Offered home hospice not surgery

herdizziness
herdizziness Member Posts: 3,624 Member
edited March 2014 in Colorectal Cancer #1
Stage IV cancer. On February 6th I was diagnosed with Stage IV cancer of the Colon, with mets, to right ovary, right kidney and my liver. No offer of surgery was made, yet it seems that most of you have had surgery. I was offered chemo because my cancer was blocking off my intestine and could no longer process food, food went it, throwing up was way out. My chemo was offered as a way to allow me to live longer then the week or two I would have had left, had I not gone to the emergency room.
When I left the hospital a week later I was offered home hospice, which I declined.
Do I have the wrong doctor's??? Why is everyone else, it seems offered surgery???

Comments

  • Patteee
    Patteee Member Posts: 945
    #2
    Only guesses here cause not
    Only guesses here cause not really knowing much about your cancer or the spread of it. But it may involve too many vital organs and or the aggressive nature of it. Surgery may not be an option because your doctor doesn't think it will help, in fact it may shorten your life.

    That being said- you need to get another opinion.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    No surgery for my tumours yet either
    Hello,

    I have not had surgery for my 2 colorectal + 4 liver mets - I had chemo + radiation last summer, then was supposed to have surgery in the fall for the colon tumours, but in the meantime they discovered the liver mets. I have been on chemo every other week since September, + my mets are shrinking, as well as my colorectal tumours are "not detectable". There could be a time when I am able to have surgery, I don't know. For now, the chemo is working. There was a thread on this forum saying that lately experts are finding it better to go on chemo first if you have mets. I was happy to see this thread, as I too felt like I was the only one who didn't have surgery. My surgeon's nurse told me at the time that if I had surgery back in the fall I would be off chemo for awhile + the liver mets would grow. That being said, it is never a bad idea to get a second opinion. How are you feeling overall; energy-wise etc.? Take good care!
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    AnneCan said:

    No surgery for my tumours yet either
    Hello,

    I have not had surgery for my 2 colorectal + 4 liver mets - I had chemo + radiation last summer, then was supposed to have surgery in the fall for the colon tumours, but in the meantime they discovered the liver mets. I have been on chemo every other week since September, + my mets are shrinking, as well as my colorectal tumours are "not detectable". There could be a time when I am able to have surgery, I don't know. For now, the chemo is working. There was a thread on this forum saying that lately experts are finding it better to go on chemo first if you have mets. I was happy to see this thread, as I too felt like I was the only one who didn't have surgery. My surgeon's nurse told me at the time that if I had surgery back in the fall I would be off chemo for awhile + the liver mets would grow. That being said, it is never a bad idea to get a second opinion. How are you feeling overall; energy-wise etc.? Take good care!

    Hiya!
    I think maybe you should get a second opinion as well. I am Stage 4 as well, with mets to liver, but also deemed inoperable, probably because of where the tumors are sitting. I was diagnosed in Jan 2009 and have been on chemo ever since. My first onc told me I am inoperable, and have no other options that will ever help, and I will be on Maintenance chemo for the rest of my life. She moved, and I got a new onc who told me he wants to try Radio Spheres. I was shocked when I heard this, as the first one didn't even want to try anything else.

    Quite a few people here are Stage 4 who were deemed inoperable, and then became operable, so just don't lose the hope, you never know, and are still around years later. If I were you, I'd go to a major cancer center, and really get a 2nd or 3rd opinion.

    Hugsss!
    ~Donna
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #5
    Shayenne said:

    Hiya!
    I think maybe you should get a second opinion as well. I am Stage 4 as well, with mets to liver, but also deemed inoperable, probably because of where the tumors are sitting. I was diagnosed in Jan 2009 and have been on chemo ever since. My first onc told me I am inoperable, and have no other options that will ever help, and I will be on Maintenance chemo for the rest of my life. She moved, and I got a new onc who told me he wants to try Radio Spheres. I was shocked when I heard this, as the first one didn't even want to try anything else.

    Quite a few people here are Stage 4 who were deemed inoperable, and then became operable, so just don't lose the hope, you never know, and are still around years later. If I were you, I'd go to a major cancer center, and really get a 2nd or 3rd opinion.

    Hugsss!
    ~Donna

    Thanks Shayenne, I feel
    Thanks Shayenne, I feel better already, I thought I was the only one here not offered surgery, and when they offered me home hospice, well, I won't tell you the dark places my mind went.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #6
    AnneCan said:

    No surgery for my tumours yet either
    Hello,

    I have not had surgery for my 2 colorectal + 4 liver mets - I had chemo + radiation last summer, then was supposed to have surgery in the fall for the colon tumours, but in the meantime they discovered the liver mets. I have been on chemo every other week since September, + my mets are shrinking, as well as my colorectal tumours are "not detectable". There could be a time when I am able to have surgery, I don't know. For now, the chemo is working. There was a thread on this forum saying that lately experts are finding it better to go on chemo first if you have mets. I was happy to see this thread, as I too felt like I was the only one who didn't have surgery. My surgeon's nurse told me at the time that if I had surgery back in the fall I would be off chemo for awhile + the liver mets would grow. That being said, it is never a bad idea to get a second opinion. How are you feeling overall; energy-wise etc.? Take good care!

