Introduction - Husband has Metastatic Squamous Cell Carcinoma & Stage 3 Severe Bullbous Emphysema

PandoraSpice

Hello CSN,

 

I am a brand new member here and feel I should take some time to introduce myself.

I am a person that enjoys forums and chats and because of this I realize it will take me some time to understand the culture here at CSN.  But, I do want to say I am sensitive to such issues and will endeavor to be a good member.

I am a woman who is nearly 45 years old with a 63 year old husband.  This year we celebrate 25 years together.  We have always felt we were soulmates and though our relationship evolves over time, that core feeling never changes.  .  I suffer from chronic pain due to aggressive osteo arthritis, fibromyalgia and rather large abdominal adhesions that make the lower end of my GI life rather interesting indeed.  But, needless to say, all of this is nothing compared to a cancer diagnosis.

For the entire time we have been together, my husband and I have smoked cannabis.  Also during that time, he has smoked tobacco.  As we have aged, cannabis has evolved from something exclusively recreational to something much much more medicinal.  Tobacco for him has just been a dreadful addiction.  He has quit many others in his long life, but nicotine is turning out to be the worst.

 

Our cancer journey began just about a month or so ago.  My husband had an enlarged lymph node (2.7 cm) that was hard and not going down.  He was worried about cancer because he had had co-workers die of lymphoma in his past and due to a "genetic timebomb" of throat cancers on his father's side of the family, regardless of smoking behavior or not.

He went to the county ER and they immediately took some needle biopsies.  He gets a call a few days later saying he has a scheduled appointment coming up with an ENT and that the biopsy was "carcinoma."  We were very confused, thinking it was lymphoma at first.

The ENT examined him and found part of a tonsil left over from a tonsillectomy over 50 years ago.  A piece got left behind and was also cancerous. 

So, it turned out that he has Squamous Cell Carcinoma in his left over tonsil and his lymph node.  They CT'd his body and found nothing else other than severe emphysema .  So, technically it was Metastatic Squamous Cell Carcinoma.

A week later he had the tonsil removed via surgery.  They took a huge number more biopsies of throat, tongue and mandible.  He was not a happy camper during recovery and after 1.5+ weeks is just starting to get back to normal (eating).

Now they are saying, because they cannot find the source, that he is ony T1 with 95% chance of survival in the next 5 years, but that technically it is metastasized and he will be watched carefully in the future.

Also, coming up, they are going to give him a big blast of radiation (I believe only one dose, but not sure) to the head, neck and torso.  It could have been tightly focused if they found the source, but without the source, it needs to be spread out and will do a lot of damage (salivary glands, sense of taste, etc.). 

We are having trouble finding recovery times for radiation but it seems it's at least six months. 

This is a difficult time for us.  I've never had a cancer with anyone in my family, ever.  It has filled us with morbidity and more than a bit of depression.  We try to stay positive and mostly succeed, but there are minor psychological issues.

I guess we will know a lot more after his next appointment in a couple days.

I appreciate this resource and look forward to learning and participating more.

longtermsurvivor

Welcome to the forum

and thanks for the clear, concise introduction.  The bad news is, he's likely in for some pretty tough times.  The good news is, he has a favorable prognosis.  Your husband's situation is a fairly common one.  That being a single large node, and a very small, or essentially undetectable primary.  The recommendation for IMRT, possibly without chemotherapy, would be very standard.  Most of us have been through something like he is headed into, so feel free to ramp up the questions.  And by all means read the superthread.  It's a great jump start for everyone at the outset.

 

Pat

PandoraSpice

longtermsurvivor said:

Welcome to the forum

and thanks for the clear, concise introduction.  The bad news is, he's likely in for some pretty tough times.  The good news is, he has a favorable prognosis.  Your husband's situation is a fairly common one.  That being a single large node, and a very small, or essentially undetectable primary.  The recommendation for IMRT, possibly without chemotherapy, would be very standard.  Most of us have been through something like he is headed into, so feel free to ramp up the questions.  And by all means read the superthread.  It's a great jump start for everyone at the outset.

 

Pat

Thanks!

