Hi Everyone:

My name is Kim (kcdc) and my partenr is Dave (DaveC). For those of you who have seen my earlierr posts in other sections of the board, Dave and I have been on a perpetual "fact finding" mission since Dave received his diagnosis of squamous cell CA last week.

To recap, Dave is 47 with no other health problems, does not smoke or drink heavily so this was very out of the blue.

Best we can tell, his lesion is approx. 3cm near the tonsil fossa on the right side and does NOT involve his tongue or jaw bone. He as one enlarged node on the right side which some MD's say could have CA in it and some say may not.

Dave feels very well otherwise and woudl not have known anything was wrong at all except for the mouth ulcer he developed 3-4weeks ago.

So, in the last week we have been to Mass Eyes & Ear and Mass General which are the top head/neck locations in the Boston area.

We have met collectively with 3 head and neck surgeons, had his case reviewed by a heme onc M.D. and he has been presented ot the full tumor board and we have met with a radiation oncologist.

We are both nurses and understand the technical aspects of the 2 primary treatment options but we want to hear from REAL people who have chosen either one to help guide our choice which is a follows:

1. Surgery with the graft/flap procedure and modified radical neck dissection followed by radiation by 6 weeks after surgery.

2. No surgery but the M.D. Anderson protocol of booster chemo with radiation that changes into twocie daily radiation by the end of the course.

As you may have seen in my earlier postings, all of the doctors here have assured us that at Dave's stage of disease (II-III). both of these options are equal and qwould probably give him the same outcome. Brian has responded that he has not read comparable results or seen them published. Being skeptics, we are still leaning toward cutting the lesion out which then gives the pathologist and exact birds eye view of size and nodes involved, etc.

But, the radiation/heme onc guys are convincing too. I used to be an oncology nurse and have this lurking fear that the option of double doses of chemo and radiation could make the cure far worse than the original problem and really jeopardize Dave's otherwise good health more than surgery would.

This is where you all come in-has anyone lived either or even both of these options and can give us the REAL scoop about what it feels like to do either? How long did it take to bounce back? How long did most of you REALLY keep your PEG tubes? Could you function and eat?

How about extent of chemo/radiation side effects?

Dave is cleared to be off from now-January but I am afraid if he goes with the non-surgical option he may still be very sick by then.

Thanks in advance for the help-I am finding you are an infinite source of insight.

Kim

Hi Kim. Like you and Dave, last spring I was in a serious information gathering mode, and this forum was the best place for real life info.

Okay. My tumor was in the retro trigone area (behind where wisdom teeth would be). I opted for the surgery and graft, the modified neck dissection, followed by 7 weeks of daily radiation and weekly chemo. Although I emerged from the surgery with gigantic neck swelling, there was no pain and I had plenty of energy. Lateral massage reduced the swelling greatly and fast. After the radiation (I was fortunate in having the newer IMRT variety which may account for the outcome) and chemo I felt just fine and if I were working, could have gone right back. I would guess the fact that I was in great physical condition going in, with a positive mind set, had a bearing on my good outcome. I don't plan to have to do this again, but would choose the same plan if I had to.

To be perfectly honest, I will tell you that the chemo supressed my immunity to nothing and shortly after finishing the above-described treatments and feeling wonderful, I landed in the hospital for 8 days in isolation with a galloping infection. This, and not the earlier treatments, laid me out flat and I am still getting my energy back.

I still have the PEG only because I have just front teeth remaining which do not chew well at all and at this point I am particularly concerned about receiving balanced nutrition. As soon as my blood count is normal, I will switch to protein enriched drinks I make myself and lose the tube.

I hope this helps. I am sure you will get other detailed answers. Please let me know if you have any questions I can answer.

BTW, I was surprised and pleased to find that at least the doctors I had contact with appreciated the fact that I was well so informed. This is an improvement over the way things used to be.

Good luck to both of you!

Joanna

Your husband

Hi Brian:

As usual, your reply is real, informative, and so helpful. I have shared all of the information with Dace. He is on the surgical schedule at Mass Eye & Ear for 9/16 which was the soonest date we could get. We have held to spot during the research/second opinion process to make sure we had one for exactly the reasons you outline-we need to lead the waltz, not our cancerous friend.

One curious thing-in speaking with the radiation oncologist this week, I inquired about radiation to the nodes on the affected side BEFORE surgery which they said probably was necessary if the nodes were going to come out during surgery anyway. I just relaized from your post above that you progressed to surgery and had not initially had it to remove the primary. I assume then that you did not go through the flap & graft procedures.

