Welp, my good luck may be running out.
Hi all,
I consider myself very lucky to have avoided serious side effects after treatment ended in January.
About two weeks ago, I noticed i had a persistent cough, which I assumed was due to some aspiration. Over last weekend, it started to develop into pain, and so I called up MSK. Long story short, I had a chest x Ray and a CT scan this afternoon, and the “wet” read suggests something abnormal is in my left lung that they were unsure what it was. The RN said that it didn’t show definitely any infection, like bronchitis or pneumonia. My oncologist is going to look over them more carefully tomorrow, but I’m panicked and scared and incredibly depressed. I can’t go through this again so soon. 
Comments
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I'll just share my experience
I'll just share my experience - and you can listen to it below....
My first post treatment PET scan lit up like a bright red Christmas tree. My blood work and other tests showed me negative for infection. My oncologist literally started the appointment with, "I've got some bad news, your lungs are now full of disease." I was told my SCC had metastasized to my heart and lungs and there was most likely nothing they could do but manage it.
I was sent to a thoracic team to see if surgery was an option. The did a CT and saw the mass on my lungs, but noticed all the nodes had returned to normal size and the mass had shrunk considerably. They concluded I did indeed have a massive infection and my cancer was gone.
For 13 days i lived with thinking I was going to die and my treatment had been for nothing....
While it's possible the cancer has spread, it's also very possible it's something else far less scary.
Hang in there and breathe until you have had confirmatory tests!
Listen to my PET scan scare here...0 -
I am so sorry
I was hoping that you would keep us updated on how you are doing but I was hoping it was going to be how well you are doing and how you are getting back to normal. I am so very sorry that you are having to go through another scare and I am praying that it turns out to be nothing serious. Please keep us updated and know that we all care about you.
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Thanks for sharing OKCnative.OKCnative said:I'll just share my experience
I'll just share my experience - and you can listen to it below....
My first post treatment PET scan lit up like a bright red Christmas tree. My blood work and other tests showed me negative for infection. My oncologist literally started the appointment with, "I've got some bad news, your lungs are now full of disease." I was told my SCC had metastasized to my heart and lungs and there was most likely nothing they could do but manage it.
I was sent to a thoracic team to see if surgery was an option. The did a CT and saw the mass on my lungs, but noticed all the nodes had returned to normal size and the mass had shrunk considerably. They concluded I did indeed have a massive infection and my cancer was gone.
For 13 days i lived with thinking I was going to die and my treatment had been for nothing....
While it's possible the cancer has spread, it's also very possible it's something else far less scary.
Hang in there and breathe until you have had confirmatory tests!
Listen to my PET scan scare here...Thanks for sharing OKCnative. Your story was the first thing I had thought of, as I had read it in a different thread. Fingers crossed this is a similar type of false alarm situation. My oncologist said yesterday “either it is or it isn’t, and we need the biopsy to tell us what’s going on”. Fingers crossed.
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Thanks Matt,CivilMatt said:Welp, I can give you a pint of good luck on Saturday
JAL23,
You know the motto here, ‘it isn’t cancer until they say it is cancer” and that usually requires a biopsy. I can just feel you getting happier; the back of my neck is gretting warmer. Who did the “wet” read, the RN? You will have to wait for the expert, sorry.
Back in the first week of October you were in a heated discussion with around 6 doctors about your condition. You settled on 10 doctors and a somewhat subdued treatment plan because your cancer was different, thought to be possibly less dangerous and you are without age (you are young). I reviewed my notes to you and this is the Reader’s Digest version.
Was your first treatment difficult? I only asked because you mentioned a wait and see approach by some of the doctors. Do not think I am picking on you, I am not. I just want to spitball in my mind what the doctors might suggest. If you have a lot of room in your young body for treatment, then I would think that is good for dialing up success. There are many H&N members who have received multiple cancer treatments and they get through the treatments well.
I have no way to calm your nerves and promise you a sunny and clear tomorrow, but I can say from the little I have read about you, I think you will make out fine in whatever you have to go through again.
