Waiting Room

SpouseDx0108
SpouseDx0108 Member Posts: 20
edited March 2014 in Colorectal Cancer #1
I'm new here. I've been looking for an active forum and finally found this one...where the newest posts aren't six months old.

My husband was dx with cr cancer in January 2008. They removed the mass in March 2008 and he was left with a permanent colostomy. During the surgery, they found that the mass had grown into his prostate and was found in one lymph node.

After the surgery, the doctors recommended that he go through a round of chemo, but he decided not to do follow through. At that time, our understanding was that the cancer had been fully removed and why should he take chemo if it was gone? What we didn't understand was that, yes, the cancer had been removed, but that there could be cancer cells still left in his body.

He began to have pain in the area of his surgery in late 2008 and was found to have quite a bit more cancer in his pelvic area in January 2009. At that point, he agreed to have chemo and radiation for about 5.5 weeks in March and April 2009. After treatments, no cancer could be found.

A few months later, he began to have pains in his abdomen, lost his appetite, began vomiting, and then stopped having bowel movements. He finally agreed to go back to the doctor and the day before his appointment, in mid-November 2009, we ended up in the emergency room. He had a bowel obstruction that they originally believed was in the area of his stoma (where the "man-made" hernia had gotten really huge). However, during surgery, they discovered the obstruction was lower and not in that area. They mentioned that it was possibly due to a tumor. We're still dressing the incision area.

During that hospital stay, they found a couple of "spots" on his lungs, but we still haven't found out whether those "spots" are tumors. He's scheduled to see the oncologist in a few days. His CEA level was 41.8 in mid-January, and thirteen days later it was 73.9.

It's been a long, rough road for all of us...and I don't see any relief in sight.

Comments

  • zenmonk
    zenmonk Member Posts: 198
    #2
    very similar
    I too had a tumor removed. I was stage 1 at the time. The Dr's said they got clean margins and there was no other pathology so no reason to do chemo after surgery. 11 months later it had spread to my liver and I was stage 4. I was inoperable at the time and feeling quite hopeless. Battled through chemo and things turned around and I became a candidate for liver resection. Had that done and some more chemo now I am clear. Things can and do turn around at any time. I am praying for strength for you.
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #3
    zenmonk said:

    very similar
    I too had a tumor removed. I was stage 1 at the time. The Dr's said they got clean margins and there was no other pathology so no reason to do chemo after surgery. 11 months later it had spread to my liver and I was stage 4. I was inoperable at the time and feeling quite hopeless. Battled through chemo and things turned around and I became a candidate for liver resection. Had that done and some more chemo now I am clear. Things can and do turn around at any time. I am praying for strength for you.

    ZenMonk
    Thank you for the words of encouragement. It's refreshing to hear your testimony and know that there is hope :) Blessings.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
    I am glad you found this
    I am glad you found this forum; you are right - it is very active! Also very helpful! There are lots of people who have had many different treatments + procedures; I think you will get lots of support. Best wishes.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #5
    Do not
    give up and continue to fight for his health. Get 2nd, 3rd and 4th opinions if necessary until you both find a team and a treatment path that you are comfortable with. As the patient, you are the best spoke person for your condition and body.
  • Shayenne
    Shayenne Member Posts: 2,342
    #6
    nudgie said:

    Do not
    give up and continue to fight for his health. Get 2nd, 3rd and 4th opinions if necessary until you both find a team and a treatment path that you are comfortable with. As the patient, you are the best spoke person for your condition and body.

    Keep The Faith...
    I been at Stage 4 since last year in January, and also been inoperable, but my onc says you never know, something can open in these next couple years. Just live life like you been, and don't keep it focus on the good things in life, go to movies, dinners, have fun, playing board games and card games with mu hands feel great, and we have a blast just being with each other.

    Don't let the cancer define you or stop you from life, no being a hermit, just get up and go, no matter how tired you are. Maybe some vitamins and supplements help with the juicing.

    Hugsss!
    ~Donna
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #7
    Hope you've changed doctors!
    Any doctor who didn't insist on chemo when the tumor had perforated the colon wall, grown into the prostate and was in the lymph nodes .... well, he scares me!

    Since the cancer had spread to the prostate, wouldn't hubby be Stage IV at his initial dx?

    Certainly the doctors need to be aggressive in his tx! I hope you can get some answers and relief when you speak with the onc.
  • tiny one
    tiny one Member Posts: 465 Member
    #8
    polyp
    Feb 19, 2007 I had my resection. My surgeon found that my polyp was lower than he had expected. One lymph node tested positive, I was stage 3. I woke with a temporary ileostomy and he recomemded I have chemo and radiation. I did 5 1/2 wks of chemo, 24/7 with a pump and radiation the same time. Then I had chemo for 6 months, 24/7 with the pump. This was twice a month. Just celebrated 3 years cancer free.
  • geotina
    geotina Member Posts: 2,111 Member
    #9
    Spouse
    I wanted to welcome you to the board. You will find a lot of information on both chemo and surgical and radiation therapies. The doctor should have insisted on chemo at your original diagnosis when the cancer was found to be in the lymph and prostate. What was he staged at diagnosis? As Diane said, I too, would think it would be a Stage IV due to the spread. You say you "dont see any relief in sight", with this disease it is one day at a time, one scan at a time and one chemo at a time. My husband is Stage IV, mets to liver and lungs and he was on six months of chemo out of the gate after diagnosis and colon resection. What chemo has your husband been on? Let us know how things stand after your oncologist appointment - Take care Tina
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #10
    geotina said:

    Spouse
    I wanted to welcome you to the board. You will find a lot of information on both chemo and surgical and radiation therapies. The doctor should have insisted on chemo at your original diagnosis when the cancer was found to be in the lymph and prostate. What was he staged at diagnosis? As Diane said, I too, would think it would be a Stage IV due to the spread. You say you "dont see any relief in sight", with this disease it is one day at a time, one scan at a time and one chemo at a time. My husband is Stage IV, mets to liver and lungs and he was on six months of chemo out of the gate after diagnosis and colon resection. What chemo has your husband been on? