Hi everyone
Hope everyone is doing well. It's been awhile since I have posted because my husband has been doing really good. All through radiation he was strong, still helping around the house, going to social events and dealing well with the radiation. He has been so strong and I am so proud of him. His radiation finished July 16 and we both went back to work Sept 22.
He was recovering well and enjoying being at work and not at home. About 3 weeks ago he started getting severe headaches. Prior to radiation he was using the dynasplint and had made great strides. He increased his mouth opening cold start from 15 to 25 in just 1 month. During radiation it was too painful to use and the saliva and the trismus was making it hard to use. He started using it again Sept 3. He was religious but we did not see any gains. But yet we were hopeful. Then the pain set in and prevented the use totally.
Now he feels the scar tissue in his cheek hardening. He is feeling similar symptoms as he did during radiation and the headaches are debilitating.
He is still working. We ant to emergency a few weeks ago and they did 2 ct scans and found nothing. But told him he was having migraines. Just wondering if any of you can shed a light on this.

We have a lymphodema clinic here and we have been there many times for physio and hey do nothing other then tell him to do exercise. We have an appointment with them again this Friday where we hope they will do some therapy on his jaw.

Sorry to rant. But a few issues scar tissue back with a vengeance, migraines and trismus getting worse.
Hopefully some of you may be able to help me out.
Wishing everyone well and thanking each of you for the support you provide c
Thanks.

Cantbelieve

The side effects from Radiation last a long time. For what I understand it can actually last for years. After my mother finished her RAD treatments she also suffered and still suffers with headaches . It was so bad that I was beginning to think that the cancer could possibly be spreading to the brain but that was not the case. A prescription of Fioricet which is for headaches helped a lot.

Good Luck
Heidi

I know radiation side effects come in different forms at different times. The lymph node area in my neck that was radiated has gotten more stiff over time and tightens up and will have a spasm now and then. I bend and stretch my neck many times during the day and that helps alot.

Not sure about migraines as that is something I've not had. As far as helping with mouth opening issues, why not just try popsicle sticks. It seems so much more practical and easier to use. Just add a few to get the right thickness, add another as you can tolerate. Cut and tape together to make a nice compact device.

Good luck

Cantbelieve, ranting is good. This cancer is a horrible rollercoaster and you need to grab hold of something solid like this forum from time to time:) Have you called the RO or ENT about the headaches and other side effects or are you like me waiting faithfully for the next appointment? I wonder if headaches can result from jaw pain. Trismus exercises can give me a strong pain in my jaw, albeit briefly.

I had a buccal mucosa cancer operated on in February too. I didn't suffer too much from the radiation, probably because it wasn't directed at the back of my mouth and throat. The long lasting side effects are still there though, the trismus, tooth problems, a hardening of the radiated tissues.

I hope others have more light to shed and if migraines become a regular problem there are some great meds for them out there now.

Best wishes

Rant away! Plenty of understanding ears here. Take heart, I was diagnosed in February, and I'm not back at work yet. Recovery takes a very long time, its always frustratingly slow. I hope one of the surgery patients can shed light on the headaches.

So we did another CT scan and we got the results last Thursday. ENT said it wasnt cancer but it was fluid in the jaw. Nothing to worry about. The ENT took out the fluid and sent the fluid for a biopsy just in case. He also booked us for an appt yesterday to see the other surgeon who operated on him for a second opinion. Well they found that the biopsy came back with suspicious cells for squamish cell carcinoma and they need another larger sample to be sure. I am so worried. The docs said that if its back so soon after an agressive dose of radiation and they say they got it in surgery as well, then this may be a very agressive form of cancer and could be terminal. I am so worried. I cant go through all of this again. Any advise? Have any of you went through something like this.

I'm very sorry to hear the outcome of the last tests. There are many here who have experienced first hand the shock of recurrence. If radiation was not done the first time that is maybe an option this time. Having more options is always good.

Just like the first time nobody wants to go through it but you did and you made it. Just try to focus one day at a time. Look down and watch each foot with the boots on taking one step at a time. You can make it. When it gets overwhelming you need to get your list of a few things to concentrate on. Each day will come and go and you will get through this journey.

Sorry to hear about the potentially bad news. I know it is not easy to just turn off your mind and not worry. However, there is nothing you or your husband can do about it now - you've already done your part going back to Foothills (I'm assuming). You have a great team of doctors, nurses and support folks working to determine what's up, and take the next steps if further action is necessary. I hope the results of this next sample come back soon so you don't have to worry much longer.

Cantbelieve

I'm sorry to see there may be a recurrence. My mother had only 35 radiation treatments after her first surgery. There was no Chemo ordered. In three months after her RAD treatments a CT scan was ordered yes it showed positive. Well the doctor ordered a MRI to get a clearer picture and it also showed the cancer was back. How ever the doctor couldn't feel any new lumps or anything. The doctor didn't want to believe it himself. So my mom was sent for a biopsy in the spot that was showing. Well yes the cancer was back. This spot was rite below her chin on left side. So back to "Emergency" surgery she went . The doctor took out what he could but closed her up. While the surgeon and Pathologist had my mothers face opened he discovered there were many many cancer cells all in the Cheek of her face. It was to much to remove.
Im new to this also but my understanding is it wasn't tumors all over it was cancer cells . But I guess it would form tumors in time. The Radiation treatment was a very aggressive treatment also. My mother actually went for radiation twice a day on the last two weeks of treatment. We are so shocked and in disbelief that this happened.

