| | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | That's great news. I'll keep all good thoughts flowing for a negative result.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 66 | I am wondering how things went with the follow up and biopsy?
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
| | | | | Joined: Nov 2015 Posts: 18 Member | | OP Member
Joined: Nov 2015 Posts: 18 | Hi everyone. I am just here to give a quick update. I wish I could say that all is well, however everything is still up in the air. My husband has now been to the Dr. several times, one of which is because we have switched insurance as of January 1st 2016 and had to see a new Doctor. Luckily, the new Doctor is actually the same Doctor from 5 years ago when my husband was originally diagnosed. Anyway--- LONG STORY SHORT- an in office biopsy has not been done at any of the visits. Both Doctor's my husband has seen say that the area of concern is too large to biopsy in their office and state that the entire area must be surgically removed and biopsied during surgery. The Doctor's are also stating that the surgery needs to be done soon, (30 days) in case the cancer is back, as action will need to be taken for treatments immediately.
Well, my husband is not going to go forward with the surgery to perform the biopsy, as it is something he doesn't want to take on right now, and is too much to handle.
Thank you all for your support and kind words. Please pray for my husband, myself and our children. I will continue to fight for him...
Wife of a stubborn survivor
Scared of the unknown
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im very sorry to read about your husbands refusal for surgery, I was hoping to see you write a positive update. Im sure you have your hands full with everything going on with your husband. Being a caregiver is a difficult job, even harder when the patient doesnt cooperate as much as the caregiver wants.
Which type of doctor has he seen so far? Im wondering if it is a surgeon as surgeons usually will recommend surgery is the best option. Is it possible to have another opinion at a comprehensive cancer center (CCC)? Im also wondering why your husband is refusing to have the biopsy now. Is it the size of the tumor that has changed his mind? By putting things off it only gives it the opportunity to advance further. No matter what his decision, we will be here to lean on.
Wishing you both all the very best.
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: Nov 2015 Posts: 18 Member | | OP Member
Joined: Nov 2015 Posts: 18 | Hi Christine. He has been seeing ENT's who specialize in head neck and throat cancers. We just switched over to Kaiser, so I don't know what options we would have for cancer care centers and still remain in network with our plans. Honestly, I don't think he would be open to going to anyone else anyway. When we went into the doctor on Thursday last week, I think that when the doctor began speaking about radiation as the next course of action should the results come back positive, then my husband just shut off. Denial is a very hard thing. This is by far the hardest thing I have ever had to deal with. If it was my child, I am the parent and I make he choice....this is my husband, and he is an adult, it is his body....and his choice. Very hard.
Do you know if anyone on this site is local to Colorado? Just curious... Referrals maybe... But like I said, I doubt he will be willing to see anyone else anyway.
Anxiety is now creaping up with me... But I guess that's expected.
Thanks again for being here...I appreciate it more Than you know.
Wife of a stubborn survivor
Scared of the unknown
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | At OCF, we all understand what you and your husband are going thru. Its ok to lean on us for support. We get you!
There are many members here from Colorado. Not all members list their location. Maybe one from your area will respond to this thread.
Best wishes with everything!
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: Nov 2015 Posts: 18 Member | | OP Member
Joined: Nov 2015 Posts: 18 | Thanks Christine, I hope that any Colorado contacts read this thread and comment as well. I wonder if it would be worth starting a new thread just for that... What do you suggest?
Wife of a stubborn survivor
Scared of the unknown
| | | | | 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 | I'm really sorry to hear your update.
Does your Husband take anti depressant medication? Just a thought.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | With our site having members from all over the world, finding someone from a specific area isnt easy. Even with a new thread, its a needle in a haystack. If you would find someone, they may not have the info you are looking for.
If you want to speak to someone about things you can call me. I dont have info about your specific area. But maybe your husband would want to talk with another OC patient/survivor. Often patients feel alone with their ordeal and it can easily feel overwhelming. Talking with someone who has been thru it could help your husband see the bigger picture.
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: Nov 2015 Posts: 18 Member | | OP Member
Joined: Nov 2015 Posts: 18 | Tammy, He is against everything having to do with medicine...so No, he isn't. However, if things continue, I may be the one having to take antidepressant meds-
Last edited by Scaredwife; 01-25-2016 03:34 PM.
Wife of a stubborn survivor
Scared of the unknown
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