Treatment CrossRoads- scared of next steps

pluckey
pluckey Member Posts: 484 Member
edited March 2014 in Colorectal Cancer #1
Hi,

I'm Stage 4 with mets all over liver. Chemo working well to shrink tumors- CEA from high of 1400 to the current 2.

I will be getting Pet Scan in about 4 weeks(after cycle 12 of chemo). then my case will be looked at by the Cancer team. Surgeon thought at one point part of my liver could be resected. What are the other procedures and which are effective?

It sounds like it's all a crapshoot. Of course no guarantees on anything. Each person is different and responds differntly. I'm just so scared of the next steps.

My oncologist WANTS me to get a 2nd opinion, just to have more eyes and input.

How painful are some of the procedres? RFA? Cyberknife etc?

Also, I am way underweight, and surgeon always mentions that I need to be bulked up to go thru possible surgery/liver resection. Is liver resection a really hard surgery to recover from?

I am JUST working my way back from surgery for bowel obstuction (Sept 6) and ileo reversal


thanks for listening

Peggyh

Comments

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Hi dear Peggyh,sorry that I
    Hi dear Peggyh,sorry that I can't provide any information.I just want to let you know you are in my prayers and I hope you can find peace in heart soon.It's never hurt to get a second opinion.I just hope you can find the best option for your treatment.Best luck and best wishes to you with everything.Take care.Hugsss.
  • butterfly23
    butterfly23 Member Posts: 256
    Hi
    I'm sorry, But I also have no info for you, but I wish you well and keep us updated. I'm sure someone here will have answers for you!
    Hugs!
    Karyn
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member

    Hi
    I'm sorry, But I also have no info for you, but I wish you well and keep us updated. I'm sure someone here will have answers for you!
    Hugs!
    Karyn

    Peggyh
    I just wanted to say hi, and that i hope all goes well and you get better soon.

    michelle
  • chiefskid
    chiefskid Member Posts: 9
    a little bit of info, wish it was more
    Peggy,
    My Dad had liver resection and radio frequency ablation. The liver resection was just ok. He had a reaction to the pain meds that made him combative but once they corrected that, he did ok for a week. But then he got a staff infection about a week later and ended up on the hospital again. Unfortunately, the tumor in the liver came back 4 months later. He had the ablation in December and it was so much easier. It was done outpatient, no incision and no pain. He was back to normal activity the next day. He started back on chemo in January and remained cancer free until he had a stroke in May. Then he could not have chemo so the cancer is back, now in the liver and lungs. He is 72 years old. I don't know about the comparative effectiveness of resection versus ablation. I know there are a lot of wonderful people on the site that know a lot more than I do. I am sure they will share their info with you. I wish you all the best. God bless
    Karen
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Hi Peggy
    Sorry to hear of your diagnosis and all. I too have Stage IV colon cancer. I had numerous mets to my liver and lungs. I had tumors on my hepatic artery, the one that supplies the liver with blood, and was at first inoperable. The chemo made it so I was able to operate. They removed roughly 60-70% of my liver. Are you aware that the liver is the only organ that regenerates itself? During the surgery they installed a pump that gave me a steady controlled dose of chemo right to the liver. I think it's a HIP, can't recall at the moment. Some others on here have had it done. The pump was only used for about 6 months after the surgery. That took care of my liver problems. I currently have some mets to my lungs. I've had a few operations on them and one time they did the RFA. It was a great procedure and worked wonderfully in my lungs. No pain other than getting stuck with a needle. The surgery was surgery, I had the liver, colon resection, gallbladder and some lymph nodes out at once so it hurt but I had a lot done. I do not know how it is with the liver but if it's close, then it's great! It never hurts to get a second opinion and another set of eyes on the case.

