We have just received some alarming news about my husband, Jim, a six-year scc bot survivor. He has been through so much already, this is just too much to bear.

A little background - In August 1999 he was diagnosed as stage T3N2cM0. He was a nonsmoker, and like so many others had practically no symptoms, until he noticed an enlarged lymph node. He underwent the RADPLAT treatment at Mayo Clinic - intra-arterial chemotherapy with cocurrent radiation, follwed by a neck dissection. Things seemed to be going along pretty well, considering all the misery that is a natural part of the treatment. Then, about three weeks after the surgery, his face swelled enoromously. His eyes were nearly swollen shut, and his lips were so swollen he resembled a duck. We went back to Mayo, and they really had nothing to offer except waiting for it to go down. We also consulted two ent's locally (Des Moines, Iowa) who said the same thing. About four weeks after that, he fell at home and the entire incision reopened. Our local ent tried closing the incision and giving him hyperbaric oxygen treatments to help it heal, but nothing helped and February 4, 2000, the left carotid blew. He was at home watching football at the time (Sunday afternoon). Luckily, he remained conscious and was able to keep pressure on the wound and I got him to the hospital before he bled out. However, due to the loss of blood and emergency room efforts to stop the bleeding, he suffered a stroke affecting his right side. They did a pec flap to cover the neck wound, with little hope that it would "take." Interestingly, within 24 hours of the surgery his swelling was gone. Twelve days later, the doctor told us that the left carotid was at risk and they would need to do another pec flap at once to protect it. He said it was far too soon to do another surgery, but there were not any good options. Amazingly, he came through that surgery just fine and we began a long waiting period to see if anything would heal. Finally, it did. He spent a month in the hospital and another month in a skilled care facility. He is able to walk with a cane and has some minor memory problems - and a trach and a feeding tube. With all that, he is still glad to be alive and enjoying some quality of life.

Whew. Sorry, that turned out to be a book. And a potboiler, at that.

Anyway, the latest disaster. He had a bump on the back of his neck, right at the hairline. He had asked his dermatologist about it, and the doctor said it was a sebaceous cyst and there was really no need to remove it. About 3-4 months later he went to the ent doctor for a regular checkup. The doctor noticed the lump and said that it didn't look at all likely as possible recurrence, but he would take a needle biopsy just be sure. He did, and the report came back that it was scc. Now we are waiting for approval from Blue Cross for a PET scan to be sure there is nothing worse. If it is localized, there will be surgery to remove the growth and the doctor is pretty optimistic about the outcome if that is the case.

I just had to share this with someone. I'm so anxious to have to test and get on with things, yet so afraid of what we may find out.

How do you bear the unbearable?

Hi Barb,

WOW. Sounds like a lot. Thanks for sharing.

Sorry to hear of the recurrance.

Although your doctor seems confident that the sugery will remove it, you might want to look into a photon knife for removal or something of that nature.

My thought and prayers are with you.

Robert Hamilton

Hello Barb,
So sorry to hear this. All I can say is stay positive, and think positive.
And try not to worry to much, You could be beating yourself up for nothing.
Jim is in many peoples prayers today!
PeteyB

Thanks so much for your good words and your prayers. We just learned that the PET scan is scheduled for next Tuesday, early afternoon. Then it will take 24 to 48 hours to get the results. It's going to be a long week.

We will continue to think positive, and to hope and pray. Jim has been so strong and brave through all this, and so good to me. I know many people going through this take out their frustratons on those nearest to them. I only wish there were more I could do for him.

Barb

Hi Barb,
I think it worse for the caregiver than the survivor. When I thought I had the second cancer, I pretty much knew what the biopsy was going to say. The question was, had it spread elsewhere and if so what could they do about it. Fortunately the Pet came back clean for the rest of the body. You spend a lot of sleepness nights worrying about the 'what ifs'. Until he has the CT and PET results, stressing out over what it might be is not good for the heart. Try to stay calm, I know not easy. Here's hoping it is just the one lump.

Take care,
Eileen

Barb, What a journey both of you have been on. Just want you to know that you and Jim are in my thoughts and prayers. Let us know what's going on. Take care. Linda

Wow, Barb! What a long saga you and your husband have had. I hope and pray that the bump on your husband's skin is an isolated, unrelated scc skin cancer. A wide excision should take care it, shouldn't it? I wouldn't think that oral cancer would spread to the skin. Maybe it is simply a coincidence and is un-related to his other cancer. That would be great. I will be anxious to hear about his CT scan.

Thanks for the encouragement. You guys are the greatest. The ent was amazed the cancer would show up again in that location. Maybe it actually could be unrelated. He was an avid (hatless)golfer most of his life, and he has had a couple basal cancers removed from his face in the past. Here's hoping. I'll let you know what we find out.

Barb

Barb- your member # 931- blew me away! You both are obviously a big part of the definition of survivor. Amy in the Ozarks.

Barb, I am so sorry to hear of your new troubles. Get them to give you a copy of the test the day you have it done. They will make you a copy on CD-Rom that you can put on your computer and look at. It is not as good as having the doctor read you the findings, but it will give you an idea of what they are talking about when they DO get back to you.

Andrea