Received results today... Another bump in the road

Phil64 · January 2013

Hello friends.

I previously posted that I went in for various tests prompted by rising CEA levels. My oncologist ordered a colonoscopy, PET Scan, and MRI of the liver. The original CT Scan showed all clear (clear lungs, liver, etc.). The PET scan showed all clear with some uptake near rectum. The colonoscopy showed all clear. The PROBLEM is that the MRI shows two "small" tumors. One of the tumors is 3.2 x 1.8 cm and the other one is 1.8 x 1.2 cm.

The MRI report also says "There are multiple foci of restricted diffusion in both hepatic lobes which are not definitely seen on the post-contracts sequences. My onc said the MRI image was affected by breathing and another MRI may be required. I'm wondering if these "multiple foci" might also be tumors???

So, the next steps per my onc was for the "Tumor Board" to review the MRI results and make recommendations. I'm going to find out what the Tumor Board thinks next week. Per the onc, the possible next steps may be:

1. Surgery (if operable)

2. Another MRI (if determined needed)

3. Chemo (folfiri and erbitux) and a future surgery after shrinking the tumors

4. Chemo alone if tumors are not operable, to shrink the tumors and slow the growth

Also, my CEA went down from 40 on 1/2/2013 to 20 today. However, this hardly seems like a victory right now. I'm trying to look at the good side... At least they found the tumors. And they might be able to surgically remove them. But to be honest with you all I feel discouraged and sad right now! I went directly from Folfox/Oxaliplatin chemo to more tumors to deal with... No break/remission for me. :-(

Thank you all for your support and encouragement!

Phil

(Blog: http://pscamihorn.me/)

Annabelle41415 · January 2013

Knowledge

Knowledge is power and it is a good thing that they found it and now you can deal with it. It's got to be so scary with the labs going up and then another discovery but you should be getting a new direction from your doctor on which you should follow. You are in my prayers for success in your upcoming journey.

Kim

Chelsea71 · January 2013

I know the feeling. It's
I know the feeling. It's good that you know. Better to know than to not know. Steve and I had a great summer. He recovered from surgery. Weren't due for a scan for three months. Went to Boston. Did some other fun trips. When we got the scan results we were shocked to learn that there were numerous big tumors in the liver. All along the liver looked fine. We thought he might have been cured. Quite a surprise. The fun was over. I think back to that time and wonder how things may have played out differently if we insisted on an earlier scan. While we were traveling and enjoying life, those tumors grew to the point where the province we live in can offer no treatment other than systemic chemo. Wish we would have known then what was going on in Steve's body.

Sounds like your cancer is still small in size. I'm sure a good surgeon will have no trouble eliminating it.

Sorry you're having to deal with all this. Give yourself time to absorb the news and soon you will be ready to fight. Remember it could always be worse. You'll get through it.

Chelsea

Phil64 · January 2013

Annabelle41415 said:
Knowledge
Knowledge is power and it is a good thing that they found it and now you can deal with it. It's got to be so scary with the labs going up and then another discovery but you should be getting a new direction from your doctor on which you should follow. You are in my prayers for success in your upcoming journey.

Kim

Thanks Kim!

I agree that knowledge is power. I hope they will be able to resect. The MRI report mentions "Additional foci of restricted diffusion which are not definitely seen on the post-contrast sequences are also concerning for metastatic disease." It might mean there are more than two tumors and that they are spread throughout the liver. If that is the case I'm afraid they may not be able to do a resection. I guess I'll find out over the next week...

Dealing with this disease is very stressful! It's becoming increasingly difficult for me to focus on my work (office job). I wish I could simply set these concerns aside and develop a "whatever will be, will be" attitude. After all, some things are simply out of our control and fretting over them is probably a waste of energy...

Thanks again for your support and encouragement.

Phil64 · January 2013

Chelsea71 said:
I know the feeling. It's
I know the feeling. It's good that you know. Better to know than to not know. Steve and I had a great summer. He recovered from surgery. Weren't due for a scan for three months. Went to Boston. Did some other fun trips. When we got the scan results we were shocked to learn that there were numerous big tumors in the liver. All along the liver looked fine. We thought he might have been cured. Quite a surprise. The fun was over. I think back to that time and wonder how things may have played out differently if we insisted on an earlier scan. While we were traveling and enjoying life, those tumors grew to the point where the province we live in can offer no treatment other than systemic chemo. Wish we would have known then what was going on in Steve's body.

Sounds like your cancer is still small in size. I'm sure a good surgeon will have no trouble eliminating it.

Sorry you're having to deal with all this. Give yourself time to absorb the news and soon you will be ready to fight. Remember it could always be worse. You'll get through it.

