduled my PET/CT for 9 am and his appointment the same day at either 11:30 or 1:30. He always demanded the written report for my visits with him so it is doable. We never went over them, though, because his HUGE smile was enough for me and he had the report in his hand in case I wanted to see it.

Initially, I had a round of tests, MRI, chest xray, PET/CT and he called me with the results as soon as he got them. I have done much of my follow ups with the medical oncologist nurse via email and only go in if they want to see me.

At the very beginning when the medical oncologist told me wife there was no sense of "emergency", only a sense of "urgency", I knew he bit off more than he could chew and she promptly adjusted his attitude using his mother as an example of how he would have viewed it from her perspectve. She then called the oncology psychiatrist we are friends with and everything changed with the human side of the patient becoming more of a focal point.

Ed

Ed

Why not just call the radiation oncologist office and ask them to fax or mail you the report? That's what I always did - of course my doctor told me in the beginning that I had a basic right to access all of my records and reports and always sent copies of everything to me.

And that is protocol - the guy who ordered the test should be the one giving you the report - not the doctor that the report was referred to.

It was a mistake to piss off your ENT - at this point he IS your primary care physician. He is the one with the primary responsibility of "watchful waiting". The regular physical/palpation exam is what is recommended by the NCCN practice guidelines - the scans are optional. I would "kiss and make up" if I were you.

Hi Dan
No you were not wrong to be pissed off at them.. but it doesn't work like that.. well not in the UK anyway.. I treat like 'God' the secretaries and appointment staff.. I'm on first name terms and yes I will admit to a bit of crawling if I have to.. but we don't pay up front like you do.. so kick some ass..
Love and Hugs
Helen

Daniel: My ENT would not discuss my results over the phone and told me from the get-go that all results had to be discussed in person in case of bad news. It was also at least 1 week to 10 days before he got test results, so the waiting game is familiar and not pleasant. However, you have to live with it I suppose. I don't think its ever a good idea to get pissed at or piss off your health care people, but I will probably never see my ENT guy again as all of my follow up will be with the chemo/rad/surgery team. So if you don't have the ENT in your future, I wouldn't worry about it. But, I don't think they should have been angry over you cancelling the appointment as they had told you to go to another doctor. That may be a way to open the subject to smooth things over if you choose to, ie: asking them if there was a problem as you sensed they were angry when you cancelled ... etc. If you want.

I don't know how ed got such fast results. Same day? Maybe were just under-represented down here in Miami on the dogs tail (geographically) and our labs have too much business to get same day info like that. I'm jealous.

Hello All,

Gary, I did keep the appointment for June 2nd. I know what you mean about him being my best shot.

My radiation doctor just called me after receiving a phone call from my ENT this am.
The report shows multiple areas of concern in the chest and lungs as well as in the surgical bed. The area has spread alot since my 1st scan in January. I am kind of blown away right now. Feels like I got run over by that bus we always joked about.
The rad doctor suggested waiting for the June 2nd appointment and they might do a biospy and want to try chemo. He made my case seem very grave.
Wonder if I'll be around to attend the reunion?

Thanks to all who have helped me.

Dan

Danny Boy
Don't you even dare joke about not being at the reunion if I can get through surgery and drag a blind protesting husband to Vegas.. you can bloody well get there too..
love ya danny boy
Helen

Dan-- your last post broke my heart as you've been such a source of inspiration to many of us...

If things are "grave" why are they making you wait until June? It seems like you should be moving to the top of the list so to speak...

I'll definitely be lifting you up in prayer!!

Eric

Dan,

I don't hear the fat lady singing yet, so don't you dare give up! It's not over til it's over! I know "multiple areas of concern" doesn't sound encouraging, but try not to dwell on it. Tests have been wrong before. A biopsy will be more definitive.

Sending lots of hugs & rainbows,
Rosie

Hello All,

Just got off the phone with my ENT. Told me that additional surgery and more radiation is not a viable option in my case. He suggested I see a medical on'gist for a possible agressive form of chemo treatment. He didn't think it could be cured by it but it would (may) prolong my life.


The report states "in the right pharyngeal mucosal space, involving the lower nasopharynx and superior oropharynx, there is increased soft tissue that has a maximal SUV of 9.36. Maximal SUV in this area before was not as impressive.

There is also increased activity now involving the soft palate with maximal SUV of 7.57. This is actually more impressive on the left than on the right. Metabolic activity in this area has also increased. In addition, there is some increased activity now seen at the left floor of the mouth which has significantly increased from before. This appears to be in the region of the geniohyoid muscle and sublingual space. There is no definate mass in this area, but again metabolic activity has markedely increased from before.

