#93446 04-08-2009 11:37 PM | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2008 Posts: 96 | I decided to start a new thread since the other one was getting so long. We had an appointment today at UW-Madison, and our fears were confirmed. Ron's cancer is back already (his 2nd salvage surgery was just 8 weeks ago). I knew something was going on because last week was my spring break from work and we went to my sister's in MO. and he slept anywhere from 14-16 hours a day without even realizing he was sleeping that much. He just noticed this new nodule in his right cheek about 10 days ago. The Surgeon did a punch biopsy and sent it to path right away and we heard within the hour that it was positive for malignancy. We won't get the full path report for a couple of days but are assuming it is again SCC. We were then sent immediately to a Radiation Oncologist there, where he discussed the use of brachytherapy. I was glad to hear that we even had a radiation option left. First we will get another PET/CT to re-stage the cancer. Hopefully, there will be no mets. The RO seemed to think that if this is localized to the right buccal area the brachytherapy should take care of it. He did not think that Chemotherapy would help at all. Do any of you agree with this position? I don't. This is the 3rd occurence of cancer since July of 2008, 4th in total since 2005. I feel like we are running out of options since it is recurring so quickly each time. I want to throw everything we can at it right now. We see our Medical Oncologist tomorrow morning, and I am hoping that he will want to do further chemo. He had discussed using Erbitux this time. What do you think? I don't want to continue to be so passive. I feel like I need to go in and pitch a fit for Ron to have the best chance. Thanks for your opinions, you are all the best judges for treatment to me. Lori
Lori, cg to H Ron, age 56. Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05. Recurrence 7/08 Stage IV. Surgery 8/30/08. 2nd recur. 11/08. 2nd surgery 2/2/09. 3rd recur. 4/9/09. Erbitux wkly. 5/09-? Ron died 6/6/09. Lori also passed away 8/20/11, colon cancer | | | | 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 | Lori,
Sorry for the news and you are certainly right in not being passive so lets see what the MO says.
Remember chemo is poison to the body and it's really not credited with being able to rid our bodies of this cancer so they try to weight the risks vs the benefits.
None of this is easy. Even trying to develop a Tx plan for a first timer is not all that cut and dry and often we tell patients to get multiple opinions even at that level. Your husband's case is far from that level but you may still benefit from another set of eyes. Perhaps there is some trial out there that may fit his profile?
Remember, none of us here have that magic bullet and none of us are cancer docs so please listen to what the experts say.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Lori I wish I did have the answer. I don't even know what to do in my own case, where the ENT surgeon recommends cyber knife the RO says okay with no enthusiasm and the MO says chemo but not the ENT or RO. Why do I tell you this? Just to show that even the professionals don't know once it recurs so I don't think you can really go wrong no matter what you decide here Like you I am leaning towards hitting it with everything and the kitchen sink. I did have Erbitux the first time around so this time they are thinking carboplatin. Good luck, It's so hard. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Lori,
So sorry to hear what you are going through. I think we can all agree the doctors can be frustrating sometimes. I think you should do some research on your own and see what other people have done. Which doc do you like the most, which one do you connect with? Tell them what you are thinking and see what they say. They have to understand that hearing 3 different things is hard for the patient. Please let us know how you are doing and I will be thinking of you and Ron.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2007 Posts: 104 | My thoughts are with you. My daughter had treatment at U of W. also, we ended up at U of Chicago where they Aggressively treated her, finally. However, it was too late.....too much time without prompt agressive care. I know how difficult, painful, heartbreaking and frustrating it is....... Maybe, you would feel better with another opinion at another institution. We even traveled to MD Anderson, Texas. I would not hesitate here in the midwest to encourage treatment at U of Chicago (not U of Ill, U of Chicago Head and Neck Center, Dr. Kerstin Stenson, Dr. Haraf, and I can't remember the oncologist, however the Chief of the Head/Neck Oncology is Nationally recognized. shoot, sorry I can't think of his name, but most patients are seen by his associates and overseen by him as well. My prayers are with you. (My daughter and her husband lived in Rockford area.)
Jordan's Mom. Linda She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hey Linda nice to see you.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | 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 | I have not advice of any use for you - just wanted to know you are in my thoughts and prayers. I watch threads like this very carefully (selfishly - in case it comes back for me - again) - such a learning experience for all of us.
Stay strong - you've been through so much already. You can get through this again.
Donna
Last edited by Pandora99; 04-09-2009 09:13 PM.
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: 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 | Lori
Sorry to hear about the recurrance. Sounds like it was caught very early. Im amazed at how fast you got the results from the biopsy, even if it wasnt the full results. Its nice they gave you the malignancy news so you can start a treatment plan.
I was told that chemo alone wont kill this type of cancer. But in combination with radiation it helps to make the radiation more effective.
Best of luck with everything you both are going thru right now. 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: May 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2007 Posts: 104 | Thanks, Cookie. I peek in here often..... I am so glad that so many of you 'veteran survivors/caregivers' are here for others. They need you...... This site helped Christa(aka Jordan:) and I so much during her disease. It is wicked, we know. I think of you often.....
Jordan's Mom. Linda She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Sorry to here that's Ron's cancer is back also Lori. You are a very strong woman and your attitude is helpful to all of us.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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