#20780 07-28-2006 12:17 PM | Joined: Jul 2006 Posts: 16 Member | OP Member Joined: Jul 2006 Posts: 16 | hello all,i just found your site.i had started standard rad. after biopsy 3/04.because of side effects and bad teeth was forced to stop after 2.5 weeks,i asked the doctor if he could treat just the cancer and spare my healthy left side and thyroid.I wasn't aware of other approved forms of radiation.he refused and never told me what i asked for existed,but not at his hospital.It wasn't until 2005 i heard a n.y.c. radio ad for stereotactic rad.But too late for me,i had already had another 5 weeks stan. rad but because of time lapse with poor results.last year i had 5 weekly stereotactic treaments,they claimed cancer stabilized.now its back,i'm signed up for more stereotactic rad. but at this point surgery seems inevitable.i'm concerned about total radiation received.can anyone tell me of doctor in new york state who performed successful rad.neck dissection with minimal complications? thanks,sorry for length.
lyle.4
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#20781 07-28-2006 02:39 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Hi Lyle 4, I'm sure you will be getting more advice from others on this board, but the first thing to consider is whether you are being treated at a comprehensive cancer center in upstate New York, that is experienced with oral cancer and takes a team based approach to treating the disease. A team will often include a surgeon, medical oncologist, radiation oncologist, oral surgeon and/or dentist. It sounds like you have a case that needs such a comprehensive approach. This page on the Oral Cancer Foundation site, http://www.oralcancerfoundation.org/resources/cancer_centers.htm, will show you the possibiliteis for upstate New York. Best, Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#20782 07-29-2006 09:42 AM | Joined: Jul 2006 Posts: 16 Member | OP Member Joined: Jul 2006 Posts: 16 | Dear SSAX thanks for offering information,I do appreciate it.In the two+ years since i've been diagnosed i've become aquainted with cccs'.I've been to roswell park in buffalo.I had an app't for 2pm,i'm always early.There were at least 20 people in the waiting room for one doctor,a nice old lady told me her app't was for 12noon,it was already 1:30.i've been to university hospital in syracuse while waiting had plenty of time to see examples of the doctors' handiwork,oozing traecheotomies etc.amid the atmosphere of a bus station.I moved from n.y.c in '99 to take care of my father an m.d.with parkinsons' who passed jan06.I would of had surgery originally but my father didn't want me to go and i couldn't find anyone to stay with him,and yes we don't have the warmest of feelings for many doctors.So here i am no friends,no family in the middle of nowhere with chronic pain and no doctor.I am supposed to start anothe 5weekly stereotactic sessions this weds.how many times can they do this?i already had 7400cGy rads. before stereo-tactic,now i find he's being sued,which for the numbers he sees is inevitable in this day and age,but it doesn't reassure you.I need an emergency app't with an experienced surgeon with a good history,and a ccc, you're right.i called PA. they told me because of medicare rules i had to seek treatment in my state.thanks again for your time ,lyle familywould
lyle.4
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#20783 07-29-2006 11:24 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Lyle,
Admittedly, upstate NY can be kind of a wasteland in terms of good cancer care. BUT Sometimes being kept waiting just means a good doctor in high demand who won't be rushed with patients even if he has to work longer hours. Under these circumstances, I'm more than willing to wait. Roswell Park is a CCC and should be where you are going for another opinion right now. Oh, and I would go to the main campus in Buffalo, not their satellite in Ithaca (Ithaca is where I was treated with radiation but it does not have specialists in head and neck cancer).
I have also heard pretty gpood things about Upstate Medical (formerly University Hospital) in Syracuse, but I think Roswell Park is really what you need now.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#20784 07-29-2006 11:38 AM | Joined: Jul 2006 Posts: 16 Member | OP Member Joined: Jul 2006 Posts: 16 | Thank you,Nelie,yes the day i drove four hours to roswell park i had to be home to take care of my father,or i would of waited,the doctor appeared as exhausted as some patients.I had an app't recently to see dr. strominger in ithaca,he's an ent surgeon and one of the few up here whose a member of ,sorry i can't remember the acronym,a national org. of ent surgeons.ever hear of him?I haven't seen him but will call on monday,they're all booked weeks in advance.thanks and best wishes to you.
lyle.4
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#20785 07-31-2006 12:03 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Lyle, We aren't supposed to mention doctor's names here or I would have told you. Strominger is my ENT. He has excellent training and credentials and did my partial glossectomy and neck dissection. I would highly recommend him. But he is not a radiation oncologist and there is not really a head and neck cancer TEAM at Cayuga medical--it was my impression you were looking for someone to give you advice about radiation. Anyway, feel free to PM me and I'll let you know more about what it was like being treated here.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#20786 07-31-2006 01:45 PM | Joined: Jul 2006 Posts: 16 Member | OP Member Joined: Jul 2006 Posts: 16 | thanks again nelie,i read your message after changing wording under treatment.i gave up on introduce yourself,i don't know why only two people responded,yes i will get app't with that dr. from ithaca.I have app't wed.8/2 for pet scan in n.y.c.before continuing radiation,hopefully i can get a surgeons' opinion by then.thank you very much.lyle p.s. i may privately message you in the future,when i know more,thanks for offering,lyle
lyle.4
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#20787 07-31-2006 02:38 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Lyle, There aren't that many people here that post regularly that are from upstate NY. I am confused about your current state of affairs. Am I understanding correctly that you have been treated with radiation by a radiation oncologist but do not currently have an ENT/surgeon? or are you just interested in finding another ENT/surgeon?
It sounds from your original post like you had radiation, which was terminated early--or had a very long break in it, I'm not clear which--and nothing else for your first occurence of cancer and that's it? No surgery? And now you have a recurrence? Or did they never really get rid of all the cancer? People can give you better advice here if you clarify what's going on a little.
I will say this, it sounds to me like you need to go to a CCC. You have either had a recurrence or your cancer was never treated successfully the first time. That is very very serious. You need to be somewhere where there is a team of doctors who specilaize in head and neck cancer only and work together in your treatment. You also need to be somewhere where the latest medical research is going on so you have an opportunity to get in on some clinical trials if they look promising. You don't need to bbe shopping around for surgeons. You need to be shopping around for the whole package and the only place you get that whole package is at a CCC.
A friend of mine's husband had throat cancer and was treated at Sloan Kettering in NYC, which is one of the top palces in the country. If Roswell Park didn't impress you go there. Go soon.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#20788 07-31-2006 04:06 PM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2006 Posts: 107 | Hello Lyle, Strong Memorial Hospital in Rochester has an excellent cancer center with head and neck cancer specialists.It is not totally the waste land that nellie speaks of although cancer care in upstate NY requires a bit of travelling.
by the way strong and roswell have many connections, strong also has a head and neck cancer support group where alot of info is shared contact them. best of luck, lenny | | |
#20789 08-01-2006 06:39 AM | Joined: Jul 2006 Posts: 16 Member | OP Member Joined: Jul 2006 Posts: 16 | thank you Nelie and Lenny,I have an app't to see Nelies'ent/surgeon.yes i need ccc and will contact.i've had only radiation,dr. said cancer was stabilized now its active again,i'm on standby for ithaca,see what he suggests.I'm to have pet/scan t'm'w ,so i'll know more soon.best wishes to you all.lyle
lyle.4
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