| Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Hello, I have been reading your website off and on for 5 months, since the midst of my husband's chemo/ radiation treatment for HPV+ tonsillar cancer. It was a tough road, but he was progressing beautifully. The last treatment was December, 2012. I was mentally beginning the party planning to celebrate and thank all of our relatives and friends who helped us through it--when the 3-month PET/non-contrast CT came back with worrisome spots on lungs. A followup biopsy has confirmed metastasis to the hilar lymph node of lungs. One small spot, less than a centimeter, (even too small for trial participation) but "terrible" news. (to quote our rad onc). We have two very conflicting approaches from two different centers here in the Baltimore/DC area: [1. Wait 8-10 weeks and do a CT with contrast to see how it's behaving. If growing, begin chemo 2.] Don't screw around with it and start chemo now. I have looked and looked and perhaps it's my unfamiliarity with the website, but I do not see similar situation. I know this is not a common occurrence, but if there is any insight out there, I would love to hear it. Thank you so much. Sincerely, 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hello, Mary I'm afraid I had to look up what hilar lymph nodes were - so I don't have any real knowledge to share, but I wanted to reply to you so you would know someone was listening.
Are either of the centers official NIH Comprehensive Cancer Centers?
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Mary
Very sorry to hear you are back on the merry go round ...
I think you need to decide which centre is the most experienced and, as Maria has said - if either of the clinics are a centre of excellence for head and neck cancers. Hopefully it will also be the one you have most faith in. Once you have that figured out, go with them.
I would be asking one all important question of the oncologist: If this were their father or brother, what would they want them to do? Sometimes if you force them to consider the options from a personal perspective, the answer is more considered.
There are other things that you and your husband need to consider. Things like the general health of your husband, his age, his wishes, his smoking history etc. You also need to know if the doctors are considering trying to cure this or if they are giving him more time. Has anyone mentioned surgery as an option? I assume the biopsy showed this is indeed a metastasis from the original cancer and is a SCC - not a new cancer?
Again, very sorry you are going through this again and hopefully this time, you have some support here on the forum
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | 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 | Mary, welcome to OCF! Im so sorry to hear your husband has mets to the lungs. I am assuming this is the same type cancer as the original. Ive seen several members go thru this. My first suggestion is to make certain he is being treated at 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. If you both are satisfied with his current team of specialists, then at least go to a CCC for a second opinion. It cant hurt! 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 list If it were me, I would get it taken care of. Putting it off can make it harder to treat. You and your husband will worry constantly about it growing. I dont understand why waiting is an option. Why put it off to watch it, cancer grows thats what it does so to wait is not logical to me. Good luck!!!! 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 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Mary, having also been in the recurrence club I do know how devastating this news is to you both. Like Christine, I would get this treated as quickly as you can. I too would want to know if there is a surgical option available. Surgery followed by chemo would be my preferred option if that is available. A second opinion at a CCC may help clarify your options and expedite treatment. Try and take a deep breath. We are all here to listen and help, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | 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 | Sorry for your troubles. I had 5 recurrences, so I know how it is. I would rather not wait. Even if your husband decides to start treatment now, It may take a week or two to begin. Waiting 8-10 weeks more, to see how it's behaving, which is already confirmed metastases, may grow, and may take several more weeks to start. It's usually best to get any cancer early. Has anyone considered cyberknife, surgery, introperative radiation treatment? And what kind of chemo or targeted therapy is being considered. Maybe get a third opinion, but this will take time too. Good luck.
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Hello--Thank you for your insights. I am still getting familiar with this website, so I am not sure if I am replying to just you or to everyone.
My instincts and my husband's say the same thing. Get it early. Maybe different because in the lymph nodes?
Thanks again.
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 Tamvonk. I will add, "is there a surgical option?" to my list of questions. Now to figure out where to take those questions.
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
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