Thank you so much Pat/longtermsurvivor.  Basically that's the impression we have.  It looks like he's much more at risk from the emphysema which only has 50% survival in next 4 years.  BUT, he seems atypical.  He only has a light cough.

This is precisely the type of resource I have been looking for.  And yeah, there will be lots of questions.  I'm kind of at the base of my learning curve right now.  But, being an information addict I hope to address that concern quite rightously.

 

I was saddened to see that the Chat Room here is completely dead.  I have found chats to be very very helpful just for the in-person, live responses, support, answers to questions, provisions of relevant links, etc.  Too bad more members don't utilize this potential resource, eh?

Billie67

longtermsurvivor said:

Welcome to the forum

and thanks for the clear, concise introduction.  The bad news is, he's likely in for some pretty tough times.  The good news is, he has a favorable prognosis.  Your husband's situation is a fairly common one.  That being a single large node, and a very small, or essentially undetectable primary.  The recommendation for IMRT, possibly without chemotherapy, would be very standard.  Most of us have been through something like he is headed into, so feel free to ramp up the questions.  And by all means read the superthread.  It's a great jump start for everyone at the outset.

 

Pat

Hello
Nice to meet you, sorry for the reason. I understand this is a scary time for you, we have all been there and some on this site are still right at those beginning stages too.
The good news is, this treatment has come a long long way and is becoming more successful everyday. I'm not going to lie, it'll get tough but it is doable.
I myself had stage 4 laryngeal cancer and so far (8 months since treatment ended)I'm free of the beast.
As for treatment, my guess is that your hubby will have 6-8 weeks of 5 day a week radiation treatments. I'm not aware of any head and neck patients whom have had a single big blast of radiation but maybe I'm just unaware.
You will most likey very soon meet with a radiation oncologist and. Maybe even a medical oncologist to see what they think about chemo. I had both radiation and chemo(erbitux) as many others on here have had.
If I may offer you any advice, please don't go searching other Internet sites! Most of them have outdated information and much of it won't pertain to your situation. This site here is full of first hand information and no questions are off limits. Other sites will just honestly freak you out! It's not worth the anxiety you will have from searching out there. My doctor told me about searching the web like this, "you can find your diagnosis to be as good or bad as you want by searching the web....stay off of the Internet"
He gave me this site as a support tool and I've never looked anywhere else.

Anyway, welcome again and ask us anything and keep us posted.
Billie

Billie67

Billie67 said:

Hello
Nice to meet you, sorry for the reason. I understand this is a scary time for you, we have all been there and some on this site are still right at those beginning stages too.
The good news is, this treatment has come a long long way and is becoming more successful everyday. I'm not going to lie, it'll get tough but it is doable.
I myself had stage 4 laryngeal cancer and so far (8 months since treatment ended)I'm free of the beast.
As for treatment, my guess is that your hubby will have 6-8 weeks of 5 day a week radiation treatments. I'm not aware of any head and neck patients whom have had a single big blast of radiation but maybe I'm just unaware.
You will most likey very soon meet with a radiation oncologist and. Maybe even a medical oncologist to see what they think about chemo. I had both radiation and chemo(erbitux) as many others on here have had.
If I may offer you any advice, please don't go searching other Internet sites! Most of them have outdated information and much of it won't pertain to your situation. This site here is full of first hand information and no questions are off limits. Other sites will just honestly freak you out! It's not worth the anxiety you will have from searching out there. My doctor told me about searching the web like this, "you can find your diagnosis to be as good or bad as you want by searching the web....stay off of the Internet"
He gave me this site as a support tool and I've never looked anywhere else.

Anyway, welcome again and ask us anything and keep us posted.
Billie

Oh I forgot...
I don't want to sound like a bossy mama bear but, the smoking really needs to stop. Smoking of anything! If he needs to do a patch or whatever please do it!
Easier said than done I know but it's crucial for a positive outcome.
Billie

Skiffin16

Welcome PS...

I had a similar, yet a little more defined diagnosis STGIII Tonsil (right), and a lymphnode. I had the tonsils removed, and then a total of sixteen weeks of chemo, seven of which were concurrent with radiation.

