| | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | After talking to my Sister in law I am more confused about what the doctors have been telling her:
The SCC tongue cancer has NOTHING to do with the mandibular cancer, making it T1N0M0 for both.
The SCC tongue cancer is "mild" beginning stages nothing to worry.
Since tongue and mandibular cancer are both clear margin No further treatment needed?? Is that right?
The "stage 4" lung cancer is an error it is only scar tissue.
I am technical and analytical, if that was my mother I would ask so many questions. She either is scared or just takes the answers as GOLD and ACCURATE.
Is the doctor's explanation right? Or does it make sense?
Like what I said I am only an inlaw and if they are content with the explanation and treatment then I will go with the flow. I just want to know your opinion based on experience. thanks
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | You will need further clarification of this situation. If Joyce has tongue cancer then YES there is something to be concerned about!!!! Without treatment tongue cancer is a deadly disease and will surely take her life. Im very sorry!!!! Hearing tongue cancer being dismissed due to it being in early stages is NOT correct medical procedure, it cant be ignored. If this has been successfully treated already with surgery with clean margins then she should be ok.
I know your struggles from day one with getting second hand info. Its also very hard when the patient is in another country where she is out of reach for you. The familys lack of concern about the seriousness of the situation has been present thru out the entire process. I feel terrible about this! It makes it a no win for everyone.
Last edited by ChristineB; 01-25-2013 08:11 PM.
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: Oct 2012 Posts: 143 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | [quote=ChristineB]You will need further clarification of this situation. If Joyce has tongue cancer then YES there is something to be concerned about!!!! Without treatment tongue cancer is a deadly disease and will surely take her life. Im very sorry!!!! Hearing tongue cancer being dismissed due to it being in early stages is NOT correct medical procedure, it cant be ignored. If this has been successfully treated already with surgery with clean margins then she should be ok.
I know your struggles from day one with getting second hand info. Its also very hard when the patient is in another country where she is out of reach for you. The familys lack of concern about the seriousness of the situation has been present thru out the entire process. I feel terrible about this! It makes it a no win for everyone.
[/quote]
Hello Christine, Yes she had a Glossectomy in 2010. Then the mandibular cancer is 2012 - resection of lower jaw done. When asked after the 3 chemo treatments they said:
1) tongue SSC cancer in 2010 has NO RELATION to her mandibular cancer and that SCC is ONLY like skin cancer nothing to worry about.
2) No radiation needed AGAIN due to clear margin of both her tongue in 2010 and mandible in 2012.
3) Stage 4 cancer is no longer considered since the lungs have scars and not cancer - - - now we are back to stage 1 or 2 (early stages) since everything is removed!!
3) Everything is great!! No need to worry just monitor every 3 months.
They take everything the doctors say like GOLD!! Truthfully if they are happy then it is what it is.
On the other hand, I am not that way. I am like FACTS and proof. When mom had a stroke in 2006 - - I asked the doctor to explain the ct-scan to me. I told him to explain everything what they did and why; what they are doing now and why; and what they plan to do and why. unfortunately due to the lack of FAST MEDICAL intervention in a 3rd world country Mom suffered SEVERE bleeding that could have been stopped. That is another sad story for another time.
Thanks for listening
Ina
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Ok experts...chime in. I find it hard to believe that the mandibular cancer had no connection to the tongue cancer particularly when there was no treatment after her glossectomy.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Sounds unusual, and maybe dr is saying the mandible did not contain metatastic cancer cells related to the first, and could be synchronous or metachronous secondary cancer. Usually before 6 months it's considered synchronous. No rt was given for tx to cause another cancer, unless it's lifetime exposure is a factor. I wonder what type the mandible cancer is, SCC, it may be related then or another type cancer.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Highly unlikely hey aren't related - the tongue is very vascular and nervy - cancer from this area can travel. I'm glad they're monitoring her but they should radiate her - this sounds like a slow growing cancer and the mandible tumor is a recurrence. 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: Oct 2012 Posts: 143 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | Hello Cheryl, Joyce will not have radiation. As far as I know she is done. It will only be monitoring from now on. My in-laws are pleased with her progress and it is just a matter of time.
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | As long as she is feeling okay that's good let her regain strength and hopefully recover.
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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