Chelsea

Thank you Chelsea

Your story sounds very similar to my own. Dealing with this disease is certainly very stressful and emotionally challenging!

God Bless!

Phil

ps. my daughter lives in Boston. I love that town. :-)

geotina · January 2013

Phil:

Sorry about the discouraging news you received. It makes being upbeat very discouraging. When George was first diagnosed we knew nothing about cancer and its treatment(s). We were naive and thought ok, you do surgery, you do chemo, you go on your way only to find out it just doesn't work that way. Your CEA is down so that is good news. Once you get the tumor board recommendations let us know what they say. As a Stage IV the road is indeed bumpy with many twists and turns much of which you have no control over so don't let it overtake your life.

Take care - Tina

PatchAdams · January 2013

confused

The PROBLEM is that the MRI shows two "small" tumors. One of the tumors is 3.2 x 1.8 cm and the other one is 1.8 x 1.2 cm.

Are you saying these tumors seen on the MRI are in the liver? These are operable but the 3.2 would not be considered 'small'.

With 'tumors' that size, PET should show uptake.

The spots in the rectum that are lighting up are most probably the cause for the elevated CEA. I would be most concerned about those and want that checked out ASAP.

CT scans are supposedly the best for finding liver tumors. Since the CT and PET showed nothing, I would question the MRI results of the liver.

annalexandria · January 2013

Hi Phil-

I'm sorry you have to go through this stressful experience. I did 6 months of FOLFOX, had a CT that looked good, and was in the hospital two months later facing palliative surgery, so I know how sad and disappointing this kind of situation can be. But I would be curious about the fact that nothing showed up on the PET. In my experience, that test tends to be too sensitive, leading to false positives, so like Patch, I'm surprised nothing showed there. Hope you can get some more (and maybe more hopeful) answers to what's going on soon. Sending strength your way~Ann Alexandria

janie1 · January 2013

annalexandria said:
Hi Phil-
I'm sorry you have to go through this stressful experience. I did 6 months of FOLFOX, had a CT that looked good, and was in the hospital two months later facing palliative surgery, so I know how sad and disappointing this kind of situation can be. But I would be curious about the fact that nothing showed up on the PET. In my experience, that test tends to be too sensitive, leading to false positives, so like Patch, I'm surprised nothing showed there. Hope you can get some more (and maybe more hopeful) answers to what's going on soon. Sending strength your way~Ann Alexandria

Hi Phil. We have similar

Hi Phil. We have similar situations. I don't have much advice, but the scans are confusing.

What a roller coaster...... i know. Thinking of you and will continue to pray for all of us.

barbebarb · January 2013

janie1 said:
Hi Phil. We have similar
Hi Phil. We have similar situations. I don't have much advice, but the scans are confusing.

What a roller coaster...... i know. Thinking of you and will continue to pray for all of us.

Phil -have a liver reoccurence
Phil - I am sorry to hear this.
I was back at work for four months full -time. Scanned in December and reoccurence in same spot where surgery was to remove one tumor in April.
Try to regroup but its ok to feel like you do. I know its so discouraging when we are trying so hard and its so insidious.
Can they possibly do radiation? That may be an option for me. I find out on Tuesday.
Try to take the next step to fight those tumors.
We are all supporting each other -
Barb

barbebarb · January 2013

janie1 said:
Hi Phil. We have similar
Hi Phil. We have similar situations. I don't have much advice, but the scans are confusing.

What a roller coaster...... i know. Thinking of you and will continue to pray for all of us.

Phil -have a liver reoccurence - apologize if I posted twice

Phil - I am sorry to hear this. I was back at work for four months full -time. Scanned in December and reoccurence in same spot where surgery was to remove one tumor in April. Try to regroup but its ok to feel like you do. I know its so discouraging when we are trying so hard and its so insidious. Can they possibly do radiation? That may be an option for me. I find out on Tuesday. Try to take the next step to fight those tumors. We are all supporting each other - Barb

Phil64 · January 2013

barbebarb said:
Phil -have a liver reoccurence - apologize if I posted twice
Phil - I am sorry to hear this. I was back at work for four months full -time. Scanned in December and reoccurence in same spot where surgery was to remove one tumor in April. Try to regroup but its ok to feel like you do. I know its so discouraging when we are trying so hard and its so insidious. Can they possibly do radiation? That may be an option for me. I find out on Tuesday. Try to take the next step to fight those tumors. We are all supporting each other - Barb

wishing the best

Barb, I hope you hear good news and I hope I get good news too. I woke up at 2am this morning and my mind was racing thinking about my cancer battle. And I was frusrated that I couldn't relax my mind and rest.

barbebarb · January 2013

Phil64 said:
wishing the best
Barb, I hope you hear good news and I hope I get good news too. I woke up at 2am this morning and my mind was racing thinking about my cancer battle. And I was frusrated that I couldn't relax my mind and rest.

