New Staging...need some clear answers

PrairiePrincess · New User Joined: 18 Mar 2008 Posts: 9

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brainman

PrairiePrincess, I am very sorry about Doug's Cancer. Do you happen to know what stage is is? That would be very important information to have in order to say what to expect next. Now, to your questions:

Q1. What's next and why? I take it the MRI is to find out if there are nodules smaller than the PET scan can find? Doug thinks the PET scan is more sensitive, but in my reading I see this is not so.

A: You have it reversed. A very small tumor will not show up in a MRI but will glow brightly in a PET scan.... at least in most cases. The MRI is better to show exactly where the tumor is. They are using it to pinpoint where in his liver that nodule is located, how much blood is getting to it, etc.

Q2. Doug was happy no lymph nodes lit up in the PET and said at least it is not in his lymph system. But I have read that PET does not always show lymph node involvement, and that the blood system carries colon cancer to the liver. Besides, the cancer has obviously metastasized, so it is loose somewhere, right?

A: All test have a lower limit below which they are unable to detect the presence of cancer cells. You said that one lymph note was positive for cancer so it has metastasized but made not enough for the PET scan to detect.

Q3. Doug wants more chemo and surgery, but in my reading, I saw two things, first that most liver tumours are not operable (especially since they like to set up in the blood vessels there) and two, that chemo is of no benefit to persons like Doug (since he has been through two chemo courses already, meaning his metastasized cancer is already by definition resistant to chemo). Comments on that?

A: The option for surgery on the liver is probably the main reason for the MRI.... to see if there is blood vessel involvement and to what extent. About the chemo, I am not sure what you when by "two courses". If you just mean that he has take chemo twice, chemo might still be an option. If by "course" how mean several months of chemotherapy there still might be other chemotherapeutic agents to try. As long as he is otherwise healthy, keep trying chemotherapies until you find one that works Wink

.

Q4. The doc mentioned RFA, radio frequency ablation. Does that mean that he already knows Doug's node is inoperable? My reading shows resection (cutting out the growth) is preferable when possible.

A: Resection is always the best option. But as you have pointed out, it is not always possible. RFA is effective in those cases and a realistic option. It is technically involved but not too hard on the patient (like comparing an MRI to a standard x-ray).

Q5. I try not to fixate on numbers, but my reading gives me such a wide range of outlooks. In some articles, they talk about liver resections giving a 47% chance of survival at 5 years. Other articles say less than 10% chance in two years. Some say that with stage IV liver metastasis/metastases, we have reached end game and can only try to delay death. Is there a way to make a more educated guess?

A: Until you know that that nodule in his liver is a metastatic tumor, there really is no way to give you a more specific prognosis. I do like to know my prognosis but only in order to set priorities for the things I still want to do with whatever time I have left. After setting those priorities, I try to set aside the prognosis and just live one day at a time trying to achieve those goals. I know this is easier said than done Confused

. At this point, he probably cannot even begin to set goals for his uncertain future. I know that when I was told that I had brain cancer, I had no future... only that one moment. In time, I started to realize that I might die sooner that I had planned but than I was still alive.

Q6. Doug is freaking out about how long it takes to book tests. Every day he says he fears the cancer is growing and spreading inside. But in my reading I see that early detection of liver metastases is not really important ie. if there is one, there are probably more, and the cells have already gotten loose. It will be a couple of weeks to get an MRI, and probably a couple more before any treatment is discussed let alone begun.

A: I truly understand how Doug is feeling. At the beginning, I was hyper-vigilant for any signs of the cancer returning. Now I am aware of the possibility but it does not often preoccupy my every moment. It does get worse as my pre-scheduled, periodic MRI approaches. I tend to go through a couple of days thinking "What if...". Waiting is very hard on the mind and body.

Q7. I guess we are on hold until we know what the MRI says. If there are more liver nodes and especially if they are inoperable, will they try chemo to extend Doug's life?

A: Yes, if the MRI shows that the nodules are inoperable, RFA and/or chemo would be other options. I still would question whether or not the nodule is a cancer. How can the doctor know for sure without a biopsy especially since it has not show any response to chemo?

I hope I have been able to answer your questions at least partially. You and Doug will be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

PrairiePrincess · New User Joined: 18 Mar 2008 Posts: 9

Thankyou so much for all that help!

I think we all, doc included, decided the nodule was a malignant metastases from Doug's original colon cancer. The fact that his CEA had begun to rise made the family think that, and as I say, Doug does not always ask or interpret what his oncologist says, so I am not sure if the doc actually SAID that is what it is. He's fixated that time is of the essence here, and yet I take it that is no longer so.

It had never occurred to any of us that this could be a benign condition, unrelated to the original cancer.

I will hope that in spite of having had chemo after each of his colon cancer excisions, that if this is truly a metastasis, that another course of chemo will still yield a benefit if not a cure.

I will probably have questions once the MRI results are in.

Thankyou all for understanding, and helping with the questions. It all so confusing and emotional landmines everywhere.

PrairiePrincess · New User Joined: 18 Mar 2008 Posts: 9

message removed

brainman

PrairiePrincess, I am very sorry about Doug's condition and also would want him to have asked more questions. Some people would just rather not know much more than what the doctors freely offer... which in a lot of cases is not all they know.

I am not sure if his personality change has anything to do with his cancer. Certainly, cancer could be aggravating an underlying dissatisfaction in his life that he has been sitting on for a very long time. Sometimes cancer brings out the best in people; other times, it brings out the worst... their "dark side". I know he will probably not what to go, but what would really be helpful is for the two of you to go talk with a therapist or counselor. He might also be depressed and a counselor can recommend treatment options for him to ask about. If he will NOT go to counseling, then it sounds like you need to take some harder actions. By this I mean, you will need to sit him down for a hard talk... tell him how his actions are affecting you and his whole family.

My best wishes to you and Doug.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

PrairiePrincess · New User Joined: 18 Mar 2008 Posts: 9

Thankyou so much for your help and advice! This has been a tough time for all of us.

We are going to stop worrying about tomorrow and just take things a day at a time, drawing healthy boundaries and setting reasonable behavioural expectations. Messages were removed at the request of the patient.

Again, thanks for the help! We needed support and were so glad to find you guys.

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