#78017 08-03-2008 11:17 PM | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Hi I am new to this site as of Friday it was confirmed that I have oral cancer and will have surgery within 4-5 weeks I am from Kitchener Ontario Canada and not sure of what kind of cancer or what stage it is at...all I know is what is scheduled and I just would like to know more about this I am extremely terrified ...the nurse gave me this site to tap into which the few postings that I have read have been sooooo great you people are so supportive and have a lot of good advice...and I will greatly appreciate any assistance
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Well, you've started out with a good nurse -- I wish I had found this site before I did. Since you don't know much about what's wrong, consider scheduling another appointment to discuss it with nursing staff -- Understanding the nature of this beast and the procedures will take a lot of the unknowns out of it for you and the unknowns are what really raise the stress levels.
I can't speak to your treatment, but I surely advise taking a calm friend or family member with you for all office visits so they can write down the information that slips right on by us as we try to digest what was first said while something new is being said. Someone with some medical background is helpful but not necessary.
Part of the good of having someone there with you is that they will see things differently and ask questions -- This gets you more info and also slows down the process giving you time to absorb, process and ask more questions.
I didn't do that on my first run through the system, but have done so since then and found it to be quite helpful despite my 'experience level' as a patient.
Also, of course, it makes for someone to speak for you with friends and family if you aren't up to it.
Hang in there and don't be afraid to express your fears and anxieties here -- Many of them can be put to rest just by discussing them.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | It's understandable that you are terrified. Even those of us that knew everything going into surgery, were terrified.
Pete has given you good advice. It is extremely important that you know everything about your diagnosis and treatment plan. I find it highly unusual that you have not been given this information.
It is also important that, if possible, you get treated at a comprehensive cancer center (CCC) where a team approach to your treatment can be done.
After you have more information, you should add this to the signature line of your profile so that anyone reading your posts will be able to read what your situation is. Right now it would be difficult for anyone to give you advice without knowing your staging, location of cancer and treatment plan.
We look forward to helping you.
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"
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | This is all just happening so fast my head is spinning I am waiting to get a cat scan done and the dr at the london Ontario cancer clinic is certain he can remove the cancer without radiation however he decided this upon visual and feeling and reading from the biopsy done in kitchener...I felt kinda rushed or pushed through I know doctors are busy I understand this and this was so matter of fact that he said he sees and deals with this every day...This has been a real roller coaster...from the clinic doctor telling me the sore was an irritation from my dentures...I believed him this was in February and in June I decided it was not going away and actually seemed more irritated going to the denturist who sent me immediately to the oral surgeon who immediately set me up with a biopsy, cat scan and ultrasound (which were inconclusive) to landing up at Victoria hospital in London Ontario..The doctor at the cc clinic in london said this was all good news cause he is sure he can cut it all out and not that he would send me home without being able to help me...They took pictures of my throat and it was clear..They were very good there but with it being so overwhelming they kept asking me if I had questions but I didn't know what to ask..all I appreciate the advice that you are giving me it makes sense I don't know what some of the terms people are talking about on this site and I know that some things don't pertain to me but I get the feeling that the cat scan yet to done will reveal more and from what I am feeling in my body, I am feeling what feel like a severe tooth ache they said it wasn't in my bones yet and also my right arm is numb started about 3 months ago with no explanation I thought I just have a pinched nerve...I am probably being paranoid but still the turn of events have made me skeptical. I understand the only worse scenario is not being curable but it just seems that everything that has happened so far has been the worst of the options I don't know if I am even making sense anymore...it could have been just a sore but wasn't could have been a sore blocking my duct but it wasn't it could have been non cancerous and it was it could have been contained but it was aggressive ...so it just seems every level this goes it gets worse...my daughter is getting married next year and I wanna be with her and help her ...I have so many different emotions and the dr well it was very routine for him...they are very confident...As far as scheduling another appointment with the nurse I am going to do that when I get the cat scan done...Is it normal for this to move so fast...4-5 weeks from first meeting the doctor to being in surgery? Anyway I want to thank everyone here for support and yeah I am thankful to the nurse for suggesting it
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | take a deep breath! People do survive this. Regarding time frame, yes you need to move fast on this. BUT you also want to make sure that you are doing the appropriate thing. A second option is probably a good idea. In your signature you state that a neck dissection is planned/possible(?) same with free flap. Is this just a possible scenario or is this actually planned?
What exactly was biopsied and what did it show? {disclaimer: none of us can diagnose over the web, you can get get advice and pointers for dealing with your medical team}
Best
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Thanks for writing markus...yes everything is planned just waiting for the surgery date but first waiting for a cat scan to be done I don't know anything about the biopsy except that it is an agressive cancer is all I was told and then I was sent to the cancer center in London...the oral surgon who took the biopsy said it has progressed to my glands...I was in total shock when I heard about the operation proceedure and it has happened so fast that I didn't even think to ask some of the questions I am being asked now I am wondering if I can get a copy of the report from the oral surgeon that might help me here on the sight ...The biopsy consisted of removal of the growth bottom of my mouth and it was also on my tongue which he also removed my tongue has no feeling presently on the right side....all I was told is that I will require more surgery...the information on most people's signature line is greek to me so I have no clue as to even where to go or how to use this site effectively cause a lot of the stuff I am reading is scaring me more...and adding more what ifs that's not the people's falt but mine for not being able to understand and just reading but there has been a lot of wonderful success stories as well which have kinda balanced some things out....I keep getting into areas on the site and don't really know what I am looking for. I really do need to find more information from the nurse or dr involved...when I have my cat scan I guess cause it is a long distance to see them...or maybe I can call I don't know am so confused....
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Its perfectly understandable to be scared and confused. All the medical jargon is difficult to understand. Do you have someone going with you to appointments? If not, try to write down questions and their answers and try to find someone to go along. Sometimes its easy to tune out during the doctor visits.
From what you wrote, it sounds like your cancer is located on the floor of your mouth or base of your tongue. Does that sound right?
Once you get the PET scan you should be able to find ut what stage your cancer is. A PET scan is where you drink a chalky (kind of yucky) liquid then have a cat scan done. Thats the best I can describe it. At least its painless.
What types of doctors are you seeing? Do you see an Ear Nose and Throat specialist (ENT)? How about a medical oncologist (thats one who will monitor your blood work and will give you the chemo if necessary). Or do you have a radiation oncologist? They are the ones who monitor the radiation treatments.
Im trying to write this very plainly to help you understand about your treatment. As the patient, you need to know what is going on and why. The unknown is always frightening, dont worry, here at OCF, we will help you thru this.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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