#69406 02-06-2008 12:04 PM | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Mar 2006 Posts: 99 | I haven't posted in a long time. My huband Stephen is coming up on his two year since diagnosis date and he had an appointment with his oncologist at Dana Faber today. With his 2 year since his last treatment date coming up I asked him to ask when his 2 year scans will be and much to my surprise he was told that they will NOT be doing any more scans, only scoping and chest xrays unless he becomes symptomatic. I am a little uneasy about this. They said it is standard practice but I don't like it. Just curious what you all thought... Kerry
Kerry/wife of stephenm StageIV - Base of Tongue T4N0M0 XRT x42 / Taxol and Carboplatin x4 Tx. Finished 5/08/06
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | My doctor, (surgeon), doesn't believe in scans either. I didn't have one after the second cancer for 5 years when I finally asked for one to verify a small, what turned out to be non-problem. CT scans do expose you to additional radiation so MRIs are preferred. I can't do them because of claustrophobia. My doc says they didn't use to do yearly H&N scans but now if I want one once a year, I can have one. I have some lung/pancreatic problems they watch so get run through CT machine below the neck once a year anyway. You can probably talk them into it if you are persistent.
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: Jun 2007 Posts: 214 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2007 Posts: 214 | I was at Dana Farber today, too. I meant to ask when I would get another scan and I forgot! Hhhmm...I thought there would be yearly scans after 2 years.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008. Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer. | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have had so many CTscans, PetScans and MRIs, it's a wonder I don't glow. All of these in less than a year. I sometime wonder if maybe I have had too many. But they do show things that the Dr needs to know.
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Found out at rads this morning, another MRI the 12th LOL I just gotta er that bright look. LOL
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
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | At 5 years they finally gave me a spiral CT and a couple of MRI studies - one for the eyes and the standard H&N, orbit MRI. They didn't like the spiral CT, said I had "broken glass opacity" in both lungs. Now this could be ANYTHING from minor aspiration, inhaling mold, minor lung infection, side scatter from the radiation or the beginnings of adenocarcinoma. Instead of my 6 month appt. with the MO they shortened it to 3 and want an instant replay of the spiral CT (without contrast this time). I'm reading into this the fact they want a review in 3 months means that they are not terribly worried about it and neither will I. I had the MRI over 2 weeks ago and still haven't gotten a reading report back.
In answer to your question Kerry, yes it is the recommended NCCN followup protocol, although my RO from UCSF demands an annual MRI. The standard chest x-ray is also NCCN SOP. Scoping, mirrors and palpation are still the gold standard.
Scans are a mixed bag. Radiologists are bound to report every single anomoly they find, waiting for the reports and then having them sorted out can cause much angst.
Personally I would like to see an annual PET/CT as part of standard followup but it's all over the map which doctors, institutions and even countries have a standard in that regard.
Last edited by Gary; 02-07-2008 06:56 PM.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | 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 | Gary,
I'm sure everything will turn out fine. Hope so for sure.
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Kerry - I am being treated at MD Anderson, and I am also coming up on my 2 year anniversary followup. My main doctor will only do a Chest x-ray and physical exam. This is the standard of care at MDACC. I did just have a CT scan on my last visit but that was because of some other symptoms I was having. (it turned out fine) Interestingly enough, most of the doctors at MDACC do not do routine PET/CT scans and don't seem to think much of them.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Gary, I hope everything turns out in your favor. You talk like a fighter to me and that is great. Good luck.
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
| | | | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Gary,
I'll think good thoughts and mention your name for blessings. On one side I really hate scans and on the other I always say yes when my ENT asks me if I want to do one.
Tim
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.
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