| Joined: Nov 2013 Posts: 21 Member | OP Member Joined: Nov 2013 Posts: 21 | Stage 4 Tonsil cancer. Lymph node involvement both sides. No surgery. 7 weeks of cisplatin and radiation. Discovered with lump on right side just underneath jaw. Now a year out of treatment. After treatment the "lump" was gone. Then "grew back." Oncologist says it is just "scar tissue." From the radiation? Never had surgery. CT scan and then Pet scan a month or so after treatment completed show tumor almost nonexistent. But then this "growth" of "scar tissue." You can see the swelling on the right side of neck below the jaw line. But oncologist swears just scar tissue. However, he will not do any CT or Pet scans, ever, unless he sees "something." Insurance will not pay otherwise apparently. Now this "lump" or "scar tissue" will move side to side if pressed.
Any thoughts? No symptoms, no pain, no difficulty swallowing (or no more so than expected).
Tonsil Stage 4 7 weeks chemo/rad 4 months peg NED Pet 9/13
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Ron, radiation can cause massive scarring. The same kind of radiation burns that people get on their necks during radiation happens inside the body too. Having said that, I cannot say one way or the other what is happening with the swelling you have noticed, not being a medical person. Can you get a second opinion?
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | Ron, welcome to OCF! A couple things you wrote make me concerned. After finishing treatment your tumor is almost nonexistant? That does not sound right. The cancerous tumor should have been gone! If you had a scan only one month post rads that was too early to have one. At only one month post rads there would still be significant swelling which would show false results. A follow up scan should be at least 3 months post rads at the earliest to get accurate results. Do you have an ENT following your after care? If so see them to get checked out. I also suggest going to a major comprehensive cancer center (CCC) for a second opinion. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get another opinion. CCC list US News Best Hospitals ListPlease dont worry about what Ive written. I dont know if you have anything wrong or not. I always advise patients to get checked out if they feel something is not right. I hope its nothing serious! Best wishes!!! 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: Nov 2013 Posts: 21 Member | OP Member Joined: Nov 2013 Posts: 21 | After treatment I first had a CT scan and then a Pet. The pet was a few months after the end of treatment. The CT scan earlier. I don't know why I received the CT scan. The CT scan was ordered by the radiation oncologist, and the PET was ordered by the Chemo (Med) oncologist who asked me why the other oncologist ordered the CT scan-I told him I didn't know. I am not clear as to what the oncologist said about the Pet results except that that he said the cancer was gone, but I do recall him saying that something to the effect that the tumor shrunk-not that the tumor is gone, the cancer is gone. This is the treating oncologist, not the ENT, I don't see an ENT just the treating oncologist every couple of months, who told me after the PET scan a few months after treatment that their will be no more scans, ever, unless he finds evidence of a new primary or a reccurence. With respect to the swelling, the first time he said it was muscle tissue. The next time it was scar tissue. The last time-again said it was scar tissue and he set the next appoint four months down the line. I got to contact the insurance carrier and look into the procedure to get a second opinion. The ENT is really useless. When he ordered the original biopsy when all of this started, he failed to have them test for HPV. So I do not know if this was HPV related or not. When I asked about it, the radiation oncologist said it makes no difference as we treat it the same anyway. But I havn't seen the ENT since I was diagnosed, twice prior to starting treatment. Thanks to all of you for your insight.
Last edited by Ron Silver; 06-15-2014 05:28 PM.
Tonsil Stage 4 7 weeks chemo/rad 4 months peg NED Pet 9/13
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Ron, could you ask to have a copy of your CT and PET scan reports? It helps to have your own copy if you do go and see another doctor for a second opinion. Of course, you will also get to read what the radiologist said in the report.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | Hi - you need to know if it was gone (at least on the scan) at the end of your treatment. There is no such thing as nearly non existent. With Cancer it's either there or it's not. And if it's there it needs to be dealt with. Period.
I would ask for clarification. No Dr. can tell you if you are cancer free as not everything shows up on a scan. But if you have a scan that offers up any questions as to whether the treatment was effective and if there is still something of concern there then you need to know what it is (via biopsy) so you can either have it removed or follow up with other treatment.
Hugs and best of luck.
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: Oct 2013 Posts: 23 Member | Member Joined: Oct 2013 Posts: 23 | Ron, Please go see an ENT and tell of your concern! My Father had 2 tumors that were dissolved according to Dr's and now he has a 3rd tumor that was discovered, obviously not all cancer cells were killed, it keeps coming back!
I don't want to scare you, but you are the only one that knows your body. Get copies of your reports and go get a 2nd opinion at a CCC. Don't wait, keep calling your primary care doctor to refer you to another ENT or call the same ENT you had previously seen about this new lump. There must be a way for you to get seen through your insurance company, just find the way. I will be praying for you!
Caregiver along with my mother to my Father SCC 12/2012 age 63 25 rad end 2/2013 10 rad end 7/2013 9/19 recur. Stage IV not a candidate for surgery more chemo 10/2013 Clear PET 01/2014 cancer back on PET 04/2014 not operable MET to nose at a NCCN 35 Rad start 06/23/14 Chemo every week during Rad for 7 weeks | | |
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