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Joined: Apr 2013
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akj Offline OP
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they established today that it is cancerous tumor... they biopsied and are only waiting to find out if it Lymphoma or Squamosh Cell... there is fluid in the lymph gland which tilts it towards Squamosh... the pathology report is due back Thursday... Monday surgery was cancelled as the type of cancer will determine treatment... Squamosh could mean major surgery... Lymphoma might be Chemo and radiation only... the waiting is the hardest part....

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ur so right, the waiting is the hardest part. i wish u the very best.
debbiejeanne


laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
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They do chemoradiation for BOT SCC too. I assume they will check for HPV if SCC. Good luck on Thursday.


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






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Ask them specifically to check for HPV status. It's a very good thing to know.
We are here for you and have all been where you are. Take it one day at a time and come here for support.
Unfortunately, welcome to the family!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Just to let you know, I had squamous cell carcinoma (SCC) on the Base of my tongue (BOT) that had metastisized to my lymph nodes and i only had chemo/rads. No surgery.


57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
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My husband was diagnosed with scc base of tongue cancer. He received radiation and two sessions of chemo. His first post-treatment CT scan shows that the cancer is gone. Hope this helps to reassure you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Same here, Stage IV BOT only (as in THAT's ENOUGH) chemo rad and that was 7 years ago.


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.
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That's the norm unless it's a tonsil or something then they often go in and remove it for some reason. ;o)


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
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akj Offline OP
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Hello Terry and the Group,

I was diagnosed the 1st week of April this year with stage 4 Base Tongue SQC... would have never known I had it if not for two lobular tumors that floated from the mother ship tumor up in to my throat cavity visible enough and large enough to be photographed ay 1stwith a camera phone...

The main tumor and its two cling ons were removed on May 1, along with a double dissection to remove the lymph nodes on both sides... one side, the same side the mother ship tumor was on, had malignant nodes, had three very angry nodes,one which had grown to a point it was ready to burst or at least split so that there would have been a nasty clean up job...

after about three weeks of recovery from the surgery I began 30 days of radiation and 6 equally split chemo treatments to coincide with the 5 day week of radiation...

During the first weeks I experienced a brush with thrush and it was a precursor of the throat inflammation to come.

During the fourth week I also experienced a day where my fever spiked and my platelet count / neutrophil and a few other key indicators led to a postponement of my 4th chemo treatment... that day I was scheduled to have chemo I instead was admitted so the doctors could watch to see if the fever spikes, all around 100.5 to 103.could be controlled by a battery of antibiotics...

the fevers eventually subsided by the 8th day I was in the hospital and I was sent home without a definitive explanation for the fevers except that the body was not tolerating at that point the cysplatin and I was sent home to rest and see what the next week brought...

I did not miss a beat on the radiation and while I was experiencing the external "sun burn" and related sores and the expected internal sores and inflammation in my base throat and sinus drain area...my numbers were sufficient enough to have another go at the chemo treatment... I might add I had experienced each week the usual fatigue and hard sleep expected after the chemo treatments and other than the fever nothing else was abnormal...

We tried in late week five of six radiation treatments to catch up one more chemo treatment... it seemed to go well on the Thursday but by Friday evening I was spiking fevers again this time in the 102.5 to 103.5 range... I spent another 8 days of watching and trying antibiotics to control the fevers... with much the same results... I finished my radiation treatments and it was decided to pass the last chemo day although note that if you are tolerating the Chemo, its job is to pump up the radiation effect...

I am now at home one week ot from all treatments other the a regin of every other day of hydration to assure my numbers return and / or stay in the common zone...

I am experiencing the usual dry mouth and mucous that comes on with the radiation and chemo treatment and since you stay hot with radiation for 3-5 weeks, I am doing the same things I did while receiving treatments and will wait until I cool off enough to get the Pet scans and test to see what was accomplished... I would not have changed the course of treatments one bit... I feel that the staff at the university Hospital that I am going to are top notch and noted nationally for their success and procedures...

the tumors were removed by a robotic procedure, in the reserved time of 6-10 hours allowed for such a comprehensive surgery... I was fortunate in that my tumor was ecotopic (sp) tumor (growing outward) not endotopic (sp) that grows into the muscle...

and I am PHV positive all in my favor...

when I asked the question you're, basically a root cause... I was assured that this SQC base tongue tumor is almost epidemic in men in their 60-70's.

I am a non smoker, was casual drinker, beer mostly and had no family history...

Good luck and keep searching, while I wanted to search, luckily I was placed in the hands of the best in the nation for the procedures needed and I have only had that confirmed throughout the process...

Joe E



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Congrats on finishing your treatments.

Now onto the next phase, recovery! In a short time you should begin to feel a little better. For most patients around the 3rd week after finishing rads is when they first begin to feel somewhat human again.

Keep up the good nutrition and hydration for at least the first year after finishing radiation. A complete recovery takes most patients an entire 2 years. It can be full of ups and downs so try to keep that in mind when you experience setbacks. Its all part of the recovery process which for most of us can never happen quickly enough.

I did find it a bit unusual for your medical staff to say OC is becoming epidemic in men in their 60s-70s. It seems to be more younger HPV+ patients are being diagnosed than the older patients. But thats what I have seen here on the forum which may or may not be an accurate picture.

Best wishes with your recovery!


Christine
SCC 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 smile
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