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I had the PET scan this morning. I left the imaging center at 9:30am. Then no more than one hour later, my new local oncologist’s office called to say they already had the results and they wanted to see me ASAP.
Unfortunately, ASAP for them meant tomorrow (since my oncologist is not in town today) and tomorrow I finally have my long-awaited appointment at Moffitt. So what I decided to do is see the Moffitt specialist as planned at 11am, then immediately make the two hour drive home and see my new local oncologist in the late afternoon. (This is going to kind of suck for the friend who is driving down with me because we had planned to do something fun in Tampa after the appointment, but I think I’d just better get on with things.)
I tried to get the PET scan results to Moffitt, but we were having problems, so I drove back to the imaging place and picked them up in person.
So, long story short, I already have the PET scan results. I was really nervous getting them, but they seem to be very good news .... I think. Well, I told everyone already they were good news, so I hope I don’t have to eat my words.
The good news: The PET scan was of my entire body (except for the lower legs). The only signs of malignancy anywhere — the only areas with any SUV recorded at all — were the three lymph node tumors we already knew about. Nothing in the lungs, abdomen, throat, etc.
The palpable supraclavicular node had a maximum SUV of 4.2. And the smaller, nonpalpable paratracheal node had a max SUV of 4.1. So these nodes seem definitely malignant, but not incredibly active. True??
The potential bad news: The large nonpalpable paratracheal tumor has an SUV of 13. I am just getting going on researching the results, but this seems obviously worse than the other two. How much worse? I’m not quite sure, but I am thinking high-grade, quite active, without being off the charts intensely malignant. Maybe this is why my new oncologist wanted to see me ASAP.
I am going to do some more research, but in the mean time, does anyone know how dire a SUV of 13 might be?
The other piece of bad news is that there is still no trace of a primary tumor. I have read that in squamous cell carcinomas of the neck, unknown primaries are not that rare. But my nodes are so far down that two of them aren’t even in the neck, but in the upper thorax near the spine and the trachea instead.
Whatever happens I don’t want to get pushed into treatment for, say, oral-pharyngeal or tonsil cancer when the nodes aren’t really close to that region just because that is where the typical neck cancer with unknown primary tends to be.
I had the PET scan this morning. I left the imaging center at 9:30am. Then no more than one hour later, my new local oncologist’s office called to say they already had the results and they wanted to see me ASAP.
Unfortunately, ASAP for them meant tomorrow (since my oncologist is not in town today) and tomorrow I finally have my long-awaited appointment at Moffitt. So what I decided to do is see the Moffitt specialist as planned at 11am, then immediately make the two hour drive home and see my new local oncologist in the late afternoon. (This is going to kind of suck for the friend who is driving down with me because we had planned to do something fun in Tampa after the appointment, but I think I’d just better get on with things.)
I tried to get the PET scan results to Moffitt, but we were having problems, so I drove back to the imaging place and picked them up in person.
So, long story short, I already have the PET scan results. I was really nervous getting them, but they seem to be very good news .... I think. Well, I told everyone already they were good news, so I hope I don’t have to eat my words.
The good news: The PET scan was of my entire body (except for the lower legs). The only signs of malignancy anywhere — the only areas with any SUV recorded at all — were the three lymph node tumors we already knew about. Nothing in the lungs, abdomen, throat, etc.
The palpable supraclavicular node had a maximum SUV of 4.2. And the smaller, nonpalpable paratracheal node had a max SUV of 4.1. So these nodes seem definitely malignant, but not incredibly active. True??
The potential bad news: The large nonpalpable paratracheal tumor has an SUV of 13. I am just getting going on researching the results, but this seems obviously worse than the other two. How much worse? I’m not quite sure, but I am thinking high-grade, quite active, without being off the charts intensely malignant. Maybe this is why my new oncologist wanted to see me ASAP.
I am going to do some more research, but in the mean time, does anyone know how dire a SUV of 13 might be?
The other piece of bad news is that there is still no trace of a primary tumor. I have read that in squamous cell carcinomas of the neck, unknown primaries are not that rare. But my nodes are so far down that two of them aren’t even in the neck, but in the upper thorax near the spine and the trachea instead.
