#21887 01-06-2007 04:10 AM | Joined: Jan 2007 Posts: 3 Member | OP Member Joined: Jan 2007 Posts: 3 | I am a 51 year old male. I am a college professor and an accomplished marathoner. I have three sons. Other than a few injuries along the way, I have been very healthy. I had some lymph nodes swell in the left of my neck and, after examination, had surgery to remove them. The tissue was squamous carcinoma. I completed my first day of evaluation at M. D. Anderson in Houston on 1/4/2007. I can't say enough about the facilities and staff here. My doctors have scheduled my second surgery for Monday, Jan. 8. They will remove some glandular tissue and take multiple biopsies in an effort to locate the primary source of the carcinoma. The results of that surgery will determine the extent of therapies and treatments.
I had dinner with Hardy and Jeri Meredith last night. Hardy had an amazingly similar bout with carcinoma in the throat area in 2005. He and Jeri shared a detailed picture of what they went through. It was shocking and probably more information than I really wanted to deal with. But, as I have always said, the 'unknown' is the worst thing to deal with. Now that I know the process more intimately, I can begin to accept and pursue the best course.
"life is not a rehearsal"
| | |
#21888 01-06-2007 04:35 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | At first I was Dx as occult primary and they did an exploratory biospy and found it at the base of tongue which is quite common. I also had 2 left nodes but Moffitt Cancer Institute said no surgery. Finding the primary results in a more targeted attack which lessens the damage from the IMRT. I was a non smoker, casual drinker and exercise nut my entire life. I had been riding my bike avg 100+ miles a week for years prior to Dx. I found my painless lumps in my neck shaving one day in May 2006 and the rest is UGLY history.
Please edit your signature to include your Dx and Tx, etc. so that each time you post the responder will be more informed.
I taught Accounting and Tax Law courses in college for 3 years before I joined the other side. Quite an experience. What is your field?
You will find this site extremely important as you make your way thru the Dark Tunnel as I called it. Feel free to ask or question anything. There is a tremendous amount of experience waiting to help you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | |
#21889 01-06-2007 05:52 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Fraz,
Welcome to OCF ! Hope all goes well for you on Monday. I am sure it will. I understand that MD Anderson is a great place. There are a lot of people here that have had there treatment there.
Like David said be sure to ask questions or use the search. There is a lot here to read and learn. You are lucky that you have found this site before you start your treatment. I did not find site until I was 4 mo. out of treatment. This site has helped me so much along with the support of all here.
Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | |
#21890 01-06-2007 06:36 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Fraz, MD Anderson in Houston is one of the leaders in cancer treatment and is a comprehensive cancer treatment center. They are working with a new proton bombardment method that causes even less damage to healthy tissue while in radiation therapy. You are in the best of hands, my friend. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
| | |
#21891 01-06-2007 08:50 AM | Joined: Jan 2007 Posts: 5 Member | Member Joined: Jan 2007 Posts: 5 | Hello. I am a 38 year old, married woman, who recently, went to the dentist, for my regular 6 month cleaning. My dentist found a "tongue lesion", on the right side of my tongue. I did not even know it was there. He sent me to an oral surgeon, who removed the whole growth, and had it biopsied. The result is "squamous dysplasia, moderate", "dysplastic process noted at inked margin of resection", and "acute inflammation". My surgeon said, basically, that means in between having cancer, and not having cancer. I have to go back in 3 months, or sooner, if I notice any new growths. This has completely shocked my husband and myself. I do not smoke, and have not smoked, I do not chew tobacco, nor have I every tried it, I also do not drink. I may have a glass of wine, ocassionally. In short, I am not in any "risk" groups. I am here to try to learn, as much as I can about this condition, so my husband and I can be proactive, and prepared, for any eventuality. Thank you for listening.
Susan
| | |
#21892 01-06-2007 01:34 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Susan,
It's best to start your own post so that responders can devote their sole attention to your questions.
That said, I would not hesitate to get another opinion ASAP. Take your test results and slides to the nearest CCC (Comprehensive Cancer Center) and have them evaluate them and advise you. I would not wait 3 months on anyone's opinion if there is the possibility of oral cancer.
