SCC of lymph node, unknown primary -- need RAD experience, and advice on recurrence

Lipscova44

I'll try to keep this somewhat short, but don't know how successful I will be.  My Dad was recently diagnosed with SCC when a lymph node became inflamed in a matter of weeks. Had neck dissection about 4 weeks ago -- about 50 surrounding lymph nodes, left tonsil and BOT came back negative (HPV/P16 negative as well). Tumor was quite large... about the size of a golf ball. We do not know where primary began as PET scan only lit up in lymph node before tumor was removed. 

He is scheduled to begin rads June 1 as well as immunotherapy  (Erbitux). The problem is, he is greatly considering NOT moving forward with rads. He is afraid that the cancer could recur in his lungs OR lungs could be primary, then rads (and all the side effects that accompany it) will be for nothing. Is this likely to happen? Has anyone here had recurrence in lungs? Know rates of recurrence in this area (lungs)? My Dad is a retired Government accountant, so the more I can speak in numbers when it comes to this stuff, the better. Ha, Did I mention he's fairly stubborn? 

Do most SCC recur in head and neck?  I am an only child, age 31 (female), and wish so badly he would move forward with rads and immunotherapy, but don't blame him for being scared and questioning the treatment. But, I believe he's leaning towards quality over quantity at this time. Anyone have advice or input that might help me to make my case to encourage him? 

I'd also love to hear some of your personal experience with radiation -- good or bad. My parents are the only immediate family I have and selfishly, I would like to keep them with me as long as possible. Thanks so much for reading. Any and all advice would be greatly appreciated. ♡ Thank you all in advance. 

 

- Vaughan 

CivilMatt

welcome

Vaughan,

Welcome to the H&N forum, I am sorry that your Dad has SCC and “on the fence” about treatments is a place many of us sat momentarily. It is tough when they don’t know the primary, but quite a few on here have rads and chemo with unknown primary and they do not have a reoccurrence.  There are so many cards at play that I don’t know what the best option is?  I trusted my team and jumped onboard the train.

You might wait and see what happens, but what happens might be bad, then again you have saved your rads for another day.

No joke about it, rads are cruel, but MOST do get better.  I got a lot better over the 5 years, but still suffer dry mouth, lack of saliva and different taste buds.

You want numbers, go to doctor google, he is loaded.

Best of luck (I hope you are packing Aces).

Matt

Lipscova44

CivilMatt said:

welcome

Vaughan,

Welcome to the H&N forum, I am sorry that your Dad has SCC and “on the fence” about treatments is a place many of us sat momentarily. It is tough when they don’t know the primary, but quite a few on here have rads and chemo with unknown primary and they do not have a reoccurrence.  There are so many cards at play that I don’t know what the best option is?  I trusted my team and jumped onboard the train.

You might wait and see what happens, but what happens might be bad, then again you have saved your rads for another day.

No joke about it, rads are cruel, but MOST do get better.  I got a lot better over the 5 years, but still suffer dry mouth, lack of saliva and different taste buds.

You want numbers, go to doctor google, he is loaded.

Best of luck (I hope you are packing Aces).

Matt

Time will tell

Thank you for the reply and welcome, Matt. I truly appreciate it.  I've spent so much time on Google, it should recognize my face, know my name and buy me dinner. Unfortunately, I am having problems finding the numbers I am looking for, or many related statistics.  

I am hoping and praying that my Dad goes through with the rads and suggested treatment, but only time will tell. I believe the waiting and dread can be the worst of it sometimes. I know this was definitely the case when waiting for his neck dissection surgery.  I know dry mouth, lack of saliva and different taste buds are not pleasant to go through, but if it works, I think it may be worth some suffering. It'd mean the world to me for my Dad to stay a while longer, and who knows, maybe even get to witness me have a child and get married one day. That's a BIG maybe as I am single for the time being! If I could do something magical to make him live forever, I would certainly do it.

It's been difficult for us all to adjust to this cancer diagnosis -- besides diabetes and some cholesterol worries, he was fairly healthy for a guy his age (will be 70 in September). I know this diagnosis has him feeling very depressed, which I am not accustomed to. He's always been the one to make jokes. In fact, I have been trying to talk him out of doing his Jack Nicholson impression of "One that flew over the cuckoo's nest" when he begins Erbitux. You know, when Mac begins shock therapy and acts like he's been shocked into suffering from brain damage. I told him he's going to give the doctors and nurses (and my Mom and I) a heart attack... But, that's just Dad! They've already warned us of potential allergic reaction when beginning this drug, but they may just get a show instead. LOL!

I have said of cancer was a person, I'd highly consider hunting him down and beating him up for putting my Dad through all of this. We would at least have a very stern, unpleasant conversation with a few harsh words thrown at him and he would get the clue that I don't like him and he'd better leave my family alone ( and some of those words would be unfit for church and/or Sunday school). And let it be said, I am not a fighter and never have been! I just hate that this awful disease exists and affects so many people and their loved ones. 

 

- Vaughan 

Joel4

Similar History

Do you know if the one positive lymph node had clean margins or was their extracapsular spread?

