Jay,
I've been following your posts for months and so pleased until I read this post. It seems like everyone is right on top of this and aggressively planning the medical treatment and outcomes.

If I may digress. I read this in your post, "21/3/13 & 21/6/13: PET/CT Scan + Full Scope - CLEAR! " This is just a few weeks ago; then I read here about results of a biopsy from the bronchoscopy of the lung nodule. Maybe I missed something on the other posts but what happened from all clear to SCC on lung nodule?

I ask as I have two still undefined lung nodules and try hard to put them into a little box and hide it away but now and then I read this sort of recurrence and the fear blows over me and just freaks me out.

I do hope the very best for your family, keep us posted. don

Please consider asking about photodynamic therapy as well. It has a lot of promise with minimal side effects. hugs.

Had our meeting with the Cardiothoratic Surgeon today after the multidisciplinary board got a chance to look through Jen's case and her PET scans from Wednesday.

Looks like the cancer is indeed isolated in the left upper lobe and will be surgically removed next Wednesday - a lobectomy using non-invasive VATS. One level V lymph node showed moderate uptake on the PET scan well away from the cancer so as a precautionary measure, they are also going to remove the rest of the lymph nodes that lead from the neck down to the lungs just in case and will determine whether or not radiotherapy and/or chemotherapy is required once they are able to see if there is any cancer cells in these lymph nodes.

The shocking news was to follow - the doctors were unable to determine whether or not this was a metastases from the tongue cancer or whether it was a new primary lung cancer based on her recent scans & pathology reports. The way the cancer was isolated and formed within her lungs was also very mysterious and hence they have said its pretty much a 50/50 chance between mets vs. new primary.

In the instance of the cancer being a new primary - the chances of cure are very high as it has been caught extremely early. In the instance of this being mets to the lungs, they have given us a 30% 5 year survival rate as long as they do not see any cancer in the surrounding lymph nodes once they remove them via surgery.

They also found out that the SCC was HPV 16+ positive which is the first time we have heard this was the case.

Very confused and don't know how to make sense of all this information.. any experience, knowledge and/or comments that can shed light on this would be greatly appreciated.

Well Jay, this actually sounds positive. Surgery next week is great, they are moving fast which you know is good. I think the removal of the lymph nodes is also a good move.
Try not to focus on the statistics. Charm would tell you you are either a survivor or not.
I have heard that there are a new subset of young women, who do not smoke, being diagnosed with HPV positive lung cancer. Maybe this is a whole new primary, which as you state would be good news from a cure point of view.
Please keep coming here and updating us.
Sending you many positive thoughts. Don't borrow sorrow from tomorrow.
Tammy

Maybe we can assume that being HPV positive the scc will respond well to treatment. There is hope as long as it is treatable. Sending you lots of positive energy.

Jay- First of all, HPV+ and new primary possibility are good news. When my husband's spread was found in late April, the doc said it could be (1)a new primary (best case scenario), (2)a metastasis of the previous SCC, or (3) oligometastatic disease (a metastasis that stays confined to one or two areas). It was confirmed metastasis thru p16 staining of pathology slides. Followup CT with contrast showed no mets to lungs. The metastasis is confined to the lymph node(s). I do not know when you say Jen's is in the lobe if that means it's in the lung itself or if it's confined to lymph node. (is the lobe a lymph node or part of lung?) Because my husband's is confined to lymph nodes, and because it is slow moving (benefit of HPV+) the docs at Johns Hopkins have set a course of 6 weeks of radiation with chemo sensitizer to the chest area.

A very plain-speaking MO at Hopkins said cancer spreads thru lymph system and/or through blood. My husband's is presently confined to lymph. The RO said, "HPV is a gamechanger. Ten years ago we wouldn't have been talking about treating toward cure in lung mets" We have gone from utter devastation to much hope in the last 10 weeks.

I've rambled on way too much, but I am still "high" on the prospect of having a plan in place (as of 18 hours ago) to beat this thing down. Please feel free to send any questions. What Hopkins (and also University of Maryland) are doing is somewhat cutting edge, so am happy to share what I know, if it applies to Jen's case. Can you push to find out if testing is available to determine if it's metastatic or new primary??
Mary

Hi just to clarify... The lobe is in the lungs. The news sounds good. Ignore the odds, and push towards a cure. Hugs.. And so glad they are moving fast.

All four doctors - including the doctor who performed the bronchoscopy said it was either a bacterial infection or Turberculosis at worst based on the CT scans (all three) and even after the scope procedure itself.

The reason why this was the case is because how the cancer has established itself in Jen's lung - the cancer is actually within a pulmonary cavity (a air capsule if you would like to put it simply)!

This means it is impossible to measure the size of the tumor other than the fact that it is at maximum the size of the cavity itself (2-3cm) and that none of the surrounding area including the lymph & blood vessel channels show any traces of cancer.

To put it short - the cancer is completely isolated surrounded by a pocket of air within Jen's lung.

At the same time - the type of cancer is the same between the tongue and the liver and hence they are unable to determine even with further tests whether this is mets or a new primary..

You can now see why I am so confused and baffled by this all...!

Hi Jay,
I don't have a lot to offer along the medical line at this point, but wanted, again, to offer my prayers and support. Thanks for posting an update.
Love to you both,
Kathy

Jay,
Thanks for reporting back. This is all new to me so I have nothing to offer other than my thoughts are with you and your family as you forge ahead into this uncharted water yourselves. Best of hopes and outcomes, don