    I feel great when I'm off
    I feel great when I'm off chemo, as if I had no cancer at all. Just during chemo, which, I am taking very well by the posts here, I only have the tingling, sometimes hurting fingers if they are cold or touch something cold, no nausea, just tired and weak when on chemo.
    My week off, I feel fantastic!!!
    I have Oxy, astiplantin (sp) and Xeloda (Xeloda for two weeks)
    Tuesday I'm on my fourth month of chemo
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #7
    herdizziness said:

    I feel great when I'm off
    I feel great when I'm off chemo, as if I had no cancer at all. Just during chemo, which, I am taking very well by the posts here, I only have the tingling, sometimes hurting fingers if they are cold or touch something cold, no nausea, just tired and weak when on chemo.
    My week off, I feel fantastic!!!
    I have Oxy, astiplantin (sp) and Xeloda (Xeloda for two weeks)
    Tuesday I'm on my fourth month of chemo

    That is great! That is how
    That is great! That is how I usually feel on my week off. I am on folfiri + Avastin so I don't have the tingling from the oxy. My nurses are constantly telling me the good results they have had with avastin, so of course that makes me happy
  • sfmarie
    sfmarie Member Posts: 602
    #8
    Second Opinion
    Don't stop until you find someone willing to treat this the way you want it to be treated. Never lose hope and keep fighting!
  • lmchils57
    lmchils57 Member Posts: 59
    #9
    herdizziness said:

    I feel great when I'm off
    I feel great when I'm off chemo, as if I had no cancer at all. Just during chemo, which, I am taking very well by the posts here, I only have the tingling, sometimes hurting fingers if they are cold or touch something cold, no nausea, just tired and weak when on chemo.
    My week off, I feel fantastic!!!
    I have Oxy, astiplantin (sp) and Xeloda (Xeloda for two weeks)
    Tuesday I'm on my fourth month of chemo

    Are they using
    Are they using Avastin with you? That is what ehya re using with my son and so far the results he is getting with the chemo and it are very positive. Scott has had very few side effects to his chemo so far, mostly a little nausea which seems to only last a couple of days. He is really trying to get back to work. He has his 6th treatment this week which will put hm halfway throguh his first round of chemo. About the only reason he has not been workign is because he did not feel comfortable working around the equipment he works with, when he is on the pump, so if he and human resources can work out something he will be working on his off week. I think this will be good ofr him because if anything is really getting to him it is the boredom of not working.
    Anyway I would also suggest you talk to another doctor, it absolutely never hurts to get a second, third or even fourth opinion. Each doctor looks at things differently I think so what one may see as impossible another may see as a challenge. We have been fortunate that Scott has a doctor that was not ready to give up on him, if we had just listened to his surgeon (no he has not had surgery, the surgeon is who we dealt with at first int eh hospital) we would have had no hope though but once we talked to his oncologists it was a whole different story.
    Take care and remember a positive attitude really helps also, I beleive that that and all the prayers Scott is recieving is what is helping him the most.

    Linda
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #10
    Hard to Say
    Is the hospital you are going to specialize in cancer? Have you tried a second opinion yet? I would make sure that both are looked into. It seems a such a drastic jump with few (if any) options.
  • geotina
    geotina Member Posts: 2,111 Member
    #11
    Surgery
    George did have surgery but his turmor was in the transverse colon and was large and surgery was offered immediately, followed by chemo. He did have extensive mets to the liver and lungs and no surgery, radiation, etc. was offered for that, just chemo. He has done well with the chemo so that is where we are at now. I would certain question why they can't do surgery on the colon, do a resection. If I am reading your post correction, you have a complete blockage? Since they are offering you nothing I certainly would look for a second opinion. Where do you live? Perhaps other members can offer info to you regarding their place of treatment.

    Take care- Tina
  • thready
    thready Member Posts: 474
    #12
    Second Opinion
    I agree with others here. You need a second opinion. You also need to be followed concerning the process of the mets etc. You need to know how you are responding to chemo. I am wondering how the food thing is going. Can you keep stuff down now? I would think they would want to take what ever is blocking the intestines out so you could get some nutrition down, it does sound like the chemo is shrinking your tumors especially since you feel better when off chemo but I would want to know for sure.

    I think I would look into seeing someone at a specialty hospital,some place that has the gurus of cancer treatment. There are so many here that were given grim news then they pushed on and have received treatments that have helped.

    Wishing you the best.
    Jan
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #13
    geotina said:

    Surgery
    George did have surgery but his turmor was in the transverse colon and was large and surgery was offered immediately, followed by chemo. He did have extensive mets to the liver and lungs and no surgery, radiation, etc. was offered for that, just chemo. He has done well with the chemo so that is where we are at now. I would certain question why they can't do surgery on the colon, do a resection. If I am reading your post correction, you have a complete blockage? Since they are offering you nothing I certainly would look for a second opinion. Where do you live? Perhaps other members can offer info to you regarding their place of treatment.

