Scan Results - your thoughts-good, bad or indifferent

[gail p-m]

Here goes and I apologize for the length of this posting. My father has been seeing his oncologist since June. We are at the point where we need to seek a second opinion. First off, there have been a number of things that have made me unhappy with the oncologist. Part way through his rounds of chemo (my Dad has had 3 rounds), I realized that the oncologist did not have all of his reports such as the CT of the abdomen and pelvis that was done when he was hospitalized for surgery. He did not have the pathology report either. Also when I asked the oncologist questions such as whether my Dad should have Celebrex in view of the studies, he snapped at me,'Your father is not in a clinical trial." The oncologist is always very busy and seems harried. I constantly remind him of things that he has forgotten. But it is not all negative. The oncologist seems very dedicated, usually caring and is always available if I have a question or concern.

To continue (hope you don't mind listening), my father just had scans to see how the chemo is doing. Here are the results I got over the phone yesterday:

there is a nodule in the lung; not sure of what significance it is; could be calcified; it was there last time (scan before the surgery); it hasn't changed; this nodule would have been there before his surgery in May; at this point, I don't know if this is the nodule that alerted them to look for a recurrence of the cancer; my sister recalls it was supposed to be in a hard to get to spot

kidney - there is a nodule on the kidney and ultrasound is suggested; no change since last time (apparently this nodule showed up on Dad's last CT but no one mentioned it in the report so we were unaware of it); we were advised to get an ultrasound of that ((if it is a cancer, oncologist said it could well be a primary cancer??))

femur -- no change -- (This is what we are most confused about. To quote the PET scan, "A new focus in medial aspect of the distal metaphysis of the right femur, in the context of the patient, is suspicious of the presence of osseous metatasis, as well as the unchanged focus in the calvarioum. ) I do not understand this sentence but as it was explained to us initially, they are not sure that this is a metasticis but most likely it is and they couldn't tell for sure since it was so small; even if they biopsied it and they were reluctant to put my Dad through another procedure, the bone oncologist said it might not show malignancy cause it was so small. Consequently, the oncologist decided to treat my Dad as if he were Stage 4, rather than 3; chemo alone and no radiation to the lung

The oncologist finished on the phone with me saying that whatever is going on, it seems stable????

Oncologist also promised that when he gets back from vacation, he will talk to the bone radiologist who did this report as well as another to get their opinions on the femur.

By the way, on the chemo, my Dad suddenly developed a neuropathy in the leg and now has a bit of an unsteady walk. We're going to the neurologist about that next week.

May I have your opinons as to how you would view these results? I'm obviously not thrilled but... My father is quite "down in the dumps" feeling that chemo should make you better, not stable. Then again, we have no idea if the chemo has made him stable, do we?? Also, in your experience, does lung cancer mestasticize to the kidneys? Any other information or thoughts you could add would be appreciated. We are definitely headed for a second opinon before doing any other treatment. Right now it seems as if it's guesswork as to whether to treat him as a Stage 3 or 4.

Thanks so much for listening.

Gail P-M

[LindaMRG]

I hate feeling more confused after actually talking to the doctor. If I were you I would call back and give the onc the questions you pose here. I would start by saying, "After thinking about everything Im confused about ............" Too bad if he's annoyed. I did that after my father's initial consultation with the surgeon. I called the next day and said I had questions. There is always comfort in knowing rather than guessing.

[Margaret]

Gail,

I would be seeking another opinion. I feel a second opinion should be sought no matter what. I cannot tell you the difference a positive doctor can make in this whole difficult endeavor. I hope you will find a way to be in control.

Peace,

Margaret

[tmaizeinlv]

Your Dad's oncologist sounds like the one my mom has. My dad asked about Celebrex and the doctor asked my dad where he got his MD and where he got such a stupid idea. Same stuff/crap, but the guy my mom has does seem dedicated (cancelled his vacation because one of his patients went critical) and seems to know his stuff. My mom had 15 days of whole head radiation plus two rounds of carbo/taxol. She has extreme neuropathy in her hands and feet and a VERY unsteady walk (she needs a walker). This is absolutely a side effect of the chemo. That said, I agree with the others who posted; get a second opinion, talk to the doctor again, etc. I finally got an appointment with my mother's doctor and told him that I needed to ask questions. I told him I was not challenging his authority of knowledge, but wanted to understand what was going on so that I could best help my mother and father get through this. I kept emphasizing that I was not questioning HIM, just asking questions. He finally actually answered my questions. Anyway, that's just a suggestion. Also, American Cancer Society has a hotline that may be able to help answer questions and MD Anderson has a nurse practicioner that may be able to help translate.

Best of luck, best of everything.

Terre