Progressing, Getting Ready for Treatment, So Many Questions
Ron
Comments
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They never found my primary
They never found my primary either. I had a Pet and nothing but the tumor on my neck showed. They gave me an exploratory where they took biopsy if necessary and they did not find anything there either. They kept me that night and did my neck dissection the next day. Your primary could be microscopic which they think it may have been in my case. Remember it only takes one cell. I didn't even have tonsils mine were taken out when I was five or so.
There are others on this site that had an unknown primary. Micktissue comes to mind. I think he had 13 lymph nodes removed. He had chemo and rads. I had my tumor, 23 removed and salivary gland. I just had rads. I didn't get my staging until after my dissection. I cannot remember what It was right now but you should ask, and have them explain it to you. You should get your staging, yes, even tho no primary.
You can always go for a second opinion. I went for three. Not because I didn't believe them I have other serious issues that complicate my treatment options. You could be in a bit of denial. Just know that your situation is not uncommon tho. There are many of is out there. You said 3cm in four months? I had just a small swollen lymph node in October and by December it was the size of a large lemon. Talk about fast. I couldn't wrap my head around the no primary thing at first either.0 -
Totally Normal
Mental gymnastics are par for the course, unfortunately, for most of us. I have seen several folks here with an unknown primary. Someone said their doc believed their body could have eliminated the primary, but not the affected lymph node.
I was not given a stage, either until I asked, and we knew my primary.
Sorry you're going through more mental anguish - it's so hard to get to a place where you're confident you're making the right choices - hope it happens for you.0 -
Ron,Pam M said:Totally Normal
Mental gymnastics are par for the course, unfortunately, for most of us. I have seen several folks here with an unknown primary. Someone said their doc believed their body could have eliminated the primary, but not the affected lymph node.
I was not given a stage, either until I asked, and we knew my primary.
Sorry you're going through more mental anguish - it's so hard to get to a place where you're confident you're making the right choices - hope it happens for you.
What you are about to
Ron,
What you are about to enter; rad, chemo, with surgery behind you requires that you know exactly what is going on. If you like your doctors, require them to sit down and explain every question you have, including staging. As Pam & Sweets mention, others here did not know their primary. For me it was my tonsils. If necessary, get 2, 3, 4 other opions, that includes, ENT, and Oncologist. You are the patient and you deserve to know everything there is to know. Remember doctors do not like to be challenged. They expect all patients to just do as they say (and this is what most do). This is your life and only you have to live with the outcome, both good and bad. You have to be your own health advocate. I hope you will keep us posted on your progress and good luck to you.
Deb0 -
Tough decisions.DJG1 said:Ron,
What you are about to
Ron,
What you are about to enter; rad, chemo, with surgery behind you requires that you know exactly what is going on. If you like your doctors, require them to sit down and explain every question you have, including staging. As Pam & Sweets mention, others here did not know their primary. For me it was my tonsils. If necessary, get 2, 3, 4 other opions, that includes, ENT, and Oncologist. You are the patient and you deserve to know everything there is to know. Remember doctors do not like to be challenged. They expect all patients to just do as they say (and this is what most do). This is your life and only you have to live with the outcome, both good and bad. You have to be your own health advocate. I hope you will keep us posted on your progress and good luck to you.
Deb
I think pathology reports are pretty accurate. If they are saying it is Squamous Cell, it probably is. I think unknown primary adds an additional demension of mystery to this already sneaky disease. So your unrest makes a lot of sense.
If you think you have a top notch medical team, you have to put your trust in them. Mark and I had no doubt we were dealing with the best our area had to offer in the area of Head and Neck cancer. That was huge. We trusted them and their expereince completely.
What you already know, is that this regime of chemo and radiation is a rough road. You also know there are all kinds of variables and some folks have a less rough time, and others the most severe. You cannot know how you will respond to treatment going in. The thing that was very crucial for Mark, and I wonder if it is for you, is the quality of life after treatment. You seem like a young guy, with a young family. Lots to do yet in life. Quality of life may be some of the questions kicking around in your head. Again, there are no guarentees. Mark, while working, eating, being active, still has dry mouth issues, pain, stiffness, lymphodema, foods that he cannot tolerate...but he can live with these things, and he is only 6 months out. But some of these things he will have for the rest of his life.
