Okay, Mike found out today that during his surgery, the doctor was not able to get all of the cancer and his only option at this point in Chemo to slow down the spreading.

Here's the thing,.......Last year, his radiation oncologist left and was replaced by a new, young guy. The old radiation oncologist was supposed to schedule him for a PET scan (I read this last week in some of Mike's reports from last year)...this didn't happen becuase he left and I guess Mike got lost in the shuffle during the change.

A few/four months ago, Mike got what appeared to be an ulcer on the back of his throat. He already had a set appt with the new radiation oncologist the following week so we waited until then. Mike went to this appt by himself. the new guy said, it's just an ulcer. When Mike told me this, I looked up the new guy on the computer only to find out that he was fresh out of school and this was like his first real job so I was not comfortable with his diagnosis not to mention that I just had a bad feeling about the "Ulcer" so I made an appt with his ENT. Two weeks later, we go to see her and she said the same thing, it gives the appearance of a benign ulcer but because of his hitory, she wanted to watch it closely. I was okay with that because I trust her. So three weeks later, we go back and she said it had not changed, told him to keep gargling with salt water and stay away from any acidic foods and wanted to see im again in two weeks, then BOOM, on the next appt, it's a tumor and he needs a PET Scan. Pet scan shows a small amount of uptake in the throat area so now we need a biopsy. A few weeks later, biopsy is done on a wednesday and she has them rush the results. Initial results back on FRiday and they are negative, YAY.....or not. The full report comes back the following WEdnesday (day before THanksgiving and they are positive. She calls us on Friday (so as not to ruin our Thanksgiving) and tells us the bad news. Invasive, poorly differentiated non-keratinizing SCC, HPV+ on tonsil and base of tongue. She says that from what she could see when she was in there, he was a beautiful candidate for surgery. The surgery was scheduled for two weeks later (this is when the plastic surgeon was available). HE goes in on December 13 for feeding tube, surgery to split jaw and remove tumor and plastic surgery on December 14. 13 hours of surgery, muscle removed from one leg, skin from the other. The ENT comes out during the surgery to tell me that sent a bunch of frozen sections to the pathologist and she couldn't get clear margins. It had invaded deep into the tongue and has started on the larynx. She said she could remove the larynx to make it easier for him to swallow but that would not get rid of the cancer so I told her not to do it. SHe also saif that even though his Cancer is HPV+, it acts more like the type that is not caused by HPV. She said it's a very badly behaved cancer and very invasive. She was visibly upset.. She said that if she had known how bad it was ahead of time, she would never have done that surgery. She says taht his only option is Chemo, to slow it down.

I feel like Mike "fell through the cracks" with the change of doctors in the radiation department and I feel like his ulcer was under estimated and I am feeling very guilty about that because I knew in my heart of hearts that it was something bad and I feel like I should have pushed harder. Now we are talking about getting a second opinion at Johns Hopkins. My fear is that so much has already been done, 39 radiation treatments last year with chemo and a neck disection and now this surgery.....what else can anyone do? I would imagine that there is so much scar tissue....how many surgeries/treatments can someone have? Did we drop the ball right along with the doctors?

Janice, I cant begin to image what is going thru. Im sure this is eating you up inside. Please do yourself a huge favor and stop to think this thru logically without taking the blame. Not that you werent being logical, but take a step back for a minute. You didnt do anything to cause this situation, you have only helped your husband. I am so glad that you found OCF to lean on and for information and advice. Putting blame on what went wrong wont change this.

I am so sorry to see what your family is going thru. You did everything possible to prepare for the surgery. From the messages we sent back and forth I know you were ready for everything except such awful news. I dont think anyone could prepare for something like that. Im so glad that you had the difficult talks with your husband prior to this operation. You knew upfront when to say no to the doc to take any more out.

Im sure Charm will chime in soon. He has undergone radiation twice. Sure things arent great for him, but he is here and strives to make the best of his situation. He will be able to explain what his circumstances were that led to doing rads twice. Im hoping that Brian or David chime in here too about the HPV+ issue. They are the experts on that subject.

I think Ive had 7 surgeries related to cancer since April 2008. There has been so many different treatments and things Ive gone thru its hard to keep track. While its not easy, luckily I was strong enough to get thru everything. I hate to compare since we are all different and respond to every procedure/medication in our own way. Your husband is relatively young. From his profession I would assume he is in decent shape and strong. This will help with whatever path is chosen. In my uneducated opinion it couldnt hurt to go to Johns Hopkins for another opinion. One person from my area drove down there when they had a recurrence. Its worth a shot, I dont know if it would change anything but at least its a chance.

I wish there was something I could do or say to change Mike's diagnosis. How I hate cancer!!!! What it does to good people is terrible. Please feel free to PM me anytime. I will keep you, Mike and your family in my prayers. (((HUGS)))

Thank you Christine, You're like a rock and I appreciate all of the advice and inspiration that you pass my way. I'm just in the angry stage right now I suppose and Mike is as well. THese are not easy words to hear. He's so young!!!! Mike is in great shape and has the will of a bull so if anyone could get through this, it would be Mike. I just want some hope and am going to look for it at Hopkins. I have to feel like we've done everything we can and hope that Mike doesn't end up being one of those people that this cancer takes quickly. We're not ready.

