| Joined: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 | How soon is too soon to receive your first scan after treatment. My friend just finished treatment - Started 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo. He is doing amazingly well. His doctors ordered a pet scan for the end of April - but it was moved up to yesterday and has already been performed. As anyone he is extremely nervous about the results. From all I have read - this seems really early for a scan. He is still pretty raw from the radiation. Is this normal protocol? I am just trying to help him prepare for what the doctors might say. He meets with them tomorrow for the results. Thank you for any insight you can provide.
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | A follow up PET scan is usually done at about 3 months post treatment. My doc told me that anything sooner has higher false positives dues to the inflammation.
When did your friend finish chemo and rads? 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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi JDOC
the accuracy of the PET will also depend on where the cancer was located as well as how long since radiation finished. You are right that if the PET is done too soon, healing may interfere with the results giving your friend a "false positive"
Alex also had chemotherapy before chemoradiation and had his PET scan 12 weeks after radiation finished. Alex's cancer was on his tonsil and base of tongue (BOT) which is the bit down the throat.
The difficulty with PETs is that it is not specific to cancer and also picks up the healing process, scarring and infection. Obviously,this is all going on soon after radiation. The idea of doing the PET at 12 weeks is to allow time for the healing process to settle down so the doctors can determine what is going on with the tumour.
It might help if you could give us more information about your friends condition: where was the cancer, how big was it, did the cancer travel to the lymph nodes, what was the last day of radiation?
Will you or someone close be going to the appointment with your friend? That would be a very good thing to do if you can manage it.
Good luck Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 |
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Its not the usual procedure for a PET to be done so closely with the end of radiation. Being post rads for 2 weeks is not enough time for any swelling to subside. Dont be surprised to see it come back positive. Is your friend being treated at a cancer center? 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: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 | Sorry I thought that information was in my profile. His cancer was BOT Stage IV with lymph node on one side - those were removed.
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, I had Stage IV tongue cancer as well, with surgery, radiation, and chemo over a 3 month period. I finished all of my treatments in August of 2009, and had my follow up PET scan in November of that year. Yes. Your friend's PET scan seems a bit soon.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 | His chemotherapy treatments were done at a cancer center at a regional hospital that uses/works with Sloan Kettering. His IMRT treatments were done at another hospital that works with the University of Michigan. Both his chemotherapy doctor and his RO worked together on his treatment.
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | There is a big difference with a hospital being associated with Sloan/Kettering and being treated at a major cancer center. A cancer center is one location which meets government criteria and where a team of specialists all work together as a team. They will meet weekly and discuss each patient's case working together to develop and implement a successful treatment plan. Bottom line is cancer centers offer the very best chance for a successful outcome.
Since your friend did not get treated at a cancer center it does NOT mean that he is not in good hands. Just that cancer centers treat hundreds of similar patients on a regular basis and have a proven track record of providing the best treatment outcome.
Please help us to get to know you easier by taking a minute and adding a signature. Click on the "my stuff" tab then on "profile", scroll to the bottom and type in the white box and click submit.
Last edited by ChristineB; 04-03-2012 02:56 PM.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | This is very early for a PET, and makes me wonder what the doctors are thinking.
Make sure that they are prepared for the area of treatment to really light up, it is no doubt still in repair mode and the inflammation there is going to make the scan worthless in that area. However, if there was suspicion on the doctors part that there was an opportunity to this to have metastasized to a more remote area than the neck, then a PET which looks at everything from the top of your head to your groin would show activity in any other vital organ. Of course that begs the question; if you thought that this might be a possibility why didn't you check this out before beginning treatment? The treatment might have needed to be more definitive and involve different therapeutic agents and techniques to deal with the mets in addition to the primary.
Even in those more remote anatomical places, benign things other than cancer will cause a PET to light up the area, so residual issues related to chemo, as the liver and kidneys are still processing it etc. all could be collateral to his treatments and not disease. Even an infection in the patient's lungs will give you a false positive. So while I'm a big believer that PETs are highly useful, at this stage of the game you have to wonder - with what everyone knows about early PETs and false positives, why are they doing this.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 | Hi Brian,
You and David both helped me tremendously when my friend was diagnosed and began treatments. (I don't know if you remember) This site is the greated tool for accessing first hand knowledge on dealing with this that I have found. Although he has not used it - it has helped me help him be very proactive in his treatment and knowledgeable about issues he had to face. So thank you all for helping by sharing your experiences.
His pretreatment PET scan showed no other spread of the cancer beyong the lymph nodes - everything else was clear.
Your thoughts on them checking for movement of the cancer is kind of what I was thinking also, but I also wondered if the doctor's might be able to see or read the PET differently when they know it is going to light up. He is still really inflamed and healing - he is eating daily but it is still like fire sometimes - which is still normal for this short time out ( at least that is what I have read and have been told.)
I am just trying to prepare him for the false positive results that seem to be likely to show up. I guess we will wait for Thursday when he gets his results.
Thanks again,
Jim
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Oct 2011 Posts: 8 Member | OP Member Joined: Oct 2011 Posts: 8 | Just thought I would post a quick update - My friend met with his RO today - his scan came back cancer free. They will scope him in 3 weeks at his next appointment. Couldn't be any better news! Thanks you for all the help.
Jim
Friend of BOT SCC with Lymph node involvement HPV positive Started treatment 10/8/11 3 weeks chemo (carboplatin, 5FU & Erbitux) followed by 40 IMRT with concurrent chemo (Carboplatin) Last treatment 3/20/12
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | YIPPEEEEEEEEEEEEEEE! WHAT A WONDERFUL POST - CONGRATULATIONS! julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
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