Hi--I'm a new poster to this site. I'm a little slow on the uptake (no pun intended) and didn't see this Forum topic till today. Please bear with me if you've already read my inquiries under the Treatments Forum...

I have been reading your website off and on for 5 months, since the midst of my husband's chemo/ radiation treatment for HPV+ tonsillar cancer. It was a tough road, but he was progressing beautifully. The last treatment was December, 2012. Then the 3-month PET/non-contrast CT came back with worrisome spots on lungs. A followup biopsy has confirmed P-16 metastasis to the hilar lymph node of lungs. One small spot, less than a centimeter, (even too small for trial participation) but "terrible" news. (to quote our rad onc). We have two very conflicting approaches from two different centers here in the Baltimore/DC area:
[1. Wait 8-10 weeks and do a CT with contrast to see how it's behaving. If growing, begin chemo
2.] Don't screw around with it and start chemo now.

Thanks to some responses already received from other Forum members, and by listening to our own guts, my husband and I are going to pursue treatment. But I am still wondering if anyone else who has had a recurrence was advised to wait. It seems so counter-intuitive, and yet, one wonders?

Also, I can't help but think that met was already in his lungs when all this began, and it just was too small to show on the September 2012 PET scan. (its SUV was 3.3 or so in the March PET) Maybe it doesn't matter, but maybe it means it's only there in that location--and not all over.

My husband is going for a CT (with contrast) chest scan today. Since its been 9 weeks since the PET/CT (non contrast) maybe we will get an idea of how this thing is behaving.

Thank you for reading if you've gotten this far. Just writing all this is therapeutic. Any and all insights are welcome.

Sincerely,

Mary
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Personally, I have never understood the "wait and watch" idea. It seems to me most times you are just waiting to watch the cancer grow, which isn't just counter-intuitive, it is not bright! I like your aggressive approach, but I am curious about why the approach isn't MORE aggressive. Is there possibly a radiation option? If the lung met is so small what about a cyberknife, or brachnatherapy (spelling optional) or whatever type of radiation to the lung. It doesn't sound like that has been completely explored. Good luck.

Donna

[quote]My husband is going for a CT (with contrast) chest scan today. Since its been 9 weeks since the PET/CT (non contrast) maybe we will get an idea of how this thing is behaving. [/quote]This is the best situation. Wait a couple days and read the CT impression and go from there. If it has grown you know something needs to be done, from my understanding it is usually palliative, unfortunately. Since they were stained p-16+ then you know they are neoplastic so that should be no surprise. I guess the chances of it shrinking on its own don't seem very realist and even it shows the same size then what to do, right? Most likely chemo anyway. Why they don't do surgery in these situations is something I do not understand as yet.

FYI - I have had two nonspecific spots on my lungs and am in a holding pattern. I am HPV p16+ too. The first PET from Dec 2012 showed them. The latest CT done in March 2013 showed them, no change. During that time I went through three rounds of induction chemo TPF (Taxotere, CisPlatin, 5FU). The primary BOT and regional lymph nodes shrunk away completely and the final impression was "near or complete response", so the rational is if these spots were neoplastic and p16+, they should have at least shrunk up some; they were small less than 1.2cm with SUV less than 2. CT done after these rounds and the spots shows unchanged, so the logic is if it was neoplastic and p16+, in other words, the primary had metastasized to the lungs, then the response should have shown these to reduce or disappear, which did not happen.

So this leaves the diagnosis on these things with pulmonary which I saw several times and they could not put their determine anything other unless going in and doing biopsy but since they agreed if it was same cancer then it should have responded so it must be something else. So the question became how critical is it to know if it is inflammatory and or scarring and it was generally agreed to just park this for a bit and wait for the next PET and/or CT scan to see if anything changes. I agree in this situation it does not seem critical to take any more steps right now to further study these two spots. It remains a bit unsettling all the same.

Post back the report for sure. don

I heard of a h&n cancer patient, with lung metasteses in both lungs, have a resection via VATs procedure, and Tarceva afterwards, others I have heard using Erbitux or other targeted therapies, some long term. I think there were recent postings with lung metasteses if you go to search. Not sure if IORT or brachytherapy can be done, but worth a look. Good luck.

So we spent a few weeks trying to decide if the biopsy ( general anesthesia , etc ) was worth it since it was anticipated by all to be inflammation. Ironically the one doc who really pushed us to reverse course and get the biopsy is the same one who is saying wait 8 weeks and rescan. What the heck? In your case Don, since you have the strong evidence of no impact by chemo, you have concrete evidence to base your decision to wait on . Poor sentence structure there but you get my idea, I hope. Thanks for sharing your experience.

Thanks for suggestions Paul and Donna. have not come across IORT before, or tarceva pr brachytherapy. Will be armed for next visit.

D what you can now its small sake to see if it can be removed

The MO called with chest CT results last evening. The malignant lymph node doesn't even show up on CT, because it is still small. (hence the argument for not treating). Generally, this result seems good; there has not been growth in the last 9 weeks. If it weren't for the biopsy, we wouldn't know it was there.

Still, I am getting closer to that appt at Hopkins (trying to find a date sooner than July)

I don't know how helpful this response will be for you, but I offer it in the chance that it might be (helpful.) BTW, I turned 74 on the 10 of this month.

I started out as Stage IV, got one tumor removed surgically (actually, that led to the initial diagnosis,) followed by 6 weeks of trying to find the primary (in the base of my tongue.) Found that and three other Metastatic tumors in lymph nodes in the throat.) 8 weeks radiation with Cisplatin at 3 week intervals (3 dosages in all) and was clean. For 17 months.

Recurrence in the liver (distant metastasis, now Stage IVc) treated with Taxol/taxetere and Carboplatin for 7 cycles and clean again.

HOWEVER, the time from detection to beginning the treatment was lenghy, 4+ months. This included two liver biopsies and installation of gold markers as targets to burn the new tumor(s) out with radiation.

After all that, it was decided to treat with chemo as described above. I suppose that's because I'm considered incurable. In any event, it eliminated the tumors.

Next (and most recent) recurrence was again in the liver, only this time in multiple locations. This, 90 days after my clean report. This time we treated it with Xeloda, a pill form of FU5. I completed those treatments with a clean bill of health mid-April, and won't have another PET scan until late Sept.

I believe that you are getting good advice about waiting as for those with HPV association, the disease seems to be very slow growing, and even for those of us in Stage IVc, seems to be quite manageable. I know that in my case, it will eventually cease to be so amenable, but single, localized tumors do seem to present no immediate or emergency demands. In other words, I'd go with my MO's suggestion and not worry too much about it.

Bart-Thanks for your insight. You may be the first person to agree with that particular approach of watch and wait...and it helps to get alternate perspectives.

I will get to work on the "not worry too much about it" part next :-)))))) (they really need an Alfred E. Neuman emoticon up there on the list)

Cheers,
Mary