    What you said "Of course no guarantees on anything. Each person is different and responds differently" is true, but overall the prognosis looks good to me. Get that second opinion though (That's my opinion and this doesn't count as your second opinion either!)
    -phil
  • Shayenne
    Shayenne Member Posts: 2,342
    PhillieG said:

    Hi Peggy
    Sorry to hear of your diagnosis and all. I too have Stage IV colon cancer. I had numerous mets to my liver and lungs. I had tumors on my hepatic artery, the one that supplies the liver with blood, and was at first inoperable. The chemo made it so I was able to operate. They removed roughly 60-70% of my liver. Are you aware that the liver is the only organ that regenerates itself? During the surgery they installed a pump that gave me a steady controlled dose of chemo right to the liver. I think it's a HIP, can't recall at the moment. Some others on here have had it done. The pump was only used for about 6 months after the surgery. That took care of my liver problems. I currently have some mets to my lungs. I've had a few operations on them and one time they did the RFA. It was a great procedure and worked wonderfully in my lungs. No pain other than getting stuck with a needle. The surgery was surgery, I had the liver, colon resection, gallbladder and some lymph nodes out at once so it hurt but I had a lot done. I do not know how it is with the liver but if it's close, then it's great! It never hurts to get a second opinion and another set of eyes on the case.

    What you said "Of course no guarantees on anything. Each person is different and responds differently" is true, but overall the prognosis looks good to me. Get that second opinion though (That's my opinion and this doesn't count as your second opinion either!)
    -phil

    I am..
    Stage 4 with mets to the liver, also inoperable, I don't really know how bad my liver is, but my onc said chemo is shrinking my mets, but still inoperable, and I believe I may just go for another opinion, just to see, I love my onc, she's great, and highly recommended at The James, but I don't think it hurts to get a second opinion either, it's just me trying to get alittle finances up to go :)

    Hugsss!
    ~Donna
  • robinvan
    robinvan Member Posts: 1,012
    Hi Peggy Luckey!
    I've had both Liver Resection and RFA of a single liver met. In my case the RFA was administered via open surgery so it was not unlike the liver surgery. Large abdominal incision. 5 days in Hospital. No complications in either case. Recovery is around the time it taled for large wound healing. Epidural helps for easing post-operative pain.

    I hope your liver mets prove to be operable. If this is a "crap shoot"... surgery will probably give you the best "odds" overall!

    That said... there are many of us still at the table with poorer hands! And still enjoying the game!

    Good Luck! Rob; in Vancouver

    "Life is not a matter of holding good cards,
    but of playing a poor hand well."
    Robert Louis Stevenson
  • sfmarie
    sfmarie Member Posts: 602
    Second Opinion
    Peggy- Wow, that is great news your CEA is down to 2 from 1400. That is amazing. My sister was dx in 03/09 stage IV with mets to liver, ovaries and peritoneum. She was originally a candidate for liver resection but while off the chemo, it spread to her lymph. So, now she is back on chemo where she hopes to have liver resection and HIPEC. She has sought out 4 and 5 other opinions. From what I have learned, they consider surgery to be the best option. Cyberknife works to destroy the DNA of the cancer cells so that they cannot replicate themselves. I am not sure about RFA. I have also learned only a few places left in the country are doing the HAI pump directly to the liver. There is also SIR Spheres, but according to the radiologist we spoke with, that only "buys" you time. I agree the surgery will weaken you and it is important to try and pack on some weight before you have it. Hmmm...a good excuse to eat ice cream and cake! The surgeon we spoke with said to even eat a stick of butter for the calories as my sister is also underweight. I would certainly get as many opinions as you can. It never hurts. It sounds like you are on a great path to beating this thing! You are in my prayers. Marie
  • eric38
    eric38 Member Posts: 583
    sfmarie said:

    Second Opinion
    Peggy- Wow, that is great news your CEA is down to 2 from 1400. That is amazing. My sister was dx in 03/09 stage IV with mets to liver, ovaries and peritoneum. She was originally a candidate for liver resection but while off the chemo, it spread to her lymph. So, now she is back on chemo where she hopes to have liver resection and HIPEC. She has sought out 4 and 5 other opinions. From what I have learned, they consider surgery to be the best option. Cyberknife works to destroy the DNA of the cancer cells so that they cannot replicate themselves. I am not sure about RFA. I have also learned only a few places left in the country are doing the HAI pump directly to the liver. There is also SIR Spheres, but according to the radiologist we spoke with, that only "buys" you time. I agree the surgery will weaken you and it is important to try and pack on some weight before you have it. Hmmm...a good excuse to eat ice cream and cake! The surgeon we spoke with said to even eat a stick of butter for the calories as my sister is also underweight. I would certainly get as many opinions as you can. It never hurts. It sounds like you are on a great path to beating this thing! You are in my prayers. Marie

