It's Back!!! Or should I say it probably never left...I have been going through tests for the last two weeks due to a swollen stomach on my right side. After the sonograms, ct scans, mri's and biopsies...the word is in, cancer has spread to my liver.
There are 6 lesions with the largest being 3 inches...we have seen 3 oncologists and all agree that it is inoperable due to the sizes, it would not leave enough liver to regenerate.
Our best hope is a clinical trial that CTRC is conducting right now on head & neck cancers and it's spread. I will be getting the standard Chemo drugs plus the trial drug. Should start this week. They hope for remission with this new drug.
What do I vent about??? In my mind if the doctors all know that this cancer throws off tumors WHY did no one ever say - let's do a ct scan of the chest, abdomen, and pelvis and see if this has spread. Maybe they would have caught this sooner. I know that I am not in the medical field as some of you are and there may be a good reasonable answer..but I never thought that a SCC of the tonsil would end in the liver (and probably other places, we are still waiting for the bone scan)
If it had not been for Brian mentioning the digestive track on a message a couple of weeks ago I might have totally blown off this swelling for a while longer. And it's advanced enough they wanted to start chemo yesterday!!
Vent is over now - thanks for listening and all I can say is: Brian...this board is the best service to cancer patients and survivors that I have found.
Take care all,
Dinah

Dinah, so sorry to hear about the reccurence. Best of luck.
I wanted to say that when my head/neck cancer was discovered, I , knowing nothing about cancer, was a little suprised and taken aback that when the Dr's find cancer in one place, they do not immediately search for it everywhere in the body. Because I had a radiologist buddy with me at the first hospital where they did my CT scan and biopsy, he sort of took control and had them ( even though not his hospital ) do a bone scan and some other areas. So far at M.D. Anderson they did order a chest and abdomen scan. But, apparently it is not prudent ( or cost effective ) from the medical standpoint to search one's body for more cancer once cancer has been located. My buddy kept saying I should have a PET scan which can detect tumors in the body by a build up of glucose...but no doctors have ordered it. They seem to want to wait until we discover a problem elsewhere in our body, and, I am told, that it is too difficult to locate stuff all over the body.
Who knows??

Danny G.

Danny,

A friend at CTRC (works in media there) told me that if I would have gone there for treatment at the beginning they would have done a PET scan...as you said who knows? maybe she's right maybe not.
I guess it's my biggest "what if?" and I need not go crazy over "spilled milk", cause my "glass is half full".
How's that for mixin' up the metaphors?
Take care,
Dinah

My husband asked his Surgeon/ENT about PET Scans and he said they are still too experimental. He said they have far too many false positives, which lead to more invasive procedures and find out that it was nothing. In Dan's case he said CT scans are fine for now. He gets one in November. He had a Head (Brain? Scan last year) and had a false positve. It came back as either a tumor or annuerysm and after two more tests it came back as a glitch. Scared the *** out of us though. Dans Onco and Surgeon didn't agree on the Brain scan, his surgeon said it was too soon. Too much healing going on.
Sorry about the rambling. In the end you just have to trust that your Doctor is doing the right thing for your case because we would drive ourselves crazy with doubt. We trust this surgeon and hope he is doing the right thing for Dan at the moment.

I am very sorry to hear this latest development. As you are no doubt aware, liver cancer is a serious diagnosis, and getting into a clinical trial was the smartest thing that your doctor could do for you since success with the conventional treatments is not high enough to instill comfort and confidence in cure. Remember that in order for a new treatment or drug to qualify to be used in a clinical trial it has to be proven to be AT LEAST as good as established treatments. So you are not taking any risks by getting into a program. Regarding the metastasis of oral and other cancers; there are two significant issues, 1. What is practical and reasonable to do within the scope of expected risks (mets to the aero digestive tract associated with oral

Dinah,

I was so sorry to hear that they have found more cancer. I can only imagine your fear and probably being down right "pissed off". I can only hope that the course you take will be a successful one. And we are hear to support you!

As far as doing the proper "diagnostic" testing - after two loved ones with cancer, I know for a fact that doctors treat cancer "symptomatically". If you are not showing symptoms, they won't go looking. Case in point - when my mother was diagnosed with SCC, they didn't order a lung CT (including liver and adrenals). Having been through this before, I said I wanted one done before any decisions about treatment were made. Lo and behold - they found a lung lesion. A bronchoscopy was unable to get any tissue, so 4 months out, we are still debating about the lung.

Regarding PET scans - yes, they report many false positives. But as Brian said, when you are dealing with someone with a known cancer, the uptake of glucose is a sign. PET scans should be looked at as another piece of the puzzle - to be used for whatever information they can provide. As far as the expense - I won't even go there. My mother's internist has recommended that she have a PET scan for the lung lesion - duh, why wasn't it mentioned before? So, that is our next course of action. Check-up with medical oncologist on 10/22 and this will be the topic of conversation. And we are not asking, we are telling him this is what we want done.

But this doesn't help you. Please know you will be in our thoughts, wishing you only the best.

Cynthia

Dinah:

I just checked the board and read your meesage above. I am incredibly stunned by your news and wish I could give you a hug. Your courage,wisdom, and humor have been models for me over the last few months-I am confident they will continue to be your biggest allies.

Please know that you will be in my thoughts every day as you face this new challenge. I know the collective healing energy of this board will help carry you through the hard days to come.

I look forward to your continued posts-when you empower yourself you empower all of us too.

Holding you close today.
Kim