Figure out what your questions are. What do you need to know? Ask your doctors. Ask other doctors. Ask us here. Make your decisions based on good information. You will gain a sense of what is the right direction for you. When you know that, you will take a deep breath, you will surround yourself with support, you will take that first step into treatment, and you will persevere. What is the alternative?
Kim0 -
thank youKimba1505 said:Tough decisions.
I think pathology reports are pretty accurate. If they are saying it is Squamous Cell, it probably is. I think unknown primary adds an additional demension of mystery to this already sneaky disease. So your unrest makes a lot of sense.
If you think you have a top notch medical team, you have to put your trust in them. Mark and I had no doubt we were dealing with the best our area had to offer in the area of Head and Neck cancer. That was huge. We trusted them and their expereince completely.
What you already know, is that this regime of chemo and radiation is a rough road. You also know there are all kinds of variables and some folks have a less rough time, and others the most severe. You cannot know how you will respond to treatment going in. The thing that was very crucial for Mark, and I wonder if it is for you, is the quality of life after treatment. You seem like a young guy, with a young family. Lots to do yet in life. Quality of life may be some of the questions kicking around in your head. Again, there are no guarentees. Mark, while working, eating, being active, still has dry mouth issues, pain, stiffness, lymphodema, foods that he cannot tolerate...but he can live with these things, and he is only 6 months out. But some of these things he will have for the rest of his life.
Figure out what your questions are. What do you need to know? Ask your doctors. Ask other doctors. Ask us here. Make your decisions based on good information. You will gain a sense of what is the right direction for you. When you know that, you will take a deep breath, you will surround yourself with support, you will take that first step into treatment, and you will persevere. What is the alternative?
Kim
I really appreciate your responses and you are right what is my alternative? Thanks for your encouragement have tons of questions for the drs which I do trust. You have all helped me so much already THANK-YOU!0 -
Right DecisionRon49 said:thank you
I really appreciate your responses and you are right what is my alternative? Thanks for your encouragement have tons of questions for the drs which I do trust. You have all helped me so much already THANK-YOU!
If they have found you have SCC whether it be in a primary or not. Knowing what I know and have gone through. I would follow the path they have you on. It's not something to second guess. If they haven't confimed you have cancer, that's another story.
Like you, others and myself have mentioned, the alternative is unacceptable.
Fight brother....thoughts and prayers,
John0 -
We are identicalSkiffin16 said:Right Decision
If they have found you have SCC whether it be in a primary or not. Knowing what I know and have gone through. I would follow the path they have you on. It's not something to second guess. If they haven't confimed you have cancer, that's another story.
Like you, others and myself have mentioned, the alternative is unacceptable.
Fight brother....thoughts and prayers,
John
I too will start the same treatment you have (33 rads and 3 separate chemos) on 2/3. I had a tumor removed at Johns Hopkins on 1/3, it was in my neck, below my right ear. I will get my treatment at VCU/Massey Cneter Richmond, VA. They did a biopsy after my surgery and found that the source is back of tongue but they could not see it on the Pet Scan. Lets give each other strength throughout since we will both be going through it together. I am 56 year old male that before this happened was a IT Architect for HP and a powerlifter/bodybuilder using many supplements to maintain muscle. I intend to workout as long as I can and will use bodybuilding supplements to try to keep as much mass as possible. I may be kidding myself but I will try. Good luck...0 -
You Still Areadamson091654 said:We are identical
I too will start the same treatment you have (33 rads and 3 separate chemos) on 2/3. I had a tumor removed at Johns Hopkins on 1/3, it was in my neck, below my right ear. I will get my treatment at VCU/Massey Cneter Richmond, VA. They did a biopsy after my surgery and found that the source is back of tongue but they could not see it on the Pet Scan. Lets give each other strength throughout since we will both be going through it together. I am 56 year old male that before this happened was a IT Architect for HP and a powerlifter/bodybuilder using many supplements to maintain muscle. I intend to workout as long as I can and will use bodybuilding supplements to try to keep as much mass as possible. I may be kidding myself but I will try. Good luck...