    Take care- Tina

    I live in Santa Cruz, CA
    I live in Santa Cruz, CA Tina
  • karguy
    karguy Member Posts: 1,020 Member
    #14
    Yes
    Yes,you should definetly get a second opinion,or even a third.It's your life and you need to keep fighting for it.Try and find a cancer hospital if you can.My tumor was almost blocking my entire intestine,and I was throwing up about twice a day,and the tumor had spread just as far outside the intestine,and attached to my tailbone,plus lymph nodes.I did chemo,and radiation,then surgery,Good luck.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #15
    thready said:

    Second Opinion
    I agree with others here. You need a second opinion. You also need to be followed concerning the process of the mets etc. You need to know how you are responding to chemo. I am wondering how the food thing is going. Can you keep stuff down now? I would think they would want to take what ever is blocking the intestines out so you could get some nutrition down, it does sound like the chemo is shrinking your tumors especially since you feel better when off chemo but I would want to know for sure.

    I think I would look into seeing someone at a specialty hospital,some place that has the gurus of cancer treatment. There are so many here that were given grim news then they pushed on and have received treatments that have helped.

    Wishing you the best.
    Jan

    Thanks Jan, I feel like an
    Thanks Jan, I feel like an idiot about cancer, I have it, I've looked it up, but I am just now understanding what mets is, etc.
    Yes, I can keep stuff down now, so the chemo definitely did something there. I've been maintaining the same weight every 3 weeks when I see the Doc.
    It's been 3 months, and they just did a blood test on Tuesday, and the Doc said a scan in 3 more treatments (counting this one). I live in Santa Cruz, we have a small hospital, and no cancer treatment centers. We are so small a town it isn't surprising my neighbor has the same Oncologist as I do, (we both have colon cancer).
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #16
    karguy said:

    Yes
    Yes,you should definetly get a second opinion,or even a third.It's your life and you need to keep fighting for it.Try and find a cancer hospital if you can.My tumor was almost blocking my entire intestine,and I was throwing up about twice a day,and the tumor had spread just as far outside the intestine,and attached to my tailbone,plus lymph nodes.I did chemo,and radiation,then surgery,Good luck.

    Yep, that's about where I
    Yep, that's about where I was, that's how the cancer was found, I couldn't process food anymore, only way was throwing it back up, lost 10 pounds one week and 6 pounds on the weekend before. Now I'm maintaining weight, I don't lose, I don't gain.
    I am just eager for the scan to see where I'm at and waiting another 2 months seems like such a long time.
  • chicoturner
    chicoturner Member Posts: 282
    #17
    Look for other dr.
    You are so close to UCSF. They have a well known colon cancer center there. Ask for a referral, if you can't get one from your onc, call UCSF. Keep trying, they are hard to get going with, but good when you do. I am going there now as my onc has referred me. Don't quit fighting! Jean
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #18
    chicoturner said:

    Look for other dr.
    You are so close to UCSF. They have a well known colon cancer center there. Ask for a referral, if you can't get one from your onc, call UCSF. Keep trying, they are hard to get going with, but good when you do. I am going there now as my onc has referred me. Don't quit fighting! Jean

    Thanks Jean, I'm assuming
    Thanks Jean, I'm assuming that's in San Francisco?
  • Nana2
    Nana2 Member Posts: 255
    #19
    herdizziness said:

    Thanks Jean, I'm assuming
    Thanks Jean, I'm assuming that's in San Francisco?

    My husband was diagnosed in
    My husband was diagnosed in November with stage four colorectal cancer. A CT scan showed mets to the liver too, at least four. Because it was so close to the rectum they did chemo with radiation first and then colon surgery, with the hope of more chemo and then liver surgery. After the colon surgery the Doctor came out and told us that the liver surgery was now off the table because he had seen and felt mets to both lobes of his liver during surgery. Three weeks later we got a second opinion at a teaching hospital. She did a CT scan which showed nothing on the left lobe and this surgeon said that if there were small lesions they would take care of them. Well one week ago he had the surgery. There were four lesions on the left, two were removed and two were micro ablated (burned off) One of the two that were cut out was benign. He is now recovering and coming home from the hospital in a few days. So bottom line, I am really...really thankful we went for that second opinion. I wish you all the best and will hold you and all of the dear ones on here up in prayer.
    April
  • sfmarie
    sfmarie Member Posts: 602
    #20
    herdizziness said:

    Thanks Jean, I'm assuming
    Thanks Jean, I'm assuming that's in San Francisco?

    Stanford and UCSF
    I live in Palo Alto and would highly recommend UCSF. I went to a symposium there and listened to the whole colon cancer team and they are fantastic! I would certainly get a second opinion from them. Stanford is nearby too and it can't hurt to see someone there as well.
    Marie

Discussion Boards