I think its back

[lori314]

I had my 2nd yearly CT scan on 6/22. My blood work results are back. My CEA level is now 11.1. It has slowly been rising over the last year. I do not get the CT results until next week. The strange part is I feel the best I have since before I was first diagnosed in 2013. So my quetion is, if it is back, is it just chemo again? How many rounds do you think?

[ams5796]

It's hard to tell at this point. As you know there are many other reasons for a CEA to rise. But, if it is cancer again it may be in your lungs where they can remove it surgically. Some people have chemo after surgery, others do not for various reasons.


Ann

[Mastan]

If it is back, you will need to discuss surgical options and chemo. Surgery alone is not the standard course of treatment for metastatic disease.

Get the data first,

Best of luck,

Mark

[daniel.qin]

Hope every thing will be fine.
If CEA is rising, it is better to do scan ASAP. For me, when the CEA was 9 in the end of 2013, my previous onc told me it was OK, after 3 months, the CEA is 21.

[CM35]

What treatment given, would depend on what is growing and where, I would think. IF something is growing, explore all your options once you have that info. Like another said, things besides cancer can cause CEA to fluctuate. Hopefully that is the case here.

[lori314]

I don't see the oncologist until Tuesday, but I got a copy of the scan report from the hospital. Its the "spots" in my lungs. I was told from the beginning those spots were most likely histoplamosis due to the area I live in (Ohio). It is very prevalent in this part of the US. The CT reports reads: interval development of innumerable bilateral lung lesions as well as enlarged lymph nodes in the right hilum and mediastinum,consistent with metastatic disease until proven otherwise. Another part of the report says the lesion number in both lungs is at least 15; lesion size averages between 8 and 16 mm. When I go in on Tuesday, what should I ask for? Oncologist has told me on several occasions there is nothing to do for histoplasmosis. I'm afraid my family is going to have to bury me while he is still saying its only histoplasmosis. I am scared!

[Mastan]

Given the facts that your CEA is rising and your CT report mentions interval growth of lesions and you had rectal cancer it is likely those are mets in the lungs. If the Dr. Says histoplasmosis again find another doctor. If it were me I would insist upon second line chemo ASAP. Hopefully that will stop progression and give time to make decisions about what to do with the lung mets if that is what they are. Even with that many lung mets you may still be able to have them removed. This is typically done in England and Germany. I among others on this forum have had that done.

Best of Luck,

Mark

[Lee]

Hi Lori,

So sorry this is happening to you. If you have not had a PET scan yet, I would push for one. If it does look like you have mets to the lung, please consider getting a 2nd opinion at a major cancer treatment center. They tend to be on the leading edge on the latest technology and procedures.

A big ((((HUG))) to you, hoping it is nothing serious.

Lee

[lori314]

I had my appt with the oncologist today. He is scheduling me for a lung biopsy. He said he will be surprised if it doesn't come back as cancer. He said if it is cancer, then I am terminal and my choice if I want to do chemo. Without chemo maybe 6 months, with chemo maybe a few years but those years will be at the expense of the side effects of the chemo. He said sit my family down and decide what I want to do. I have so many questions and I'm not sure who to ask. I'm afraid to tell my employer, what if they find some excuse to let me go? Can I get disability? Do I want to quit my job when everyone else has to work? Should I just stop paying on my house, my car, my student loans? My oncologist said its bucket list time.

[ams5796]

Wow, that's a lot to take in. Sounds like the oncologist was a bit harsh giving you this information. I have a few thoughts when I read this. First of all, it's not definite that it's cancer, right? I was once told that I had innumerable mets in my lungs and after receiving the pathology report after VATS I found out that all those spots were an infection. ( a cousin to TB. Yay!) It was actually great news. But, If it IS cancer there are a lot of folks on here doing chemo for life and living very nice lives. I'm sure they'll chime in here.

There is still room for optimism.

Maybe you should start a new thread.


Ann

[rwightman]

I am disappointed your oncologist told you this was terminal with no options. It scares the shit out of people when you need to stay positive. So many new treatments are being developed that you just need to buy some time for a cure. First you need to definitely find out what is going on and then decide if you want to endure more chemo. I would - you never know what options you will have next year.

As far as your job, etc., do what makes you happy. For me, work is a great distraction. Best of luck to you and hang in there. Tons of people have been given the "terminal" news from their onc's and are still around. Anything is possible.

[ams5796]

I forgot to mention that the infection was picked up at my third opinion center. I would definitely look into a second opinion at a major cancer center.

[Mastan]

If the disease is confined to the lungs then you may be able to have the mets removed by laser resection. This is done primarily in Germany but also in England. You would sent yourlatest CT scan to one of those centers and see if they can resect the mets. There are a number of us on this board who have done this. After healing from the surgery you would go back onto chemo. It may not necessarily eliminate all the cancer but it will by more time for another option down the road.

Mark

[behconsult]

Lori, I'm sorry you have to deal with this unknown. I hope additional results say it is nothing. I would consider a second opinion. I am not sure where you go, however I am at the James with Ohio State and there are some great onc's there. There is also the Cleveland Clinic as well. Another thought comes to mind, in that a different radiologist may be looking at your scans and more detailed then the comparative set done earlier. My scans after my chemo were loaded with all these "reactive areas." The follow up was clear. What happened was a radiologist who was much more detailed looked at my scans with a fine tooth comb and listed everything. Scared the hell out of me. Take it one day at a time until you know more. Easier said then done. Peace, Bob