We got the results of Dave's PET and the area that was treated was clean---BOT and nodes all good. But the lump under his arm(after the biopsy) is positive.
His Dr was nice enough to call from her vacation and speak to us about possibilities treatment wise.
They are pleasantly surprised that there is no sign of cancer anywhere else(it's unusual to present this way).
They are talking about possibly just radiation under his arm.
So, good news is early, small and caught quickly. And it is not in any organ.
Bad news is obviously metastasis.

Thoughts? experiences? Can mets be stopped if it is caught early enough?

Dave is handling it very well. But I find my imagination getting ready to run away again. Figure before it does I'd come on here and get some facts. Thanks.

Hi Susan,

Sorry that you are both facing another challenge. I don't have any info to share, just wanted to send a hello and tell you to hold strong. I'm sure someone will have some info for you soon.

Take care,
Donna

Try to remember that a PET scan is not a definitive determiner of a cancer, though given the history, it at first glance seems a likely bad sign. Since your armpit is full of node chains, and the area arond the clavicle on the route form the neck to the arm pit full of them, connecting the two areas, I am really surprised to read that there wasn't some node involvement between the two sites. For a metastasis to jump like this seems unusual. Remember that often nodes are encapsulated when cancerous and this does not mean it is in surrounding tissues if it is cancer.

I need to ask someone that knows me that i do, but it seems like if this is an isolated node, that surgical removal of it since they are close to the surface would be the first plan, and would be a determiner of cancer for sure, and removal of it.

Nodes can show up on PETS for lots of reasons besides cancer. I had a bunch of them in my chest hot after my last scan and of course my mind went right to cancer. I had some aspiration pneumonia going on that was undiagnosed, and those nodes were hot because of the infection in the adjacent area.

Brian,I'm sorry if I wasn't clear. They biopsied the lump and it is positive for squamous cell.
I think some of the puzzlement of the Drs is that it is only showing right there. They also thought it is unusual to be in the nodes and not show anywhere else. But, the rest of the PET shows no "uptake" as they keep referring to it anywhere else.

Dave originally had involvement in three nodes in the neck but they see no evidence of cancer after the treatment so he didn't need a neck dissection. And the BOT is also good on the PET. I think this is why it is presenting atypically.
To make it stranger, when they did the biopsy a ton of pus came out and the lump went way down. So, of course we left thinking it was an infection. He is also feeling great, gained weight, good energy,etc so we really thought infection.

They were leaning towards possible surgery and or radiation as opposed to chemo but that was just the first thought the MD was throwing out from her vacation. I do feel it's so early, there is a good chance of stopping the growth here. But I don't understand it enough to know if it means because it already jumped to there, that means it is in the system and will show somewhere else. Or is it possible, to arrest it there and have it go no further.

I'm not sure if I understand what you mean by encapsulated nodes.

Just as an update, they have decided to do radiation on the Axilla. If I'm understanding right it's "only"(?) in two nodes there.
For some reason,I still don't grasp the node thing the way I should. I do know there was no sign of it in the nodes they were previously concerned about it.

The team will meet and decide if any chemo is necessary but right now they are not leaning towards it.

We meet with the MD on Thurs so we'll get more details but I think this is based on the fact that the rest of his PET is so good(I feel like we were so close).

It's scary and frustrating but it does feel good to have a plan. And his treatment team is so caring and on top of this.

It also helps that every day he continues to look and feel better. It makes it hard to wrap my mind around.
Apparently, after the H and N radiation, this is "radiation light..."That's also a relief. They expect minimal side effects.

Susan, sorry that Dave is going through this and my thoughts are with both of you. Your description of the pus discharge was very familiar to me, that's what happened in my case and in fact the first biopsy from that episode was negative. It wasn't until the surgeon got in there that it was determined to be SCC. So I'm gathering the situation isn't all that unusual.

It sounds as if your doctors are doing exactly what needs to be done. Please keep us posted.

Courage!
David 2

Really? Sounds like you thankfully had a very persistant team for them to find out after a negative biopsy. What made them pursue it?
what on earth is that pus though? They drained quite a bit out of Dave and now it's filling back up again. We were going to check with the MD on Thursday to see if antibiotic is needed.

Our family MD who is a wonderful guy totally thought it was an infection also by characteristics. So, I guess we are also"lucky" that he was being monitored so closely and it was caught early.

Susan, it's great that you have trust in your doctor. That's key. To answer your question: after the first biopsy - the lump in my neck "grew back" (i.e. filled up again as with your husband) within a day - the doctor said that I could have the cyst removed if I chose to. Glad I chose to! But really, it was such a sizable hard nodule in my neck that it wasn't something that I would have wanted to live with. So it wasn't them pursuing it but my choice... yikes.

D2

This is a cautionary tale about trusting your own instincts:
When Gordon found a lump in his neck in Oct., we were referred to an ENT specialist, who sent him off for a biopsy at the local hospital (Nov. 19). The results showed macrophages, which can be present to fight infection or CANCER CELLS, and benign appearing lymphocytes. The ENT said the lump was benign and that we would "have to keep an eye on it"!!!!! (I had read enough to know that 80% of neck lumps in adults are cancerous.) Gordon asked if it was possible that the lump might turn nasty in the future, and the Dr. said it was possible. At this point I jumped in and said, "no, I think what Gordon wants to know is, should he have it removed?", to which the Dr. replied "if it was me, I would" (and he didn't say this in the first place because????). So we were referred to a head/neck surgery specialist and got in very quickly (Dec. 12). He took one look at Gordon's neck, barked out "it's not benign and it's not conclusive", did another biopsy right there in the office, and ran the samples down to the lab downstairs. On Dec. 29 (and a Merry Christmas to you too) we got the bad news that there were cancer cells in the lump. Gordon had a radical neck dissection about 2 weeks later and the surgeon poked around and found the primary site (BOT) with his finger. That and all the lymph nodes removed got biopsied, and the rest is history, as they say. What if we'd waited? What if we had taken the first ENT's word for it? The surgeon probably saved Gordon's life. Never, never take anything for granted. Go with your gut instinct and push if you're not satisfied. Anne

How very true, Elianne. In late November 2007, while playing around with a new blood pressure machine put in our break room at work, and while checking pulse rates, I accidently found a very small swollen place under my jaw on my throat. It didn't hurt, and I would never have noticed it if it weren't for feeling for a pulse in that area. You couldn't see it in the mirror, it was so small. However, I thought I should have it checked by my general practitioner. He did, and said it was a swollen lymph node from a sinus infection, and gave me antibiotics. After about two weeks, it was still there, but hadn't changed. I called the GP, and his nurse told me I was being paranoid and not to worry - she had them all the time. Several weeks later, it still bothered me, so I went to an ENT on my own, who did a needle biopsy and a scan of my throat. All the scan showed was my tonsils were slightly swollen, which was caused from a slight infection; the needle biopsy came back NEGATIVE. He said we should just watch the swollen place to see if it went down. I went on vacation, but the entire time, I still had a feeling something wasn't right. After two more weeks, and on my return home, I decided to go to another ENT for a second opinion. He agreed I probably had a tonsil infection and that I should probably have my tonsils removed, which I did. Guess what? Stage 4 squamous-cell cancer underneath and spread to other nodes. And that is "the rest of the story." So, be very proud of your determination and pushing. Good luck to you and Gordon. Sounds like your "gut instinct" deserves a lot of praise. I think you saved Gorden's life, along with the surgeon.
julieann
julieann