Trying to decipher for test results. Help

[Guest Phyllis]

I got my ct results back yesterday with a brain, neck and lung scan. I am on carbo/taxol and this was after my second round (I have ct scans every two months which is nerve wracking but good). My largest tumor in the right upper lobe is stable at 2.9 x 2.5. I did not know it had gotten that large but at least it is stable.

My lower left lobe nodule is stable and is now 2.6 x 2 as opposed to 2.9 x 1.9. This is what confuses me the report goes on to say: "However, this left lower lobe nodule demonstrates a much thinner rim than the prior exam. There are no new lung nodules and a number of the previously visualized lung nodules now currently display thin rim". What does thin rim mean? I hope this is good news. The report says it is an overall improvement of disease.

Another confusing thing"There is persistent right paratracheal and prevasular lymphadenopathy" I assume lymphadenopathy indicates disease. I am pretty tired today and a little freaked out. My regular onc was out yesterday so I had to see an attending and was afraid the info he gave me would just totally freak me out.

I also have to see my throat surgeon since I supposedly have a small protusion in my throat. I hope this is just minor surgery and normal since it has been two years+ since I had my throat surgery.

I knew these tumors were growing pretty rapidly after being on the CPT 11/thalidomide trial for about 4 months plus I took a couple of months off to get second opinions and to line up the rfa after the carbo/taxol. The rfa surgeon knew all of this prior to the new throat nodule but he thought it was still doable as long as I was healthy. It was the onc down South that wanted me to do chemo first which I am glad he did because I think I needed a big dose of strong chemo to get things under control. Any info appreciated but be delicate cause I am tired. Plus, no spread of disease beyond the throat thing. My lympathic system is supposedly clear, brain clear, adrenals, liver, etc. Sorry for the long post.

[karen335]

Phyllis,

This sounds like really good news. I do know that when Taxol/Carbo works, it really works. Sounds like it is a good chemo for you. Praying they continue to shrink and the RFA cures you. Awesome news! Keep up the good fight and good tests. Special prayers for you...

Blessings,

Karen

[john]

lymphadenopathy just means an enlarged lymph node.

Prevascular is the are in front of the heart and paratrachel (you probably guessed) is around the trachea (windpipe). It may or may not be malignant

Is the small protrusion around your throat the lymph nodes?

thin rim of what? viable tumor, necrotic tissue.

I looked around for "thin rim" and it is what it usually is a thin rim of something.

Hopefully it means thin rim of viable tumor and the rest of the tumor is dead.

It is amazing what you have been through and are still fighting.

God bless

[Guest Phyllis]

Thank you for the responses. I saw my throat surgeon yesterday and he thought it was a good report too. He thought the thin rim stuff also meant that the tumors may be breaking up. Lord, I hope so.

I am in a kind of weird position right now. My docs at the research hospital I go to did not really believe that the carbo/taxol would work. They were more comfortable with me doing experimental drugs. When I chose this route, I kind of made for an awkard situation. I think I am doing the right thing with the standard chemo and rfa.

All I have to do is look at my special talented daughter who will be going to USC in the Fall and everything else is meaningless. Thanks again. I don't know how any of us could do this without support.

[john]

Ultimately you have the final say in your treatment. What were the reasons the doctors give that the carbol/taxol will not work?

Is the tumor confined to your lungs?

[Guest Phyllis]

The problem with the docs being against surgery or rfa for my lungs is that I have 7 tumors in the right lung and 5 in the left lung. 1 tumor in the upper right lung is 2.9, and I have another smaller one in my lower lobe; however, there are minute satellite tumors around the main tumors. The left lung is just the one in the lower lobe which is like 1.5, but it also has satellites. In most cases my docs have said that with that many tumors they would only perform pallitative measures. However, since I am only 49, in excellent health, and my disease is confined to the lungs the rfa surgeon is willing to attempt it. However, we have to have one more doctor's approval. The docs at the Univ. of Chicago are pretty much clinical research experimental chemo doctors, whose main focus is just that. The doctor in MS, who has me going through standard chemo, only sees rfa being used in a limited way, and he hesitates to against my doctors in Chicago's opinion. So I am kind of stuck. However, I am corresponding with the MS doctors including Dr. Vance the President of the American Cancer Society with my test results and trying to hold on to the promise that if I do the carbo/taxol first to shrink and hopefully kill these tumors that the oncologist will approve the rfa. Sorry that was so long.