Janice

Christine and I understand from bitter experience the Anger, Guilt, and Fear that washes over a patient and caregiver when this cancer comes back. Anger that it came back. Guilt imagining something you did caused it. Fear that this time the damn cancer will win. While these feelings are universal,there is no rational basis for you feeling guilty about Mike's cancer coming back. You can doublecheck with your ENT surgeon, but when I got my PETscan in Oct 2008 with an "all clear", my ENT felt a lump in Nov 2008. PETscans often miss tumors at the base of the tongue when they recur so even if Mike had one immediately, it's no guarantee of a different result. Plus I ended up not getting surgery for that Nov 2008 lump until March 2009 which was four months later. By the time this cancer is noticeable when it returns at the base of the tongue, the damage has already been done.
A false PETscan result like I got could have meant Mike would have gone far longer before getting the real diagnostic test:
the biopsy.

More importantly, don't give up on having additional radiation for Mike. Since you are going to John Hopkins, ask specifically about using CyberKnife for radiation. If they tell you it can't be done, ask them to double check with Dr. K. William Harter of Georgetown University Lombardi Cancer Center's radiation department. I know for a fact that while the run of the mill radiologists simply accept the "maximum" radiation guidelines as Gospel truth, experts like Dr. Harter know that while difficult, radiation can be done to the same spot already irradiated.
The Cyberknife has such a range of motion and focus that an expert can program it to deliver the radiation to the same area and tumor that has been "maximum radiated" but use somewhat different trajectories thru the head and neck than the ones used with the IMRT machine. The RO needs access to the plotting and graphs used in the IMRT to make sure he can avoid the same entry tangents as much as possible. The target remains the same.
Bear in mind that the situation has to be as dire as Mike's to be worth the extra risk. When my cancer came back, I did not want the surgery so I went to Dr. Harter again and asked for radiation. He said it would be better to get the surgery and gave me the same advice you see on the boards here about "maximum radiation" and guidelines etc. It was only when after the surgery, my margins were not great and the pathology report showed perineural involvement that Dr Harter reconsidered on the basis of my ENT's reguest. He stressed that he could not use IMRT but only CyberKnife. He warned me that the extra radiation would probably mean I'd never swallow plus have lots of side effects but it was all worth the damage to me if it stopped this cancer from coming back yet again.
It's just a matter of physics and calculations of the path of the radiation beams. It is outside the guidelines, but then both Mike and my cancer acted outside the "guidelines". They do not usually use CyberKnife for head and neck cancers but prostate and brain tumors so don't expect them to volunteer it. You will have to bring it up.

I also had a second round of chemotherapy but that appeared to be within 'guidelines".

So sorry to hear this.
Charm

Hi Charm,
Mike and I went to Johns Hopkins and they basically agreed with everything Foxchase has done and said but did mention the possibility of more radiation as did Foxchase. We have an appt with Mike's radiation oncologist next week so we will see if they think he is a candidate. I hear that in a fair amount of cases it works and in a fair amount of cases, it does not and can cause alot of complications that could actually shorten his life. I guess we'll have to weigh the options and see what chances we are willing to take. He had radiation failure the first time around.....why would it work now???? That's the biggest question I have.

Thanks for all of the great information!
Janice

Janice,
I presume that Mike had IMRT? that would make a difference on whether they will do more radiation. It sounds to me like the original CCC did all of the right stuff, it's just that poorly differentiated tumors are much more difficult to treat - but not impossible, so don't give up hope. Charm and Christine are living proof of that.

Yes Gary, Mike did have IMRT. I just got home from taking him back to the hospital. He has a fever of 100.1 and was quite lethargic. He has pneumonia and will most likely be there for a few days.

Pneumonia is pretty common in the immediate post Tx., especially with all the people running around sick this time of year. It's really easy to get if you aspirate down the wrong pipe as well. They must have him on IV antibiotics. You were wise to take him to the hospital.

Patients with IMRT can usually be irradiated a second time.

Janice

Hard choices. I'm biased in favor of a second round of radiation because it appears to have worked for me. I asked my RO the exact same question: Why would radiation work now when it failed me before? His answer was that some cancer cells are radiation resistant and they are the ones that came back. However the focus of the CyberKnife would let him pump more rads in at a time at a much higher intensity which should overwhelm even these cells. I averaged 2 GYs each of my 40 IMRTs, while the tumor that came back got a whopping 5 GYs each and every one of my 5 Cyberknife TXs
Also I don't know what you are hearing about complications shortening his life so I can't address them specifically. I'd be very surprised if whatever they were, they shortened Mike's life more than not getting radiation and letting this cancer continue to grow. Radiation complications are "funny" in that the longer you live, the more likely you will get them.
When you do your final risk analysis, if there is a "fair" chance that the radiation would "work", IMO that's a chance worth taking.
Hope Mike recovers from the pneumonia soon
Charm

Janice Im sorry to hear about Mike's pneumonia. I hope he feels better soon.

Dont give up hope. I really didnt think I could get thru my 3rd round, but Im still here. I had never seen anyone here who went thru it 3 times before. Brian Hill assured me that he has seen several 3 timers and it can be done. That helped me tremendously to get the fighting attitude I needed to get thru it.

I will keep you both in my prayers.