New diagnosis - Stage IV Nasopharyngeal Cancer metastasized to lymph nodes and lungs
Hello all, I am new here and I am hoping to gain a such insight so I can help my husband through this new journey and perhaps in turn, after we’ve been through it awhile, perhaps his experience might can be helpful to someone else.
He is 55 years old, been retired from the military after 30 year when he was 48. In that time, we both have gotten out of shape, overweight and depressed. He was also medically discharged from the military after having a stroke when training combative exercises, someone choked him out too long. He has PTSD, high blood pressure, some remaining cognitive issues from the stroke that surface unexpectedly due to certain circumstances, like can’t remembering things, has a hard time finishing some sentences if under pressure, etc., and over the last few years he has been diagnosed with congestive heart failure.
He was recently diagnosed with Nasopharyngeal cancer that has metastasized to the lymph nodes and lungs. He first noticed a knot under his ear in his lymph node area about 6-9 months ago. Because he has had a couple sebaceous cysts in the past, he first thought that was most likely one of those. In probably September he noticed another one come up and then shortly after noticed one on the other side of his neck. He had also started coughing real bad, not constantly, but when he starts he can barely talk for coughing for a bit. He never smoked but he did chew tobacco his whole life and still does.
They did the biopsy on the lymph nodes first. The results came back as Stage IV Squamous Cell Carcinoma. He told me just the other day, he also wrote down negative-HPV, P40, CK5, CK8-18 and I think he said R63. I haven’t a clue what all that means, haven’t had a chance to look any of it up. I have been reading as much as I can about the primary Nasopharyngeal cancer at this point. I did talk to the doctor on the phone after get had the appointment and asked him what he thought the prognosis would be if he didn’t choose to do treatment because I have been reading some horrific stuff especially about an drug called Keytruda. I about fell over when he said maybe 3-6 months.
Before the discovery of the nasopharynx tumor and the biopsies on it and the two spots in his lungs, the doctor said his hope for chemo and radiation was a cure. Yesterday, when he said he was as worried about his other health issues as the cancer, he said if he could handle the treatment regiment it would “buy him some time”. I failed to ask what that meant.
Initially the plan was to do chemo 5 days a week for 6 weeks, and radiation one day a week. NOW, since all the biopsies are back, they are planning on three weeks of Chemo, then will check to see if anything has improved before proceeding.
I would appreciate comments, ideas, suggestions, etc. Healing and comfort blessings to you all.
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I also jotted down the letters and numbers of P40, CK5, CK8-18, R63.
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Hello, Blessings, and welcome to the forum. Sorry, you have to visit with us but I hope you find some help here.
I don’t think I will be much help to you but maybe I can help with explanations of some things and help you by looking some things up.
I would start by saying that after reading your description I would be under the opinion that your husband is a complex case not just because of his cancer being in more than one place but also because of his other underlying health circumstances.
Also, I would like to thank your husband for his service to our country and thank you for being a supportive wife.
At this point, I am assuming he has had a CT Scan with contrast and a PET Scan since they found the cancer in his lungs, but that could have just as easily be found with a CT Scan of the chest.
First part is the biopsy came back “Stage IV Squamous Cell Carcinoma” below are the stages of Squamous Cell Carcinoma.
The characteristics and stages of squamous cell cancer are:
Stage 0 squamous cell carcinoma: Also called carcinoma in situ, cancer discovered in this stage is only present in the epidermis (upper layer of the skin) and has not spread deeper to the dermis. This stage of squamous cell carcinoma is also called Bowen's disease of the skin, which appears as red or pink scaly patches, mostly on skin that's often exposed to the sun.
Stage 1 squamous cell carcinoma: In stage 1, the cancer is less than 2 centimeters, about 4/5 of an inch across, has not spread to nearby lymph nodes or organs, and has one or fewer high-risk features.
Stage 2 squamous cell carcinoma: In stage 2, the cancer is larger than 2 centimeters across, and has not spread to nearby organs or lymph nodes, or a tumor of any size with 2 or more high risk features.
Stage 3 squamous cell carcinoma: In stage 3, the cancer has spread into facial bones or 1 nearby lymph node, but not to other organs.
Stage 4 squamous cell carcinoma: In stage 4, the cancer can be any size and has spread (metastasized) to 1 or more lymph nodes which are larger than 3 cm and may have spread to bones or other organs in the body.
Negative HPV-Negative HPV test result: High-risk HPV was not found.
Positive HPV test result: High-risk HPV was found.
It is known that HPV positive responds better to treatment and I researched a bit but could only find rather technical accounts of it, not easy to understand to post here.
As far as the numbers P40, CK5, CK8-18, R63 the search I did came up with an explanation involving the lung cancer. Below is a link with detailed information explaining it from American Cancer Society.
Understanding Your Pathology Report: Lung Cancer
As I said before it seems your husband's case is complex.
The pretty much standard treatment for many H&N cancers is 35 radiation treatments with chemo beginning middle and at the end. This treatment works well but is at the least very difficult to downright brutal, so any other health circumstances make it even harder and with more risk.
