| Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | The thyroid test in a simple blood test. Make certain they run a full thyroid panel including the TSH level. They should have done this before you started radiation so you know what your base TSH is. If they didn't, get the test now so you have a base for it because at this point it sounds like your thyroid is working fine.
If it does go south in the future, it is treated with a small pill taken once a day. It can take a bit of jungling to get the correct dosage which is why it is important to know what your TSH was before treatment. No surgery is required.
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
| | | | 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 | What Eileen is true except for Stubborn Ass Italian Eagle fans. Those are just taken out back, given a used Atlanta Vick shirt and released but into the woods !!
On a more sane note...without or even with a TSH baseline it's hard to Dx a thyroid problem on blood work alone unless symptoms are present so just be on the lookout for the symptoms of Hypothyroidism like feeling tired, feeling cold when you shouldn't, just to mention the 2 that stood out for me.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | David, My TSH was at 32 and I had absolutely NO sypmtoms. When it got to around 15 on the meds, my only symptom was eating evrything in site. Took more than 3 months to get it back to my normal.
Since it is a routine test and requires no extra blood, if you are asymptomatic, I would have it checked at least once a year when you have other blood work done.
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
| | | | Joined: Oct 2009 Posts: 28 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2009 Posts: 28 | Hello all, I'm 55 years old with T1/N3/M0 (Stage 4) SCC of the Left Tonsil ( HPV-16 positive). Originally detected 3/20/09 with a 6 cm mass of enlarged lymph nodes. Treated with 9 weeks of induction chemo (TPF) followed by 7 weeks of chemoradiation (using IMRT) which concluded 8/26/09. Now we're considering neck dissection. I want to note that there are several types of neck dissection. The "gold standard" is a radical neck dissection (RND) which removes the sternocleidomastoid (SCM) muscle, the internal jugular vein (IJV), and the spinal accessory nerve (SAN) along with the lymph nodes. Then there are various forms of modified radical neck dissection (MRND) which remove fewer structures - although they all remove at least a few lymph nodes. < http://en.wikipedia.org/wiki/Neck_dissection> I recently had a CT scan showing a 2 cm mass still remains. I'm told this mass will contain live cancer cells in about 25% of cases like mine. We're soon going to do a PET/CT and, if this comes back negative, we'll probably NOT do a neck dissection. Its not clear what we'll do if it comes back positive but I think its likely we'll defer the decision and do another PET/CT in late December. Here are some articles I found on this topic: http://www.ncbi.nlm.nih.gov/pubmed/19358193http://www.oncolink.org/conferences/article.cfm?c=3&s=47&ss=267&id=1686http://www.oncolink.org/conferences/article.cfm?c=3&s=47&ss=264&id=1672http://www.ncbi.nlm.nih.gov/pubmed/17921898?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed I hope to avoid this surgery altogether. If surgery seems advisable, I hope to preserve the SAN, IJV, and SCM muscle. In my view, these structures are unlikely to harbor live cancer cells and only need to be taken if there is a strong likelihood that the immediately adjacent tissues harbor live cancer cells. Preserving these structures should help reduce long-term side-effects that reduce quality of life. Its my understanding that most modern neck dissections at least try to preserve the SAN. I hope the above information is helpful to some of you. Rob
Dx: T1N3M0 Stage IV SCC Left Tonsil HPV16+
CT 3/20/9. FNA 3/24/9. Panendoscopy 4/1/9. PET/CT 4/22/9 9 wk IC (TPF) 4/25/9. Port 5/11/9 removed 6/4/9 (clot) 7 wk CRT (IMRT; Carboplatin & Taxol) 7/8/9. PEG 7/9/9 CT 10/19/9. PET/CT 11/2/9. ND 12/1/9 6 wk CRT (IMRT; Erbitux, Carboplatin & Taxol) 1/6/10
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Rob, you are wise to do your homework. You will be better prepared to make a decision after you get the results of the PET/CT. 1. I, myself, so far have been very, very fortunate. I did have a modified ND, and I was very thankful for it! It gave me a great sense of confidence that the cancer had been removed by my original surgery and hadn't spread, and that, then, most of the metastatic pathway had been removed. 2. All cases are different. 3. With all of the treatment and diagnostic testing you have had, and with your living in Boston, you obviously are surrounded by knowledgeable professionals. LISTEN TO THEM. 4......and I am betting that you hear this more than once: Don't play much of a waiting game with SCC. If it were MY neck, I would run, not walk, to the operating room. But that's just me. Listen to your doctors, and while the final decision is yours to make, remember that you are not as prepared to make it as they are. XOXO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Rob, A PET/CT too soon will more likely show false positives. It has just been a couple months and that is quite soon.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | 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 | Yes be careful on a false positive read but with your facts it will be hard to dismiss it as well. Tough decision.
