Hi all
First I want to thank you because I learned a lot from reading from your personnal experiences and advices.
My brother (52 years old) was diagnosticed with oral cancer on his left tonsils and a metastase on a cervical ganglion in October 2013 .He since had 3 neck surgery couldn t get a clear margin and had radiation (70 Gy over 7 weeks) and 3 cycles of cisplatin.He just finished treatment didnt get Gfeeding -had to be hospitalised for severe pain and dehydratation.I just came back from visiting him and although he is weak I know he is going to gain his strength back.I can tell he is worried about the efficacy of the treatment and since there are no marker what are the best way to monitor that the cancer is not coming back.What is the schedule?and which test are done?Thank you so much for your answers.
Hi, cocofrance
First of all, welcome to the OCF - glad you are here, sorry you have to be. It is wonderful you were able to be with your brother to help him. It must be hard to be so far away now.
If you go to this page on the OCF website -
http://www.oralcancerfoundation.org/treatment/guidelines.phpand scroll down a bit, you will find a .pdf on Treatment Guildlines. If you click on it and look at the follow-up recommendations, you will see that, typically, a physical exam would be performed every 1-3 months during the first year.
In the US, it is common for a follow-up MRI or PET/CT scan to be performed about 3 months after the completion of treatment. It is possible for both of these to show false positive, but if they are clear it is a very good sign.
Best wishes to you both.
Maria
Hi Maria
Thank you so much for the advice.Will be most helpful.I think now that treatment is done he was expected his oncologue to reassure him and it wasn t the case last week.Doctor was vague if cancer can come back and where...He just finish his last chemo on 3/4 so I think he will get MRI or PET/CT scan in 3 months.
Thank you so much for your response
Corinne
Welcome to OCF. Im sorry your brother has been thru this.
The fear of a recurrence is something we all deal with. After going thru the brutal treatments its one of all of our worst fears.
After finishing rads, recovery can be a long road. It can get frustrating having ups and downs. Seems like every time a patient begins to feel human again, they will take a couple steps backwards. Usually after about 3 months post rads most patients are doing much better and 6 months post rads, they are even better. A complete recovery can take a full 2 years for everything to get back to as normal as it will be for the patient.
Best wishes to your brother with his recovery.
Hi Cocofrance - welcome to the family. I am 3 months post radiation treatment (no chemo) and am seeing those after treatment effects discussed above, though they are only mouth and throat tenderness when eating. Improvement seems to be coming slower than I expected.
With multiple surgeries and then both radiation and chemo your brother may be uncomfortable for awhile to come.
If he is capable, get him to join this forum also. The direct contact between him and others will be beneficial to him in ways a caregiver can't address.
Tony
Hi
Thank you for your responses.I just wanted to make sure that in France the follow up is to the same standard than in US.So it seems that a PET scan to be peformed 3 months after treatment and physical every 1-3 months and check his TSH level.
What is your take on PET scan versus MRI or CT? Is it nocif for health?
My brother english is not that great otherwise it would be great for him to join.
Thanks
If where you are treated they have all three pieces of equipment then you are lucky. I hope others will weigh in on the benefits of one approach over the others.
Where I am treated they have only CT available; so I've never yet had an MRI or PET.
There is general consensus or set standard for scheduled scanning after treatment with a PET/CT, MRI or CT scan, in absence of any suspicion for cancer. NCCN guidlines do recommend post treatment scanning, 3-6 months, but only for T3, T4 disease for oropharynx, larynx cancers, and oral cancer is not mentioned as one. It's basically up to the doctor, and hospital's policy. They do have other set scheduling for physical, visual and palpable examination the first year every 3-6 weeks, then progressively further apart each year, and chest x-ray yearly, TSH testing at least twice a year.
My scanning at several CCC seem to be 3 months post treatment, then 6 months after that. I never made it past that without a recurrence, but it would go to yearly, probably after the first year. Mine were all PET/CT scans, around 14, but one time I needed an MRI to help identify a smaller area that was too scattered on the PET scanning. My ENT wanted to do a CT last time, seems they alternate PET/CT then a CT, but my RO insisted on a PET/CT, which is highly sensitive, and can detect cancer as small as 5mm vs CT and MRI that is usually larger than 1cm. The PET did identify a tumor that was 3mm x 7mm in my cervical neck.
As to which type they use also depends on what thier looking for or at. In genetal CT is good for bone, is the cheaper and most often used. MRI is good soft tissue, blood, and vein lines, PET/CT the whole body. CT and MRI may show false positives after surgery since they may not be able to differentiate between that and a tumor, but the PET/CT works on metabolic activity, but can show false positives too due to being highly sensitive. In general, the least accurate is a CT, then an MRI and PET/CT, but again depends, and sometimes more than one type test may be required. Upon diagnosis I had a CT showing tumor activity, but then was a sceduled for a PET/CTto show the whole body activity, and scope larger than the CT.
I hope this helps.
Hi
I can't tell you how much I appreciate all your responses.
Thank you Paul for your detailed answer it is most helpful!I now have a better understanding of the follow up schedule.
One more question I am going to throw there, he started to take some aloe vera berberis drops.I am a pharmacist and told him that I didn t think it was a good idea because I read that the aloe latex can be mutagenic.Anybody has an opinion?
When you are not feeling good it is always easy to hope that you found the miracle drug .
Best wishes for all of you.
As you well know, the problem with herbals and vitamin supplementation is that in general, we don't really know, one way or another. For example, if you google 'vitamin E neck and neck cancer' you will find a variety of studies with conflicting results. My husband's MO basically said no extra antioxidants DURING treatment. Since your brother is past treatment, it is probably not as critical, although the mutagenic part would flip me out.
I know this isn't much of an answer. Before his death, my dad (who scorned the medical establishment) took all sorts of stuff. I would carefully look up each new item so see if there was anything alarming associated with it. If there was, I would print the article, and give it to him, but at that point it was his choice, and my nagging him would have been counter-productive.
Take care,
Maria
I have sent you a private message (PM) a while back. Please take some time to review it and read thru the link. It contains important info, including how to add a signature. This is a very important tool in helping us to help you.
To get your messages, look next to the "My Stuff" tab, towards the middle of the top. You should see a tiny flashing envelope. Click in the envelope and you will get your messages.
As far as adding supplements to your diet, its best to check with your physician and use caution. What works for one person may not work for someone else. Your doctor has your complete medical history and knows you best. The doc also knows what things can interfere with your treatment and possibly cause a severe reaction. Even some vitamins are to be avoided during treatment as they can cause some serious problems with diluting the strength of treatments.
Best wishes!!!
Hi all
would like to understand why some doctors want to leave the port in place for 2 years and some offer to take it out 2 months after completing treatment.Any thoughts?
Thank you!
I had to keep mine until I got my final PET scan. My MO explained that they wanted the port available if my scan showed any remaining cancer (which would then require more treatment, including more chemotherapy.)
I had it removed as soon after my clean scan as I could arrange it, 10 days.
Hi
Just wanted to post how helpful this forum is.In June my brother had a PET SCAN.It came back suspicious in throat and lungs.They did 3 biopsies in throat and gave him a course of antibiotic for the lungs to see if it will clear hoping that it was just an infection in lungs.Of course it was stressful to think that he could have a recurrence so soon after finishing treatment.Well it was helpful to see in forum that often the PET SCAN gave false positive.I kept repeating it to my brother and the family over and over until we got the results back and we were very lucky because when the results came back it was indeed a false positive!
Thank you for the informations!
Huge sigh of relief for you all. Fantastic news. Thankyou for sharing.