| | Joined: Apr 2014 Posts: 13 Member | OP  Member
Joined: Apr 2014 Posts: 13 | Anyone have poorly differentiated SCC? I am still waiting for 2nd biopsy to check again for HPV. I have a 3 cm on base of tongue, positive node. Just diagnosed 4/10.
SCC stage 3, BOT, 1 Node, DX 4/10/14
CT4/10/14
PET4/11/14-clear (except for 1 node)
FNA4/14/14,4/24/14
T1N2M0
TORS 5/23/14
HPV+
30 rads completed 8/22/14
NED 11/6/14 😀
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome Tippie. Poorly differential is common with HPV related oropharynx cancer, tonsil, base of tongue, which is surprising due to its negative impact normally, but not in this case. The majority of oropharynx cancer these days is HPV related, often have positive nodes, poorly differential, found in late stages, but contrary to this, has good prognosis, responds well to radiation and chemo, so in this case, hopefully yours is. Good luck with everything.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | Yes mine was but I thought when I heard that, it meant my cancer was not "all together" and it was a good thing. Unfortunately like many things I've found medically related it means the opposite and is not good.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Tippie - welcome to the family. Though many have done it alone, navigating this journey with cancer is lots easier with the support and knowledge you will get from this forum. Who knew having an STD could actually be beneficial.
My cancer was moderately differentiated, but like David said above that was more than enough to scare the you-know-what out of me until I found out what it meant.
You have a lot to learn in a relatively short period of time before treatment begins. So get busy reading the pages of the OCF website about diagnosis and treatment and any other topics you have an interest in. Get yourself a spiral notebook to write down the questions you will think of (there will be many and you won't remember them all). I had sections for each doctor, but the most beneficial answers I got were from the nurses. Don't overlook them as a source of knowledge during treatment.
You're in for a wild ride over the next few months. It may go smoothly, it may not, we are all different, cancer and treatment affects each of us differently.
When you think of questions ... ask. This place saved my sanity from the time I was diagnosed all the way through treatment. That's why many of us stick around after treatment is over to help the new guys after us.
Again, welcome
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 | Welcome to OCF, Tippie! Im sorry you have joined our online family. We will help you with info and support to get thru the upcoming battle. Before you decide on your treatment plan, at least get a second opinion. Below is a list of comprehensive cancer centers (CCC). They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and go with it. CCC list US News Best Hospitals List There have been plenty of members who have had the same diagnosis as you regardless of it being HPV+ or -. At this time the treatment is all the same, hopefully that will change in the future. Right now you are going to get super busy running to all kinds of appointments. You need a full blood count including thyroid and testosterone if you are male. See your dentist for a thorough exam and cleaning. If you have any teeth that arent the best, they probably should be pulled now to avoid bigger issues down the road. While at your dentist, a mold needs to be made for flouride trays. Focus on your intake and eat all your favorites. Dont be concerned about weight gain, its ok as you will probably lose some weight during treatments. If you are on the slim side considerably increase your calories to bulk up a little. I know getting a cancer diagnosis is not something you had ever expected. A wide range of emotions settle in over the first few days after hearing those awful words. Im glad you are here so we can help you to get thru your treatments. Bets wishes!
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Tipple, sorry that you're joining our little club. Mine was "moderately well differentiated". What that means is that the cancer is confined to one tissue type) like lymph, etc. "Poorly differentiated" means that multiple tissue types are involved. The good news is that HPV tumors typically respond well to treatment.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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