6 cm was huge. Didn't you notice that before?
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | First of all, never use Wikipedia as a source of information on stuff like this. Unless you are a physician, and can separate the wheat from the chaff yourself, rely upon your team. There is a fine line between being well informed (good) and substituting your judgment, based upon internet information(bad).
If you are treating at a CCC, adopting current practices, they will undoubtedly do an ND that preserves the maximum amount of functional tissue possible. Oftentimes, however, they do not know that until they get in there and see what is happening. Generally, the SCM, SAN and IJV are preserved unless they are structurally involved with tumor cells, or active disease is in close proximity and there is evidence of extracapsular spread.
In my case, I had a bilateral ND, due to the fact that my BOT tumor touched the midline. They removed nodes and connective tissue from Levels I through V, and both submandibular salivary glands, but kept the SCM, IJV and SAN intact.
Truly, the ND was the easiest part of treatment. Anytime they go into Level V, there is likely to be damage to the SAN and related nerves, which can cause shoulder/neck muscle issues, which I have, but is very manageable.
It seems that attitude toward ND is dependent upon whether you adopt the "go for broke" approach, throwing everything you can at the disease, or the "incremental" approach, doing the least invasive treatment providing the opportunity for cure.
That's a very personal decision, but one that needs to be made with the full informed opinions of your CCC treatment team. As others have said, I would not rely solely on a PET at this point, due to the high false positives, but your team will likely tell you that themselves.
Good luck. Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Oct 2009 Posts: 28 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2009 Posts: 28 | I'm being treated at MGH. I think I have a very experienced and expert medical team. While I'm not a medical professional, I am a PhD scientist with a background rooted in applied mathematics (which I use daily for a broad variety of government-sponsored engineering research projects)... so I think I am better than most patients when it comes to understanding the medical literature and separating "wheat from chaff" while reading various sources of information on the Internet.
My original (6 cm) nodal mass came up very quickly in March. The source (left tonsil) was identified in early April as the result of biopsies taken during a pan-endoscopy (which included a bilateral tonsillectomy). A subsequent full-body PET/CT, done prior to induction chemo (IC), showed no activity anywhere except the lymph node mass... not even in the remainder of my left tonsil. I responded very well to IC, which shrank this 6 cm mass substantially... but it was starting to grow back in the few weeks hiatus before I began chemoradiation (CRT). The recent CT observes a "matted nodal mass at left level II deep to the SCM muscle which appears slightly less prominent in size than before measuring 2 cm x 1.6 cm x 3.9 cm" and "at left level IIA, posterior to the submandibular gland, an enhancing lymph node smaller than before, measuring 9 mm x 7 mm today while previously measuring 12 mm x 10 mm." [The comparison is to a CT done in late June, at the conclusion of IC but before starting CRT.]
My next PET/CT is scheduled for 11/02/09... and I understand this is quite soon following CRT (so that false positives are likely). I'm really hoping to see negative results in the region of that "matted nodal mass" as this would tend to indicate its just a bunch of necrotic tissue. But, if the PET/CT comes back positive for this mass, I might ask my doctors about doing a FNA (or a small surgical biopsy) to try and sort out whether or not its a false positive.
Dx: T1N3M0 Stage IV SCC Left Tonsil HPV16+
CT 3/20/9. FNA 3/24/9. Panendoscopy 4/1/9. PET/CT 4/22/9 9 wk IC (TPF) 4/25/9. Port 5/11/9 removed 6/4/9 (clot) 7 wk CRT (IMRT; Carboplatin & Taxol) 7/8/9. PEG 7/9/9 CT 10/19/9. PET/CT 11/2/9. ND 12/1/9 6 wk CRT (IMRT; Erbitux, Carboplatin & Taxol) 1/6/10
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Rob just make sure they keep a close eye on this node,they have a nasty nasty habit of causing more problems than the origonal primary.I personally find it quite surprising that they didn't do a neck dissection N3 is quite a large secondary,and quite a few people here have been bitten on the bum by nodes like this.
have you had an MRI scan? You wouldn't have the same problem with false positives.
good luck in whatever decision they advise next.
love Liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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