#83437 11-03-2008 08:37 PM | Joined: Sep 2008 Posts: 9 Member | OP Member Joined: Sep 2008 Posts: 9 | I had my first scan since completing treatment today. Doctor said everything looked good. He mentioned six months until the next scan. I was under the impression it would be sooner than that early on. What have others experienced?
Dx 5/08 Stage 3 SCC No primary ever found Completed 35 IMRT tx 8/13/08. Taxatol, cisplatin and erbitux weekly for 8 weeks. No surgery PEG PET/CT Clear 11/08
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | I am not much help on proceedure frequency of scans...but I want to congratulate you on finishing treatment. I too have just finished treatment and have had office visits post surgery at one week...one month and six weeks...but no scans yet...but this is also in Canada which I am learning practice differently and I think it also depends on your case. Every person requires different proceedures and attention...your doctor must feel confident that things will be good...
I too am having a bit of trouble worrying about or getting it through my head that my doctor has said he got all the cancer and the nodes were clear...even though my mind goes a muck..but I trust him...Good luck and it is great that the treatment worked for you!!!
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Jimbo:
Which doctor is this? We all have so many doctors.
I see my ENT monthly still and Im 16 months post rad/chemo and 6 months post recurrance where I only had surgery. Chemo oncologist and rad oncologist are both every 6 months since 3 months post rad/chemo.
Most important thing you wrote was..... 'everything looked good'. Thats excellent news, congrats!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2008 Posts: 9 Member | OP Member Joined: Sep 2008 Posts: 9 | Doctor was the MO, after he reviewed the scan with the RO. Will see my ENT in a week or two.
Dx 5/08 Stage 3 SCC No primary ever found Completed 35 IMRT tx 8/13/08. Taxatol, cisplatin and erbitux weekly for 8 weeks. No surgery PEG PET/CT Clear 11/08
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Its not easy figuring out which doc does what sometimes, at least for me it wasnt. Before I had cancer I had no idea what an oncologist was. For me, I fell into a routine of seeing my ENT most often. Its kinda like he is the one who is in charge of my care but I still see the others from time to time just for check ups, which is a good thing Then there is also the dentist, oral surgeon, nutritionist and family doc. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | I just have the one doctor who has a partner,,,my family doctor...possibly a diabetic doctor...I have no idea what doctor takes care of what...lol...talk about no idea...
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | jimbo a lot depends on what shows up on your scans as well as what type of scans you have . My first Post TX scan was an MRI ordered by the ENT in Jan a little less than 3 months after TX ended last Nov. It was all clear, then a PET/CT scan was scheduled by the RO for May (six months after TX). Unfortunately I got an overcautious resident reading who plugged in "could be cancer" disclaimer so yet another PET/CT was done last month in October (11 months post TX). Congratulations on a good report. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | I had a PET/CT scan just under three months out from treatments, then another one 2 months later, due to what turned out to be false positives on the first one. Both ordered by my MO. My ENT/Surgeon and my RO are not enthralled by scans.
I am coming up on the one year anniversary of the second scan, but have not yet heard anything from any of the 3 about a repeat, and I just had my latest checkup with the ENT/Surgeon yesterday. I see the RO in December and the MO again in early January, so maybe he will order one then.
As you can probably gather, this is a highly individualized thing, depending upon the institution and the treatment course. 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: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 | [quote=Jimbo]I had my first scan since completing treatment today. Doctor said everything looked good. He mentioned six months until the next scan. I was under the impression it would be sooner than that early on. What have others experienced? [/quote]
Hey Jim
This is about the same time frame I had. Just had those first two, since then none since I have been pronounced all clear as well. Fast Approaching two years at this point.
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | 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 | I had my first post Tx CT appx 3 months post Tx and it showed all clear in the OC and neck but had 2 spots in my lungs, that weren't there pre Tx, that as the radiologist said "could not be excluded". Both my RO and my Mo said DON'T WORRY, (yeah right) and said that IF I WANTED they would schedule another CT in 3 months. Well I had my 2nd post Tx CT in another 3 months and again everything clear in the neck and OC and the first 2 spots in the lungs were gone BUT there were 2 new ones in the lower portion of my lungs. Again they said "not to worry", (yeah right) so they allowed me to get another one 3 months out and finally the 3rd CT in 9 months post Tx was all clear. Since then I have only had 1 more and as far as I know none are scheduled.
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 2008 Posts: 228 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2008 Posts: 228 | I finished treatments on July 31st and had my first Pet on October 15th. I got the all clear from that and now I see my MO every six months, my RO is every 3 months, and my ENT is every 6 weeks. I am supposed to have scans every 6 months from now on. Hope this helps!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Have a question:
Are there no other "screening" methods they can offer for part of the scans they may normally request, and then do scans maybe annually? My reason being for asking is once one has received radiation your body has been exposed to sooooooooooo much radiation already, adding in all of the xrays and scans they did prior to tx ... now they do a PET or CT every 3 months or so which have more rays than a normal xray and I wonder just how much the body can take before producing more cancer simply from all of the rays received? Seems like a cycle that could cause trouble for some?
Perhaps this all we have to offer with technology so far ... but thought maybe someone has received care somewhere where they follow a bit different protocol that may prove to be safer, long term?
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2006 Posts: 114 | I think sooner than 6 months in-between is rare. Following my last treatment which ended in December 07, I had a PET/CT in April of this year. It was clear. I started having some chest/back pain two months later in June - just upon deep breathing. They sent me for a chest x-ray but it was clear. The pain persisted and had gotten worse, so last week they sent me for a PET/CT. It indicated metastasis to both lungs with PET/CT correlation on the findings. I've had a couple of people ask me why they didn't send me sooner for a PET/CT but I'd just had a clear one in April, so I think it was prudent to wait. I had no other symptoms except the chest pain, which wasn't constant. I'm not sure if it's different for CT alone as opposed to PET/CT fusion, but I've not heard of PET/CT being more often than 6 months unless they're trying to verify that a previous result was a false positive from healing tissue, etc. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | steve: so sorry to hear it has gone to the lungs. you have been thru a lot. keep on fighting and i will keep you in my prayers. what is their plan for treatment at this point?
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | My team at MDACC have opted do ultrasounds on my neck every 4 months rather than subject me to PET/CT scans. Their reasoning is that the type of tumor they ultimately removed (what they found was not consistent with the biopsy results but they can't dismiss what the biopsy said) is not an aggressive one and that the risk from radiation exposure in my case was greater than the benefits. They also place a great deal of confidence in the technicians and doctors who read the ultrasounds to catch any activity. It seems a to be a reasonable alternative for me...not sure it would be appropriate for others.
Susan
Last edited by Suess57; 11-04-2008 07:46 PM.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Suess, that sounds like a great alternative than subjecting you to so much radiation which is harmful in its own right. it is sad that we have to look for cancer using cancer causing technology ... someday we can hopefully do it another way ... but for now that is what we have to work with. glad ultrasound works for your case though, that is awesome!
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
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