CEA of 1100 could this be right?

Options
lg2cyg
lg2cyg Member Posts: 4
edited March 2014 in Colorectal Cancer #1
I was diagnosed with colon III cancer in January of 1998. Out of all the lymph nodes checked only 2 or 3 were negative all others were positive. The tumor was removed surgically, I than went on to receive radiation then chemotherapy. In June of 2000 I went in for a colonoscopy and they found a small positive tumor. Again they removed it surgically. But this time no radiation or chemo. But I was given a permanent colostomy. In June of 2002 I went in for a CAT scan and a small area of fatty tissue was found, but after a biopsy it showed to be positive and a PET scan showed it in the same location as the CAT scan the pre-sacral area. My CEA markers were at 18 and I went back on chemo and my CEA markers came down to zero. My CEA markers were monitored every month through 2003, 2004 and 2005 and the increases were very small, sometimes an increase of 5 other times an increase of 10 and even sometimes they would come down 2 or 3. In August of 2005 my CEA marker had reached 178 so my oncologist suggested I go back on chemo. After my treatment my numbers came down to 40, better, but I was disappointed because I expected a zero. Since then my CEA markers have been increasing, 84, 183, 530, and now 1100. My oncologist stated that the latest numbers are usually associated with someone who has cancer spread all over there body. I have just recently had another PET scan and NO other tumors show up other than the one in the pre-sacral area. Same for my recent CAT scan. My oncologist suggests that I go back on chemo to bring my numbers down. I am worried that if I do go back on chemo it will cause all the hidden tumors waiting to shown there face then it would be to late. I don't recall what medication I was given for chemo the only one I remember is 5U was always one of them. Right know I do experience lower back pain and pain going down my legs my feet are like they are asleep all the time and I lose my balance because of that. I am taking morphine for pain and that usually helps but the doctor says I will eventually have to continue to increase my dosage to relieve pain. Now the question, has anybody ever had such experiences?

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    Options
    Have you had a bone scan or an MRI done. Perhaps they could give some answers to your pain.

    Maureen
  • mwomack
    mwomack Member Posts: 78
    #3
    Options
    Why did they not take out or "debulk" the presacral mass? From my reading, the pain you are experiencing is pretty typical for a presacral mass.

    My husband Stage IIIC Sigmoid cancer (Oct. 2004)is having surgery Wed. to hopefully debulk (surgeon's word) a mass in the presacral space. They will be doing an exploratory laporascopy to make sure there is no other cancer even though nothing else showed on PET/CT. The last 2 ct's have shown some nodes around the seminal vesicles but they were not hypermetobolic. At any rate, they are a concern to the surgeon. If there is nothing else, they will open him up and debulk the presacral mass. They have already said he will have to do radiation.

    My husband's CEA is at an all time high for him 5.5(sounds like nothing huh). Thankfully, our onc. took the increases quite seriously. He finished chemo in May 05. His CEA in July was 1.2, Sept was 2.4 (the onc. called and wanted to check it again in 6 weeks), Oct. was 2.7, Dec. 3.6 and Jan. 5.5. He did a CT in December which showed some interval differences around the prostate and seminal vesicles along with some reactive inquinal nodes. It did not find the presacral mass though. In Jan. when he did the PET/CT, the presacral mass was markedly hypermetabolic and they found it on the CT scan. The radiologist also went back to the DEC CT scan and found it although it was a little smaller then. Even today, it is not a large mass (1.7 x 1.0) so hopefully we will see a good outcome from his surgery.

    I wish you the best, and wish I could give you some answers. From my research, I have not found a whole lot on treatment of presacral masses, and we are just beginning our own journey.

    MA
  • lg2cyg
    lg2cyg Member Posts: 4
    #4
    Options
    Moesimo said:

    Have you had a bone scan or an MRI done. Perhaps they could give some answers to your pain.

    Maureen

    Maureen, thank you for your reply. And yes I did have a bone scan and also an MRI. They both came out looking fine with no problems. The oncologist feels the tumor is putting pressure on some nerves that run down my legs causing the pain.
  • lg2cyg
    lg2cyg Member Posts: 4
    #5
    Options
    mwomack said:

    Why did they not take out or "debulk" the presacral mass? From my reading, the pain you are experiencing is pretty typical for a presacral mass.

    My husband Stage IIIC Sigmoid cancer (Oct. 2004)is having surgery Wed. to hopefully debulk (surgeon's word) a mass in the presacral space. They will be doing an exploratory laporascopy to make sure there is no other cancer even though nothing else showed on PET/CT. The last 2 ct's have shown some nodes around the seminal vesicles but they were not hypermetobolic. At any rate, they are a concern to the surgeon. If there is nothing else, they will open him up and debulk the presacral mass. They have already said he will have to do radiation.

