| | Joined: Mar 2012 Posts: 17 Member | OP  Member
Joined: Mar 2012 Posts: 17 | Just had my surgery and was told last Wednesday that the cancer had moved from the tongue to least one lymph node as they had removed 13 during surgery. Doctor not very helpful gives falsehoods and then really let's me down. First when we met him he stated this is on the tongue only, he stated I bet you 95% that this will be the only place we will find it. Than after the report came back with it in one lymph node he states the the oncologist will probably suggest no further treatment. I now know after reading the posts that is not true. Very frustrating as I progress through this father of three married 31 years police officer for thirty years
Diagnosed squamous cell carcinoma surgery 2/24/12,primary tumor pT1 regional lymph node pN1 total number of nodes removed 13 with 1 positive age 53 occasional cigar smoker quit social drinker workout nut.
| | | | | Joined: Oct 2011 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2011 Posts: 32 | I am so sorry. Frustation, anger, anxiety, pain. I know the many emotions and seen first hand the pain that accompanies this terrible disease. But I also know that this group is what keeps me hanging on when I feel like I have to run away -- and I'm only the caregiver! You have definitely found an incredible resource and support group!
Being a police officer -- thank you for your duty! -- you will no doubt do what needs to be done to move through this. Know that this group cares about you and never fear sharing anguish or frustration. No one here has judged me, but only encouraged me. And they have such a wealth of knowledge and experience that will help you in so many ways to deal with everything. Prayers and positive energy to you and your family!
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
| | | | | 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 | I completely understand your frustration! Are you being treated at a cancer center? Its where you have a whole team of professionals all working together on your case. It makes it really difficult when you jump from one doctor to another and they all tell you things a little differently. Here is a list of the countries best hospitals and NCI cancer centers. NCI Cancer Centers US News Top Cancer Hospitals PS .... When you have time, please add a signature. It greatly helps us to get to know you much faster when we know your history. Click on the "My Stuff" tab, on the dropdown menu click on "My Profile". Scroll to the bottom and type your info in the white box and click "Submit".
Last edited by ChristineB; 03-05-2012 08:52 AM. Reason: + link
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi DS - I just replied to your other post - it addresses your issues with your dr. Did he really only remove 13 nodes? Usually the number is higher - between 20-40. I thank you for your service as well. please get a second opinion and if they recommend rads and chemo listen to the whys it's not something we want to do but often there's a good reason. Do you know he deals of your present biopsy ? That may giv you a clue as to what you're facing. The size of your tumor and any extraneous circumstances - ECE and PNI - will all come into play... Best of luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2012 Posts: 17 Member | | OP Member
Joined: Mar 2012 Posts: 17 | I go back Wednesday, doctor wanted another week for area to heal than he suggested an oncologist but did not get his name. Been in touch with a friend how's sister works for Texas oncology center close to m work and is willing to treat me she also said wait until I find out who he recommends then call her she can at least tell me what she thinks of the recommendation. Then I just noticed the top of my tongue is brown in several spots geez what now?
Diagnosed squamous cell carcinoma surgery 2/24/12,primary tumor pT1 regional lymph node pN1 total number of nodes removed 13 with 1 positive age 53 occasional cigar smoker quit social drinker workout nut.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Your Dr. said, 1 lymph node came back positive and also stated the Oncologist would suggest no further treatment I would run like hell.
I see your in Texas you have MD Anderson there give them a call it's one of the best Cancer Centers around.
I had 14 lymph nodes removed none were positive.
Time to step to the plate be your own advocate. You have to stay on top of this it's spreads fast.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | "Your Dr. said, 1 lymph node came back positive and also stated the Oncologist would suggest no further treatment I would run like hell.
I see your in Texas you have MD Anderson there give them a call it's one of the best Cancer Centers around. "
What Connie said. Contact MD Anderson ASAP! Whether it is one lymph node or 20 it means the cancer has moved out of the primary location. My husband ONLY had one positive lymph node. Every doctor on his "team" recommended both chemo and radiation. You can't mess around with this.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Mar 2012 Posts: 17 Member | | OP Member
Joined: Mar 2012 Posts: 17 | Thanks to all i will do that thanks again
Diagnosed squamous cell carcinoma surgery 2/24/12,primary tumor pT1 regional lymph node pN1 total number of nodes removed 13 with 1 positive age 53 occasional cigar smoker quit social drinker workout nut.
| | | | | Joined: Mar 2012 Posts: 17 Member | | OP Member
Joined: Mar 2012 Posts: 17 | Thanks scary to be treated like this from a so called professional who trained at MD Anderson
Diagnosed squamous cell carcinoma surgery 2/24/12,primary tumor pT1 regional lymph node pN1 total number of nodes removed 13 with 1 positive age 53 occasional cigar smoker quit social drinker workout nut.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I agree with the other posters. I had 30 lymph nodes removed and only one was positive, but I had both radiation and chemo.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