More than likely at minimum, the raeiation you speak of will be more in the range of 35 daily doses..., That is pretty much the standard... You might get away with no chemo being only STGI, not sure....

The unknown primary isn't a real big deal as many have unknown primarys..., not sure if only radiation though with no chemo.

Also, check out the SuperThread, it's the very first post on this forum... A huge amount of information and resources along with many links to great information.

BTW, I am in my fourth year clean and clear post treatment..., surviving is really good these days for this type of cancer.

Treatment is tough, but very doable...

Best

John

 

 

fishmanpa

Sounds Similar

Hi Pandora,

Welcome to the site. Sorry it has to be under these circumstances,

Your post has several similarities to my journey. I too am/was addicted to tobacco. I smoked cigarettes for many years and switched to cigars. All in all I smoked for 35 years. I quit tobacco last August when I developed a sinus infection with a swollen lymph node on the left side of my neck. I switched to the electronic cigarette which produces a vapor that delivers the nicotine. I found it quite satisfying and was able to lower the nicotine through selecting light, ultra light and eventually no nicotine cartridges. I still keep it around with the no nicotine cartidges and it comes in handy when the stress becomes too much to handle. While there's no nicotine, a couple of puffs of vapor satisfies the urge and lowers the stress. I asked my team about it and while they would rather I not do it at all, they all agree it's better than tobacco. I can tell you that while I was recovering from surgery (and it was a challenging recovery), I couldn't even bear the thought of inhaling anything! I've not touched the electronic cigarette in three months (just before the frst surgery). All will tell you. tobacco has to go bye bye.

Long story short. After two rounds of antibiotics and the swollen lymph node persisting, I went to th ENT and had a fine needle biopsy done. Prior to that, I had done what most of us have done and googled the symtoms and was convinced it was a form of lymphoma. The biopsy came back Squamous Cell Carinoma Head and Neck. I had a tonsillectomy and biopsies done of my tongue and nasophrynx. No primary was found. Dx was Tx N2b MO Stage IV. After a 2nd opinion (I highly recommend you get one at a Comprehesive Cancer Center), I had the cancerous lymph nodes removed along with 24 additional lymph nodes on the left side of my neck. I also had my lingual tonsils removed and more biopsies done. While the surgery was successful in removing the cancer, they still didn't find the primary. A true unknown primary accounts for only 1-2% on all head and neck cancers. Again, it's rare so a 2nd opinion is prudent. 

I'm about to start treatment which will consist of 35 radiation treatments. 5 days a week for 7 weeks and 7 weekly chemo infusions (the tumors broke out their capsule so chemo will hopefully track down ad kill any rouge cancer cells that might have escaped). I can't imagine they would only do one radiation treatment. It's not the norm for this type of cancer. Most likely it will be 6-7 weeks but I may be wrong. 

As one who has not yet gone through treatment I can't give you a time frame on recovery but I know from reading and the experience of others here, it varies from a month to six months and longer. Everyone is different in how they react to treatment. It's a one day at a time journey.

Truly I know how difficult this must be for you. My partner and caregiver has been a rock for me. Her positive attitude and fighting spirit along with her love gives me an added strength I wouldn't have had otherwise. You're going to need to be that rock for your husband and based on your post, I don't see that being an issue. 

Cannibis can/will come in handy during the treatment as both a pain killer and anti nausea aid. The added benefit of an appetite enhancer desn't hurt either

Best wishes, positive thoughts and prayers coming your way.

"T"

PandoraSpice

Billie67 said:

Hello
Nice to meet you, sorry for the reason. I understand this is a scary time for you, we have all been there and some on this site are still right at those beginning stages too.
The good news is, this treatment has come a long long way and is becoming more successful everyday. I'm not going to lie, it'll get tough but it is doable.
I myself had stage 4 laryngeal cancer and so far (8 months since treatment ended)I'm free of the beast.
As for treatment, my guess is that your hubby will have 6-8 weeks of 5 day a week radiation treatments. I'm not aware of any head and neck patients whom have had a single big blast of radiation but maybe I'm just unaware.
You will most likey very soon meet with a radiation oncologist and. Maybe even a medical oncologist to see what they think about chemo. I had both radiation and chemo(erbitux) as many others on here have had.
If I may offer you any advice, please don't go searching other Internet sites! Most of them have outdated information and much of it won't pertain to your situation. This site here is full of first hand information and no questions are off limits. Other sites will just honestly freak you out! It's not worth the anxiety you will have from searching out there. My doctor told me about searching the web like this, "you can find your diagnosis to be as good or bad as you want by searching the web....stay off of the Internet"
He gave me this site as a support tool and I've never looked anywhere else.