[Guest Phyllis]

One more thing on the question you had John about why they did not think the carbo/taxol would work is that the docs at the Univ. of Chicago feel that standard chemo only works in 30% of people with cancer to shrink and kill tumors. Their focus and rightfully so is on developing new and better chemotherapy drugs. Once I would go to standard chemo I would more than likely be precluded from clinical trials. The oncologist in MS feels exactly the opposite. He feels that people should always try proven standard treatment first. The docs in Chicago also felt that I would have built up a resistance to chemotherapy by now. I just try to keep a low profile and get my treatment and go for what I think is best.

[schuyler]

I would be very careful with RFA. I had it done in Feb. 2003. My lung collapsed, which is not that terrible in itself, but I was in hospital for a week. More importantly, it did not destroy my tumor. I found this out when I went for IMRT radiation treatments. It's a new procedure. I've had IMRT for 3 lung tumors and one on an adrenal glad. All the tumors are gone, including the one RFA had left. I may have had a bad doctor for the RFA, but I'm skeptical about its effectiveness. Also, I found out at the time that RFA was not an FDA approved procedure for the lungs, so my insurance would not cover it. RFA was approved for liver tumors only. Irealize that things may have changed since then. This is only my experience. I wish you the best of luck with your treatments.

[Guest Phyllis]

Thank you for the information. I am working with the Univ. Of MS. I have also met another individual down there who has had it done on 5 tumors with great success. I would like more info on IMRT. If my tumors were not so spread out I would have other options. The rfa would be done in three different procedures and they said I would be in the hospital for about 4 days. Sometimes you don't have any choice.

[john]

There is a doctor at brown that is combining IMRT and RFA.

They also have combined brachytherapy and RFA

http://www.brown.edu/Departments/Diagno ... ation.html

http://www.diagnosticimaging.com/dinews ... 1501.shtml

[Guest Phyllis]

Thank you John for the help in figuring all of this out. I think that a group like Dr. Sewell's would be open to different techniques. They say he is a very kind and concerned doctor.

You will have to explain the brachytherapy to me. I am a little tired from the chemo this week and my brain is just dead. What exactly is it? And the IMRT. I am trying to shrink and kill the tumors now with the chemo. Is the premise that the IMRT would further shrink the tumors? then the rfa would remove any additional tumor, The tumors I guess are in three different locations basically. Any info would be helpful. I plan to write these guys and send them my test results and stuff. Just to remind them I am still here and bull headed as ever.

[john]

I recall Dr Sewells name from doing research a year ago. He seemed to be one of the pioneers with RFA for lung cancer.

IMRT is basically targeted radiation. The radiation is given very specifically to only the tumor and not the healthy tissue

Brachytherapy is internal radiation vs external radiation. A seed of radiation is implanted in the tumor. Sometimes a radioisotope is attached to a molecule that is attracted to the receptors on the cancer cells ( I don't think this is technically brachytherapy but is kind of the same idea)

My guess is that IMRT is used after the RFA. I think the problem with RFA is how to determine if the margins are clear. Again my guess is that RFA is done, then IMRT is done to the areas around the RFA.

One thing the onc will probably look at is how vascular (how many blood vessels invade the tumors). The fewer the better

Do you have two different primaries or are all the tumors the same cell type (histology)?

[Guest Phyllis]

Thank you John, you are always so generous with your time is answering our questions. I have nsclc. At least I will be armed with this information going in. I still need to write to them to remind them I am still around and doing pretty good I think.

[john]

Phyllis,

I was just wondering what cell type (adenocarcinoma, squamous) each of the tumors are? Are the different tumors in your lungs the same cell type or are they different cell types (two primaries)?

You might want to ask your doctor just for the info, because I think if they are two different primaries, then a Dr would more likely do surgery.

I am not sure about this and am not Dr, but you might want to ask

Take care