Back for more than checking in and saying hello--UPDATED 10/28
I haven't posted in a while because life has been hectic and stressful. I've been checking in without posting though, and thinking of everyone here (especially Phrannie, who rode the bus alongside me).
I've been dealing with pneumonia for a couple weeks... and a chest CT today showed it's not just pneumonia. There's a large mass in my lower right lung and inflamed lymph nodes around it. I'll know more after the PET and biopsy which hopefully will happen over the next few days. There's no doubt that it's cancer though.
I'm sorry to post here with bad news but I have important news too. When I did some research tonight, it turns out there's seeing different and longer periods of potential recurrence or metastasis from HPV+ SCC versus non-HPV head and neck cancers. Some researchers are recommending the screening period be extended to five years instead of the normal three. I wanted to pass along that info to anyone else who had HPV+ SCC. Insist on the screenings.
I'll post an update when I have more info.
Comments
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Laralyn
I won't say welcome because it looks like you're a member of the "family" from a few years back. I will say I'm very sorry that the mass turned up in your lung. So I guess that means welcome back. Thank you for the caution about HPV+ I just joined the group a few months ago and my husband's NPC is positive for HPV. I appreciate the info. Hopefully you'll have a roadmap for treatment options soon. Good luck!
Barbara
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Well this is
f*****d up! Not fair!! Gawd, I am so sorry you have to deal with this. You were my total busmate during treatment...we started together and finished together....even when you don't post often, I think of you and wonder how you're doing.
I'm here for ya....hell, you know we're all here for you....DO keep us up to date on what's happening.
Hugs....BIG HUGS....and a pocket for you to get tucked into.
p
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Well..
As you know, it's not until they tell you for sure.., so my parayers are for not...
As for the other, my onco, ahs always felt the longer period was a possibility. Im six years out, and until year five, I did a PET and a CT everytoher six months. With a chest X-Ray thrown in..
I'm down now to just the chest x-ray..
Hopefully myself, and all of us will stay clear of any more dealings..Best Always,
John
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lifting prayers
And holding good thoughts, Lara.
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Thanks for all the kind
Thanks for all the kind thoughts--it means a lot to me.
I was treated in San Francisco last time, by a fantastic radiologist (Dr. Deepak Khuntia) who left practice after treating me to become head of medicine for Varian, the company that makes the machines that treated many of us. I emailed Varian's help desk yesterday morning to see if there was a chance I could get in touch with him for a referral, and he emailed me last night (despite the fact that he's at the yearly radiology conference). He really is awesome. He strongly recommended UCLA for my treatments and copied one of his former teachers on the email, who is now the vice chair of the radiology department there. He, in turn, added their best lung radiologist to the email... so my worries about making sure I'm with the right doctors are now relieved.
The funny thing is that when I moved to LA, I did my research and chose to have both my follow up surveillance and my primary care physician at UCLA because of their high rating for cancer care. So everything is already being done there. The current plan is to see an oncologist on Monday, and have the staging PET on Wednesday. I'm waiting to hear if they can do a needle biopsy or if we need another approach. Hopefully having the UCLA contacts via Dr. Khuntia will expedite the process.
Hey John--re: "I'm down now to just the chest x-ray.."
My mass is large and it didn't show up on either of two x-rays. The second had pneumonia in that lung, which may cover up a mass. The first x-ray though had so little pneumonia that my PCP didn't even see it--the lobe was NOT covered by it. It was only two weeks ago. And yet the mass was not detectible on x-ray. You might want to insist on CT if you can.
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You're getting things lined out....Laralyn said:Thanks for all the kind
Thanks for all the kind thoughts--it means a lot to me.
I was treated in San Francisco last time, by a fantastic radiologist (Dr. Deepak Khuntia) who left practice after treating me to become head of medicine for Varian, the company that makes the machines that treated many of us. I emailed Varian's help desk yesterday morning to see if there was a chance I could get in touch with him for a referral, and he emailed me last night (despite the fact that he's at the yearly radiology conference). He really is awesome. He strongly recommended UCLA for my treatments and copied one of his former teachers on the email, who is now the vice chair of the radiology department there. He, in turn, added their best lung radiologist to the email... so my worries about making sure I'm with the right doctors are now relieved.
The funny thing is that when I moved to LA, I did my research and chose to have both my follow up surveillance and my primary care physician at UCLA because of their high rating for cancer care. So everything is already being done there. The current plan is to see an oncologist on Monday, and have the staging PET on Wednesday. I'm waiting to hear if they can do a needle biopsy or if we need another approach. Hopefully having the UCLA contacts via Dr. Khuntia will expedite the process.