Anyway, welcome again and ask us anything and keep us posted.
Billie

Thanks & smoking cessation plan

Hey Billie67,

 

Thank you so much for your warm welcome.  Go ahead and be a firm mama bear - I frequently play that role myself and if I become a longterm member here I'm comfident you will also see me calling folks on their stuff. . . . so keep it coming I say,

Yeah, we are getting the sense it's not going to be fun and hopefully he will get A LOT more clarification on how much/many the radiation doses/treatments will be.

And yeah, heh, the internet.  Gads, we were alive and together long before there was a consumer internet.  We are sci-fi fans but still the whole thing seems rather wild to us.  As my husband loves to joke (stolen from "The Simpsons," if I am not mistaken), "You can't trust anything you read on the Internt.  Afterall, that's how World War I got started!"    I'm so glad we found CSN. 

 

And finally, the smoking.  Yeah, we know.  He very much wants to "quit this habit that is killing me."  He's switching to edible cannabis and is tapering down on the cigarettes.  He's now down to four (4) a day and will reduce to three(3) within another week or less.  It's the last one (1) that's going to be the most difficult, but he is more motivated than I've ever seen him before.

We have a wonderful 15 year old niece, 10 year old nephew and five year old nephew.  We very much want to stay alive until "the kids are grown," and do not know if that's in the cards.  He's trying to be strong during this time of extreme tests and I am trying to be as supportive as possible.

We seem to find ourselves apologizing a lot to each other.  I'm sorry he has to go through this and he's sorry he's putting me through this.  I love him so much.  I wish it were me instead of him, but this is the hand we were dealt so we will try to make the best of it.

Billie67

Pandora
I forgot to mention but my cancer appears to be nicotine related however, I've never smoked a day in my life. Mine is caused from second hand smoke, all the more reason for the hubby to quit! You don't want to jeopardize the health of your niece and nephew.
I understand about the apologizing to each other bit. My hubby and I did the same thing! I also remember thinking about how silly it was that I stressed over the stupid things like the dishes or laundry being folded right away.
I promise you, you will make it thru this stuff and your hubby will be ok too. Speaking from the patients point of view, I think you caregivers have a harder time than us.
One last thing, if you feel comfortable telling us where you live someone on here may be able to refer you to a dr or facility that they especially found helpful. Just a thought.
I'm in the Los Angeles area :-)
Billie

phrannie51

Hello Pandora....

I'm sorry you are joining this club....the one nobody wants to be in.  That being said, you have joined a very active...highly informed group of folks....all of whom have been on your end of the learning curve in the past....You have hit the lottery for finding supportive, kind, informative and very smart people.

I'm 62, and had Stage III Nasopharyngeal Carcinoma....two lymph nodes, one on each side of my neck.  I finished all treatments (chemo and rads) the end of August 2012. 

My first is advice....is the exact same as Billie's....don't go roaming internet trying to get all the information that is out there....too much of it is wrong, or confusing....and with cancer being as scary as it is, there is no sense in scaring yourself to death with misinformation or misunderstanding what you're reading.

I'm kind of like others here....I think there may be several weeks of radiation rather than one treatment....it is a hard treatment (not that it hurts or anything when it's happening, but the cumlative effects can be difficult).  He will get thru it, tho...and come out the other side just like the rest of us....

