Hi everyone, I'm Patsy & my husband Doug (age 46 nonsmoker/drinker) was recently dx with SCC w/ unknown Primary. He went in to have what we were told was a cyst removed and ended up with a Rad neck disection. We just got a 2nd opinion, and have another appt on Wed (10/25). Hopefully we'll be starting treatment soon. They are reccomending rad. & chemo. This site has been so helpful!

Doug Dx 9/06 SCC TxN1M0 Stage III Unknown Primary

Welcome Patsy,

Where about in PA will he be treated? Have they done all the scans/biopsies in search of the primary? Mine was initially dignosed as unknown primary. I pushed for a CT/PET scan and that's when they saw activity on my BOT. Then a biopsy to confirm.

We're in NE PA. He's being treated in Danville at Geisinger (they have a partnership with Fox Chase out of Philly).

He's had Pre-surgery MRI, CT , ultrasound and needle biopsy. A post surgery PET/CT that showed minimal activity at BOT. Surgical biopsy of BOT & nasalpharnyx were neg. He had another post surgery CT today and we are seeing the team on Wed.

It's been a scary ride so far, especially trying to keep things normal for our kids (8 & 9)

Hopefully we'll get more answers Wed.

Patsy

Hi Patsy and Doug,

Welcome to OCF. Sorry that you had the need to find us.

I was treated at Fox Chase CC. and as you can see I live in Yardley. Not sure where Danville is. Any center associated with Fox Chase is agood place to be.

Please let me know if there is anything I can do to help.

Good luck on Wednesday.

Jerry

Welcome Patsy and Doug, Hope OCF will continue to be of help to you both- there are many really strong and giving people here. Amy

I was origianlly dx as occult primary as it never showed up anywhere but the sugerical oncologist told me he wanted to put me under and biopsy several likely spots, i.e. base of tongue, tonsils, etc. He said he felt confident (70%) he could find it and when I woke up my wife informed me he found on the base of tongue. It's important tx wise, reoccurance wise and survival wise to have the primary ID' or so I was told. I would ask more questions and seek more opinions before you let them start tx with an occult primary.

Welcome Patsy and Doug
I ditto what Amy said, at times during my father's treatment I don't know what I would have done without this website. Do a search under unknown or occult primary and you will find some good information. My father had unknown primary with all the biopsies and CT/PET scans but they didn't find the primary. He too was very healthy prior to the diagnosis and has never smoke or drank. Please feel free to email me privately. Treating an unknown primary means they will radiate a much larger area. Based upon the location of the cancerous lymph nodes in my father's neck they targeted some areas heavier where they thought the cancer might have originated. I was both relieved when they couldn't find cancer anywhere else but also frustrated at the same time not knowing where it started. You will find other OCF members with unknown primary through your search.
Keep posting and again Welcome
Kim

Hi Patsy & Doug. My husband was diagnosed with unknown primary as well. This terrified me and caused me so much anxiety at the beginning, worrying about the treatment being so much worse because they wouldn't have a place to focus, and he could not have IMRT which is more precise than the XRT. However, although the treatments were tough, it never got as bad as what I was anticipating and everything turned out okay. I sincerely believe that the side effects were no worse than if they had known the source. My husband is doing well, has some lingering issues but nothing severe, and his first scans following treatment were clear. I just wanted to let you know not to let the unknown primary diagnosis scare you unnecessarily. I wish the best for your husband and you. Take care,
Michele

Hi Patsy & Doug,
As you can see from my signature, I too had an unknown primary the first time round. They were never able to find it. Had XRT at Mercer Medical which is HUP facility. All follow up has been through HUP.

Anyway, just wanted to say welcome. Don't panic if they can't find it. My RO said sometimes they show up after your start radiation. But it also may have already 'left town' or be so micrscopic that it won't show in any test. the XRT should take care of that.

Were all here to help you through this. Read the previous posts and FAQs and then ask your questions. Always make certain there is someone to tkae notes at all dr appointments and have you list of questions ready.

Take care,
Eileen

Thanks for the warm welcome. We Started tx last week. The Hospital is about 1.5 to 2 hrs away so we've spent alot of time on the road. He's scheduled for 35 IMRT, and 7 treatments of Erbitux & Cisplatin. He was also supposed to receive Taxol but is allergic to it (He had a pretty bad seizure the 1st time they gave it to him) So far we're doing okay. I think the fact that he's able to get home each night to see the kids helps (our kids are 8 & 9 yrs)

Thanks for the support

Hello Patsy & Doug.
Sounds alot like my case, I finished rad & chemo in Aug. The next 2 months will be the worst. Eat, rest, get your treatments on schedule. It took a month before I felt anything like "normal" again.

Hang in there,

Welcome Patsy and Doug.
We're pretty new here too. I hope you continue to share your experiences, concerns, progress, anything!
Ginny CG to Mike who is now back to work.

Patsy & Doug, just checking in to see how you all are doing after week two. Since there are several people here on Erbitux, I hope you will let us know how Doug is doing with it. I'm also hoping you have some help with your kids. How are they coping so far? This is a busy time of year to have to manage everything. Take care of yourself too Amy