It goes on to talk about multiple pulmonary nodules shown now. The findings are very worrisome for recurrent neoplasam. in addition there is also increased metabolic activity involving the soft palate now compared to before,
which is of concern as regards possible neoplasam.

I will be seeing a Medical On'gist as soon as possible and after input from her and my family I will make a decision as to what path I will follow.

I wanted to Thank everyone who has responded to my posts and gave me support and information. I can't express how much this forum and it's members have meant to me. Only someone going thru it or a caregiver would no.

Your Friend, Danny Boy

Dan,

I am totally speechless and staring at this box through tear flowing eyes. I am so sorry of the news and the terrible waiting game you are experiencing. We were diagnosed just days if not hours apart (7/18 for me). I wish I knew what to say to encourage you to keep fighting; I wish there was a way I could immediately comfort you; I wish I could cure this dreaded disease; I wish there was something I could say to inspire you. You have been my beacon, my source of energy. I will pray extra hard for you and I will have everybody I know praying for you. Please hold on to your faith right now. I love you, bro!

Ed

Right Danny Boy
You have this weekend to sort this.. is unaceptable to wait this long.. so come on get your head round this.. Monday Morning do something .... plead.. beg.. pay.. what ever.. come on you are not in sales for nothing.. get this appointment moved..I couldn't wait that long so I'm sure you can't..
come on danny boy
love ya
Helen

Danny,

There are many of us out here who are saying "Oh S**t" But it may be easier to just say my heart bleeds for you. The unknown is scary and until you can wrap your head around this and see the oncologist there isn't much anyone can do to help.
Except to say we are with you.

I have sent you a private email about an hour ago.

Please know it's not too hot in San Antonio right now. And I have a spare bedroom.

Dinah

Dan, I don`t quite know what to say to you except the old adage of "it aint over till its over".
If there was just something we could DO!
Please keep the faith and may your God go with you.
Marica

Say it isn't so Danny Boy! There's been enough bad news around here this week. It's making me real nervous.

Think "false positive"!

I'll pray for you...

Dan,
My prayers are with you too. Don,t give up.You are never alone here.

Diane

Ah, Danny........I don't know what to say. SH** seems most appropriate right now as I am in shock over this too. And like Ed, the tears are flowing. OK.......God leads you to it, He will lead you through it. We KNOW this....let us give it credence.
Love you, God bless you and prayers are flooding heaven,
Judy U
Warm in Vegas too if you want to come early! Extra rooms!

Thank You all sending me emails and for responding to my post. It means more to me than I can express. I plan on spending time with my family and won't make any decisions on treatment until I see the medical on'gist June 1st & my ENT June 2nd. I will keep this forum posted after that.

Thanks again, Dan

Danny,
Geez, I don't know what to say. I wish I was closer so that I could be of some help.
Love,
Minnie

I have come to learn that these false positive post are the most emotionally destructive of all. Clearly, PET scans have been patient driven. We read about them and push our physicians to do them and then we minimize their reliability when they go bad. I hate to say this, mine was on the money! I have lung mets and had a wedge resection on 5/6/04 and my next step is up in the air. I have avoided posting here for many reasons, most prominently being my heretofore poster child recovery. The most disturbing aspect of my PET scan results was the ultimate realization that they were accurate. I had all the doctors, not involved in my pet scan, telling me that they are often wrong when what I needed was guidance as to what to do now that I may have a reoccurrence. Dan, the other shoe may have dropped here and you need to clear your head and decide where to go. I have elected to fight. I agree that it aint cancer till the biopsy but I think you will be better served if you assume it is, and be happy if it aint! You have displayed a remarkable dedication to this forum and when a supporter like you may be facing a reoccurrence it is doubly unsettling. Ground yourself like you did when you dealt the initial diagnosis and get on with the fight!

Danny,

I had to go back and read and re-read your posts. My heart aches for you. At this point it is just a scan and my mom's PET/CT scan in October showed absolutely no cancer and then in Novemeber there was a recurrance. I don't know how I feel about those things......Is there anything that the doctors feel when they palpatate the area and I'm confused as to why they are already giving you options for chemo etc without a biopsy?

At any rate I am praying so hard for you right now. You are such a warm hearted man and have been such an inspiration to so many. My baby Keeley and I will be keeping you at the top of our list in our nightly prayers.