    Marie said it all - You have
    Marie said it all - You have come a long way and you are on the other side of the hill now. It`s just a matter of deciding where to go from there. Second and 3rd opinions are good. There is wisdom in many counselors. There is always a time in everybody`s life when they do something that their family and the majority of their friends told them they shouldn`t do and it never turns out good. So if you have many people telling you the same thing - then listen but if one person is telling you something then seek the opinion of others to confirm or deny it. My point is, I would do the procedure that the majority of the doctors recommended. Of course, there are so many office politics they may never come out and recommend anything. It`s a hard decision but you are doing the right thing by consulting people who have been through all this before. I say listen to what everybody is telling you. So far, it sounds like you have made all the right decisions and you will again. You are a survivor.

    Eric
  • PGLGreg
    PGLGreg Member Posts: 731
    PhillieG said:

    Hi Peggy
    Sorry to hear of your diagnosis and all. I too have Stage IV colon cancer. I had numerous mets to my liver and lungs. I had tumors on my hepatic artery, the one that supplies the liver with blood, and was at first inoperable. The chemo made it so I was able to operate. They removed roughly 60-70% of my liver. Are you aware that the liver is the only organ that regenerates itself? During the surgery they installed a pump that gave me a steady controlled dose of chemo right to the liver. I think it's a HIP, can't recall at the moment. Some others on here have had it done. The pump was only used for about 6 months after the surgery. That took care of my liver problems. I currently have some mets to my lungs. I've had a few operations on them and one time they did the RFA. It was a great procedure and worked wonderfully in my lungs. No pain other than getting stuck with a needle. The surgery was surgery, I had the liver, colon resection, gallbladder and some lymph nodes out at once so it hurt but I had a lot done. I do not know how it is with the liver but if it's close, then it's great! It never hurts to get a second opinion and another set of eyes on the case.

    What you said "Of course no guarantees on anything. Each person is different and responds differently" is true, but overall the prognosis looks good to me. Get that second opinion though (That's my opinion and this doesn't count as your second opinion either!)
    -phil

    Prometheus' liver
    "The mythological story that Prometheus was chained to a rock in the Caucasus mountain and his liver was eaten every day by an eagle only to "regenerate" in the night has been used by scientists studying liver regeneration as an indication that ancient Greeks knew that liver can regenerate if surgically removed or injured." --from http://en.wikipedia.org/wiki/Prometheus
  • maglets
    maglets Member Posts: 2,576 Member
    eric38 said:

    Marie said it all - You have
    Marie said it all - You have come a long way and you are on the other side of the hill now. It`s just a matter of deciding where to go from there. Second and 3rd opinions are good. There is wisdom in many counselors. There is always a time in everybody`s life when they do something that their family and the majority of their friends told them they shouldn`t do and it never turns out good. So if you have many people telling you the same thing - then listen but if one person is telling you something then seek the opinion of others to confirm or deny it. My point is, I would do the procedure that the majority of the doctors recommended. Of course, there are so many office politics they may never come out and recommend anything. It`s a hard decision but you are doing the right thing by consulting people who have been through all this before. I say listen to what everybody is telling you. So far, it sounds like you have made all the right decisions and you will again. You are a survivor.

    Eric

    liver
    good going there Peggy...those CEA numbers are amazing. I had a huge liver resection in 06 and then like Rob in van I had another small spot resected in fall of 08. Pain control is big...I never got mine right and I just keep throwing up all the variations of codeine.

    I would say 2 really sort of crappy weeks and count on 6 for full recovery. Big abdominal scars but I exercise like crazy and was out walking a track after about 3 weeks. Surgery is a good bet in my mind.

    best thoughts
    mags