As of now my mother has been ordered Chemo Treatments and we are praying it helps. But in the mean time my mother is suffering with horrible headaches . She is on Fioricet which is a prescription headache medication. It helps a lot. Her headaches are so severe that I'm going to insist it being looked into. My mother said please don't even mention it because she don't even want to know. That's how upset she is I guess.

But Please look into this quickly. Your husband may need to start Chemo to slow down any spread.

Best wishes
Heidi

So the second biopsy showed the same thing suspicious squamous cells. The surgern is very worried and he wants to do a PET scan.
I have bunch of questions ... Can radiation be done again to site where radiation has been done.
Can things look like Squamous cells but not be squamous cells.
The biopsy wasnt diffinitive ... like the first one when we first find out he had cancer ... it came back for sure with cancer. This is so vague ... not sure what to think.
any advise would help

Yes, radiation can be done more than once. This is on an individual case by case basis. Much depends on exact location of original rads, length of time between courses of rads and only experienced RO will be able to determine if this is an option. Lets not get ahead of yourself with this. Lets see what the complete diagnosis is first. Sounds like there is a good team who is on top of everything.

Best wishes!!!

Thanks Christine ... you are always a good support to me and others on the site.

I know I'm trying not to get ahead of myself ... as well ... however its hard. We have a young family and I need to plan and be prepared mentally and emotionally.

The waiting game is the worst...

Cantbelieve

Id like to send prayers your way on which ever roads you have to cross.

When my mother first went for a consultation with The RO for her Radiation treatments I remember the RO telling her these words. "Radiation alone should do it but If you really want to kill this cancer then do Chemo & Radiation together". Well I was the one who didn't want my mother to do the Chemo. I thought she would get worse. You hear all kinds of bad stories about Chemo. So she Choose Radiation only.

So now after a recurrence within 6 months and surgery No.2 here we are.

My mother is finishing her second round of Chemo. Yes she has gotten sick from it but I guess that was to be expected. The Medical Oncologist said with the radiation still in her system together with this Chemo maybe we will see some good results. If not then we are talking about more radiation also. Hopefully the Chemo will weaken the cancer cells enough so radiation can kill it.

What I'm getting at is If more treatments are needed maybe you should talk to the Oncologist about Chemo and Radiation together.
I'm far from being a doctor Its only my personal opinion.

Good Luck
Heidi

thank you Sweetpea...
Yes I remember when we initially talked to the Radiation Oncologist they also recommended the Chemo with the Radiation. The odds were not that much of difference and my husband being a odds guy, said well its not worth the extra sufferring...
this week I have just been thinking the same thing ... if we had done the Chemo would we be here ...

We have an appointment for a PET Scan on Dec 8 ... which too me is way too long to wait for it... so we are trying to push other avenues to see if we can get it done quicker.

I just hope its nothing ... but ... know to expect the worst.

Cantbelieve

Wow ! Waiting until Dec.8th for the Pet Scan is a long time to wait. Hopefully you can get that pushed up.

If you get any answer on the Severe Headaches please let me know. My mom suffers so bad with them also. My mom takes prescription Fiorcet for the headaches and it seems like every 4 to 6 hours the headaches are rite back


Good Luck
Heidi

Cantbelieve I am sorry to hear of such a fast recurrence but am relieved that you caught it so quickly. I called my husband's ENT's administration and told her that we were available anytime if there were any appointment cancelations, this did not speed up our appointment but I figure it is worth a try.

My husband was at emerge on Aug 31, got a biopsy on the 6th and a scan on the 10th of 2013 and this was in Nova Scotia as he was on a painting trip. I would hope the process would be speedier in the case of a reacurance.

I know you will find strength, tell yourself you are doing everything you can and most importantly you are loving your husband with all you have and there is nothing in the world more important then to be loved. Take the time to just be and empty your mind of worry if you can. It is a traumatizing time, let yourself express openly with your husband. You are going through so much.

Feeling for you, Sophie

he just went to see the surgeon and he said since his tongue is paralyzed it means the cancer is back. Still gonna do a PET scan to be sure ... but thats what it is. They say they cant do surgery bc all vital parts are left and they cant remove any more ...
Im so scared and worried ... I dont want to be a widow ...
I dont know what to do

I am very sorry to hear this. I do not think your surgeon should be saying this to you without a PET and a biopsy.
I would be getting myself to a Comprehensive Cancer Center for a second opinion. I also think the decision on whether there are any treatment options needs to be made by a full tumour Board. Not just the surgeon. The Tumour Board consists of Surgeons, Radiation Oncologists and Chemo Oncologists. All treatment options are considered when looking not only at your Scans , but also examining you, and taking into account the past history and biopsy results.
When my Husband had his recurrence , I went into a complete panic. I was stunned. I had to learn to breathe and take a deep breath. Take this 1 day at a time. Get yourself some counselling . I found that helped me enormously. I also took a night time sleeping pill so that I could sleep, otherwise my mind raced and I cried all night.
So, I strongly urge you to get that second opinion and at a CCC. Advocate strongly for your Man. Breathe .
You will get through this.
Tammy.

Please go to a CCC where there are top notch doctors who have treated thousands of cases a year. A CCC is even more important when dealing with a recurrence.


(((HUGS)))

I am so sorry for your pain. Please seek the opinion of a full tumour board. My thoughts are with you.

Hugs, Sophie