Hugs & Prayers,
Dani

Hi Dan, by judging from the high number of posts in response to yours within a day can simply reflect how much you are cared about by others. I am sure you won't disappoint us and will do your best to fight. Things move so fast that I share the same doubt as Dani: how can your doctors decide on treatment so early when the diagnosis is not yet confirmed? Take care and be strong. All your friends are standing by your side.

Karen.

Danny, My thoughts and prayers are with you, Keep Looking up!!!! Carol

Dan, My thoughts and prayers are also with you.
David

Glen,

It is good to see you back. I have been thinking of you and hoping for the best for you. I am sorry that the final news turned out lung mets for you. I will lift you up in prayer and I hope for the best possible course of treatment for you right now, too. No matter what, never give up the fight! We are in your corner doing what we can to support you.

Ed

Dan,

I think the answer to Karen's question about deciding on treatment is based upon you clinical history. I had many physicians tell me after my chest CT that based upon my history there was little doubt about what was in my lungs. They only did the biopsies to prove themselves wrong. I think your physicians may be taking the same approach. I think they would love nothing better than to be wrong in this case. I would love it too, but I think you probably, realize as I did, it's doubtful. I will pray for a miracle and hope for the best.

I am still stunned about your recent posts. I was on the site several times yesterday and these were posted after I checked the site. I am so sorry you are having to face this enemy again.

I care about you!!!

Lynn

Hey Danny,
Hadn't been on the board for a little while, and obviously was heartbroken with your news. I pray for you everyday and will continue. May God be with you and your family and may He heal you from any more cancer. I struggle daily with fear and you are such an inspiration to me in this daily fight. Stay strong, and know we are with you in spirit!
Deb

Dan,
I posted a few minutes ago here but can't see it yet, so I will post to you again.
I haven't been on the board much, and was so sad to see your latest news. Please know that you are in my prayers everyday and I will lift you and your family up that it isn't more cancer and that God will comfort you during this most difficult time. Keep us posted!
Deb

We're sending you prayers and hugs from Kansas, Dan.

Lisa

Danny,
Please think positive thoughts right now. No one has confirmed anything and if this turns out to be false then you will have spent days of worrying for nothing. There is ALWAYS hope and I think that is what you should be hanging onto until you get any type of negative news. Reality can come IF you are told there is more cancer. Lots of people have had these same things happen and it turns out to be nothing...........Praying steadily that you will be one of them.
Minnie

Dan,

I don't even know how to begin. This just sucks.

I am back from a trip to Scott's river cabin, where I spread his ashes at his favorite fly-fishing spot. I still have trouble believing that he is gone even though I held his hand and watched it happen.

Some have asked here why docs are assuming the worst without biopsies. Well, the same happened for my husband. We did ultimately get our biopsy, but the doctors had already given us the "there's nothing more we can do for you" speech. We sat stunned, then I silently cried and Scott rubbed my arm and squeezed my hand while the doctor told us about chemo that might give us a few extra days or weeks. The oncologist did NOT want us to bother with chemo since it might alter his quality of life; Scott, however, could not stand to do nothing but wait around to die, so he insisted on taking one of two options that would allow us to remain at home and not travel to the hospital. Our options were chemo pills--Xeloda or Iressa. We chose Xeloda. We were told there was only a 10-15% chance of it doing anything to slow the cancer. That was at least something. They gave Scott 2 months to live. We contacted Hospice even though we felt it was too soon to do so (it wasn't). He died 7 weeks later.

Did the Xeloda help? I think it did initially. Scott took two rounds of it: took it for 14 days, then off 7, then took it 14 days again, and then no more. We could actually see the progression of the cancer since it was metastatic to his skin (horror story there), and I am certain that it slowed during each round of the Xeloda, then accelerated each time he went off. So, did it buy us more time? Not from doctors' predictions, but I think it did buy us more time because that cancer was growing and spreading so fast that I don't think he could have made it one month had we done nothing.

Doctors kept reminding us about quality of life. I totally understand that. Scott's quality of life did change drastically, but from the cancer, not from the Xeloda. He had no side effects from it that we could tell (except slowing in growth of the cancer). He probably had more side-effects from the cancer and the pain med--morphine--like feeling exhausted, groggy, unable to concentrate, etc. During this time, we spent every minute together, did not insist on tests (no point) or visits to a doctor (when we needed him, our hospice doc came to our house!) We spent our days how we wanted, sometimes just sitting and holding hands; sometimes watching TV, sometimes napping, crying, or talking.