Wishing you the best too
Phil -
So appreciate your post.
We have to keep moving foward to NED.
I hate those waking moments and thinking about what we are dealing with.
It happens to me too. I pray, do deep breathing or read hope stories on my kindle fire...ugh
Yoga classes help tremendously to control the mind but sometimes the cancer battle rules! I just hate it.
I miss my work routine, golf season is coming, and I will start chemo soon.
Let's look out for each other! Something will turn around for us. We just have more parts to the equation.
Sending positive thoughts and rest. We are doing our best.
Sincerely - Barb

Phil64 · January 2013

barbebarb said:
Wishing you the best too
Phil -
So appreciate your post.
We have to keep moving foward to NED.
I hate those waking moments and thinking about what we are dealing with.
It happens to me too. I pray, do deep breathing or read hope stories on my kindle fire...ugh
Yoga classes help tremendously to control the mind but sometimes the cancer battle rules! I just hate it.
I miss my work routine, golf season is coming, and I will start chemo soon.
Let's look out for each other! Something will turn around for us. We just have more parts to the equation.
Sending positive thoughts and rest. We are doing our best.
Sincerely - Barb

doing our best

Barb, Thanks for this reminder. All I can do is my best! And I sometimes forget this.

In spite of all the bad news and challenges I can still CHOOSE to do my best and be my best. And its sad that I can forget this important choice!

And this weekend I'm going to focus on enjoying life!

Kareoke party with 30 of my best friends on Saturday and Sunday I'm going to see my son in a play! And Sunday is my birthday too. :-)

I'll be 49 on Sunday and thanking god that I'm doing pretty good!

God Bless You and thank you for your beautiful note to me! It did touch my heart today!

Love and Light to you!

Phil (http://PScamihorn.me)

tachilders · January 2013

I know exactly what you are

I know exactly what you are going through. As I have posted, I did 12 FOLFOX + Avastin (10) treatments, and had some tumor shrinkage, but nothing close to NED. I have tumors in colon, LNs, lungs, liver and peritoneum. Most are very small, with the exception of the colon tumor and one liver tumor. I am currently on 5FU + Avastin to see if we can maintain stable size and/or even get some more shrinkage, but will likely have to go on FOLFIRI + Avastin at some point. I have been told that I am not a candidate for surgery due to the widespread and numerous nature of my tumors, and everything I have read (here and other places) seems to indicate a much poorer prognosis for those who don't/can't get surgery. Most of the chemo regimens only work for a limited amount of time, so once I get through all the available drugs, things could get bad pretty quickly. I have been feeling good so far, so I can't complain about quality of life much, but I'm worried about quantity of life quite a bit. I've been a little down since my last CT scans in January, when we saw just minor improvement over the scans from September. I was hoping/praying for more improvement, especially since I had been feeling quite good, had regained weight, and had everyone telling me how good I looked. I'll fight with all I have, but I don't think my prognosis is that good, compared to quite a few of the other stage 4 folks on here...

Tedd

Phil64 · January 2013

tachilders said:
I know exactly what you are
I know exactly what you are going through. As I have posted, I did 12 FOLFOX + Avastin (10) treatments, and had some tumor shrinkage, but nothing close to NED. I have tumors in colon, LNs, lungs, liver and peritoneum. Most are very small, with the exception of the colon tumor and one liver tumor. I am currently on 5FU + Avastin to see if we can maintain stable size and/or even get some more shrinkage, but will likely have to go on FOLFIRI + Avastin at some point. I have been told that I am not a candidate for surgery due to the widespread and numerous nature of my tumors, and everything I have read (here and other places) seems to indicate a much poorer prognosis for those who don't/can't get surgery. Most of the chemo regimens only work for a limited amount of time, so once I get through all the available drugs, things could get bad pretty quickly. I have been feeling good so far, so I can't complain about quality of life much, but I'm worried about quantity of life quite a bit. I've been a little down since my last CT scans in January, when we saw just minor improvement over the scans from September. I was hoping/praying for more improvement, especially since I had been feeling quite good, had regained weight, and had everyone telling me how good I looked. I'll fight with all I have, but I don't think my prognosis is that good, compared to quite a few of the other stage 4 folks on here...

Tedd

Let's Fight!!!

Ted,

I don't care about the prognosis! We will fight this cancer with everything we have. That includes staying positive, focusing on enjoying the day, loving our families and friends, and praising God even though we don't understand the plans he has for us!

Amen Brother!

Phil

Received results today... Another bump in the road

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