#21381 10-20-2006 02:29 PM | Joined: Oct 2006 Posts: 3 Member | OP  Member
Joined: Oct 2006 Posts: 3 | 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 | | |
#21382 10-20-2006 02:35 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | 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.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | |
#21383 10-20-2006 02:48 PM | Joined: Oct 2006 Posts: 3 Member | | OP Member
Joined: Oct 2006 Posts: 3 | 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 | | |
#21384 10-20-2006 03:35 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | 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
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | |
#21385 10-20-2006 04:39 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | 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
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#21386 10-21-2006 06:15 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | |
#21387 10-21-2006 11:16 AM | Joined: Mar 2006 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2006 Posts: 90 | 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
Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
| | |
#21388 10-22-2006 01:40 PM | Joined: Feb 2006 Posts: 115 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2006 Posts: 115 | 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
Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
| | |
#21389 10-23-2006 10:58 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 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
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | |
#21390 11-08-2006 05:38 PM | Joined: Oct 2006 Posts: 3 Member | | OP Member
Joined: Oct 2006 Posts: 3 | 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 | | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
