#54497 03-16-2004 02:40 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 | I went to the Beth Israel Continuum website and they offer state-of-the-art treatment. Since he's going to New York for treatment, why didn't he go to Memorial Sloan Kettering -they are the No. 1 comprehensive cancer center in the US.
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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#54498 03-17-2004 04:42 AM | Joined: Mar 2004 Posts: 24 Member | Member Joined: Mar 2004 Posts: 24 | I had surgery for the removal of tonsil and the left base of my tongue. After surgery i was able to speak well and I could swallow many foods. After 6 weeks I began radiation (no chemo) neither my ENT surgeon nor my Radiologist felt chemo would be helpful. I am now over 1 year past radiation have difficulty speaking and swallowing. I do not know whether I should have tried radiation and chemo instead of suegery or should have just had the surgery. They removed 10 lymph nodes and one was not clean, that is why I had radiation. These are difficult decisions to make. | | |
#54499 03-17-2004 05:44 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | The "traditional" standard approach to cancer treatments is a mixture of the old standards of surgery mixed with newer methods. Tumor "debulking" (surgery) as a first step and then radiation to mop up. Chemo is given more to enhance the effects of radiation and offers a small statistical improvement. I know of no chemo that, by itself, offers a cure for SCC.
The idea that radiation alone might offer nearly the same statistical survival rates is fairly new relative to the surgical solutions which have a 100+ years of track record. In addition any treatment plan might be ever so slightly biased by the particular specialty you were consulting with. In otherwords, surgeons tend to know surgery, and radiation oncologists tend to know radiation. This is why the common advice here is to seek a multi-disciplinary medical center for treatment advice. These facilities generally offer the best treatment outcomes.
Another thing to consider is that as cancer staging moves from early stage I to stage IV, the treatment options required to give best long term outcomes change. The points at which the treatment option changes from surgery only to surgery plus radiation, and radiation plus chemo are not sharply defined points. In addition, the staging process relies heavily upon surgery to remove the lymph nodes for pathology testing. This creates a bit of a problem: if you don't do a radical neck dissection then you don't really know the stage, but if you don't know the stage was advanced why do the radical neck dissection? I believe the experience level of your doctors makes the difference here.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#54500 03-17-2004 07:00 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 | I have to beg to differ with Mark about "The idea that radiation alone might offer nearly the same statistical survival rates is fairly new relative to the surgical solutions...". When I worked for Siemens Medical Labs (manufacturer of LINACS) back in the 70's it was well known that radiation often offered a total cure. And I also have to ask, were tumors really being resected on a routine basis in 1904? The truth is that surgeons like to cut and radiation oncologists like to irradiate. This is why a multidisciplinary team is essential (along with a tumor board) to consider the maximum efficacy and statistical odds of any treatment protocol.
Comprehensive cancer centers have the most experience with what brings the highest degree of success.
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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#54501 03-17-2004 07:50 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 | My resarch has uncovered that most cancer treatment protocols have been developed only in the past 50 years.
I should also mention that Cobalt 60 machines were used (early 50's) before linear accelerators made the scene (and are still used in some parts of the world but rarely found in the United States today). There are some major advantages to using LINAC's vs. Cobalt 60.
The first case of cure of a malignant tumor by radiotherapy alone was reported on a patient with a histologically confirmed squamous cell carcinoma of the nose in 1899. She lived 30 years beyond the treatment.
Head & neck cancers were treated for the first time with radiotherapy in 1932 at the Curie Institute in Paris with curative results.
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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#54502 03-17-2004 11:31 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Beg if you want but I don't see much to differ about.
The first recorded description of a radical neck dissection is 1906. Surgeries to resect cancer in the head and neck go back considerably earlier. The word "routinely" is relative to many variables. But I have a lunch bet that more surgeries were performed over radiation treatments in any time period.
I was not trying to suggest that radiation is still experimental (I don't think I said anything close to that) Since radiation is delivered by very expensive machines, and surgery is much less expensive (from a historical perspective) and since it is still available only regionally, probably the trend is still surgery first then radiation. (that does not mean that is the best way.) Then other risk factors from the treatment need to be considered and added into the mix.
Since I have regularly supported and advocated radiation to be considered as a critical part of SCC treatments, and since I stated the same thing as you about the necessity of multiple expertise, I see virtually no important difference in what we said.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#54503 03-21-2004 11:56 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 164 | I had a near total glossectomy in Novmeber 2003 followed by radiation/chemo I just finished treatment in January 2004. I went to MD Anderson and got the multi-displinary approach. I also went on young tongue protocol to shrink the tumor, but it actually grew from stage 2 to stage 3, my nodes were negative and PET revealed no other mets. I am having difficulty swallowing and speaking. I'm not sure what I would have done if offered the choice. I sure am unhappy about the outcome of the surgery though. I went in for hemi-glossectomy and almost all of it was removed. My tumor was poorly difined and agressive. I was told that being a non-smoker, non-drinker this is usually the case.
I hope that everything goes well with your father!
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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#54504 05-09-2004 04:40 PM | Joined: Mar 2004 Posts: 5 Member | OP Member Joined: Mar 2004 Posts: 5 | Sorry about not responding to any of the messages. I have been in New York with my uncle an awful lot. He decided against surgery and proceeded with chemo and radiation therapy which was going very well until three weeks ago when the port a cath became infected. The infection was so bad that he became very critically ill, multiple organ problems, respiratory disease and some other mess. The doctors were not very optimistic about his condition at all. I went to see him in Newyork Saturday and he is getting ready to go to the step down unit. God is good. They gave him a ten percent chance of surviving three weeks ago. Look at him now. As for the cancer, the raditation oncologist and medical oncologist feel as though the treatment is going very well. The tumor is shrinking greatly. When the infection set in he was in his last week of radiation..bummer. Anyway, I truly believe that God can do all things if only we believe in him and have the faith. | | |
#54505 05-10-2004 04:22 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 | All things are possible through Christ who strengthens me. (Phil 4:13)
God is good, all the time. All the time, God is good! I am glad things are going good and I am so sorry for all you have had to endure and especially what your uncle has had to go through. Thank God he put you in your uncle's path. He is very fortunate to have 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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#54506 06-29-2004 02:13 PM | Joined: Mar 2004 Posts: 5 Member | OP Member Joined: Mar 2004 Posts: 5 | Thanks Ed and everyone. My uncle is now in a recovery facility in New York to get physical therapy for his arms and legs. He is expected to make a full recovery. Praise God. He went to see the medical oncologist and he said that the tumor has responded well to the treatment and he does not see a need for future chemo. He has also had an appointment with the radiation oncologist and he said that the same thing. they do want to remove his lymph nodes and put radiation rods into his tongue. The doctors are calling him a walking miracle to still be alive today. God is the chief physician in any hospital room if only we will invite him in to do the work. God has restored all of his bodily functions to their FULL capacity. He was so sick that he could not move a finger(literally). They gave him a 10% chance of surviving the infection (staph in his bloodstream). He is now walking and feeding himself. He has to hold onto to things to walk but therapy is daily. The doctor in the hospital told me that he would be ventilator dependant for the rest of his life. Huh, he isn't even on oxygen. I am so thankful to have been able to be there for my uncle. I wish that each of you have someone dedicated to you as well. I will continue to pray for each of you and for your families as well. God Bless
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