"I am 56 year old male that IS an IT Architect for HP and a powerlifter/bodybuilder"
You still are brother, it hasn't taken that from you and never will....keep fighting, do your treatment and get back to it....
Thoughts and Prayers,
John0 -
Will Stay in Touchadamson091654 said:We are identical
I too will start the same treatment you have (33 rads and 3 separate chemos) on 2/3. I had a tumor removed at Johns Hopkins on 1/3, it was in my neck, below my right ear. I will get my treatment at VCU/Massey Cneter Richmond, VA. They did a biopsy after my surgery and found that the source is back of tongue but they could not see it on the Pet Scan. Lets give each other strength throughout since we will both be going through it together. I am 56 year old male that before this happened was a IT Architect for HP and a powerlifter/bodybuilder using many supplements to maintain muscle. I intend to workout as long as I can and will use bodybuilding supplements to try to keep as much mass as possible. I may be kidding myself but I will try. Good luck...
You are the 1st person that has the same circumstances as me and our surgeries were the same day! I definitely would like to be able to keep as much functionality as possible post treatment. I think that is what is giving me pause as it appears from all of the info here the long term effects and scaring can be significant. I am 49 and I feel certain I can get through the treatment but living with all of the other conditions is frightening to say the least. At least I have a list of questions I can pose to my drs based on what I have gotten back from everyone here. I have a pretty physical job and also consider myself in good shape. I hope and pray I will be able to continue to work at least until retirement age...that is my goal. Maybe lofty right now? I would like to stay in touch to share treatment progress etc. if you don't mind.
Ron0 -
I have been on this forumRon49 said:Will Stay in Touch
You are the 1st person that has the same circumstances as me and our surgeries were the same day! I definitely would like to be able to keep as much functionality as possible post treatment. I think that is what is giving me pause as it appears from all of the info here the long term effects and scaring can be significant. I am 49 and I feel certain I can get through the treatment but living with all of the other conditions is frightening to say the least. At least I have a list of questions I can pose to my drs based on what I have gotten back from everyone here. I have a pretty physical job and also consider myself in good shape. I hope and pray I will be able to continue to work at least until retirement age...that is my goal. Maybe lofty right now? I would like to stay in touch to share treatment progress etc. if you don't mind.
Ron
I have been on this forum everyday since my surgery. Like you, I have gained priceless knowledge from everyone. You hit it right on the nose, I think I will get through the treatment but I am awfukky scared of the long term side effects. Everyone here is an inspiration and we are gifted to have found this site. I stand corrected, I am an IT Architect, thanks Skiffin16. I have been working out for many years and I will try to use the knowledge to stay somewhat normal. For instance, L-Glutimine is great for your immune system, When going through chemo your kidney's are at risk and you need to watch your protein intake but whey protein is low in phosphorus and potassium so the kidneys handle whey very well. There is a workout that you use very light weight that hit both fast and slow twitch muscle fibers (both needed for muscle mass and tone) its call 100s or century workout. You take a weight that you can lift (bench press, curl, row, etc.) and you lift 70 times until failure then however reps you got close to 70 you count the seconds left to 100 (so if you get 65 reps you rest 35 secs) then you lift agin till you get 110 and filure. Even if I am lifting 5 lbs. I will do these types of workouts as long as I can stand. I have been studying powerlifting/bodybuilding for 40 years to include nutrition. Any help I can be to anyone please advise. There are many new studies that suggest workingout as much as you can during cancer treatment. Prayers and love to everyone.0 -
Unknown Primaryadamson091654 said:I have been on this forum
I have been on this forum everyday since my surgery. Like you, I have gained priceless knowledge from everyone. You hit it right on the nose, I think I will get through the treatment but I am awfukky scared of the long term side effects. Everyone here is an inspiration and we are gifted to have found this site. I stand corrected, I am an IT Architect, thanks Skiffin16. I have been working out for many years and I will try to use the knowledge to stay somewhat normal. For instance, L-Glutimine is great for your immune system, When going through chemo your kidney's are at risk and you need to watch your protein intake but whey protein is low in phosphorus and potassium so the kidneys handle whey very well. There is a workout that you use very light weight that hit both fast and slow twitch muscle fibers (both needed for muscle mass and tone) its call 100s or century workout. You take a weight that you can lift (bench press, curl, row, etc.) and you lift 70 times until failure then however reps you got close to 70 you count the seconds left to 100 (so if you get 65 reps you rest 35 secs) then you lift agin till you get 110 and filure. Even if I am lifting 5 lbs. I will do these types of workouts as long as I can stand. I have been studying powerlifting/bodybuilding for 40 years to include nutrition. Any help I can be to anyone please advise. There are many new studies that suggest workingout as much as you can during cancer treatment. Prayers and love to everyone.
