My 49 yr. old sister had surgery May 7 at MDA/Houston for cancer on her upper palate. She finished radiation on Aug. 9 and it still quite ill from it all. Most recently she acquired an infection which has affected her mouth, eyes and ears. Treatment has been antibiotics, steroids, eyedrops and eye washes, plugs in her tear ducts and I can't remember what else. The results of her recent ct scan show "something" which has scared us to pieces thinking that the cancer has returned. From what I've read here today it could possibly be scar tissue or swelling caused from the radiation. She has another scan scheduled for next week. What does a second scan mean?? Is this followed up with a biopsy?? What are the chances it is only radiation-damage that is showing on the scan?? Guess what I am asking is, is it more likely it is cancer showing up? We are all very frightened. Thank you. Tammy W.

Either could be the right answer. Infections after treatment are common, your immune system is beat to death by all of the treatments and every opportunistic bug, fungus, or virus wants a piece of you...and you have little left to fight them off. For me it was one thing after another for the better part of 6 months. I was always on antibiotics for something, then on antifungals for the blooms of Candida that the antibiotics let happen. I got every virus that went around, in spades compared to regular people that got it.

CT scans while they show changes in tissue mass, cannot diagnose cancer; only a biopsy can give you a definitive answer. CT scans will also show changes resulting from the treatments, including in my case nodes which were positive in the CT but after surgical removal proved to be cancer free...zillions of rads of radiation will kill the cancer, but to a CT scan, it can't tell if the cancer is alive or dead, just that the node is not normal. The tissues after treatment are certainly not normal, there is lots of swelling and other changes that the CT can not interpret.

Try not to get too upset about all this until there is a finite answer at hand. From my own experience and that of many that I talk to, that first year after treatment is full of surprises, most of them not cancer. This doesn

Tammy,

I'm with Brian - don't get scared until you have a reason to be scared. One of the side effects of cancer is paranoia - always thinking an ache or pain or patch of something is the cancer returning. This is a common and normal reaction and should lessen as time of being cancer-free continues.

Be thankful your sister has a doctor who is following up on an inconclusive scan. Some would just dismiss it. We have to remember that the diagnostic tools used are not 100% and sometimes it is difficult to know definitively what they are seeing. They are not sure whether they are seeing cancer cells or effects of radiation in my mother's lymph nodes - but they want to do a neck dissection to be sure.

Try to be positive - why not be the voice of reason in your family and set the tone for your other family members. You will be helping yourself and your sister.

Best wishes,
Cynthia

Cynthia raises and excellent point about how previously calm rational people can become paranoid to the point of feeling like a psychiatric diagnosis is in order! I think we should include all caregivers and partners in this statement as well. Living with the "worry factor" is constant and at times overwhelming.

On a practical note, I would suggest someone go with your sister when the results are reviewed and ask the MD's to SHOW on the comparative scans what they are seeing, and offer an explanation. I would cross-check a surgeon's explanation against a radiation oncologist's and vice versa. If there is any doubt or big debate, ask if her case can be presented at tumor board and have her(and a trusted someone else) attend to hear the debate. If this is not allowed, ask for a representative from each speciality to meet with you.

Best of Luck,

Kim

Brian,
Your post here was very helpful to me. The docs don't feel any nodes in the neck but the CT scan did show one little bit of something. They have scheduled me for an ultrasound, and, if needed later, a biopsy will be done. The Dr. did not explain to me all that well what is happening, but your explanation in the post made me feel better as you suggest that there is a strong likelihood that the stuff shown on the CT scan is dead. Thanks.

Danny

Glad to be of help when I can. It is a pretty simple procedure for them to do a fine needle biopsy of the node in question. A few needle insertions in a variety of areas in the node should give them representative samples of cells that can then be looked at by a pathologist. If something is still there, you will know in 3 days. My surgeon decided not to take any chances, and just went in and did the modified radical neck dissection and took them all. I had multiple positive nodes before radiation bilaterally. They still showed up on the post radiation CT scans. The pathology report on all the removed nodes was negative, but I don't regret his being extra sure by putting me through the surgery. This example is a good demonstration that scans cannot detect cancer. Surgery was the easiest part of the treatment overall, a cakewalk compared to the 8 months after radiation.

Hi Danny:

Here is the update about you I've been looking for...good luck with the ultrasound and biopsy if it comes to that.

I agree with Brian-Dave thought the neck dissection was as okay as surgery can be and was out of the hospital within a week. If you end I needing to consider this procedure, we can share every detail!

The doctors at Mass Eye & Ear here (also a major head & neck center) also let us know clearly that scans done post-radiation can be tricky to interpret and surgery more complex to perform because radiation changes the landscape of the oral cavity and neck tissues so much. This information continues to validate the need for expert eyes to be reviewing cases. Luckily, you are also at a major U.S. H&N center so that is good news!

I'm wondering if your case can be presented at tumor board rounds for review and update so many eyes can weigh in with an opinion about the latest CT? I agree with Brian about the biopsy...I would advise Dave (and hound his docs) to do the same if there is any question).

Keep us posted,

Kim

Brian
My husband John completed a similar course of treatment. His surgeon removed the nodes after radiation and chemo. The path was negative. He does not regret the decision to remove the nodes. Unfortunately, the surgeon was not able to remove the nodes without taking the jugler vein and trapesious muscle. John is having a very difficult recovery from this surgery. His throat is still swollen (surgery was two weeks ago). Any suggestions as to time involved in healing??
Meredith

While my surgery was significantly less involved than your husbands, it still took me the better part of a month to get past the discomfort, and it was another two months before the lymphedema swelling started to go down. Given the extra structures that were removed in your husbands case, I believe patience is going to be the operative word here.

Brian
Thanks for the response. John really looks for your input.
meredith