Matt
Thanks Matt,
I know the motto all too well at this point. Still scared though!
I think you might be describing my first treatment (on the tongue). The reccuance was treated in January with full radiation and chemotherapy (cisplatin). They quite literally threw the kitchen sink at this one. It was initially a bunch of doctors, but we wound up under the care of Dr Nancy Lee at MSK.
my fear is that there just isn’t much left they can do after all that’s been done. I tried bringing it up to my oncologist over the phone about the hypothetical “what if” and he mentioned something about it not being “routinely curable” and then stopped himself and said “we need to figure out what this is first.”
i thought I’d at least get a worry free summer after treatment. I was just starting to feel happier and I can feel my neck getting warmer as well. I can’t understand how after all that chemo and radiation and clear scans, this could happen so suddenly and so fast. Meanwhile, I’ll try to be comforted by the motto around here.
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Welp, I can give you a pint of good luck on Saturday
JAL23,
You know the motto here, ‘it isn’t cancer until they say it is cancer” and that usually requires a biopsy. I can just feel you getting happier; the back of my neck is gretting warmer. Who did the “wet” read, the RN? You will have to wait for the expert, sorry.
Back in the first week of October you were in a heated discussion with around 6 doctors about your condition. You settled on 10 doctors and a somewhat subdued treatment plan because your cancer was different, thought to be possibly less dangerous and you are without age (you are young). I reviewed my notes to you and this is the Reader’s Digest version.
Was your first treatment difficult? I only asked because you mentioned a wait and see approach by some of the doctors. Do not think I am picking on you, I am not. I just want to spitball in my mind what the doctors might suggest. If you have a lot of room in your young body for treatment, then I would think that is good for dialing up success. There are many H&N members who have received multiple cancer treatments and they get through the treatments well.
I have no way to calm your nerves and promise you a sunny and clear tomorrow, but I can say from the little I have read about you, I think you will make out fine in whatever you have to go through again.
Matt
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Have faith in your team like I do in you. Peace brother.JAL23 said:Thanks Matt,
Thanks Matt,
I know the motto all too well at this point. Still scared though!
I think you might be describing my first treatment (on the tongue). The reccuance was treated in January with full radiation and chemotherapy (cisplatin). They quite literally threw the kitchen sink at this one. It was initially a bunch of doctors, but we wound up under the care of Dr Nancy Lee at MSK.
my fear is that there just isn’t much left they can do after all that’s been done. I tried bringing it up to my oncologist over the phone about the hypothetical “what if” and he mentioned something about it not being “routinely curable” and then stopped himself and said “we need to figure out what this is first.”
i thought I’d at least get a worry free summer after treatment. I was just starting to feel happier and I can feel my neck getting warmer as well. I can’t understand how after all that chemo and radiation and clear scans, this could happen so suddenly and so fast. Meanwhile, I’ll try to be comforted by the motto around here.
JAL23,
Your story has made me feel like I missed your posts and the Posts: 84, may be evidence that I did.
Motto, smotto, tomato, tomotto, you have every right to feel gypped. Dare say I that all H&N members entering treatment want to pass this way only once and we want all the cancer treatments necessary to send us on our merry way.
So, you went the wait and see route and the results was your January treatment. Did they re-stage you or give a more refined and focused description of what and where they found the (new or additional) cancer and what they want to do for you? If they missed finding this current cancer in October, believe it or not that is sometimes how it happens. Not a lot of time has gone by, they are actively working on you and Dr Nancy Lee at MSK is a doctor you want on your team. Her informational page was impressive and her statement “No matter which treatment option we use, I care for all of my patients as if they were part of my family”, should instill confidence and faith of your treatment plans moving forward.
Now I do not want to pretend to know much about this stuff, but I try to be lay Matt thorough. You mentioned Dr. Nancy Lee at MSK and you also mentioned “I tried bringing it up to my oncologist over the phone about the hypothetical “what if” and he mentioned something about it not being “routinely curable” and then stopped himself and said “we need to figure out what this is first.” Do you have two radiation oncologists and does Dr. Lee agree with the (He) you are referring too?