I was diagnosed with SCC unknown primary back in April after I discovered a swollen lymph node in my left neck. My doctor suspected the primary would be found in my tonsil and the PET scan seemed to back his theory up.
I had surgery in April and 42 lymph nodes were removed with one testing positive. The one positive node had clean margins and no extracapsular spread. The tonsils came back negative. The plan had been to begin radiation after I was recovered from surgery but the post-surgery pathology changed that.
The tumor board at my cancer center suggested that I stop with surgery and not do radiation and or chemo. I was floored with their suggestion.
I had been praying for a miracle and many others were praying for my healing so I took this as an answer to those prayers.
Unknown primaries make for very scary and unsettling times. In your case you may ask if you are doing too much while in my case I wondered at times if I was not doing enough.
I have had exams every six weeks and had a PET/CT scan 6 months and recently another CT scan. All clear so far.
My doctor said that if anything were to be discovered that I could attack it at that time and with a better idea of where it was. He likened radiation to having one bullet in a gun. Once you do it, you aren't doing it again.
If the tumor board had come back and suggested radiation/chemo I would have done it. I trusted my team throughout.
If you trust your team then take their advice and give the fight your all. The road I have taken has left me with no negative physical effects but the mental turmoil is still a factor.
Did I do enough? Is there that one small cell in there multiplying and growing?
I wish you the best and will be praying for you.0 -
Agree, butDJG1 said:Ron,
What you are about to
Ron,
What you are about to enter; rad, chemo, with surgery behind you requires that you know exactly what is going on. If you like your doctors, require them to sit down and explain every question you have, including staging. As Pam & Sweets mention, others here did not know their primary. For me it was my tonsils. If necessary, get 2, 3, 4 other opions, that includes, ENT, and Oncologist. You are the patient and you deserve to know everything there is to know. Remember doctors do not like to be challenged. They expect all patients to just do as they say (and this is what most do). This is your life and only you have to live with the outcome, both good and bad. You have to be your own health advocate. I hope you will keep us posted on your progress and good luck to you.
Deb
Ron,
I agree with Deb, challenge your doctors. Know exactly what is going on and what your options are. I am about where you are, although I know where my primary is, and I am on my way from Atlanta to Duke as I write this to get another opinion.
But, I disagree with Deb about one thing, every Doctor I have "challenged" has risen to the challenge and spent as much time as I wanted to answer my questions and help me understand what my options are - at least from their perspective. They do, however, want you to step us and press them for the answers. At least that's my experience.
Good luck
Mike0 -
Feel the Burn...Adamsonadamson091654 said:I have been on this forum
I have been on this forum everyday since my surgery. Like you, I have gained priceless knowledge from everyone. You hit it right on the nose, I think I will get through the treatment but I am awfukky scared of the long term side effects. Everyone here is an inspiration and we are gifted to have found this site. I stand corrected, I am an IT Architect, thanks Skiffin16. I have been working out for many years and I will try to use the knowledge to stay somewhat normal. For instance, L-Glutimine is great for your immune system, When going through chemo your kidney's are at risk and you need to watch your protein intake but whey protein is low in phosphorus and potassium so the kidneys handle whey very well. There is a workout that you use very light weight that hit both fast and slow twitch muscle fibers (both needed for muscle mass and tone) its call 100s or century workout. You take a weight that you can lift (bench press, curl, row, etc.) and you lift 70 times until failure then however reps you got close to 70 you count the seconds left to 100 (so if you get 65 reps you rest 35 secs) then you lift agin till you get 110 and filure. Even if I am lifting 5 lbs. I will do these types of workouts as long as I can stand. I have been studying powerlifting/bodybuilding for 40 years to include nutrition. Any help I can be to anyone please advise. There are many new studies that suggest workingout as much as you can during cancer treatment. Prayers and love to everyone.
