| | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Hi. My husband s HPV positive 16 tonsillar cancer has metastasized to lung only 3 months after completion of treatment. Confirmed by biopsy. MO advises waiting 8 weeks and rescanning since its small still. Second opinion MO says start now with chemo. Realize we are not at a CCC, so looking for a new treatment center. Any recommendations for a center that has dealt with this unusual situation ? Willing to travel. Thank you Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | 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 | My first suggestion is to get your husband into one of the country's top comprehensive cancer centers (CCC). It really does make a difference! This can be especially important when facing the second round of cancer in such a short time frame. At the very least go to a CCC for a second opinion. At a CCC a whole team of specialists will discuss each individual case at a meeting to all decide what the best treatment plan would be. Everyone is on the same page and this is very beneficial to the patient. CCC's have the country's top doctors and treat more OC cases and are the most experienced with recurrences including mets to the lungs. Tomorrow morning start making some calls to get him seen ASAP. Some airlines will give free air travel and most CCC's have free lodging available for patients who travel for their treatments. Best wishes! CCC list
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | I concur with a second opinion at a CCC. Having done so myself (and ended up getting treatment there) I can tell you it was the wisest (and easiest) decision I made during this journey. Most have the infrastructure set up to accommodate you and a caregiver. Many have housing, transportation and other services available to make seeking treatment easier. Here's another list to check out. http://health.usnews.com/best-hospitals/rankings/cancerPositive thoughts and prayers "T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 |
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Thank you, Christine. You are right. I need to find a CCC with a great quantity of experience.
Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Mary, I don't mean to scare you, but wherever you decide to go, I would get moving as fast as possible on those second opinions. I don't know what part of the country you are in, but we have had fantastic care at The University of Chicago. I can pass you the contact info of one of their top Med Onc's if that CCC is of interest to you, Ana
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | 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 | I can't see ANY reason to delay Tx after it's been confirmed as cancer????
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Ana--Don't worry about scaring me; I can't get any more scared than I already am. :-) I am in Maryland, 20 miles from Hopkins and UMD. Our MO (at a local hospital that is affiliated with Hopkins) has told us that a second opinion at Hopkins will give us the same advice (wait) as she is. Even as I type this I know how crazy it sounds (the advice? or me and my husband?). I called Memorial S-K this AM and the very nice scheduler basically said, "Why aren't you going to Hopkins since you live there?" As I think thru this, I realize Hopkins is a pretty darn big place, and there's a good chance we will get other answers if we go there.
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Mary,
I would highly recommend going to Hopkins - it is one of the top H&N cancer centers in the USA. I went there for a 2nd opinion in 2010 after a recurrence and have been going there ever since. Great place and great doctors!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: May 2013 Posts: 2 Member | | Member
Joined: May 2013 Posts: 2 | Hi, Susan
If you are happy with your doctors at Hopkins, would you mind sharing their names? (Or is this bad form to ask--I haven't really noticed any doctors names stated, so maybe there is a reason for that?)
Sorry, new to the Board. | | |
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