Hey John--re: "I'm down now to just the chest x-ray.."
My mass is large and it didn't show up on either of two x-rays. The second had pneumonia in that lung, which may cover up a mass. The first x-ray though had so little pneumonia that my PCP didn't even see it--the lobe was NOT covered by it. It was only two weeks ago. And yet the mass was not detectible on x-ray. You might want to insist on CT if you can.
GOOD!! And you know you're in good hands....DOUBLE GOOD!! Making me wish I didn't live in God's Country and was closer to some big time Cancer care...LOL. Might end up in a city (temporaily) anyway.
Hugs to you, sweetie.
p
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LaralynLaralyn said:Thanks for all the kind
Thanks for all the kind thoughts--it means a lot to me.
I was treated in San Francisco last time, by a fantastic radiologist (Dr. Deepak Khuntia) who left practice after treating me to become head of medicine for Varian, the company that makes the machines that treated many of us. I emailed Varian's help desk yesterday morning to see if there was a chance I could get in touch with him for a referral, and he emailed me last night (despite the fact that he's at the yearly radiology conference). He really is awesome. He strongly recommended UCLA for my treatments and copied one of his former teachers on the email, who is now the vice chair of the radiology department there. He, in turn, added their best lung radiologist to the email... so my worries about making sure I'm with the right doctors are now relieved.
The funny thing is that when I moved to LA, I did my research and chose to have both my follow up surveillance and my primary care physician at UCLA because of their high rating for cancer care. So everything is already being done there. The current plan is to see an oncologist on Monday, and have the staging PET on Wednesday. I'm waiting to hear if they can do a needle biopsy or if we need another approach. Hopefully having the UCLA contacts via Dr. Khuntia will expedite the process.
Hey John--re: "I'm down now to just the chest x-ray.."
My mass is large and it didn't show up on either of two x-rays. The second had pneumonia in that lung, which may cover up a mass. The first x-ray though had so little pneumonia that my PCP didn't even see it--the lobe was NOT covered by it. It was only two weeks ago. And yet the mass was not detectible on x-ray. You might want to insist on CT if you can.
Your doctor sounds awesome...I'm glad he could make the appropriate referrals and ease some of the anxiety about connecting with the right physicians. That must give you a little peace of mind. I'll be thinking of you (and Phrannie) as you both find out more and decide on treatment plans. And I'll be saying plenty of prayers too.
Barbara
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HopeBarbaraek said:Laralyn
Your doctor sounds awesome...I'm glad he could make the appropriate referrals and ease some of the anxiety about connecting with the right physicians. That must give you a little peace of mind. I'll be thinking of you (and Phrannie) as you both find out more and decide on treatment plans. And I'll be saying plenty of prayers too.
Barbara
it turns out to be an infection. It seems to have grown very quickly - is that's good sign? Will be thinking of you. Same research showed positive treatment result a lso I think x
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Update after testing week
I had an interesting week... as an understatement!
Monday, I met with the medical oncologist, who seems great, kind, and knowledgable. She couldn't really do anything yet (I hadn't had tests yet) but it was great to get that started.
Wednesday started with a CT guided needle biopsy. Basically they do a CT scan to locate the mass, then start slowing inserting the biopsy needle, checking its placement every few minutes. I heard them take the samples after about 30 minutes--I could tell by the sound of the tools. Then after a few moments, I heard the doctor come into the room (so far the needle had been placed by his resident) and i felt a sharp pain. He said he was placing a new needle. We went through a bit more guided placement, then I heard them take more samples. Once they were done and I was being wheeled out on the gurney, the doctor stopped the nurse. He said he saw no tumor cells in the first samples so he took a second set of samples from a whole new site. He didn't see tumor cells in that either, and he "thought I should know." I asked what he saw, and he said, "Infection. Maybe fungal?" He sent the samples for both pathology and microbiology analysis.
My spouse and I were confused, to say the least. We had to go straight to the PET scan though, which was at a different facility about 20 minutes away. The PET went fine, so we went home and tried not to put too much stock in what the biopsy doctor had said. But how could we get that out of our minds?
The next day, we met with the radiation oncologist, who had called for prelim PET and biopsy results. He said the biopsy showed SCC. I had tried to expect that, so it didn't hit me as hard as it hit my spouse. The good news was that the PET showed only the mass and two lymph nodes lit up (at least as the radiation oncologist interpreted it, and he's very experienced). Unfortunately one of the nodes is at the collarbone, which placed the preliminary staging at IIIA. He said he would try to get the case in front of the tumor board the next day (today, Friday) to discuss potential surgery, which is usually not possible with IIIA but might be a consideration in my case.
