#54877 05-20-2004 07:45 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | It makes such a change to hear of a doc going that extra mile.. there are more posts here about docs that were to conservative at the start.. Hang on in there Eric.. You can do this..
prayers 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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#54878 05-20-2004 08:48 PM | 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 | Eric,
I am so sorry for all you have had to endure this week especially. You are truly blessed to have been paired with such a dilligent health care provider. I am hoping and praying that your results will be nothing but good news! May God continue to bless you and shower His love and healing upon you.
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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#54879 05-21-2004 01:03 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Eric,
Here's hoping for only the best results for you.
I totally agree with your point about the value of a doctor who keeps on the trail of this disease and its after-effects. I've been fortunate that the oncologist who was the "point man" on my case 15 years ago has stayed on ever since as my primary care doctor. He still sees me 2-3 times a year and constantly tells me to call him about any symptom, any time, anywhere. (When I had to call his nurse about a bad case of poison oak, I told her the doctor needed to keep me on for comic relief.) Given how nasty and persistent oral cancer can be, it's really important to know you have a doctor who knows your history well and can be an advocate and who will expedite tests when they need to be expedited.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#54880 05-21-2004 02:57 AM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2003 Posts: 95 | Eric ,
Hoping for the best results here too. My husband is playing the waiting game too. He had base of tongue stage 3 or 4 did the radiation and chemo ended one year ago April still can't eat well and now has a spot blemish on his lung and the oncologist said he should have it removed ca or not so he has an appointment wed to see someone. The waiting game stinks . He's a mason and started working a little and started feeling good about himself after a long winter . Anyone had a lesion removed from their lung? How long recovering? I'm a nurse but he tends to ignore me.He also minimizes things but I know he's a basket case. I'm concerned he won't go for removal if he thinks it's a big deal because he went through so much last round. Unfortunately I'm big on personal choices and have to keep my mouth shut. Very hard to do if you knew me.This whole situation for him and many of you here is like waiting for the axe to fall and really sucks
for all . I'd be greatful if anyone has a positive experiance to share.You have all been so helpful in the past because I don't have anyone to share my concerns even getting it out helps. So I'll already say thanks .
Diane | | | 
#54881 05-21-2004 05:11 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Erik,
They sure put you through the wringer this week. Nice to see you keeping us up to date. I am praying for good results from Wisconsin. I am just one of many pulling for you. Waiting for results drive me nuts! I try to just keep that old sayin going. "It ain't cancer til they say it's cancer" Keep the upbeat tone of your posts going.
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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#54882 05-21-2004 06:02 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
After all that, you ended up with a CT after all. CT is what detected my lung mets.
I am proud of your physician for going the extra mile for you. I think your assessment is right on, he is wasting no time in getting a proper diagnosis. Time is of the essence. He wants to pull out all the stops so that your chance for a cure is as good as it can be.
Thinking of you often.
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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#54883 05-21-2004 07:29 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Eric,
Sorry to hear you may have to go through this again. Neck dissections are a 'walk in the park' in comparison to radiation. I have survived two 4 years apart. My second cancer was not a reoccurance of the first but a completely new one that cropped up 4 years to the day from the first one. While it is disheartening to have to do it all over again, IF it is cancer, they probably have caught it early by their diligence and the sooner it is out, the better. Some of us do survive a second go round.
Still hoping it's a false positive.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#54884 05-21-2004 10:19 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Eric, My mom had a recurrance (or so they say) but it was very close to the primary cancer so we are still unsure of it being a recurrance. She didn't have radiation with the first surgery although they did the radical neck dissection with no nodes positive and the neck dissection was not that bad at all especially when compared to the radiation and chemo. Even though she had IMRT after the second surgery they radiated bascially her entire mouth area both sides of her neck and even the chest area (heavily concentrated on the right side where the cancer was). I am praying so hard for you that it is not a recurrance. Its the pits to have to go through more surgery and treatment. I checked your profile and realized that you are my husbands age. I can't even begin to imagine how hard this is for you and your wife. I will be praying for you both. Take Care, Dani 
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#54885 05-21-2004 03:31 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Eric Update -- A GOOD DEVELOPMENT!! but not completely out of the woods yet...
Hello all, just got off the phone with the ENT (after sweating bullets all day)...
Here's the scoop: the biopsy of the lymph node came back negative for cancer (great news indeed). But my doctor, considering all the circumstances, wasn't 100 percent ready to pronounce me out of the woods yet. He wants to either biopsy again or possibly even take the whole lymph node out just to be sure.
I think the concern is over the quality of the sample they got with the CT-guided biopsy. They know they were inside the node, because I watched the pictures on the screen in front of me. But he had to take three samples to be sure (and didn't really like the first two too well)...
Anyone else been down this road before (i.e. multiple biopsies, still having questions even though the report was negative)?
I'm breathing a big sigh, at least for the weekend, though I'm being cautiously optimistic because of the nature of this disease and reality in general...
Love to all who have prayed for me and my (amazingly wonderful) wife... will keep everyone updated on the latest...
I'm definitely staying in prayer for Daniel and his situation... prayer does work... hoping for similiar developments in his case...
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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#54886 05-21-2004 04:30 PM | 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 | Erik,
I hope this news eases your burden this weekend. Be sure and tell your doctor how much all of us appreciate his dilligence and suspicious nature! He is a jewel. I will be praying especially hard for you this weekend.
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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