Recurrent SCC with brain met

KlammsBride19

Hello everyone!!

My husband's story started last August when he had, what looked like, a small canker sore under his tongue. We saw his first ENT in September, by then, the tumor had grown to about an inch in size. It had become very painful for him to eat anything but very soft food. The ENT did a biopsy which came back as SCC. By October 27th, the day he had his first surgery, it was 3 inches wide. The testing came back from that surgery and several of his lymph nodes came back "icky" so the ENT did a selective bi-lateral neck dissection exactly one week later. He was declared cancer free 2 weeks later. He had no chemo or radiation after these surgeries. In December, he said he felt as if everything was starting all back over complaining of headaches and pain in his mouth. His PCD sent him to an oncologist who sent him for a ct scan. It came back normal. He saw the ENT who did the surgery on January 10th and we told him that hubby was in a great deal of pain. He checked everything and said he was "good to go". On January 23rd, he had a tumor, in the same spot as the one before, under his tongue. We sought out another ENT. By the time we got into his appointment the tumor had gotten so big it was preventing him to be able to eat again.

A little history real quick before I continue. My husband was a VERY heavy drinker for 20+ years. He is 43 years old and up until the first surgery had never had to spend one night in the hospital. He rarely got sick. I used to tease him about his insides being pickled. Anyway, the past couple of years, before he quit drinking he would complain about the sun causing him to have headaches. He would stumble every now and then and his memory became pretty bad. He also said that his eyes would "jump" if he bent over for any amount of time. We all, including his dr, chalked it up to his drinking.

Back to the present. His new ENT did another biopsy and set up an appointment with the same oncologist we saw in December. After telling the oncologist his symptoms, and the dr himself seeing hubby's gait was unsteady at times, ordered another head ct this time including the brain and a petscan. Our fear was confirmed. Only this time it was much worse. His cancer was not only back in his mouth, he has a second tumor at the back of his mouth and they found a half dollar sized mass in his brain. It is in his brains' ventricle system meaning, they cannot biopsy it nor can they operate. The neurologist says it has the charateristics of being a malignant tumor. It does have some bleeding in it as well.

He has since had a port put in and a peg feeding tube. He has also started radiation and chemo. He has lost a total of 72 pounds since this all started. Some of that is from him not drinking alcohol anymore (YAY!!). He drinks Ensure, takes vitamins, and can still eat orally if the food is soft. He has used his feeding tube but his drs have said that as long as he can eat orally then he should continue to do so. He has a lump under the scar from the neck dissection, and some other swelling around his jawline. His oncologist says that his hope is that as quick as it was spreading that it will shrink just as quick.

After 2 more chemo treatments and 31 more radiation treatments, and the hopes that these treatments work, they are planning on doing surgical radiation on the mass in his brain.

Scared doesn't even begin to cover how I feel.

Thanks for letting me vent.

 

 

 

stevenpepe

Thank you for sharing your

Thank you for sharing your story. I am curious as to why his docs declared him cancer free so soon, without any chemo or rads. Especially with such a large tumor.

KlammsBride19

stevenpepe said:

Thank you for sharing your

Thank you for sharing your story. I am curious as to why his docs declared him cancer free so soon, without any chemo or rads. Especially with such a large tumor.

We were curious as well,

We were curious as well, along with everyone else in our circle of friends and family. That is why we went to a different ENT. The first one treated hubby as if he was just seeking pain meds. I even asked at the consult after his surgeries if he would need any kind of treatments. He said no his margins were all good and there was no need for any kind of treatment. When hubby told him in January that he was in so much pain he couldn't eat he replied with taking ibuprofen or tylenlol would help. Despite the fact that he was still losing weight and his headaches were getting worse.

donfoo

wow!

That is one hell of a lot to have to deal with. Try to deal with each issue as you must, there seems to be far too much to wrap around in one go. Get second opinions, get his case in front of cancer boards, and get a sense of what the best way forward is. If you can't trust your doctors, get new ones.  Good luck.

SuzJ

Sorry

Sorry that it came back that bad, but so glad you saw someone new. I agree about the boards. That's one of the things I really like at Massey - they all ENT/Med/Rad/Dental everything else - sit down and have a meeting on every patient.

I wish you much luck!