He called this morning to say the tumor board had reviewed my case and the thoracic surgeon wanted to meet with me and probably do a mediastinotomy, where they go into the chest with a camera and tools to look at and sample all the nodes. They test on the spot and also send the results to pathology. Those results would help determine whether surgery is feasible.
I also had the brain MRI today and was hoping to get prelim results. I called the radiation oncologist but haven't heard back yet.
So this week was a huge rollercoaster. I've never ever had results given to me on the spot like they were after the biopsy. I didn't even tell many people about it because I didn't want anyone else to be crushed if it turned out to be wrong. It did leave me with a lot of questions though, because the biopsy doctor is very experienced and respected--he's on the tumor board and specializes in lung cancer. It raised a lot of questions for me not about whether I have cancer (I don't doubt the prelim pathology report) in the mass he sampled, but I do wonder about the two nodes that lit up the PET, since infection and cancer light up the same way. I'm glad to have the mediastinotomy (pending the brain MRI results) and maybe get an answer to the questions.
That's where I am as of now... waiting, but better off than I had expected honestly in terms of staging, etc. :-)
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Wow Lara,Laralyn said:Update after testing week
I had an interesting week... as an understatement!
Monday, I met with the medical oncologist, who seems great, kind, and knowledgable. She couldn't really do anything yet (I hadn't had tests yet) but it was great to get that started.
Wednesday started with a CT guided needle biopsy. Basically they do a CT scan to locate the mass, then start slowing inserting the biopsy needle, checking its placement every few minutes. I heard them take the samples after about 30 minutes--I could tell by the sound of the tools. Then after a few moments, I heard the doctor come into the room (so far the needle had been placed by his resident) and i felt a sharp pain. He said he was placing a new needle. We went through a bit more guided placement, then I heard them take more samples. Once they were done and I was being wheeled out on the gurney, the doctor stopped the nurse. He said he saw no tumor cells in the first samples so he took a second set of samples from a whole new site. He didn't see tumor cells in that either, and he "thought I should know." I asked what he saw, and he said, "Infection. Maybe fungal?" He sent the samples for both pathology and microbiology analysis.
My spouse and I were confused, to say the least. We had to go straight to the PET scan though, which was at a different facility about 20 minutes away. The PET went fine, so we went home and tried not to put too much stock in what the biopsy doctor had said. But how could we get that out of our minds?
The next day, we met with the radiation oncologist, who had called for prelim PET and biopsy results. He said the biopsy showed SCC. I had tried to expect that, so it didn't hit me as hard as it hit my spouse. The good news was that the PET showed only the mass and two lymph nodes lit up (at least as the radiation oncologist interpreted it, and he's very experienced). Unfortunately one of the nodes is at the collarbone, which placed the preliminary staging at IIIA. He said he would try to get the case in front of the tumor board the next day (today, Friday) to discuss potential surgery, which is usually not possible with IIIA but might be a consideration in my case.
He called this morning to say the tumor board had reviewed my case and the thoracic surgeon wanted to meet with me and probably do a mediastinotomy, where they go into the chest with a camera and tools to look at and sample all the nodes. They test on the spot and also send the results to pathology. Those results would help determine whether surgery is feasible.
I also had the brain MRI today and was hoping to get prelim results. I called the radiation oncologist but haven't heard back yet.
So this week was a huge rollercoaster. I've never ever had results given to me on the spot like they were after the biopsy. I didn't even tell many people about it because I didn't want anyone else to be crushed if it turned out to be wrong. It did leave me with a lot of questions though, because the biopsy doctor is very experienced and respected--he's on the tumor board and specializes in lung cancer. It raised a lot of questions for me not about whether I have cancer (I don't doubt the prelim pathology report) in the mass he sampled, but I do wonder about the two nodes that lit up the PET, since infection and cancer light up the same way. I'm glad to have the mediastinotomy (pending the brain MRI results) and maybe get an answer to the questions.
That's where I am as of now... waiting, but better off than I had expected honestly in terms of staging, etc. :-)
that does sound like a wild roller coaster. What a lot of tension. I hope the next set of tests will resolve some of the ambiguity and give the tumor board a clear path to treatment. In the meantime, I'll be praying for the best possible outcome for you and your husband.
Barbara
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Long days....Laralyn said:Update after testing week
I had an interesting week... as an understatement!
Monday, I met with the medical oncologist, who seems great, kind, and knowledgable. She couldn't really do anything yet (I hadn't had tests yet) but it was great to get that started.
