My 76 year old dad, in late/end stage COPD, lung cancer survivor since 1994, had oral cancer surgery on 8/12/04. He had problems coming off, ended up in a specialty hospital and has been doing well being weaned off the venitlator. In fact he's been off since last Sunday, though he has not been able to build up much time with the talking valve let alone having the traech capped off.

First bad news was yesterday. Finally got the path report. The surgeon (head of the department at Loyola University Medical Center in Maywood, IL), thought they had gotten the entire tumor and Dad wouldn't need any further treatment. Wrong. According to the path lab report, the tumor"of posterior oral cavity was infiltrating moderately differentiated squamous cell carcinoma measuring 2.6 cm in maximum dimension; surgical cut margins, negative for carcinoma. It also indicated that the margin base of tongue, posterior shows focal high grade dysplasia (cancer in situ), and last, but certainly not least, that 2 of the 32 lymph nodes that were removed "contain metastatic carcinoma with estranodal extension- salivary gland tissue with no specific pathologic changes.

Well, since I live in south Georgia, I faxed/e-mailed a letter to the surgeon asking 1)if I was correct in assuming that that meant he HAD gotten the entire tumor; 2) whether there was any way of determining whether and how long it would be before the carcinoma in situ became invasive, and 3) if I was correct in assuming that the lymph node involvement with the extranodal extension was the biggest problem, and the reason they were suggesting radiation, and then went on to ask questions about how much time radiation/cancer may buy and at what cost to his quality of life.

I haven't heard from the pulmonologist yet, but the pulmonologist told my mother those were all good questions that needed to be answered, but that the surgeon needed to answer them for the most part, but that the one thing HE could tell us was that NO, they did NOT get all of the original tumor - He also told mom, dad, and my brother that my dad has pneumonia in one lung, and that the reason they are planning on sending him home in two weeks is that they feel he will be well enough to not be medically in need of their services anymore, but too weak to go for radiation, but that medicare and his insurance won't pay for rehab hospital if he's going to have radiation therapy (not to mention that if he's having radiation therapy he probably won't have the strength to do rehab. He can barely do rehab now as it is... he managed to keep the talking valve on for an hour and a half one day, then an hour the next - now he's down to 10-15 minutes before the monitors start blaring because his 02 saturation has gone done so much ...

Not really sure that I have a question - just needed to "talk" to someone who would understand what is going on. I tend to be a pessamist/drama queen so I am anticipating that this is a precursor of what is yet to come and that while radiation may be his only hope of knocking out the disease ... for a while ... that it will take what little quality of life he has or may het build up to away, and I don't feel like he'd be able to recoup to even get back to this point again ... Sigh. Not anything I can do; not my decision, even. Just rambling and venting ... thanks for providing a forum in which I can do that ...

Hi Sallie -- I don't have much in the way of offering advice, unfortunately... But just wanted to let you know someone is listening attentitively...

Come share here anytime...

Sallie,

Your Dad will feed off of your strength. Don't worry about venting. I was very frustrated with the circumstances surrounding my brother's cancer and my inability to help (make it go away).

I'm praying for strength and lessening tears.

Hi Sallie
Some times all we can do is to listen, but when you pour it all out it a post it can also help you to see what the most important issues are and how to address them, we are here for you at this hard time.
Sunshine... love and hugs
Helen

Thanks to you all. I went down this path 6 years ago when my husband went into acute liver failure for the first time (he died a little over a year later from cirrhosis/liver cancer), and bulletin boards like this one were my lifeline.

Having a place to come to, to read and learn about what is happening, what is likely to happen, and to vent to people who are there, and have been there, done that, means so much. The tears happen from time to time, but not so much this time around. Could be I am such a pessimist from knowing how things went for my husband who was younger, stronger, and as "only" battling Hepatitis B and it's complications, not several things all at one time. Now I just hope and pray for the "best" outcome, whatever that may be, for my dad. Thanks for being here for me and for the support.

Hello Sallie,

Just wanted you to know someone out here knows what your going through. I pray something can be done to help your father. This is a bastard of a diaease!!!!

Best Wishes, Danny Boy

Thanks, Daniel. I have to admit, I don't think I'd ever even thought about oral cancer until I found out my dad had it, and now I'm apalled at how dreadful it can be.

My husband died of liver cancer from Hepatitis B, I'm an endometrial cancer survivor and just found out earlier this year that I have vaginal cancer in situ, so I understand the fear of recurrence that everyone here has, though I have been lucky in that all I have needed in both cases thus far is surgery. I'm thinking maybe I was happier BEFORE I started learning how to research so much on the internet and finding out stuff I didn't know before. Maybe ignorance WAS bliss ... <sigh> On the other hand - wow. What did people do when they were in these situationa and COULDN'T reach out to others before we had the internet?? Thanks again for the support. I try to be active on the gyn onc boards, and on my widow support board, and I used to be active for long time on the Hepatitis and liver support boards. Hopefully, someday I'll be able to give back something to the people on THIS board.

Hi Sallie,
there's a few of us here dealing with Hep C also so I am sure we will appreciate your help as well. Ignorance WAS bliss - unfortunately it's too late for that now. Welcome to the forum.

You have a lot on your mind, and being far away from your father and the medical is hard. It IS easy to get scared and carried away with information you find on the internet.

I think almost all of us on this chat board have found that until you learn more from the doctors, or,find out the results of the next test, etc. it is so easy to be driven crazy with wondering or fear.

I'll offer a couple of my thoughts in case it helps. Let your dad recover. It has not yet been 1 month since his surgery, his body has gone through a lot. His body needs time to heal and recover. I know everyone's experience is different, but at 41 years and in good health prior to cancer surgery, I had an 11 day hospital stay, a tracheome, could'nt speak for a while. I was totally wiped out for a long time after surgery. Your dad, at 76 and with other medical problems WILL take longer to recover//bounce back.
In another message I think you mentioned that he wasn't doing anything or interested in anything. Well, with recovery - difficulty breathing, eating, talking, walking, every movement can hurt or be such an effort. I remember being in the hospital bed, or being home and having family ask what they could do or get for me and I was so lethargic and out of it that I didn't care to watch TV or to read. try NOT to worry so much about the inactivity.

I find that it helps to think about what IS going right, or to focus on the progress made recently, rather than comparing things to life before the treatment.

Radiation and chemo can be tough - keep asking the doctors how they think your father will handle those with his other medical conditions. It sounds as though you have found a way to communicate with the medical team and I am sure that is a great benefit to your family.

Hang in there! You certainly have been through a lot.

Thanks so much, Michelle. We really are/were all worried about the lack of interest in anything, and just laying in the bed staring at the ceiling. I can certainly understand depression under his circumstances, but I also know that that kind of depression isn't good, either. Hearing from someone who has been there, done that, and a lot younger, in better general health say that lethargy and being out of it was part of the healing process really puts me more at ease.

I have been through things, true, but nothing at all compared to what my husband and dad are going through, or what other cancer survivors like ya'll have been through. I only had surgery and bounced back after both in a very short period. The only real remnants I have are the constant fear of recurrance and worry that the next time I WILL be needing radiation/chemo, which ain't nothing compared to the real thing! Thanks for the information and encouragement.