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Joined: Jun 2019
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Gigi3 Offline OP
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Joined: Jun 2019
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Hi all, I am so glad I found this site! We are new to the discovery/diagnosis of metastatic squamous cell ca. About June/July of 2018 my hubby had a lymph node pop up on his left neck. We were in the process of renovating a house and moving at the time and it was thought to be allergies or from abscessed tooth. He felt fine, same energy, weight etc. I had a thyroid goiter pop out about 10 yrs ago and talked him into going to see a thyroid specialist. He declared not thryoid, but did blood work and only abnormality was Epstein-Barr >600 and said he most likely had asymptomatic mono at some recent point and gave him a round of ampicillin x 10 days and a referral to ENT. After 10 days of antibiotic lymph node still there, hard, not tender and getting larger. ENT scoped nasopharynx and throat and found nothing unusual. She had him return for FNA of the lymph node which came back inconclusive. He then was sent for a CAT scan with & w/o contrast that showed 1 lg 3.4 x 2.8 x 6.0 submandibular mass within the Lt cervical lymph node, deep to the left parotid gland. Additional adjacent abnormal LN at level 2&3 measuring 8 mm. 4 abscessed teeth. He was sent for radiology guided biopsies and it came back as metastatic squamous cell 90%, positive for P16 favoring tonsil or base of tongue. Sent for PETimaging and no distal metastasis identified, small uptake in left tonsil. The ENT scoped again and thought the lt tonsil was somewhat friable, but not hard or cystic. She scheduled for a tonsillectomy and referral for oncologist. We started reading and of course panicked. I talked my hubby into cancelling surgery and got an appt at MD Anderson proton center. We met with oncologist Friday who also could not find primary. We had another CT scan performed and now have an apt with their HVP specialist at the Head and Neck center this Wednesday. The lymph node is huge and does not move, hard and not tender. Still asymptomatic - energy same, appetite, no sore throat even after all these scopes. No weight loss, in fact has gained weight. We don't have any staging since we don't know primary, but we do know we have regional metastasis of several nodes. Is it unusual to not be able to pin-point primary? From what we are reading, it makes the treatment harder as a larger area has to be radiated. We hope to learn primary site from the newer CT scan this week in order to see if candidate for Proton therapy. Has anyone had Proton? Sharing what we know - and don't know hoping someone will tell us if we are missing something or need to do something else? Any suggestions are welcome. We live about 1 1/2 hr from MD Anderson so felt that was our best bet for dx and treatment plan.

Husband is 63 years old, never smoked ever, non-drinker until about a year ago when he discovered good wine - about 4 glasses a month. Married 38 years and faithful. Healthy other than some periodontic issues over past 3 years. Other question is how do you get HPV without sexual exposure?

Last edited by Gigi3; 06-30-2019 10:59 AM. Reason: spelling

Gigi3
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Welcome Gigi13,

I’m sorry for you troubles! This is the best patient/caregiver site around. I’m not sure if the percentage is, but unknown primaries do happen. Usually they’re found during a biopsy under anesthesia. A few may never be found, but they look to the tonsils/base of tongue for the primary, which are most often there. If it’s not locared before treatment they treat it as an unknown primary, which may consist of treating a larger area than if it was known. I had a known primary in the tonsil.

I had Proton Theraoy in 2015 to a small portion of my left neck where there was a recurrence, my 7th, in the left neck level IV and V. At the time, you had to have a certain type of head and neck cancwr, like brain stem or otherwise had to have a recurrence. Now I believe it’s fitting for most Head and neck cancers . There are about 27 Proton Centers throughout the U,S . I had maybe three location to zap, but sometimes that took 30-45 minutes due to proper body positioning, and changing you position. There are newer type of protons called IMPT, Intensity Modulated Proton Therapy, that changes the Proton callibrariob setting and camera position, so it would be faster as My three zaps only tool 2 minutes, is silent, and fast, but most often took longer. I couldn’t see it doing like my first radiation with IMRT with 17 zaps, which took 15 minutes

p16 is a surrogate marker for HPV, which can be gotten 20 years ago or more, hidden, and resurfaced now as cancer. Most of the HPV reheated Cancer are found in the oropharynx in the tonsil or base of tongue. It’s actually a better type of cancer cancer and prognosis.

Anyway, you’ll find out more during your doctor visits.


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: Mar 2011
Posts: 1,024
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Hello Gigi, sorry that you too have need of this site. As Paul states most unidentified HPV primary's are eventually found either at the Base of the tongue or in the tonsillar crypts. You are at one of the best places for treatments . Trust your team.
HPV is an indolent virus. Most of us get this virus in adolescence or our early twenties. Most of us clear the virus within 2 years. Only a very small percentage of people do not clear the virus and in a small percent of these people, a cancer will develop over the next 20-40 years. You see, it takes years for a cancer to develop. It isn't caused by a recent infection. My husband of 37 years had the HPV cancer - base of tongue. I don't care where he got it. Did I give it to him? Who knows. It doesn't matter. It was so long ago.
I do though tell everyone to ensure that all their young, Girls and Boys are vaccinated against this disease.
I wish you guys well with treatments.
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: Oct 2012
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Hi, my husband’s HPV oropharyngeal cancer appeared as swollen lymph nodes on one side of his neck. He went to see his ENT and was given antibiotics. The nodes went away. Half a year later, the nodes came back. He was referred to the otolaryngologist at the hospital who gave him a biopsy which involved putting him under and scoping a quarter ( from the neck down) of his body. I have forgotten what it was called, quadri something. That was how the SCC was diagnosed. The whole time he was “healthy” and there was nothing out of the normal for him. He also had a CAT scan prior to the biopsy. The otolaryngologist at the hospital told us that it’s a cancer that cannot be detected by blood tests. They found the HPV by applying a dye to the biopsy sample. In fact, the doctor said we would be hearing about HPV related cancer more and more. That was in 2015.

The problem with HPV-related oropharyngeal cancer is that it is usually free of noticeable symptoms until it’s quite late. When I asked the doctor what stage the cancer it was at, he said one of the higher stages. My husband chose to think it was stage three, I chose to think it was stage four.

Having gone through the cancer journey with my husband, I would say now that it does not matter what stage the cancer’s at since the treatment is essentially the same. The patient is given radiation (in my husband’s case IMRT) and chemo. For this reason, I would suggest focusing instead on how to mitigate the range of side effects of the treatment such as intake, dental care, dealing with the sores that result from radiation and doing the swallowing exercises. I also talked to my husband about accepting that he has the cancer and to work himself towards being able to talk about it with his friends and family instead of keeping it a secret, which a lot of people seem to want to do. It is emotionally so much more helpful to accept than to skirt around it.

Please come back and post if you have questions. We are in your corner.


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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