Wednesday started with a CT guided needle biopsy. Basically they do a CT scan to locate the mass, then start slowing inserting the biopsy needle, checking its placement every few minutes. I heard them take the samples after about 30 minutes--I could tell by the sound of the tools. Then after a few moments, I heard the doctor come into the room (so far the needle had been placed by his resident) and i felt a sharp pain. He said he was placing a new needle. We went through a bit more guided placement, then I heard them take more samples. Once they were done and I was being wheeled out on the gurney, the doctor stopped the nurse. He said he saw no tumor cells in the first samples so he took a second set of samples from a whole new site. He didn't see tumor cells in that either, and he "thought I should know." I asked what he saw, and he said, "Infection. Maybe fungal?" He sent the samples for both pathology and microbiology analysis.
My spouse and I were confused, to say the least. We had to go straight to the PET scan though, which was at a different facility about 20 minutes away. The PET went fine, so we went home and tried not to put too much stock in what the biopsy doctor had said. But how could we get that out of our minds?
The next day, we met with the radiation oncologist, who had called for prelim PET and biopsy results. He said the biopsy showed SCC. I had tried to expect that, so it didn't hit me as hard as it hit my spouse. The good news was that the PET showed only the mass and two lymph nodes lit up (at least as the radiation oncologist interpreted it, and he's very experienced). Unfortunately one of the nodes is at the collarbone, which placed the preliminary staging at IIIA. He said he would try to get the case in front of the tumor board the next day (today, Friday) to discuss potential surgery, which is usually not possible with IIIA but might be a consideration in my case.
He called this morning to say the tumor board had reviewed my case and the thoracic surgeon wanted to meet with me and probably do a mediastinotomy, where they go into the chest with a camera and tools to look at and sample all the nodes. They test on the spot and also send the results to pathology. Those results would help determine whether surgery is feasible.
I also had the brain MRI today and was hoping to get prelim results. I called the radiation oncologist but haven't heard back yet.
So this week was a huge rollercoaster. I've never ever had results given to me on the spot like they were after the biopsy. I didn't even tell many people about it because I didn't want anyone else to be crushed if it turned out to be wrong. It did leave me with a lot of questions though, because the biopsy doctor is very experienced and respected--he's on the tumor board and specializes in lung cancer. It raised a lot of questions for me not about whether I have cancer (I don't doubt the prelim pathology report) in the mass he sampled, but I do wonder about the two nodes that lit up the PET, since infection and cancer light up the same way. I'm glad to have the mediastinotomy (pending the brain MRI results) and maybe get an answer to the questions.
That's where I am as of now... waiting, but better off than I had expected honestly in terms of staging, etc. :-)
and hopefully not restless nights. Gotta say...one of things I love about you is you're always so together, or at least you always sound together. You get out there, get your ducks in a row, and knock them down....is it any wonder that during treatment I just hung onto your shirt tails....if Laralyn did this or that, I did it, too
. Praying that you get this MRI result back fast....and you can toss that worry into the trash can....I have a gut feeling its' going to be ok. I'm always a text away....and I've got you securely tucked into my pocket.
p
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OMG what a week and moreLaralyn said:Update after testing week
I had an interesting week... as an understatement!
Monday, I met with the medical oncologist, who seems great, kind, and knowledgable. She couldn't really do anything yet (I hadn't had tests yet) but it was great to get that started.
Wednesday started with a CT guided needle biopsy. Basically they do a CT scan to locate the mass, then start slowing inserting the biopsy needle, checking its placement every few minutes. I heard them take the samples after about 30 minutes--I could tell by the sound of the tools. Then after a few moments, I heard the doctor come into the room (so far the needle had been placed by his resident) and i felt a sharp pain. He said he was placing a new needle. We went through a bit more guided placement, then I heard them take more samples. Once they were done and I was being wheeled out on the gurney, the doctor stopped the nurse. He said he saw no tumor cells in the first samples so he took a second set of samples from a whole new site. He didn't see tumor cells in that either, and he "thought I should know." I asked what he saw, and he said, "Infection. Maybe fungal?" He sent the samples for both pathology and microbiology analysis.
My spouse and I were confused, to say the least. We had to go straight to the PET scan though, which was at a different facility about 20 minutes away. The PET went fine, so we went home and tried not to put too much stock in what the biopsy doctor had said. But how could we get that out of our minds?
