#54911 05-21-2004 05:25 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | 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
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#54912 05-21-2004 05:55 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 164 | 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
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#54913 05-21-2004 06:54 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#54914 05-21-2004 06:55 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54915 05-21-2004 07:24 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | 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
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#54916 05-21-2004 07:24 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | 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.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#54917 05-21-2004 07:31 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | 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
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#54918 05-21-2004 07:35 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | 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
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#54919 05-21-2004 08:55 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | 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
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54920 05-21-2004 09:28 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | 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
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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