    My husband's CEA is at an all time high for him 5.5(sounds like nothing huh). Thankfully, our onc. took the increases quite seriously. He finished chemo in May 05. His CEA in July was 1.2, Sept was 2.4 (the onc. called and wanted to check it again in 6 weeks), Oct. was 2.7, Dec. 3.6 and Jan. 5.5. He did a CT in December which showed some interval differences around the prostate and seminal vesicles along with some reactive inquinal nodes. It did not find the presacral mass though. In Jan. when he did the PET/CT, the presacral mass was markedly hypermetabolic and they found it on the CT scan. The radiologist also went back to the DEC CT scan and found it although it was a little smaller then. Even today, it is not a large mass (1.7 x 1.0) so hopefully we will see a good outcome from his surgery.

    I wish you the best, and wish I could give you some answers. From my research, I have not found a whole lot on treatment of presacral masses, and we are just beginning our own journey.

    MA

    MA,
    Thanks for your reply. The reason a 3rd surgery was ruled out was because after my last surgery the surgeon said there was a lot of scar tissue damage, caused by radiation, and that he would never recommend another surgery because the last one was very difficult and he was worried that this time I would lose a lot of blood and he would not be able to control it. I did go see another surgeon, at the Norris USC Cancer center in Los Angeles, and he said he thought he may be able to do the surgery. But after he viewed my CT and PET scan he also stated it would be a very difficult surgery and he would not do it either.
    When you have the results of your husbands surgery could you please post it. I'm sure all will be OK.
    Thanks for your information.
  • mwomack
    mwomack Member Posts: 78
    #6
    Options
    lg2cyg said:

    MA,
    Thanks for your reply. The reason a 3rd surgery was ruled out was because after my last surgery the surgeon said there was a lot of scar tissue damage, caused by radiation, and that he would never recommend another surgery because the last one was very difficult and he was worried that this time I would lose a lot of blood and he would not be able to control it. I did go see another surgeon, at the Norris USC Cancer center in Los Angeles, and he said he thought he may be able to do the surgery. But after he viewed my CT and PET scan he also stated it would be a very difficult surgery and he would not do it either.
    When you have the results of your husbands surgery could you please post it. I'm sure all will be OK.
    Thanks for your information.

    I didn't think of that. I have a fear of them coming out and telling me they are not going to open him up. I told the surgeon, I was going to be quite happy not seeing him for 2 or 3 hours. Of course, they said they do not really know anything until they look with the laporascope. He did say that this surgery carried all the same risks as the original surgery with greater chances of them occuring.

    He did not mention scar tissue so maybe it is not too bad. He has not had radiation yet, but I am terrified of it as I've read so much about it on the different lists.

    I will post as soon as I'm able. Again from my reading, the presacral space has a lot of nerves and veins and can be pretty painful. Make sure they manage the pain, they are making a lot of progress in pain management.

    My husband has been having lower back pain since about October when he stands or walks. I think he has more than that because he gets up most morning and heads straight to the tylenol bottle. I've asked a couple of times what is hurting and he says his back. Of course, it is the bed's fault.

    Wish I could help, but the presacral caught my eye as I've not found a lot on it.

    MA
  • mwomack
    mwomack Member Posts: 78
    #7
    Options
    lg2cyg said:

    MA,
    Thanks for your reply. The reason a 3rd surgery was ruled out was because after my last surgery the surgeon said there was a lot of scar tissue damage, caused by radiation, and that he would never recommend another surgery because the last one was very difficult and he was worried that this time I would lose a lot of blood and he would not be able to control it. I did go see another surgeon, at the Norris USC Cancer center in Los Angeles, and he said he thought he may be able to do the surgery. But after he viewed my CT and PET scan he also stated it would be a very difficult surgery and he would not do it either.
    When you have the results of your husbands surgery could you please post it. I'm sure all will be OK.
    Thanks for your information.

    lg2cyg:

    He has had the surgery, and we were pleasantly surprised in that the surgeon did it laparoscopically. He said he did not have any scar tissue and he is "absolutely amazing." He is 58, and has had a hernia repair, appendicitis, and the colon resection so he is fortunate in his healing.

    The pathology report:

    "Metastatic poorly differentiated colonic adenocarcinoma, 1.7 cm in greatest dimension"

    "Would presume that the metastatic presacral tumor with focal extension to cauterized edges (margins) in the soft tissue with no suggestion of lymph node likely represents venular metastasis beyond the domain of the sigmoid mesocoln, hence M1."

    Does "focal extension to cauterized edges" mean they probably did not get all the cancer cells?

    Also, the onc. is wanting to see what his CEA is before deciding on whether to do chemo or radiation. If it is down below normal, radiation. Even if there was more cancer in there would the CEA not drop fairly drastically (below normal) with the removal of this tumor? His CEA before removal of the presacal tumor was 5.5. I would expect the CEA to be below 3.0 at this point. But what do I really know.

    This is so much harder because with the original cancer, it was easy to find what the "protocol" for treatment was.

    When do you get your CEA checked again?

    MA

Discussion Boards