#76642 07-07-2008 09:01 PM | Joined: Jul 2008 Posts: 2 Member | OP Member Joined: Jul 2008 Posts: 2 | Just received the news, cancer of the tongue, Phase II, surgery set for next week on the tongue and removal of nodes on the left side. If anyone can tell me what to expect it would be greatly appreciated. | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hi cosmo and welcome to ocf.
perhaps you cold give us a little more detail,then it will be easier to tell you what you need to know. What part of your tongue is affected,what sort of surgery are you having on your tongue? are you having a bilateral neck dissection or just one side? are you going to have radiotherapy or chemo?
regards liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | 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 | Cosmo,
Ditto on getting us more details but without that knowledge I still would advocate getting a second or third opinion especially from a Comprehensive Cancer Center before I would go under the knife or begin any treatment.
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.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | i'm a bit confused here david.If early detection and treatment is the crux of success how does waiting to get several opinions work?I am not being confrontational just think thats a mixed message.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Hey Liz,
I think I can help with this...if a biopsy has been done and even better, if there are PT/CT scans that can be looked at, we can sometimes be seen at the CCC's within a week. I know when I called, they were able to see Bill within about 5 days. It does depend on the individual specialists, but with a little tenacity on the patient's or caregiver's part, you can be seen by a number of specialists within a couple of weeks here in the US. I just stayed on the phone until I got the appts we needed.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Also, if the only physician the patient has seen is an ENT surgeon, then surgery will likely be the first -- and perhaps only -- recommendation the patient hears.
My husband's excisional biopsy of a leukoplakia (in which the cancer was discovered and, thank goodness, totally removed) was done by a very good ENT, but he also removes tonsils, treats sleep apnea and such. When my husband heard that cancer had been found, I insisted he get an appointment at a comprehensive cancer center where they see this every day and where -- if needed -- specialists from a variety of fields would work together to come up with a treatment plan.
-- 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.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Oh my what a complicated system.robin was seen by a head and neck surgeon,and after surgery he was passed on to the oncologist in the cancer centre adjoining the hospital.A multi diciplinary team decided on the best course of treatment after his initial appointment, the biopsy and scans.I guess we were lucky to have everything under one roof,but we dont get to choose doctors or where we are treated.its to do with geographical location and the health authorities.If we had been in yorkshire he would have had the same facilities in leeds as he had in guildford.From first appointment he was seen scanned biopsied had a partial glossectomy and had a bilateral neck dissection(two seperate surgeries) in four weeks and that was over the christmas holidays as well.
I got the impression that cosmo had been seen and biopsied and surgery arranged already,so thats why i was asking why david thought he should get another opinion and delay the start of treatment.
thanks for the input
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Liz, Yes, from one point of view complicated and definitely not perfect, but from another point of view...choices and more than one viewpoint. The CCC's have a multidiciplinary approach but we can go anywhere and can get more than one CCC's recommendation along with the recommendations from our local specialists. Makes the stress factor worse but gives us more to work with. Also, costly at times.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | 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 | Liz,
I conferred with 5 different cancer doctors before I picked one to treat me and I am very glad I waited to see Moffitt before committing. All of these visits consumed less than 1 1/2 months time and never was I told that putting off treatment for 2 months was detrimental to my outcome. In fact I was encouraged to seek other opinions.
If I had stopped short of Moffitt I would have had a RND and may not have gotten IMRT and while my apparent cure may have been the same, I would probably have many more post Tx issues to deal with. I read about so many posters that have 1 or 2 ND's based solely on the advice of the first doctor they see and I just wonder if they could have avoided that surgery by getting in to see a CCC and that's why I encourage addition opinions.
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.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Cosmo,
As you can see by my signature below, I had a partial glossectomy and a neck dissection. I was treated at a Comprehensive Cancer Center and was seen by a surgeon and a radiation oncologist before the final treatment plan was decided upon. There are many factors which should go into making a decision about how to proceed with a treatment plan.
The advice given above to get an opinion at a CCC is good advice. I assume that you meant to say that you are a Stage II not Phase II. In order for others to better answer your questions, it would be a good idea to fill in your signature so everyone can see where you are coming from. Remember that none of us are treating oncologists and that we can only answer your questions and give you our opinions based upon our experiences and in my case (and Dr. Mike's) some dental input, as we are dentists.
You should read the first forum for new posters so you will learn how to get the most from this forum.
I wish you luck with your treatment and please feel free to email me if you want to have a personal discussion.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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