Good luck and keep us informed.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | |
#21893 01-07-2007 11:43 AM | Joined: Jan 2007 Posts: 5 Member | Member Joined: Jan 2007 Posts: 5 | Dear David.. My husband and I talked, and I am going to call my family doctor, tommorrow, to get an appointment, so he can see the results of my surgery and biopsy. Thank you for your answer. Could you please explain, how I can start a post? I am so new to this, I have no idea. Thank you again, for your help. Susan
Susan
| | |
#21894 01-07-2007 03:49 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Susan,
You can start a post by going to the top of the page, clicking on New Topic, and posting your questions or concerns. That way it won't get mixed in with someone else's thread.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#21895 01-07-2007 04:22 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Susan -- An oral surgeon's initial biopsy of my husband's leukoplakia, also found by his dentist, had a similar finding -- moderate dysplasia, but warning of a "skip effect" that could be hiding cancer cells. He did not immediately go to a CCC, since no cancer had been identified. When an ENT did a complete excisional biopsy a month later, the report showed SCC in situ and a bit superficially invasive. Since then he has been followed by a doctor at Johns Hopkins CCC -- so far so good, knock on wood. When he made his first appointment at Hopkins six months ago he forwarded the original biopsy slides and all the surgical reports. With this disease it's important to be seen at a center where the doctors deal with this every day. The main part of this site has a "Dental Lifesavers" page where dentists who identify this disease at its earliest, most curable stages are honored. Sounds like yours would qualify! All the best, Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | |
#21896 01-07-2007 05:18 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Susan -- You might find this post of interest -- it's by someone with a similar pathology report to yours who was seen at a CCC. -- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | |
#21897 01-08-2007 11:20 PM | Joined: Jan 2007 Posts: 5 Member | Member Joined: Jan 2007 Posts: 5 | I want to thank everyone, who has replied to my post. My husband and I went to our family doctor, yesterday. He told us, in his opinion, based on the report, it is cancer, and set us up with an appointment, with an Oncologist, at our local Cancer Center. Our doctor, told us, this is a really serious situation, and not to wait. He was really concerned. The appointment is on 1/23/07. We rally appreciate all of the advice, everyone has given us. Thank you.
Susan
| | |
#21898 01-09-2007 07:14 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 | Well, 1/23 is two weeks away and if he is really concerned, I would think he would be able to get you an appointment sooner than that.
Is this 'local Cancer Center' a CCC Center? If not, you should try to get an appointment at one that is near you. There is a list of them on the resource page of this forum.
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
| | |
#21899 01-09-2007 02:24 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | There seems to be a disconnect... it is really serious, but they give you an appointment so far out? Take things into your own hands, find the best cancer centers near you, starting by using the best hospitals link on the OCF resources page, and then the link to NCI ccc's. Make some calls on your own and see if you can get into someplace else. The first thing you have to understand in this process is that you have to be your own advocate. You do not need a referral to get into a major cancer center, you can self refer. Every day this goes undealt with is a day that it can grow to the next stage of the disease and be harder to irradicate. This is a time to be assertive, and do not take no for an answer. It is not their lives on the line....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#21900 01-09-2007 03:44 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 | Susan,
I was treated by an excellent otolaryngologist at UT Southwestern Medical Center in Dallas which is most likely the next National Comprehensive Cancer Center member. My doctor has since gone to Vanderbilt. I would be glad to give you his name via PM if you like.
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
| | |
#21901 01-10-2007 11:51 AM | Joined: Jan 2007 Posts: 5 Member | Member Joined: Jan 2007 Posts: 5 | Thank you for all of the great advice. My husband, and I, really appreciate all of the help you have given us. If we can help anyone else, we would love to try, too. Because of the great advice, from the people here on this website, and the Pharmacists, I work with, we did go to get a second opinion, with our Internist, who inturn referred me to an Oncologist. Our health insurance, is a HMO (POS). Because of our insurance, I did need a referral. The 23rd is the soonest I can get in, unless there is a cancellation. If my oncologist's office can get me in earlier, they will. (The office is separate from the Medical Center). By coincidence, I work at the Medical Center, here in Johnson City, where our Regional Cancer Center is located. I am also the Pharmacy Tecnhician (CPhT) Level III, who makes all of the chemo, for our cancer center. I have been there for 5 1/2 years, since, my husband and I moved here from Maryland. Thank you all for all of the help, you have given us.
Susan
| | |
Forums23 Topics18,168 Posts196,924 Members13,103 | Most Online458 Jan 16th, 2020 | | | |