Kind of Poll - clean scans - did you read them yourselves.

[Guest bean_si (Not Active)]

I don't know how to do a poll so bear with me.

I've noticed many profiles show tumor disappeared from chest, etc. Gone completely!! My question: Is this information that you actually read from the medical report or was this something your doctor told you.

I mean I have a 2.3 cm in lymph node and 5.2 cm x 5.4 cm in lung and docs said no active cancer. the cells are necrotic. Lately when I ask either my onc or rad onc a question I feel like they're circling the issue - maybe trying to give me hope and force me into PCI.

At the beginning the onc. said he thought I could go for the cure. He's not saying much about that anymore. When I asked why he wasn't mentioning cure, he said you can't consider it a cure until 2 to 3 years. Then I saw my report when it was still 5.6 cm. X 6 cm and thought - this don't look like any cure I've seen.

[MurielK]

The radiologist's office faxes the CT scan report to my onc. I pick up the films and bring them with me to the onc. appt. Usually, the films include a copy of the radiologist's report. One time the report was not included, but I noticed it before I left the office and asked for a copy of the report. They always put it in a sealed envelope, which I promptly open when I get out of the office. My Onc. never wants that copy, as he already has it. He also goes over the films with us.

I like seeing the report before the onc. appt., so that I've thought about it and know what questions I want to ask him.

My surgeon gave me a copy of his surgery report and the pathologist's report when I went back to see him.

You can NEVER have too much information!

MurielK

[BJ]

My doc says its not considered cured until you have been in remission for 5 years. At first when I would get a scan, my onc nurse would give the copy to me to read, then she would explain it to me. Now that I no longer am on chemo, I have them print off a copy for me and I have started collecting them. I still don't understand what they say, but as long as I can read "no change", I'm happy with that until I see my doc and have him explain it to me. Could your tumor still be there, but the cells are dead? Is that possible?

BJ

[Donna G]

You can request a copy of your results from your Doctor. It is your record! Some clinics charge you for this "service". I even got a copy of my initial xray. I used it at an event we had a couple of years ago at our state capital. Others in our group also got a copy of theirs. I used it again at some tables I was allowed to put up for the month of November in the hospital I work at for Lung Cancer Awareness Month. I keep a folder of results and lab also for future reference. Donna G

[mhutch1366]

What BJ said is what necrotic means -- the tumor mass is disintegrating with what appear to be dead cells present.

My large tumor appeared to be dead, the inside core was rotting away. When the tumor was removed, this was in fact the case.

with a smaller tumor, it maybe eaten up entirely by the body's scavengers.

Again, Good Luck

XOXOX

MaryAnn

Prayers, always.

[Guest bean_si (Not Active)]

Thanks for all the info. I only hope those 2 tumors are necrotic. At the beginning, they did 2 biopsies. both came back with necrotic cells. It was explained that this tumor is so fast growing that it reaches out, developing more blood vessels, leaving the center dying from lack of nutrition.

I am worried about the one in my lymph node. I gotta say I envy it when I see posts that say NED or tumor all gone. That would be such a relief on my mind.

My chemo onc usually uses the hospital for testing. There I just go in the next day, ask for a report. This is a good thing because my chemo never calls with the results. Now, the brain scan was done by my rad onc at the 'health city' for the hospital and when I called for results, they said you had to get them from your doctor's office. NO FAIR! Next time I'll insist on the hospital even though it's farther away and undergoing new construction.

BTW, I did call the rad onc nurse and she told me NO BRAIN METS! Thank you all the spirits. I get to rest for another day. Tomorrow I have to decide on PCI. Oh gee.

[stand4hope]

I don't know how they can tell by looking at the pictures that the cells are dead. After very first follow-up scan (only 6 weeks after WBR), my husband's brain tumors looked exactly the same to me, but onc. said they could be dead cells, so this 6-week scan usually can't be trusted for accuracy. I remember thinking, then why do it.

Anyway, I wanted to tell you all that I was recently refused a copy of my OWN report of my OWN scan by the facility that did the scan. I was furious. She said I couldn't get it for 7-10 days because they have to be sure the doctor gets it first to talk to me about it. I said this exactly, word for word: "Let me see, this is my body, my scan, I paid for it, and you won't give me a copy of the report?" She said she was sorry but that was their policy. I told her what I thought of their policy (I was nice, but I told her I didn't like it). I'm a paralegal of 15+ years, so I easily could have created a HIPPA authorization and then attempted to get the report, but my appointment with the doctor was the next day, so I decided to forget it. I bet you that I could have written a letter on our firm's letterhead, with my own signature, and walked in there a got a copy and they never would have noticed that the signature was the same as the patient. Go figure - a lawyer could probably get them before 7-10 days, but I couldn't. I intend to do some research on this topic and see what the law is in Indiana (if any) about providing patients with copies of their reports. They might have a "legal leg", but I hope they don't so I can fire off a letter, or have my boss do it. Grrrrrrr!

P.S. I, too, really would like to know how they can tell by "looking" that the cells are dead.

Peggy

[john]

Just because a lymph node is enlarged doesnt necessarily mean it is cancer. Lymph nodes enlarge when they are fighting an infection.

So hopefully it is nothing. What does you doc think about a biopsy of the node (can it be reached) or a PET scan

[jamie]

You would think the best thing to do would be to talk to your onc.,,, But I get it. My dads onc. is the same way. Dont think they realize how important it is to be clear, and informative. Press the doc. for answers!! You deserve to be informed. I think its good advive to requst all of your reports, slides, everything. Although when I saw my Dads stuff, I couldn't make heads from tails..

Good Luck,

Jamie

[john]

I don't think there is a way via a CT scan to tell if a cell is dead. A PET scan measures metabolism so it can tell if a tumor is dead or not.

I am not positive on this but I am pretty sure. I'll post if I find more info

[Guest bean_si (Not Active)]

Hmm, wonder if it's something to do with my insurance company because it surely seems a PET scan would answer the question. Bet that's it - the insurance fiasco crud.

Well, today I found I have no brain mets, it's a beautiful sunny, windy day here in S.Florida, I just completed a watercolor that I like, my sister (a teacher) is probably coming down for some time in June, I get to fly up to see my daughter in August and I'm going to concentrate on that. I believe the cells are dead. I believe, together with God, I will beat this disease.

So there you go - I weighed the good news and the bad news and I think the good news outweights any "iffy" information.

Only bad news - my wee dog ate one of my expensive paint brushes. The little devil of dog is named Angelica Hope. I got her right after my dx. I guess everyone here can figure why I included the name Hope.

[Guest Phyllis]

Good for you. You deserve a break.

[Fay A.]

Peggy,

You are intitled to a copy of your report at the time the report is generated. You may have to pay a fee for it, but they cannot deny it, nor can they impose an unreasonable delay in providing it to you. And unreasonable delay would be any time after the report has been transcribed, received by the facility, and signed by the reading radiologist. I hope you will consider writing a letter of formal complaint to the CEO of the Hospital telling him that what occurred is unacceptable, that the staff requires retraining in this area, and that it should not happen again.

The way to get this to stop happening is to be assertive with the right people. You asked the clerical/tech help nicely, they said no, so you go over their heads to someone who can actually make them do their job.

It has been my personal experience that when medical providers don't allow easy access to medical records/reports something is wrong.

Hope that whatever the report contained was good news.