Whatever happens I don’t want to get pushed into treatment for, say, oral-pharyngeal or tonsil cancer when the nodes aren’t really close to that region just because that is where the typical neck cancer with unknown primary tends to be.
Jill.....well I do not know what all those numbers mean, but I would guess that no other areas that lit up must be good..having the results with you when you go to Moffitt is good....they should be able to interpret it for you..
First, understand that a CT scan consists of taking several x-rays all at once from several angles and then letting the computer organize it into a 3D image. Then, a PET scan is just a CT scan taken after they've given you a dose of glucose labeled with a "dye" that shows up on the x-ray. Cancer cells usually are metabolizing much faster than normal cells (hence the myth about avoiding sugar). The dye will "light up" areas of unusually high glucose metabolism- presumably all the spots with cancer cells....The SUV rating puts a number on what the eyes see on the pictures-- higher numbers (they run from 0-15) meaning more active up-take of glucose....Unfortunately, a small enough area of tumor cells won't be seen even if it's very active. (below the "resolving power" of the scan.
So, that is a good news/bad news situation: good news you don't have a whopper of a big tumor somewhere, but bad news that you still don't know the primary. OTOH- chemo is kind of a "shot gun" approach anyway- they blast away hoping to kill more bad cells than good cells. Faster metabolism usually means faster up-take of chemo agents too (always look for the sliver lining.)
If it's a 2 hr drive to the hot-shots, maybe they can give you an opinion and then the local guy can make use of the consultation and carry out the treatment.
First, understand that a CT scan consists of taking several x-rays all at once from several angles and then letting the computer organize it into a 3D image. Then, a PET scan is just a CT scan taken after they've given you a dose of glucose labeled with a "dye" that shows up on the x-ray. Cancer cells usually are metabolizing much faster than normal cells (hence the myth about avoiding sugar). The dye will "light up" areas of unusually high glucose metabolism- presumably all the spots with cancer cells....The SUV rating puts a number on what the eyes see on the pictures-- higher numbers (they run from 0-15) meaning more active up-take of glucose....Unfortunately, a small enough area of tumor cells won't be seen even if it's very active. (below the "resolving power" of the scan.
So, that is a good news/bad news situation: good news you don't have a whopper of a big tumor somewhere, but bad news that you still don't know the primary. OTOH- chemo is kind of a "shot gun" approach anyway- they blast away hoping to kill more bad cells than good cells. Faster metabolism usually means faster up-take of chemo agents too (always look for the sliver lining.)
If it's a 2 hr drive to the hot-shots, maybe they can give you an opinion and then the local guy can make use of the consultation and carry out the treatment.
I read that the resolution of the PET scan was something like 5 mm. That seems pretty small, but maybe it is less sensitive in the case of tiny tumors with less activity.
Well, from what I’ve read, squamous cell carcinomas of the head and neck (and I think that my tumors are considered technically “head and neck,” even though two of them are in the superior mediastinal region — T2-3 level) tend to spread in the lymph nodes in a standard, local and orderly way. So this would confirm that my cancer is behaving as expected.
If this is the case, then I am pretty sure I will be offered surgery or radiation and most likely both as treatment. In fact, this is what my surgical ENT was telling me on the phone when he read me the biopsy report.
I think chemo is only offered in head and neck when the lymph tumors are larger than mine or if they have shown signs of growing into neighboring structures.
I will be quite happy if this is true. I was fearing chemo more than anything else.
Unfortunately, from what I have read, my prognosis probably won’t be that great. Plus points for being female and a non smoker. Minus points for having lymph node involvement so low in the neck region. Again and again they say the higher the location of the cancer (in the neck), the more survivable. I don’t think mine can be much lower and still be in the neck, or the “neck” as the case may be.
I am going to do some more research, but in the mean time, does anyone know how dire a SUV of 13 might be?
SUV is not prognostic in any way. A higher number just means more metabolic activity was detected in that node (which generally means the tumor there is larger; it doesn't mean the tumor is more malignant).