So, I still have thsi overriding question about how we know that the radiation/chemo route will actually shrink the primary? Are most squamous cell lesions sensitive? It still feels safer in some respects to remove the lesion and nodes and do the blast of radiation to follow. Noone has mentioned the option of a course of chemo too if we go the surgical route but I will inquire.

Dave did have a chect film the other day and we did get the green light to ask for a spiral chest CT although the guys the other day at his stage the risk was low but never say never and if we want it they'll order it. So, I am pleased to report that the MGH/ Mass Eye & Ear Team and seems very human with the exception of the one surgeon who is a little shy on the bedside manner but by all accounts a superior technician which is okay as long as he isn't the point pain running our team.

How long was your actual course of radiation prior to the neck dissection? I am very concerned (and have seen way too many bad reactions) to think that Dave will actually be able to resume work in January if we choose the the chemo radiation option. If he then needed to progress to a subsequent surgery that would take an enourmous financial toll on us since we depend on two paychecks.

Dave is a big Harley fan too so maybe you have a lot more in common than you know.

Think you are right-make a decision and make peace with having made it...

Will keep you posted,

Kim

I had 6 and half weeks of radiation, 5 days a week with the weekends off. The last week I had double doses of radiation morning and afternoons. I would have to look through my records to tell you my total volume of exposure, but they had essentially reached the maximum dose my spinal column could take at this stage of things. I had no intra oral surgery. No flaps no graft. Although I might add this view, not for the weak of stomach

Hi Brian:

have received lots of additional correspondence from nurse friends and other survivors. We are pretty sure Dave is going to do the surgery with the lymph node dissection on 9/16 followed by radiation and hopefully not chemo too but we'll see. The info about the tissue sloughing does make sense but you are right-it's a bonus prize not for the faint of heart to swallow no pun intended.

Think Dave is going to e-mail you directly but once again,let me thank you on behalf of both of us for your expedient replies and amazing support. I am hooked on this board and see it as a safe place for us and lots of others.

Best,

Kim

Hi Kim,

Just another story to add to your information gathering.

My mother has stage IV tonsillar squamous cell that migrated to her soft palate. Also bilateral lymph node involvement. Because of the lymph node involvement, she was not able to have the IMRT.

She had twice daily radiation for 32 days - total dose 7680. Also had once weekly doses of cisplatin for 5 weeks, sixth week was carboplatin because of low blood counts.

My mother did not have a PEG tube and is still plugging along. Now, how long this will last is a mystery because I she is taking in very little calories and I feel this will be a detriment to her recovery - but this is something, as a daughter, that I have been unable to convey to her and have to let it ride it's course.

But she managed the above treatments quite well despite her 71 yrs. Still have a month to wait for follow-up CT to find out status. Although her lymph nodes have obviously shrunk, she most probably will have a neck dissection within 6 weeks.

I know it's difficult to feel 100% comfortable with the choices - I have always wondered why surgery on the tonsil was not even suggested for my mother, but there comes a point when you have to bite the bullet and hope for the best.

With you by his side, Dave surely will have a positive response to this. Have faith in yourselves as well as the doctors.

Best wishes,

Cynthia

Dear kcdc,

I was just rereading your post, and realized that I did not address one of your primary questions. And that is how will you know if the primary has shrunk. There will be a series of diagnostic CT

Hi Brian and all, thanks for the speedy info and testimonials - all of which have been great comfort to us even if not all are rosy ... not that we are looking for rosy just others' experiences (good, bad, or indifferent)with the different treatment modalities. Brian, Kim's question re sensitivity was as you surmised to do with treatment. As I type this there is one question that springs to mind ... how were you post-surgically following the neck dissection? This web-site never ceases to amaze me in terms of member involvement and the speed with which replies are posted. Hope I can be of service to others post-surgery - I know I'll have the time even if the enregy supply might be flagging.

Take care, Dave

There were two issues post surgically for me, one was physical the other emotional. The physical was the easiest one for me to deal with. To fully understand what follows, you need to know that in my lifetime I have had a few traits which, at this stage of my life, I am not particularly proud of. I have been egotistical, vain, and centered around my own achievements. While I have grown away from these traits as a result of my cancer experience, they nevertheless were who I was during treatment and recovery. So while I healed fairly rapidly physically after a modified radical neck dissection, when I looked at myself, and at the faces of those who looked at me, (with the exception of Ingrid), I became depressed. Acute weight loss, sunken eyes and cheeks from poor nutrition and chronic lack of sleep, skin the color of an old piece of uncooked chicken that has been left in the fridge too long, all contributed to the reflection someone who I didn