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

We are cursed.

I just got a call from the doctor's office. The PET scanner has broken down and they are flying in a part and a technician from Houston (I think) to repair it. They have rescheduled Jim's scan for NEXT Monday.

This is just too long to endure the suspense, stress, anxiety, etc., etc. I have a call in to the doctor, to ask why they can't go ahead and remove the growth that we already know about.

Thanks for listening.......

Barb

Update--We got the results of the PET scan. They say the cancer had spread to both sides of the neck and surgery is not an option, because of the extensive surgery he has already had and the amount of radiation damage. Not to mention that overstressed extensively patched carotid artery.

The good news, however, is that it didn't show cancer in any other part of his body. Of course, they were quick to remind us that that doesn't mean there can't be some microscopic traces that don't show on the scan. Grrrrr.....
Didn't really need to hear that at this point.

The plan now is to do chemotherapy. We see the specialist this Friday afternoon to get that arranged.

Barb

[quote] 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.[/quote]I'm sorry, but this really pisses me off. What kind of a so-called "Doctor" thinks he can eliminate a cancer diagnosis (ESPECIALLY WITH A CANCER PATIENT) with only a visual inspection? There should be some consequences for this kind of stuff, which happens all too often. Physicians like this need to have their medical licenses revoked, at a minimum.

As cancer patients, we need to remain vigilant and proactive in managing our own ongoing care.

Barb, my very heartfelt best wishes and prayers go out to you and Jim as you prepare for this.

Riley

Hi Barb,
Are you being treated at a CCC Center? If not, I would go for second opinion on the No surgery. They did do surgery on my irradiated skin with no problems, but then I did not have the caratoid artery problem.

Have they told you what chemo he will get and what they expect the outcome of the treatment to be?

I am really sorry this turned out this way. I was hoping a simple surgery was going to be the end of it. Riley is right. That dermatologist had no right to say that.

Take care,
Eileen

Hi, Barb and Jim, You all have been through enough stuff already, so no one needs to tell you what is ahead in terms of fighting this. Just know that any of us who can, will listen, try to help, send prayers and hugs, whatever you need. Amy in the Oz

Is the hairline lump cancerous?

I wish I had advice....I don't, except to keep your faith and allow your friends....those close by and those of us on the forum...to walk beside you during this next challenge.

Thanks for your support. We see the oncologist tomorrow to get his advice on treatment. Surgery on the irradiated area really isn't an option. The neck dissection, after the incision reopened, took ages to heal, and that was only after they grafted flaps from the healthy pectoral muscles, and a skin graft from his leg over that. I'm just sick, thinking I should have pushed for treatment sooner. The woulda-coulda-shoulda's are just tearing me apart. All we can do now is focus on dealing with the situation that we have.

Barb

Dear Barb, any of us who have lived past the ripe old age of 30 have "woulda-coulda-shouda"s". I hope you can file yours under " Oh, well, I could have done that different" or Better yet - you can Forget them. Every day going forward that you and Bill spend together is a gift. Every good morning and good night kiss is a gift. How you handle the challanges in between will be the greatest test of your strenght. Wishing you best luck. Amy in the Oz.

One day at a time is all any of us can handle...and that means that we can NOT handle today AND yesterday, and certainly not tomorrow. Live in the moment. Maybe IF you had done something differently, it would have been worse in some way. Don't beat yourself up. You don't know. All you can do is to live the moment that you are in.

(I sound like I have it all figured out....don't be fooled for a minute...but I DO try to think in more positive ways.)

Posts like these hammer home to me the fragile peace that patients must feel after treatment is finished.Here in the UK 5 years post treatment is considered a cure!!!I feel for you both so much words cannot describe it,and i hope you both find the strength to enter the lions den once again.
God Bless you
liz in the uk

Thanks, everyone. Your kind words are such a great comfort.

Liz, you are so right about our "fragile peace." It is so ironic, the ent doctor has always been quick to suspect that any new development was the cancer returning. With this growth, he was just sure it wasn't cancerous. Maybe that should have been a warning??!!

We see the oncologist in four hours and forty-five minutes (but who's counting?!). I'm so stressed I don't even know how to cope. I spent a sleepless night and and now I only want to stomp my feet and sob and howl. And I need to stay as positive as I can to help Jim.

Again, thanks for listening. As you know only too well, life is just too hard to bear sometimes.

Barb

Barb
I to hope you work your way threw this. My wife had breast cancer before I got mine it is just as bad on the care giver, as the the one with the cancer. I also went to Mayo, 2005 May.
I have no advise that would be meaningfull, just would like you to know, your not alone in this battle and I hope the best for you both.

Further update.......

We met with the oncologist and we're impressed with his knowledge and compassion (a rare combination, sometimes!). The verdict is that we are looking at control of the cancer, not a cure. I disgraced myself by nearly passing out in his office when I heard that. I broke out in a drenching cold sweat - the doctor handed me a box of Kleenex, and then I had to ask for a glass of water. Sheesh. At least I pulled myself together before they had to fetch the smelling salts.

As of now, the plan is for low-dose chemo (taxol) weekly for as long as it works. Jim has had two sessions already, with the third tomorrow, and has had practically no ill effects.

So, we keep on keeping on. Jim is confident of beating this. And after all, he has survived a couple of impossible things already. I am in awe of his strength and courage. As for myself, just call me Cleopatra, Queen of Denial. I'm living in the moment - and taking Zoloft! - and that's working, at least for now.

I'm lucky to have the best employer and coworkers in the world. They have been totally supportive when I need to take time off, and the times when I'm barely functioning. I don't know how I could manage without their support.

Thanks for listening,
Barb

Barb, if Cleo works for you, so be it. My choice for the longest time was Scarlett O'Hara's attitude "I'll just think about that tomorrow" [course my heritage is southern Mississippi.] We'll keep listening-you keep talking. Amy in the Ozarks

Living in the moment is good, Barb - and hang on to all the bright spots or whatever help that comes along - Zoloft, helpful co-workers and definitely your husband's confidence in beating this thing! I'm also a fan of Scarlett's "I'll just think about that tomorrow" but I have to watch it because for me, it tends to turn into "Never do today what can be put off till tomorrow". Anyway, don't put off taking care of yourself, too and let us know what's happening.

Barb,
I'm so sorry to hear of Jim's new fight. Please know that there is an old-timer praying for you both.
Mandi

Barb and Jim, I am hoping things are going well with the chemo.....good thoughts and good vibes coming your way!!! Carol

Anne-Marie I've become a member of the "never do today" group- it allows me to write myself more "to do" notes in the dust on the tabletops Amy in the Oz

Hi Barb, Glad to hear that you feel comfortable with the oncologist, I think that's an important aspect of this. Nothing wrong with being Cleopartra - other than the eye liner thing. You are finding coping mechanisms that work for you and that's entirely appropriate.

I'd say you handled yourself very well during that meeting with the doctor, it's a lot of information to take in. Let us know how you are doing and I'm hoping the chemo continues to go well for Jim.

Regards JoAnne

Thanks, everyone. I'll remember, and adopt, Scarlett's philosophy. Isn't the AA slogan "One Day at a Time"? That works, too.

Jim had his third chemo treatment yesterday. It went well, except that he got really tired. The nurse said that was probably caused by the Benadryl they give him to avoid any alergic reaction to the Taxol, which is derived from yew trees. I guess she was right, because about three hours after the treatment he started feeling better. So far, no nausea or other ill effects (knock on wood!).

We see the oncologist again next Wednesday. Here's hoping.....

Barb