#15840 06-21-2004 04:09 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 | Bob,
I am so glad to hear your good news. I know it may not seem to be good news that you are getting ready for a rough roads ahead, but the news is good, indeed, compared to what it could have been. Best wishes for a speedy recovery.
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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#15841 06-21-2004 04:21 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Great news Bob!! Good luck on your surgery and keep us posted... You are going to do great...
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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#15842 06-21-2004 10:24 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | So Bob, don't keep us in suspense, are you you getting radiation or not?
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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#15843 07-28-2004 01:29 PM | Joined: Jun 2004 Posts: 10 Member | OP Member Joined: Jun 2004 Posts: 10 | Everyone - Sorry for my late response. I appreciated everyone's helpfullness & well wishes prior to my surgery on 6/22/04. I had a partial glossectomy performed on the right side of my tongue on 6/22. The tumor size at the greatest diameter was 1.2 cm and the depth of the tumor was 0.8 cm. After the surgery, I was informed that the margins were free of the tumor, however, when the pathology report came back a week later, my doctor revealed that the following two issues exist: deep margin is very close at one point to the tumor (less than 1mm). The other issue is the greatest depth of the tumor is 0.8cm.
My doctor's recommendation was to perform another partial glossectomy whereby he would take an additional (1 cm) off the right latteral side of the tongue. In addition, he would also perform a partial neck discestion and remove vulnerable lymph nodes.
At this point, I decided to make appointments to cancer centers in N.Y and Philadelphia, which I should have done in the beginning. My appointment at the N.Y Cancer center was this past Monday. I was very impressed with the doctor and nurse. The doctor recommended not to due further surgery on the tongue or neck but get 6 weeks of radiation on the tongue and neck. He felt that additional surgery may not address possible cancer cells that could be anywhere in the tongue.
I also went to a cancer center in philadelphia on 6/23 and was also very impressed. The doctor in Phila recommended not to get Radiation but to get the tongue surgery and neck disection. The doctor emphasized that 6 weeks of radiation is not enough to kill the cancer cells in the tongue and neck.
My pathology slides are still being reviewed at both Cancer Centers, therefore the recommendations have not been finalized.
I am curious if anyone has been in this similar situation. Your help is much appreciated!
Thanks again. Bob
Stage I Tongue (SCC) Dx: June 2004; Tx: surgery 6/22/04; pathology found positive margin; got 4 opinions; decided on radiation only; going for 1st appt w/Sloan-Kett's rad M.D. on 8/9
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#15844 07-28-2004 03:12 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Don't tell my tumor that! - I "only" had 6 weeks of radiation- and other than the 2 chemo treatments - nothing else. And don't tell that to all of the other stage III/IV survivors here that also had just radiation (and chemo). Maybe it wasn't strong enough to kill the cancer but it damn near killed me.
I am more than a little confused by doc #2's remarks. Don't tell me he was a surgeon?!? Did a tumor board at each facility make the recommendation?
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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#15845 07-28-2004 03:25 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Gary, I truly understand what you mean because my treatment is very similar to yours with about 6 weeks of radiation and 4 chemo treatments. No surgery. But we can't compare our situatin with Bob's since we have different types of cancer. Ours is tonsil and his is tongue,which may cause a total difference in treatment.
Karen
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#15846 07-28-2004 06:05 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Wow, that surprises me too to hear a doc say six weeks of radiation is not enough... Knowing how my case has unfolded (as described above), I'd ask about surgery, neck dissection AND radiation. But that's just me...
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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#15847 07-29-2004 02:06 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Bob,
I'm also puzzled by the notion that 6 weeks of radiation is not enough! I can't tell from your latest message whether the doctors you spoke with in both cases were speaking on behalf of an entire team that had weighed the pros and cons of surgery/radiation/chemo. (Of course, when you have the rest of the pathology reports, that may also have a further effect on the recommendations you're getting.)
At this stage, I think it's very important to be sure you have the full, multidisciplinary input from the hospitals you're dealing with.
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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#15848 07-29-2004 03:00 AM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Bob, As tiresome as getting additional opinions can be, I would suggest getting a third one. As Bryan has pointed out a number of times on these discussions, the danger of micro mets is not inconsiderable (you can search the archives about this) and multi-modal treatments tend to be more successful. - 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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#15849 07-29-2004 03:42 AM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | This confusion is so the norm. and so frustrating Right now my husband is in the bind of choosing between watchful waiting post surgery T2NoMo of the oral tongue or having radiation. As in the archived debate one Dr says watch wait and save radiation for a reoccurence and another Dr says get it now and worry about a reoccureence if and when it happens. For those who have had a reoccurrence after radiation what were your treatmnet options?
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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