Dan, during this time that you must wait for your doctors' appointments, I know you will feel or are feeling a combination of numbness, intense loneliness, heart-ache, anger, helplessness....Scott and I went through all of that. Acceptance was the hardest. It nearly killed me to think of him having to accept that the end was near after he had fought so valiantly. He had been the poster child of positive attitude; even doctors had thought he had a good chance to beat the cancer because of his attitude and will to live!

Ultimately, though, he hung on to the things he loved to get him through--his family, friends, good literature, music, his kitties...The cliche "take one day at at time" became one hour, one minute, at at time. Whatever he could handle. You do the same. Allow yourself to feel however you need to to get through. Know that whatever you are feeling, there are those of us who truly do understand.

love,
Christine

Hey Danny,
I posted here two times last nite to you and I still don't see them, so I don't know what is going on! I just wanted you to know that my prayers go out to you and your family as you face these new and not so good circumstances. But God is good and does answer prayer and I pray so hard for you that there is treatment that you will respond to.
Know that my thoughts and prayers are with you!
Debbie

Holly s*#@! I go away for a few days to keep my own appointments only to come back and read this news. Dan, I'm terribly, terribly sorry to read about your scan results. My heart goes out to you. I hope you find a solution to this soon!

-Brett

Dan-
I too have been out of town and am saddened by your news. Your posts have brought you into many of our lives and have touched us all. I will add you to my growing prayer list and know that prayers are headed to you and your family. There is a better place beyond that doesn't include sickness and tears. I look forward to meeting you there. Love, Kris

Danny I too am so so sorry to hear this sad news. It is a slap, a jolt it is heart wrenching when the "C" desides to show its ugly face again. God be with you and your family. These words I pray can help you. When I was told the second time, those words did not help me,,I am sorry to say that but they didn't. I was just knocked off me feet. Blown away. Turned inside and out. I wish there was something I could say to you that would make all the difference in the world, if there is I am at a loss to think of it. God Love you Dan, We will all pray. And pray again..Whatever it takes,, it seems to me that with this radical neck disection, the cancer is heading straight for everyones lungs,,What is the deal here, is this what we all have to look forward to. I mean we have already had this horrible surgery only to have this happen, I dont get it..Love to you Dan, Always Vicki

Dan: Very sorry to hear your news. Things don't look to good right now, but remember that PRAYERS WORK! And from the looks of the previous posts, you are being prayed for a lot. From here, also. Try to put it in the Lord's hands and remember he will do that that is best for you. I pray his healing touch will support you and your family through this coming trial and into the future.

Danny,
I too was out of town this weekend and just read your post for the first time after seeing it referred to in another string. I am so sorry and wish all the best for you. Sometimes I think that I am invulnerable, like I used to be before the cancer diagnosis, and that the Big C is behind me forever. This is a sobering reminder that we must live our lives today as none of us are promised tomorrow. I have enjoyed your enthusiastic attitude since you came on to the forum. You have been a great inspiration to a lot of people.
Hang in there old dude...you never know.

Danny G.

Hello Brian,

If there was any doubt about the value of your website I know it's been put to rest. The number of responses to my posting of May 21st almost blows me away.

At this time I want to thank all the members for the kind and loving responses. It truly is a
"Band Of Brothers" I can feel the love and pain in the responses.

Thank you Brian and Ingrid.

Hi Danny, my thoughts and prayers are with you......Love, Carol

Danny... It is I who should be thanking you. Ever since your first uncertain post, I have watched you grow. You have consistently, right from the beginning, reached out to others coming behind you down this rocky road. You have often been the first to greet newcomers with words of inspiration and hope. You have always been the first to send a check to OCF when donations were asked for, and you have been a force in trying to get the group together in real time face-to-face Las Vegas. You have worked to get OCF and I onto your local TV stations. Hell, I think you work this site as hard as anyone ever has. Now the tables have turned again, and it is our turn to try to ease your concerns and fears, and to repay some of the kindness that you have given so freely to others. We are all here for you as you face this next step. It

Danny, I'm crushed. How much more can our hearts take. I've been away from the board for a while, while Don is recovering from April 12 surgery. I came to the board this morning to check in on everyone and picked up a thread that suggested there was trouble in your corner. A search of your resent posts and I was jolted into reality. Fellow Packer fan, I'm so sorry. I'm praying hard as well that the Dr.s can find SOMETHING to help you fight. If a miracle is what you need then SO BE IT in Jesus name I pray, AMEN
Stay strong Danny and keep up the fight, we need you here!
Love, Hugs, and Prayers, Karen