#78876 08-17-2008 11:22 AM | Joined: Aug 2008 Posts: 6 Member | OP  Member
Joined: Aug 2008 Posts: 6 | Hello to all. My name is Chris Partlow, I am a healthy 42 yo oncology RN that found a lump on my tongue on 7/21/08(my birthday!) I have a longstanding hx of canker sores that occur from time to time on my tongue, otherwise no predisposition(no smoke,chew, social alcohol)Imagine my shock when diagnosed with SCC tongue and underwent selective left lymphnode dissection, and partial glossectomy on 8/7/08. The surgery has left me with a large neck incision and about 1/3 of my tongue removed. They feel that because all 29/29 lymph nodes were negative that chemo and radiation are not indicated at this time(Yaa Hoo!)I unfortunately bear way too much knowledge in the area of head neck ca just because of my profession! The plan is monthly checks with repeat PET in 6 months and I am given an 80% 5 year survival.Now I know as well as you all that statistics are not something to base your life on! But it does give one a different view, as my thought prior to this cancer was a 5 year 100% survival! Cancer sure throws a monkey wrench in everything! I am by nature a very positive person and have watched the effects of faith/attitude/determination on my patients, so a good attitude is absolutely key. I look forward to joining your group and appreciate all the advice/support offered. I know I am truly blessed to have found this so early. It grew in just a few weeks time, and doubled it's size in 2 weeks!
Last edited by chris partlow; 08-17-2008 12:08 PM.
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow happy birthday to you. You have had quite the journey already. I am new here myself and am just starting. I am sure your prior thought will be the case of 100% 5 year survival. That is what we are all shooting for!!
I am also quite new to this site and the people here are wonderful and that is a fact. I have gained knowledge, insight and support here. However I was not aware of the speed at which this can grow. I am amazed at that the tumor grew and doubled in two weeks time. I have had my sore in my mouth since at least Dec 2007 and I have surgery booked for Sept 8. I know it is never too late but immagine if it was caught sooner! How much more it may grow till surgery. This indeed stresses the importance of early detection and education not only of people but professionals.
Keep up the good work and I know that the people you work will also benefit from your support and caring!!!
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Hi Chris - saw your post and wanted to respond as we have some things in common - I am also an RN but I now work in the field of informatics, I live in Georgia, and had the same type of oral cancer and surgery as you. My surgery was in May '06 so I am more than 2 years out now. Please let me know if you have any specific questions I can help you with. I know it's a shock, no matter what, to know you have cancer. I guess the couple of words of advice I would give you at this stage of your treatment and recovery is to make sure you do your PT exercises every day -= I still do mine as I find that as time goes by I still have a lot of residual stiffness and numbness on the left side of my neck, and also if you have any problems with speech a couple of sessions with a good speech therapist really helped me a lot - I do a lot of public speaking and was very self -concious at first.
Wishing you all the best....
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Chris,
I'm not a nurse, but I am a dentist. Ginny and I are 2 of the few here that have had only surgery. My only remaining problem which is minor, is that my neck and cheek are numb in the area of the disection.
As you will see from my signature below, I am almost at 3 1/2 years and going strong. Forget the statistics. There is only one thing that you should be concerned about and that is you.
Right now everything is so recent that it's normal to be worried about recurrence. That will lessen as time goes on, but I'm sure it won't ever be totally gone.
If you would like to email me, just use the link in my profile and I'll be glad to tell you more.
Welcome to a group of the most caring and knowledgeable people on the internet. We look forward to your input, advice and suggestions.
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: 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 | Chris, While the majority of cancers in the Oral Cavity are associated with tobacco, there are cases where the cause is yet to be discovered. Since HPV is now the leading cause of cancers of the Oropharynx region perhaps another virus is among us or perhaps HPV is related to yours due to your age and other habits? Being a CPA I like things to "fit in boxes" so I'm always looking for the answer. Also, not to make you feel worse, but even without the cancer your 5 yr survival rate at your age was not 100% statistically speaking.
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: 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 |
Hi Chris:
Welcome to OCF. Its going to be nice having an oncology nurse around. Happy Birthday to you! Congrats on your surgery being successful.
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  | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome to OCF. I hope that we can give you the support and information (from a patients perspective) that you need through this time. There are many inspirational people on this board. I wish you well through this process and look forward to hearing more from you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Chris, my 1st surgery and neck dissection was the same as yours. I get tired of repeating htis, but my RO at the James Cancer center at Ohio State University told me he got it all and I wouldn't need Chemo or Rads. Oh Yea. A local RO sent me 3 letters in the Mail, 1 registered and called my home eto tell me that the margins of 1.5mm was far to close and if I didn't get chemo and rads, the cancer would return. He even called the Dr at Ohio State. That guy told him I didn't need it. LOL Well in less than 2 months I had more biopsies and sure enough the good old OC was still there. I ended up having to have all of my teeth removed for Rad seed implants and The Rads Chemo combo before the implants. I should have listened to the local RO from the get go and I might still have all of my tongue and teeth. I sure hope and pray that you are going to be fine. I just worry when I hear the same speach I heard given to someone else. THe local Dr is the guy that fixed the mess he didn't create. My tongue is in a continous state of big time pain, but I can handle it because I AM ALIVE. LOL can't kick too high tho.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Welcome, Chris.....(Are you a girl-Chris, or a boy-Chris. I can't find any clues.) Yes, it will be wonderful to have an oncology nurse among us. You will have a very different viewpoint from most of us. Jerry as a practicing dentist also has a similar viewpoint, as professional and also cancer survivor.
I am one of the ones that Jerry has mentioned who did not have radiation recommended. Of course, my cancer was not in my tongue, so my experience won't help you much, but so far I am doing fine.....at 2 1/2-plus years.
Glad you're here.....
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Aug 2008 Posts: 6 Member | | OP Member
Joined: Aug 2008 Posts: 6 | I as well am very analytical, wondering "why me?". When the HPV subject was broached I was told there was no need to test because it wouldn't change the therapy. I have been married for 20 years and never had HPV from my yearly gyn exams, so.. yeah, I just dont know. Thanks for the input. I would like to understand how this could happen, but then I frequently see lung ca patients with no hx of smoking...
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
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