I had about the same diagnosis as your Dad back in 2010.  One positive node in left neck with unknown primary, all other areas of suspicion tested negative.  The one positive mode had no extracapsular spread.  My Oncologist suggested that we not do rads or chemo and instead to schedule follow ups every 6 weeks.  Once the primary was found we would then do rads and chemo and have a better idea of where exactly to direct the treatment.

One follow up led to another and five years later I was declared cured.

Unfortunately it is not a totally happy story as nearly seven years later another positive node was found on my right neck and I am now five weeks post radiation and chemo.  Side effects are toughc but I see improvement every  week.

I can make an argument for both the wait and see approach, and the throw the kitchen sink at it approach.  One difference is mine was HPV positive and is therefore less aggressive and you can maybe afford to wait and see more than the non HPV variety.

I'm sure I said nothing to add clarity to the situation as these are very tough decisions and everyone's situation is different.  Hope you get the answers you are looking for and that your Dad settles on an option that you will be comfortable with.  I'll be praying...

Joel

caregiver wife

Lipscova44 said:

Time will tell

Thank you for the reply and welcome, Matt. I truly appreciate it.  I've spent so much time on Google, it should recognize my face, know my name and buy me dinner. Unfortunately, I am having problems finding the numbers I am looking for, or many related statistics.  

I am hoping and praying that my Dad goes through with the rads and suggested treatment, but only time will tell. I believe the waiting and dread can be the worst of it sometimes. I know this was definitely the case when waiting for his neck dissection surgery.  I know dry mouth, lack of saliva and different taste buds are not pleasant to go through, but if it works, I think it may be worth some suffering. It'd mean the world to me for my Dad to stay a while longer, and who knows, maybe even get to witness me have a child and get married one day. That's a BIG maybe as I am single for the time being! If I could do something magical to make him live forever, I would certainly do it.

It's been difficult for us all to adjust to this cancer diagnosis -- besides diabetes and some cholesterol worries, he was fairly healthy for a guy his age (will be 70 in September). I know this diagnosis has him feeling very depressed, which I am not accustomed to. He's always been the one to make jokes. In fact, I have been trying to talk him out of doing his Jack Nicholson impression of "One that flew over the cuckoo's nest" when he begins Erbitux. You know, when Mac begins shock therapy and acts like he's been shocked into suffering from brain damage. I told him he's going to give the doctors and nurses (and my Mom and I) a heart attack... But, that's just Dad! They've already warned us of potential allergic reaction when beginning this drug, but they may just get a show instead. LOL!

I have said of cancer was a person, I'd highly consider hunting him down and beating him up for putting my Dad through all of this. We would at least have a very stern, unpleasant conversation with a few harsh words thrown at him and he would get the clue that I don't like him and he'd better leave my family alone ( and some of those words would be unfit for church and/or Sunday school). And let it be said, I am not a fighter and never have been! I just hate that this awful disease exists and affects so many people and their loved ones. 

 

- Vaughan 

Time Will Tell

Vaughan,

I am so sorry you and your father are going through this.

I don't speak much about my husband's experience here because he has had a recurrence with mets to the lung.  I understand most of the people coming here are new to this journey and that our experience is not the information they are normally looking for.  

Honey, the "numbers" don't matter because at the very best they are an average and average does not apply to a single person/patient.  I understand being new and longing for every bit of information - I did it myself with my first cancer.  I made myself knowledgable about throat cancer.

I was a two time cancer survivor and my husband had survived open heart surgery when he was diagnosed with his primary over six years ago.  It was so advanced it had infiltrated his jaw and throat down and was finally wrapped around his larnyx.  There was no surgical option.

He did Erbitux and rads and was NED (no evidence of disease)  for almost 5 years.  His rads burnt every muscle in his throat and he worked very hard to continue to swallow at all.  He has never been able to get off his feeding tube.  He did not do chemo at  that time because the doctor did not think his heart was strong enough.

With his recurrence, because it had been so successful with his primary, he did Erbitux again.  When it was no longer successful, the tumor had erupted through his jaw and wrapped around his carotid artery until it failed in four locations.

And FINALLY, here is my point.  After emergency surgery to stop the bleeding, and being on chemo once every 3 weeks, his primary has reduced dramatically, and last Tuesday's CAT scan they cound find no trace of disease in his lung!!  He has maintained GREAT quality of life all along the way.  He walks up to 5 miles a day and has throughout his treatment.  We are waiting to talk to doc this week for his report.

If he were the average,  he would not have survived his primary diagnosis.  If his doctors had followed the averages, they would not even have treated his lost cause.  But, they did what they thought was best for HIM.  To give him the very best chance they could.  The doctors cannot predict what every individuals response will be, but you find the ones that you believe are giving you the very best chance they can.  Perhaps his doctors can better expain to him why they believe this is the best treatment for him.

Rads are different for everyone because the targeted area is different.  You do get through it and it is behind you much faster lookng back than going in.  You  find wonderful support, like here, along the way.

And there is great hope, even for those like my husband diagnosed with mets.  I had to get a second cell phone just so I could find my husband, off another of his adventures!!

I hope this helps, and I wish I could give you a hug,

Crystal