| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | OP  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 |
Hi All,
I do appreciate the advise and opinions of you all along with your own experiences.
We saw the RO last week for the results of Kris's 9 week post treatment MRI.
We were told that "there has been a very good response to treatment" from his primary tumour at the base of tongue - his scans were reviewed at the weekly head and neck meeting so this is the opinion of the "team" .
This is fabulous news so we have at least cleared the first hurdle .
They will now send him for a PET scan to ensure there is no cancerous activity in the node that is still visible and that we can still feel. It is hardened and shrivelled.
I asked him again if they would proceed to ND if the PET showed the node was positive. Again he said no. They would do a Fine needle aspiration.
The RO told me that within 2 years no-one would be doing ND's as they are not necessary and the studies coming out now show this.
Guess I have to go with this approach - and I do want to. This is a whole head and neck cancer board/teams opinion.
I am just the wife who wants her husband to have the best, but I don't have their level of knowledge and expertise.
So, we will get the PET done and see what that shows.
One step at a time.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Good news!!! And best of luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 | Tammy,
If the PET shows activity then the FNA would be done just to confirm (or not) the presence of cancer not in lieu of removing that node. I would ask what they plan to do IF that node was positive for cancer.
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.
| | | | | Joined: Jul 2009 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2009 Posts: 38 | I had good response from my Chemo and Radiation but my ENT was pretty persistent in the ND as a precautionary measure. As it turned out, the post surgery biopsy showed only on microscopic malignancy in one node. But like someone stated above, it's not without its side effects/ risks. I in some ways feel the surgery was more to recover from than chemo or radiation. I had a bit of numbness all the way to my ear. Now I have a bit of tightness on that side. But like stated, statistically, it makes good sense.
Mark
BOT Squamous cell, stage IIIa
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | I found it the other way around - radiation is the gift that keeps on giving - the ND does cause stiffness but I recovered from surgery much quicker. Maybe because you had rads first? When they did the biopsy the microscopic cancer was dead right? If not Ghent the ND was the right call either way I err on the side of caution. Do what you can now -
Mark Sounds like you're doing great!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | One sure thing is that all together, they just keep on giving. They add up to make you a fighter for sure. Good luck thru it all.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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