Dang man, forty years....
You must remember all of those names from that era...Arnold - The Oak - Schwarzenegger, Lou Ferrigno, Franco Columbo, Frank Zane, Ken Waller, Rachel McLish, Cory Everson (later time frame but hot, LOL) ahhhh those were some days for sure.
I remember well those days of milk and egg protein and smelly gym farts...
JG0 -
WowJoel4 said:Unknown Primary
I was diagnosed with SCC unknown primary back in April after I discovered a swollen lymph node in my left neck. My doctor suspected the primary would be found in my tonsil and the PET scan seemed to back his theory up.
I had surgery in April and 42 lymph nodes were removed with one testing positive. The one positive node had clean margins and no extracapsular spread. The tonsils came back negative. The plan had been to begin radiation after I was recovered from surgery but the post-surgery pathology changed that.
The tumor board at my cancer center suggested that I stop with surgery and not do radiation and or chemo. I was floored with their suggestion.
I had been praying for a miracle and many others were praying for my healing so I took this as an answer to those prayers.
Unknown primaries make for very scary and unsettling times. In your case you may ask if you are doing too much while in my case I wondered at times if I was not doing enough.
I have had exams every six weeks and had a PET/CT scan 6 months and recently another CT scan. All clear so far.
My doctor said that if anything were to be discovered that I could attack it at that time and with a better idea of where it was. He likened radiation to having one bullet in a gun. Once you do it, you aren't doing it again.
If the tumor board had come back and suggested radiation/chemo I would have done it. I trusted my team throughout.
If you trust your team then take their advice and give the fight your all. The road I have taken has left me with no negative physical effects but the mental turmoil is still a factor.
Did I do enough? Is there that one small cell in there multiplying and growing?
I wish you the best and will be praying for you.
Hey Joel, thanks for sharing your story..this helps me to know what I am feeling is not so much off track. I will meet with the radiation oncologist tomorrow and I have tons of questions. I am very interested in what the plan will be since the PET came back clean. Thanks for the well wishes and the prayers.
Ron0 -
VisualizeJoel4 said:Unknown Primary
I was diagnosed with SCC unknown primary back in April after I discovered a swollen lymph node in my left neck. My doctor suspected the primary would be found in my tonsil and the PET scan seemed to back his theory up.
I had surgery in April and 42 lymph nodes were removed with one testing positive. The one positive node had clean margins and no extracapsular spread. The tonsils came back negative. The plan had been to begin radiation after I was recovered from surgery but the post-surgery pathology changed that.
The tumor board at my cancer center suggested that I stop with surgery and not do radiation and or chemo. I was floored with their suggestion.
I had been praying for a miracle and many others were praying for my healing so I took this as an answer to those prayers.
Unknown primaries make for very scary and unsettling times. In your case you may ask if you are doing too much while in my case I wondered at times if I was not doing enough.
I have had exams every six weeks and had a PET/CT scan 6 months and recently another CT scan. All clear so far.
My doctor said that if anything were to be discovered that I could attack it at that time and with a better idea of where it was. He likened radiation to having one bullet in a gun. Once you do it, you aren't doing it again.
If the tumor board had come back and suggested radiation/chemo I would have done it. I trusted my team throughout.
If you trust your team then take their advice and give the fight your all. The road I have taken has left me with no negative physical effects but the mental turmoil is still a factor.
Did I do enough? Is there that one small cell in there multiplying and growing?
I wish you the best and will be praying for you.
Hi Joe,
As I have written on other post twenty years have nearly passed since I opted for chemo combined concurrently with radiation over less agressive treatment or surgery for my stage iv throat cancer. It was very new at the time and considered very agressive. I jumped at the opportunaty to "attack" those invaders and pictured my new "solders" kicking the butts of EVERY ONE of those attacking c-cells. They did, and so far so good. I move on every day grateful and with the belief of a Power greater than those c-cells and also greater than myself. You are wise to trust your team and believe in yourself and the power with in you s
as well. All the best, josh r.0
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