It appears due to his situation they have a plan worked up for his particular situation.
“Initially the plan was to do chemo 5 days a week for 6 weeks, and radiation one day a week. NOW, since all the biopsies are back, they are planning on three weeks of Chemo, then will check to see if anything has improved before proceeding.”
I don’t know where he is receiving care, whether it is a major cancer center or a local hospital but I would say if you absolutely trust his physicians and treatment team stay with them and be confident in the treatment and plan they have for him.
The other thing you could do is get a second opinion and if you do decide to do that I would recommend going to a well-known cancer center or a major hospital. His medical records can be shared with other hospitals easily these days by computer.
You folks are facing a difficult time with difficult decisions and I hope I have helped here in some small way. Feel free to keep us updated and ask any additional questions and I will help as I can.
Always take a notebook to any meeting to write stuff down, you can’t remember it all and record with your phone if possible or if needed. There are voice recorder and video recorder options on phones.
I have found personally that a positive attitude helps greatly and prayer and faith in God. Prayer is very powerful.
I have put you on my prayer list.
Take Care God Bless-Russ
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Thank you very much for your very helpful reply. It answered a lot of questions and gave me some info where to find more. You are correct, the doctor is very concerned about his other health concerns and said the regiment will be very difficult. He was in the hospital a week while they tried to get the last two biopsies because his heart was in aFib and they couldn’t get his heart rate below 100 to where they felt safe putting him under for the biopsies. They were finally able to get the two biopsies and they did do the ablation to put his heart back in rhythm before he was discharged though.
He is being treated at the Sarah Cannon Cancer Center at Centennial Hospital in Nashville. Vanderbilt was our other choice but we felt the good ole “dear Minnie Pearl” center was a better option, so we feel relatively good about the care he will be receiving. He did have a PET scan and a couple CTs but the doctor really wanted a MRI but the testing center wouldn’t do it because he has a bullet in his lower spine, DESPITE him having had an MRI there in 2010 and numerous ones since. So now the doctor is hoping to get a CT scan of the head next week.
I felt the news wasn’t good but after my private phone call with the doctor, it sounded even more grim. My husband has battled depression too and is not always the most optimistic person but I sense a change in his “will and determination” since the diagnosis so I hope that continues. That was my very first concern when we heard the diagnosis.
We also believe very much in the power of prayer and we appreciate those deeply. I am also eager to check out the super thread. Appreciate your kind words about his military service. Even though it may be connected to this cancer, I believe he’d do it all over again. Thank you again!
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Bless,
I was also NPC - (mine was Stage 3, as it had spread to my neck).
I hope your Oncology team has great success helping him get what he needs, to get well!
Treatment is a challenge, for sure - but if it stops it, that's a fantastic thing. He will lose weight - no doubt, so I always remind people to EAT all of their favorites and LOTS of them!
I'm very glad to hear that your husband has you in his life - your positive outlook, prayers and support will be VITAL for him!
I wish you the best possible outcome...
MG
P.S. I was Navy - what service was your husband in?
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Thanks, Russ! (I'm guessing Blessing's husband is Marine or Army...)
He sounds like a fighter ... and with her support, I think he will get through this!...
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Sir,
I am so sorry it has taken me so long to reply! Also helping my daughter with her 3 and 5 year olds while she finishes her nursing degree, sometimes I don't know whether I'm up or down. My husband was in the Army National Guard and out of his 30 years, 18 were full time because he was AGR, full time Guard for those that might not know. He was a master gunner and his dream was to retire, then go to Ft Banning and then do training as a civilian. Being medically discharged at age 49 was never his plan. Thank you for your kind words. I'm glad to see you hear writing after Stage 3! I hope things are going well for you! Mine had his first treatment of chemo today, so he's off on this journey! Thank you for your service! 🇺🇸
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Blessing,
No problem, my replies are to support YOU and your HUSBAND - so you can reply any time you want.
If you're helping with grandkids, I can definitely see where this would stretch you thin. But, a Nursing Degree is a fantastic thing - so I'm glad you're there to help her with that!
OK - so I'm sure your Oncologist told you that Cancer treatment is a real challenge. Please make sure he EATS as much as he can. He should be prepping for some weight loss ... and the less, the better!
Chemo and Radiation can also take a lot out of a person. He will get VERY TIRED and need his rest!
The rest is stuff like nausea, etc. The best advice I can give you is, don't be SHY about telling your caregivers what issues he's having, and what to DO about them. They've heard it all before. It's NOT time for your Master Gunner to be stoic. Tell him to let them know what's bothering him - so they can help him handle it.
With such a wonderful partner in life as yourself, I'm already betting on him getting through all of this - and getting back to a normal life in a few months. Hang in there - it feels like forever, when you're going through it ... but you WILL look back on it, someday!!
Thanks so much for sharing with us; sometimes the kindest thing you can do for others, is let them help you!
MG
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