#14254 06-06-2003 04:26 PM | Joined: Jun 2003 Posts: 6 Member | OP Member Joined: Jun 2003 Posts: 6 | My husband was diagnosed a little over 2 weeks ago with SCC of the tonsil. StageII. His right tonsil was swollen and throat sore for close to 6 months. When he saw the ENT 3 weeks ago, ENT knew what it was and told Bill he would take tonsil out following week and biopsy it. We, of course were worried, but prepared just in case. The following week, tonsil was taken out and the Dr. came back in 1 hour later to give us the news that it was, in fact, cancer (thank God it was in person). He said we would be doing radiation and he would know more after CT scan if there was any other type of treatment we would need. He told us at the time there would be no more surgery needed he felt he got all of it. It was a poorly differentiated carcinoma, with a good prognosis.
The same day of surgery we had CT scan done and saw the radiology oncologist. The RO told us Bill would need to have 7 weeks of radiation, due to the suspicion of possible microscopic lymphnoids affected by the cancer. first 4 weeks once a day, 5 days a week. Last 3 weeks would be twice a day, 5 days a week. We also got the CT scan back and they didn't find any cancer anywhere else.
Fast forward 1 1/2 weeks and Bill started treatment yesterday (thurs). Has had two now.
Everything has happened so quickly. Here is my question and concern. Should we have gotten a second opinion on the treatment plan or is this what we need to be doing? Is it possible for them to have gotten everything in surgery and us not need to have the radiation done or is this normal protocol for stage II SCC cancer of tonsil? The ENT said he got everything and felt confident of that.
I was pretty peaceful about us doing this until the reality hit us and he started the treatments, now I can't help but second guess what we are doing.
Please let me know any thoughts or suggestions of who we should go to to ask more questions of this or if we are headed in the only direction possible.
Thank you, Kathy | | |
#14255 06-07-2003 02:50 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Hello, Kathy, and welcome. As you read through the threads on this forum, you will see that it is very standard to follow surgery with radiation. Not always, but in the majority of cases, it seems to me. As far as second opinions, I think it is absolutely wonderful how rapidly your husband received treatment. Speed does matter and as he is receiving very conventional treatment, I would suggest that another opinion would a) most probably have recommended exactly what he is getting, and b) would probably have delayed his treatment. While radiation is not a walk in the park, I would never recommend skipping it. Think of it as a one-two punch with the surgery getting everything that can be seen, and the radiation getting anything else that might be there. As a patient who had both, who is now happily and joyfully back to normal, I cannot wear your hat or tell you to relax, but I can say that I am very pleased to have had the treatment your husband is receiving, and I wish I and every other patient could have had the short diagnosis to treatment time your husband had. There is much helpful information on this forum, and in the main site of the OCF about radiation and what to expect during and after, with tips for coping. Please know that you can always ask questions here, and there will undoubtedly be someone who has the answer. Good luck and lots of strength to both of you. Joanna | | |
#14256 06-07-2003 03:18 PM | Joined: Jun 2003 Posts: 6 Member | OP Member Joined: Jun 2003 Posts: 6 | Joanna, thank you for your response to my inquiry. I can't believe how fortunate we were that this has all happened so quick. From hearing other peoples stories on this site and elsewhere, I think we were incredibly blessed it happened as fast as it did.
Since it happened so fast we didn't have much time to think about it and that is why I put the question out there. I figured that we were doing the right thing but, you never know. This is the first time and it makes your head spin a bit and your thoughts are scattered (I am sure I am not alone). Two friend's husbands had cancer, one passed away 3 months ago, and my mother had breast cancer 4 years ago (she is thriving). I guess I didn't expect to have this happen to my spouse husband, who is 40. But then again, who does? No one.
I am hoping my husband will check out this site. Unfortunately, he has not been interested in checking things out. He has the Dr's to tell him what to do and he is going with that. I will send him this direction when he is ready to know more, I think he will need it.
Thank you again. Peace, Kathy | | |
#14257 06-11-2003 02:32 AM | Joined: Mar 2002 Posts: 188 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2002 Posts: 188 | Kathy B........You didn't mention your husband getting the PEG tube before treatment began. This is something your husband might want to ask the Doctors about. The PEG is not a medical neccesity, but it will make treatment a bit easier to deal with. Instead of worrying about how he is going to keep his nutritional intake up and keep from dehydrating he will be able to concentrate on the most important thing --- healing. IF you have questions reguarding PEG just check around this site a while and you'll be able to read both pro and con about it. Most of us agree PEG is a good choice, while others have been able to keep up their caloric intake without what seems like too much effort. Hope things continue to go well for you and hubby. Keep us posted on his progress. We do care. Sincerely, Donna
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments. SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously. Cancer free 6, yes, six, years!
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#14258 06-11-2003 06:36 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Kathy and welcome to the site. I was told also as one of my options that if I had the surgery, I would have to have radiation afterwards. I was a candidate for chemo and radiation so I went that route instead. There is a protocol that they follow about what stage and what treatments. Go to this site and they will explain it better than I can: http://www.cancer.gov/cancer_inform...c-731c-4e76-af9b-583f1948578d#Section_39
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)
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#14259 06-11-2003 11:40 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | While the NCI is THE authority that many look to, remember that different institutions have their own protocols for treating different stage cancers, and they all vary from the NCI statement on the link above. Also remember that this is not specific to any particular patient, and while the general guidelines might be appropriate for one patient with a stage 3 cancer, they are not right for another stage three with slightly different presentation of the disease. There are no absolutes in treatment of oral cancers at any stage.
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. | | |
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