There was a doctor on this site for many, many years (LongTermSurvivor aka Dr. Patrick S. Dunlap), he provided this site with a wealth of knowledge and he almost always said that a cancer treatment team can in many cases provide additional treatment without detrimental effects to the patient. I will be firmly in your corner for the information you receive and the care you get to be spot on for a new normal, which you rightly deserve.
Take care.
Matt
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I started with Stage 1 (T1 NXCivilMatt said:Have faith in your team like I do in you. Peace brother.
JAL23,
Your story has made me feel like I missed your posts and the Posts: 84, may be evidence that I did.
Motto, smotto, tomato, tomotto, you have every right to feel gypped. Dare say I that all H&N members entering treatment want to pass this way only once and we want all the cancer treatments necessary to send us on our merry way.
So, you went the wait and see route and the results was your January treatment. Did they re-stage you or give a more refined and focused description of what and where they found the (new or additional) cancer and what they want to do for you? If they missed finding this current cancer in October, believe it or not that is sometimes how it happens. Not a lot of time has gone by, they are actively working on you and Dr Nancy Lee at MSK is a doctor you want on your team. Her informational page was impressive and her statement “No matter which treatment option we use, I care for all of my patients as if they were part of my family”, should instill confidence and faith of your treatment plans moving forward.
Now I do not want to pretend to know much about this stuff, but I try to be lay Matt thorough. You mentioned Dr. Nancy Lee at MSK and you also mentioned “I tried bringing it up to my oncologist over the phone about the hypothetical “what if” and he mentioned something about it not being “routinely curable” and then stopped himself and said “we need to figure out what this is first.” Do you have two radiation oncologists and does Dr. Lee agree with the (He) you are referring too?
There was a doctor on this site for many, many years (LongTermSurvivor aka Dr. Patrick S. Dunlap), he provided this site with a wealth of knowledge and he almost always said that a cancer treatment team can in many cases provide additional treatment without detrimental effects to the patient. I will be firmly in your corner for the information you receive and the care you get to be spot on for a new normal, which you rightly deserve.
Take care.
Matt
I started with Stage 1 (T1 NX MX) back in February. This was on my tongue. Then, in Oct one of my lymph nodes blew up, and a neck dissection revealed Stage 4b (T1 N3 MX). It was after the neck dissection that we left our local hospital for MSK to get radiation and chemo. After treatment an early response PET showed an all clear.
Nancy is in the loop on this, and they are all suggesting to do the biopsy. My team includes Dr. Lee for radiation, Dr. Michell for medical, and Dr. Cracchiolo for surgical. They are all in agreement on this one, but I spoke with Dr. Michelle (the “he”) over the phone.
I am confident in my team. They are concerned, but they aren’t making a call based on the chest CT. The biopsy is the only definitive way, apparently.
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My husband finished this pastJAL23 said:I started with Stage 1 (T1 NX
I started with Stage 1 (T1 NX MX) back in February. This was on my tongue. Then, in Oct one of my lymph nodes blew up, and a neck dissection revealed Stage 4b (T1 N3 MX). It was after the neck dissection that we left our local hospital for MSK to get radiation and chemo. After treatment an early response PET showed an all clear.
Nancy is in the loop on this, and they are all suggesting to do the biopsy. My team includes Dr. Lee for radiation, Dr. Michell for medical, and Dr. Cracchiolo for surgical. They are all in agreement on this one, but I spoke with Dr. Michelle (the “he”) over the phone.
I am confident in my team. They are concerned, but they aren’t making a call based on the chest CT. The biopsy is the only definitive way, apparently.
My husband finished this past November 2017 with his rad/cis treatment (stage iv bot scc hpv +).
PET early 2018 showed nodules in right lung. Tried an antibiotic, three weeks later CTScan showed nodules in left lung.
Asked for a biopsy to make sure we knew what kind of cancer. Same as tongue.
