| Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | My husband is almost three years post radiation (ended 12/5/06). His scans had all been good until the last round in May when they saw something at the base of his tongue where the original site was, but the oncologist said it was fluid, a cyst or plugged salivary gland and not cancer. Then the ENT looked at the report, got all upset, talked to the oncologist, the oncologist ordered an MRI mainly to pacify the ENT. The oncologist really did not think there was a recurrence (the oncologist actually said he would drop dead if there was a recurrence of cancer there). The MRI report came back with something on his cervical spine consistent with bone cancer. The ENT was very upset with this report. But again the oncologist and his radiologist looked at the CD and compared it to the many scans he has done and said the thing was there on all of them, isn�t growing, isn�t lighting up, probably is either some congenital abnormality that was always there or else is most likely arthritis, but not cancer. So in any event, the last couple months have been and up and down roller coaster again with getting worried and scarred, getting calmed down again. I am sure you all know how it feels. In any event we are fairly calm again re: the actual cancer part. He is having another CT/PET scan in Nov. In the meantime, he has been seeing the dentist who says his jaw bone on the opposite side from the cancer is deteriorating and he will eventually need two teeth extracted with all the potential problems with this. His current question is that his jaw and mouth swells overnight especially, on the opposite side from the original lesion (where his jaw bone is deteriorating). The swelling seems to be getting worse, not sure if this is related to his deteriorating bone in his jaw or what? We will need to be looking for a good oral surgeon in this area if he is ready for the extractions. Is there anything else he can do about the swelling? What are the options such as lymphatic massage to improve his circulation in his jaw? Is it normal for the swelling to be worse on the opposite side from the original lesion? Thank you.
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Maybe he is a candidate for hyerbaric treatments. They are suppose to help new blood vessels grow. I will find out for sure in the next few weeks.
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 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | I know the hyperbartic treatments are recommended pre and post dental surgery and extractions, wonder if they would help with the swelling? He is pretty miserable today with the swelling. Let us know how your hyperbaric treatments go.
Thanks for your response.
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | | | 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 | Barb, maybe its an infection of some kind. That would cause swelling. Hope its that or something else that is minor.
Ive done many HBO treatments and do not remember them helping with swelling. I can say they have helped with my healing, my jaw pain was intense before I went thru them. The HBO treatments have made me feel so much better, they healed me and even helped with my anemia, arthritis and fatigue.
Best of luck with everything your husband is going thru. 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 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | So Michael saw the second oral surgeon today, the one in Mobile, AL who the oncologist referred him to. He saw one in Ocean Springs, MS last week who his regular dentist referred him to. Anyway they both agreed his jaw bone is deteriorating and he will need two or probably three teeth extracted. The Ocean Springs one thought that since the teeth aren't currently bothering him and don't currently appear infected he should wait to have it done and told him that he wouldn't be a candidate for dentures after it. The Mobile one thought he needs to do it soon since if they do get infected it could be much worse (osteonecrosis), potentially fatal for him. The Mobile oral surgeon also did not think dentures should be a problem for him (he doesn't want to give up steak) The oncologist thinks he should wait until the next CT/PET scan in Nov and then get the exactions done before the end of the year. He has to have a "clean scan" before hyperbaric treatments. The oral surgeons in Mobile and the oncologist all thought his mouth and neck swelling and the dental issue are two different things. The oncologist thinks he probably sprained his neck, maybe tore some of the scar tissue from the radiation and is inflamed. So he is now on Motrin for 5 weeks to see if it will help the inflammation. If it doesn't he will send him to an orthopedic surgeon to be evaluated for possible rotator cuff injury. Since he will need 20 hyperbaric chamber treatments prior to the extractions and 10 after it (which our insurance may or may not pay for and they are supposedly $1,000. each - is that a normal cost and do insurances usually cover it???) and since the CT/PET scan has to be done prior to the dental stuff and that is currently supposed to be Nov. 17, this should put all the fun dental stuff and hyperbaric stuff right in the middle of the holidays. But as long as the scans are good, the dental stuff heals and hopefully he can still eat what he wants it is doable. So the long oral surgeon appointment today, seeing the oncologist after the oral surgeon and then taking my car in to get it fixed from it's work related injury about killed the day. We are both pooped!!
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Barbra, I am thankful for your post.. I too am wondering if Bulge on Right side is a possible Bone Cancer showing up?? I am going to Dentist tomorrow, to see if there are conflicting X-Rays that can show us what is going on.?? Nothing showed on my CT scan in June. I may be jumping to conclusion on this one.?? I would rather be on the safe side and check it out. Thanks Barb for your post.. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 |
It seems like the CT/PET scans are the gold standard for diagnosing cancers so if nothing lights up there is probably isn't anything or at least not cancer. They really studied the MRI results where the doctor who read it thought what he saw was consistent with bone cancer, compared it to his many previous CT/PET scans and saw the same thing, but it wasn't growing or doing anything and it didn't light up on the May CT/PET scan - so not cancer. Michael's oncologist says that if you keep looking for things that you will eventually find abnormalities in all of us which may not be anything major or anything that needs treatment. Good luck
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Barb, Thanks for the informtion. All is fine with me. No cancer, it was build up of plaque. So all is well for now.. Thanks..Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I spoke with my mom's lymphedema therapist today about your question. She said that she thought if he was going in for the swelling issue he should be wrapped for it. My mom has had over 50 dives, not for swelling but for the pain and healing. My mom also has a bit of swelling on the opposite side that her therapist has been working on, at the end of her tx today you could see that it was a little less swollen. She did ask that we bring that to mom's RO's attention when we go on 9/30. She wasn't quite sure if it looked more pronounced because she had the dissection done only on the one side. Mom is much more comfortable when receiving treatments. Kim, the therapist, said that in Germany they wrap the patients prior to going into chamber in a way that will help with the drainage.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Also, I don't believe my mom has received any bills yet from the HBO tx's. I'll ask her and get back to you. The HBO would probably also be good for help in healing his other issue also.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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