The next day, we met with the radiation oncologist, who had called for prelim PET and biopsy results. He said the biopsy showed SCC. I had tried to expect that, so it didn't hit me as hard as it hit my spouse. The good news was that the PET showed only the mass and two lymph nodes lit up (at least as the radiation oncologist interpreted it, and he's very experienced). Unfortunately one of the nodes is at the collarbone, which placed the preliminary staging at IIIA. He said he would try to get the case in front of the tumor board the next day (today, Friday) to discuss potential surgery, which is usually not possible with IIIA but might be a consideration in my case.
He called this morning to say the tumor board had reviewed my case and the thoracic surgeon wanted to meet with me and probably do a mediastinotomy, where they go into the chest with a camera and tools to look at and sample all the nodes. They test on the spot and also send the results to pathology. Those results would help determine whether surgery is feasible.
I also had the brain MRI today and was hoping to get prelim results. I called the radiation oncologist but haven't heard back yet.
So this week was a huge rollercoaster. I've never ever had results given to me on the spot like they were after the biopsy. I didn't even tell many people about it because I didn't want anyone else to be crushed if it turned out to be wrong. It did leave me with a lot of questions though, because the biopsy doctor is very experienced and respected--he's on the tumor board and specializes in lung cancer. It raised a lot of questions for me not about whether I have cancer (I don't doubt the prelim pathology report) in the mass he sampled, but I do wonder about the two nodes that lit up the PET, since infection and cancer light up the same way. I'm glad to have the mediastinotomy (pending the brain MRI results) and maybe get an answer to the questions.
That's where I am as of now... waiting, but better off than I had expected honestly in terms of staging, etc. :-)
OMG what a week and more waiting. I'm so sorry. Sounds like you can really trust your team and they will get to the bottom of it. Its just the waiting....
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UpdateLaralyn said:Update after testing week
I had an interesting week... as an understatement!
Monday, I met with the medical oncologist, who seems great, kind, and knowledgable. She couldn't really do anything yet (I hadn't had tests yet) but it was great to get that started.
Wednesday started with a CT guided needle biopsy. Basically they do a CT scan to locate the mass, then start slowing inserting the biopsy needle, checking its placement every few minutes. I heard them take the samples after about 30 minutes--I could tell by the sound of the tools. Then after a few moments, I heard the doctor come into the room (so far the needle had been placed by his resident) and i felt a sharp pain. He said he was placing a new needle. We went through a bit more guided placement, then I heard them take more samples. Once they were done and I was being wheeled out on the gurney, the doctor stopped the nurse. He said he saw no tumor cells in the first samples so he took a second set of samples from a whole new site. He didn't see tumor cells in that either, and he "thought I should know." I asked what he saw, and he said, "Infection. Maybe fungal?" He sent the samples for both pathology and microbiology analysis.
My spouse and I were confused, to say the least. We had to go straight to the PET scan though, which was at a different facility about 20 minutes away. The PET went fine, so we went home and tried not to put too much stock in what the biopsy doctor had said. But how could we get that out of our minds?
The next day, we met with the radiation oncologist, who had called for prelim PET and biopsy results. He said the biopsy showed SCC. I had tried to expect that, so it didn't hit me as hard as it hit my spouse. The good news was that the PET showed only the mass and two lymph nodes lit up (at least as the radiation oncologist interpreted it, and he's very experienced). Unfortunately one of the nodes is at the collarbone, which placed the preliminary staging at IIIA. He said he would try to get the case in front of the tumor board the next day (today, Friday) to discuss potential surgery, which is usually not possible with IIIA but might be a consideration in my case.
He called this morning to say the tumor board had reviewed my case and the thoracic surgeon wanted to meet with me and probably do a mediastinotomy, where they go into the chest with a camera and tools to look at and sample all the nodes. They test on the spot and also send the results to pathology. Those results would help determine whether surgery is feasible.
I also had the brain MRI today and was hoping to get prelim results. I called the radiation oncologist but haven't heard back yet.
So this week was a huge rollercoaster. I've never ever had results given to me on the spot like they were after the biopsy. I didn't even tell many people about it because I didn't want anyone else to be crushed if it turned out to be wrong. It did leave me with a lot of questions though, because the biopsy doctor is very experienced and respected--he's on the tumor board and specializes in lung cancer. It raised a lot of questions for me not about whether I have cancer (I don't doubt the prelim pathology report) in the mass he sampled, but I do wonder about the two nodes that lit up the PET, since infection and cancer light up the same way. I'm glad to have the mediastinotomy (pending the brain MRI results) and maybe get an answer to the questions.
That's where I am as of now... waiting, but better off than I had expected honestly in terms of staging, etc. :-)
You have had a busy week! I'm glad some of the news was better than you had hoped. You will be in my prayers during these long days of waiting for answers.
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