Coming up on 3rd treatment of Opdivo with no issues and first CTScan. Fingers crossed.
This ride sucks but we are going through it with hopes we will kill this beast as well.
There is hope. Prayers work wonders.
we are fortunate to be within both Phila and NYC for further treatment clinical studies.
Hang in there.
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I promise to let it goJAL23 said:I started with Stage 1 (T1 NX
I started with Stage 1 (T1 NX MX) back in February. This was on my tongue. Then, in Oct one of my lymph nodes blew up, and a neck dissection revealed Stage 4b (T1 N3 MX). It was after the neck dissection that we left our local hospital for MSK to get radiation and chemo. After treatment an early response PET showed an all clear.
Nancy is in the loop on this, and they are all suggesting to do the biopsy. My team includes Dr. Lee for radiation, Dr. Michell for medical, and Dr. Cracchiolo for surgical. They are all in agreement on this one, but I spoke with Dr. Michelle (the “he”) over the phone.
I am confident in my team. They are concerned, but they aren’t making a call based on the chest CT. The biopsy is the only definitive way, apparently.
JAL23,
The lymph nodes will do that (blow-up), it was declared IVb because of the size and the location not with the primary (I believe that is the short answer). The PET showed all clear to the neck area and the tongue? You might think I have been drinking alcohol by my questions, but I am not. I promise, I will try to remain silent after this. The following timeline is what I am trying to figure out. You said “back in February,” is that 2018? You then said “Then in October,” which implies October 2017, which might make the February you mentioned February 2017. Your tongue and neck are now fine, if that is correct, your treatment in those places worked.
Now we move onto your left lung and what may or may not be a cancer treatment issue. There are a number of H&N members who have used some of the new treatment methods described on TV commercial (and on here). MSK should be the “place to be” which ever route you go.
Normally, when I drone on like this an aggravated listener might say “just shoot me.” I hope I have helped a tiny little bit to make your situation not appear too bleak (just think what my wife puts up with).
Good afternoon,
Matt
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Hi Matt,CivilMatt said:I promise to let it go
JAL23,
The lymph nodes will do that (blow-up), it was declared IVb because of the size and the location not with the primary (I believe that is the short answer). The PET showed all clear to the neck area and the tongue? You might think I have been drinking alcohol by my questions, but I am not. I promise, I will try to remain silent after this. The following timeline is what I am trying to figure out. You said “back in February,” is that 2018? You then said “Then in October,” which implies October 2017, which might make the February you mentioned February 2017. Your tongue and neck are now fine, if that is correct, your treatment in those places worked.
Now we move onto your left lung and what may or may not be a cancer treatment issue. There are a number of H&N members who have used some of the new treatment methods described on TV commercial (and on here). MSK should be the “place to be” which ever route you go.
Normally, when I drone on like this an aggravated listener might say “just shoot me.” I hope I have helped a tiny little bit to make your situation not appear too bleak (just think what my wife puts up with).
Good afternoon,
Matt
Hi Matt,
October 2017 was my neck dissection. Started rads/chemo in early Dec 2017 and finished treatment early Feb 2018.
As far as I am aware, PET scans are full body. They did one in October (showed nothing distant) then again in November (MSK wanted one more before treatment, this one showed nothing) and then finally one in late Jan (again, showed nothing).
Matt, your advice is always helpful. Thank you. I’ll keep you posted after I know more from the procedure.
John
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Thank you again for all of
Thank you again for all of your good thoughts. Preliminary fluid analysis (of the plural fluid drained) showed no sign of infection or malignant cells. The biopsy went well yesterday. They got two core biopsies out of my chest, so I’m still a little sore. We’ll see what happens in the next few days.
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Continuing send goodJAL23 said:Thank you again for all of
Thank you again for all of your good thoughts. Preliminary fluid analysis (of the plural fluid drained) showed no sign of infection or malignant cells. The biopsy went well yesterday. They got two core biopsies out of my chest, so I’m still a little sore. We’ll see what happens in the next few days.
Continuing send good thoughts.
0
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