Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
I just came back from a cancer conference and had a long conversation with a leading doc at MDACC. One of the things that came out of that conversations was that people with unknown primaries have a slight survival advantage in MDACC's clinical experience, (also reported at 3 other major centers). The thinking is just as posted above, that the body's immune system has in some manner dealt with the primary, which was likely very small, and all that is left is the node involvement. This was the first that I had heard of this, but for those thrown into the uncertainty generated by an unknown primary, perhaps it is of some comfort.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Feb 2006
Posts: 115
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Feb 2006
Posts: 115
Thank you, Brian, for passing along that information. It actually is somewhat comforting, as I never considered the possibility that the primary site of my husband's SCC could have already been gone at the time the lump was discovered on his neck, only that it was there somewhere and hopefully dealt with during treatment. The "unknown primary" status was extremely distressing for us but perhaps if we had thought of this possibility, it would have been easier to get past. I hope others who are just being diagnosed with occult primary will see this post.
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.
Joined: Mar 2006
Posts: 90
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2006
Posts: 90
Brian,
Ditto what Michele said about occult primary. We also found the unknown primary status extremely distressing and pushed doctors to make sure they had not missed something. I had never considered the possibilty either that it might be gone. I know you just never know with cancer so I have adopted the theory take it as it comes.
Thank you again Brian for keeping all of the invaluable information on this site so up to date.
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
Page 2 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5