As for the ciggies....I quit nearly 4 years ago, but I used ecigs to do it (like T).....it's vapor rather than smoke, and only has 3 ingredients rather than the 1003 found in processed tobacco.  They made stepping off the cigarette habit WAY easier for me.  I could really feel the difference being addicted to a bunch of things that were in cigs, and just quelling the nicotine habit, the only addictive substance in an ecig.  I'm also thinking that quitting smoking pot is probably a good idea.....if it's a "must-use", then get it in an alternative way....eating it, vapor (I haven't smoked a joint in a about three decades so don't know what all forms it might come in these days ).  I'm pretty certain tho, that once radiation has started that he'll be unable to smoke anything as his mouth and throat will be too sore.

Somebody else said it....but I'll repeat it....there are no questions that can't be asked here....stick around and you will find yourself tucked under some very comforting wings.

p

 

fishmanpa

fishmanpa said:

Sounds Similar

Hi Pandora,

Welcome to the site. Sorry it has to be under these circumstances,

Your post has several similarities to my journey. I too am/was addicted to tobacco. I smoked cigarettes for many years and switched to cigars. All in all I smoked for 35 years. I quit tobacco last August when I developed a sinus infection with a swollen lymph node on the left side of my neck. I switched to the electronic cigarette which produces a vapor that delivers the nicotine. I found it quite satisfying and was able to lower the nicotine through selecting light, ultra light and eventually no nicotine cartridges. I still keep it around with the no nicotine cartidges and it comes in handy when the stress becomes too much to handle. While there's no nicotine, a couple of puffs of vapor satisfies the urge and lowers the stress. I asked my team about it and while they would rather I not do it at all, they all agree it's better than tobacco. I can tell you that while I was recovering from surgery (and it was a challenging recovery), I couldn't even bear the thought of inhaling anything! I've not touched the electronic cigarette in three months (just before the frst surgery). All will tell you. tobacco has to go bye bye.

Long story short. After two rounds of antibiotics and the swollen lymph node persisting, I went to th ENT and had a fine needle biopsy done. Prior to that, I had done what most of us have done and googled the symtoms and was convinced it was a form of lymphoma. The biopsy came back Squamous Cell Carinoma Head and Neck. I had a tonsillectomy and biopsies done of my tongue and nasophrynx. No primary was found. Dx was Tx N2b MO Stage IV. After a 2nd opinion (I highly recommend you get one at a Comprehesive Cancer Center), I had the cancerous lymph nodes removed along with 24 additional lymph nodes on the left side of my neck. I also had my lingual tonsils removed and more biopsies done. While the surgery was successful in removing the cancer, they still didn't find the primary. A true unknown primary accounts for only 1-2% on all head and neck cancers. Again, it's rare so a 2nd opinion is prudent. 

I'm about to start treatment which will consist of 35 radiation treatments. 5 days a week for 7 weeks and 7 weekly chemo infusions (the tumors broke out their capsule so chemo will hopefully track down ad kill any rouge cancer cells that might have escaped). I can't imagine they would only do one radiation treatment. It's not the norm for this type of cancer. Most likely it will be 6-7 weeks but I may be wrong. 

As one who has not yet gone through treatment I can't give you a time frame on recovery but I know from reading and the experience of others here, it varies from a month to six months and longer. Everyone is different in how they react to treatment. It's a one day at a time journey.

Truly I know how difficult this must be for you. My partner and caregiver has been a rock for me. Her positive attitude and fighting spirit along with her love gives me an added strength I wouldn't have had otherwise. You're going to need to be that rock for your husband and based on your post, I don't see that being an issue. 

Cannibis can/will come in handy during the treatment as both a pain killer and anti nausea aid. The added benefit of an appetite enhancer desn't hurt either

Best wishes, positive thoughts and prayers coming your way.

"T"

Double Whammy!

Forgot to mention... 

My cancer is HPV related. So I smoked AND I tested positive for HPV.  So I had a double whammy in the chances of contracting this disease. Fortunately the HPV bodes well for responding to treatment. 

