| Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | So.....two weeks post treatment and faring well in most categories. No major throat pain, swallow ok but feeding through the PEG for the time being. The big issue is my concern that I can still feel a bit of a swollen node on one side (it is not visible) and I get to wait until early October for my scan.
Should I be concerned? Can Dr's check anything earlier?
Thanks in advance for any words of wisdom/guidance.
Jasper
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 92 | I am sure other ppl can answer your question better than I but I had a similar problem (I thought) on the left side. My ENT felt it and told me it was part of my thyroid and it was supposed to be there, don't know if that is the case for you but FYI. I hope someone else will chime in but I thought I had read that you are still being treated, tumors can continue to shrink for some time after you finish going for treatments. That is just something I remember reading so don't take it to the bank. If you are concerned call your oncologist and get in there early to discuss it, that is why they get paid the big bucks.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers 3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13 rad end 5-29-13
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Radiation continues to work just as long as your treatment lasted. I had a similar enlarged lymph node, that was slowly shrinking, and didn't have my post treatment PET scan until 5 months, due to inflammation, and it came back clear, even though it did not shrink completely. The doctors can feel the nodule, and may get an idea if it's cancerous or maybe just necrotic, inflammation, fluids, although not certain proven that way, and may monitor to see if it's subsiding or not. They can also do an earlier scan, and have read at 8 weeks, PET scans are 90% accurate, and some even do them at 6 weeks, in case further treatment is necessary, an FNAB or even surgery for a neck dissection, if its suspicious for reminiscent cancer. Speak with your doctors with your concerns. I hope this helps.
Last edited by PaulB; 07-23-2013 08:44 PM.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,294 Likes: 1 | Hi Jasper,
Do you have an appt. for your next MO, RO, ENT followups? I had these about 5 weeks post or so. The RO did a lot of feeling around and also checking as much orally without any scope. He quipped "I don't see any cancer", so I have to assume that doing these checkups for decades gives him enough experience to have a really good idea of what nodes would look/feel if there was some residual cancer.
My first post tx scans are being scheduled for next month sometime. I am just 7 weeks post, so that puts the scan around 11-12 weeks post. best to you, don
Don Male, 1955 Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I would still go in and bring it to the attention of your ro.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris had a residual lymph node. It was smaller and harder post treatment. His 3 month post treatment PET scan showed some residual cancer. He then had a neck dissection and it was removed. The pathology came back as necrotic tissue only. I would make sure your radiation oncologist is aware of it and ask what thy plan to do about it. 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: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | I do have appointments set up with ENT and MO in two weeks (4 weeks post treatment) and RO two weeks after that. I will definitely be bringing it up to get their take and for my piece of mind. I also just read a bit more on the NCCN site and it seems like they can do some tests in advance of the PET like a CT with contrast that helps to make an earlier decision whether to consider neck dissection.
All in all, sounds like I need to be armed with information and ask the questions at upcoming appointments. I remain concerned but hopeful and appreciate the info and personal experiences.
Jasper.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | While frustrating, generally speaking, re-testing too early is only likely to return false positive results and you DON'T WANT THAT. I'm due to have a post-treatment PET-CT in two weeks, a full two months following the end of my recent treatment. Any earlier would truly be pointless, because the PET-CT *will* show 'hot' results from the residual inflammation of the treatment. You likely must simply be patient, which is really difficult, I know.
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,294 Likes: 1 | Seth,
I polled here and over at CSN about the average time from treatment for the first PET. It seems generally 8 week is the very minimum but most seem to wait until about 12 weeks out. I am scheduling mine for 12 weeks out, just to be a bit safer with the false positives. don
Don Male, 1955 Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4
| | | | Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2013 Posts: 33 | I was curious about the timing. Seems like I am reading a lot of posts at 8 weeks post Tx - mine is scheduled for 12. I know I am not alone, but a tough waiting game.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin). Tx completed 7/2013 MND 10/2013 (Pathology Negative) Debridement for minor ORN 7/2014 | | |
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