I saw the specialist at Moffitt today. He assured me that I had a head & neck SCC of unknown primary, that these are very treatable even with a primary that remains unknown. He said at this point we should stop the search for the primary and just get on with treatment within a month. He said he would consults with his colleagues (the tumor board) and collectively they will come up with what they consider the best treatment plan for me.
It will be some combination of surgery, radiation and/or chemo. I expressed a preference for surgery followed by radiation without chemo, but now I am definitely second-guessing myself. What do I know? Hopefully they will just ignore my uninformed preference and truly go with what is best. Besides, truth be told I am now fearing surgery, radiation and chemo all for different reasons.
I need to decide whether I want the radiotherapy or chemo & radiation at Moffitt or locally following Moffitt protocols. Staying at home would definitely be more fun, but I am really thinking I should bite the bullet and move close to Moffitt for six weeks. I just trust them to be more careful, to do better monitoring, etc.
Hi Jill, glad you saw the specialist at Moffitt. I would choose being treated there, why not go for the best.
When we were going through the problems with DH being treated in the south at a general hospital, I mentioned to my sister, who is also an MD, "at least his doctor is a board certified oncologist". She said, let me tell you about board certified oncologists. Before she got married, she joined a dating service for professionals and wound up on a dinner date with an oncologist (board certified). Over dinner, he began telling her about how he decided on treatment plans for his patients, based on a series of signals he was getting through where people sat in the hospital cafeteria. She realized there was something very wrong with him, and got in touch with his department. They knew about him and were monitoring his patients and treatments. But he was still practicing (at a small local hospital).
Also, my dad, who had leukemia, started out being treated for a different kind of cancer at a small local hospital, until he got an urgent suggestion from a pathologist who had seen his slides, to get a second opinion in a large Boston hospital.
I saw the specialist at Moffitt today. He assured me that I had a head & neck SCC of unknown primary, that these are very treatable even with a primary that remains unknown.
That sounds hopeful. I've been following this thread and hoping for a good outcome for you. Glad to see this update.
Hi Jill, glad you saw the specialist at Moffitt. I would choose being treated there, why not go for the best.
When we were going through the problems with DH being treated in the south at a general hospital, I mentioned to my sister, who is also an MD, "at least his doctor is a board certified oncologist". She said, let me tell you about board certified oncologists. Before she got married, she joined a dating service for professionals and wound up on a dinner date with an oncologist (board certified). Over dinner, he began telling her about how he decided on treatment plans for his patients, based on a series of signals he was getting through where people sat in the hospital cafeteria. She realized there was something very wrong with him, and got in touch with his department. They knew about him and were monitoring his patients and treatments. But he was still practicing (at a small local hospital).
Also, my dad, who had leukemia, started out being treated for a different kind of cancer at a small local hospital, until he got an urgent suggestion from a pathologist who had seen his slides, to get a second opinion in a large Boston hospital.
Wow, what a story about that board certified oncologist. The crazy thing is that I believe every word. Institutions do protect their own ... sometimes at the expense of the general public.
I should also say that not only I want to go to Moffitt for the actual treatment because I trust them, but also because I just do not trust my local place, especially for chemo infusions. Just too many screw-ups and miscommunications there. Besides, the more the new local oncologist tried to sell me on it, the more suspicious I got.
And finally, while the oncologist at Moffitt was completely neutral about my prognosis (we just have to see how you respond to treatments, there is no way to know ahead of time), the new local oncologist was so bright and bubbly about how curable my cancer was. My husband was eating it up, but he hadn’t been at Moffitt earlier in the day (too far for him during a work day), so he couldn’t make the comparison. But for me, it just screamed: Moffitt = serious, honest, reputable; Local cancer specialist chain: sell, sell, sell!
I should also say that not only I want to go to Moffitt for the actual treatment because I trust them, but also because I just do not trust my local place, especially for chemo infusions. Just too many screw-ups and miscommunications there. Besides, the more the new local oncologist tried to sell me on it, the more suspicious I got.
Excellent thought process!
You are in good hands
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