"T"

PandoraSpice

Billie67 said:

Pandora
I forgot to mention but my cancer appears to be nicotine related however, I've never smoked a day in my life. Mine is caused from second hand smoke, all the more reason for the hubby to quit! You don't want to jeopardize the health of your niece and nephew.
I understand about the apologizing to each other bit. My hubby and I did the same thing! I also remember thinking about how silly it was that I stressed over the stupid things like the dishes or laundry being folded right away.
I promise you, you will make it thru this stuff and your hubby will be ok too. Speaking from the patients point of view, I think you caregivers have a harder time than us.
One last thing, if you feel comfortable telling us where you live someone on here may be able to refer you to a dr or facility that they especially found helpful. Just a thought.
I'm in the Los Angeles area :-)
Billie

Hello Billie67,

 

Yeah, I hear that - the more we learn about second hand smoke, the more we come to understand just how deadly it is.  At least the smoker has the benefit of a filter!

The smoking cessation plan via taper-down is working well, thus far.  It's not easy for him, but he's doing it and completely committed, to "quitting this habit that is killing me."

 

In all the time I've known him he has been a hyper-responsible smoker - he never smokes in an indoor room, being very conscious of second hand smoke.  Also, whenever out and not near an ashtray, he field strips his butts and saves the filter for later disposal.  Needless to say, even these very responsible smoker behaviors will soon cease entirely.  Also, needless to say, it's hard to quit a 50+ year old habit.  I really really admire his strength during this time.

I'm so sorry that you appear to have a second hand smoke or environmental (smog, toxics, etc.) caused cancer.  That's rather sobering.

 

I tend not to give out real information on myself to forums or chats.  I'm a hardcore psychonaut (psychedelics user) which is one reason.  Also, it takes me awhile to learn to trust people.  I realize that in the internet era there really is no annonymity, but allow me my illusions.

Also, we are dirt poor.  We have one half time job supporting us right now.  We receive discounted phone, internet and electricity due to our low-income status.  This means we have only one choice for seeking medical care - The County Hospital.  I wish there were others but not only do we not crap $$, we barely get by week to week.  The only reason we were able to get bills paid during his recovery from surgury was my brother took money from his family's home/dinnertable and gifted it to us.

Dayum, this situation sucks no matter how you look at it..  Thanks again for your concern and offer to help.

Billie67

PandoraSpice said:

Hello Billie67,

 

Yeah, I hear that - the more we learn about second hand smoke, the more we come to understand just how deadly it is.  At least the smoker has the benefit of a filter!

The smoking cessation plan via taper-down is working well, thus far.  It's not easy for him, but he's doing it and completely committed, to "quitting this habit that is killing me."

 

In all the time I've known him he has been a hyper-responsible smoker - he never smokes in an indoor room, being very conscious of second hand smoke.  Also, whenever out and not near an ashtray, he field strips his butts and saves the filter for later disposal.  Needless to say, even these very responsible smoker behaviors will soon cease entirely.  Also, needless to say, it's hard to quit a 50+ year old habit.  I really really admire his strength during this time.

I'm so sorry that you appear to have a second hand smoke or environmental (smog, toxics, etc.) caused cancer.  That's rather sobering.

 

I tend not to give out real information on myself to forums or chats.  I'm a hardcore psychonaut (psychedelics user) which is one reason.  Also, it takes me awhile to learn to trust people.  I realize that in the internet era there really is no annonymity, but allow me my illusions.

Also, we are dirt poor.  We have one half time job supporting us right now.  We receive discounted phone, internet and electricity due to our low-income status.  This means we have only one choice for seeking medical care - The County Hospital.  I wish there were others but not only do we not crap $$, we barely get by week to week.  The only reason we were able to get bills paid during his recovery from surgury was my brother took money from his family's home/dinnertable and gifted it to us.

Dayum, this situation sucks no matter how you look at it..  Thanks again for your concern and offer to help.

Pandora
I commend your man for his commitment to quit, so amazing. He sounds like a very considerate person. I have a dear friend who is much the same, she practices all of those same courtesies to non smokers. I just hope one day she will decide to make a health change and try quitting herself. I love her dearly either way but I so want her to be more healthy.

I completely understand you not wanting to share your location, that's why I always ask people by first saying "if you're comfortable sharing"
Just hang around here and ask any questions you have, no pressure.

I'm sorry about your financial situation, we are not too much better off. I do however have medical insurance so I am thankful for that.
I'm glad you have county healthcare at least and I'm happy that your brother has been helpful to you.

Take care and keep us posted if you have any questions.
Billie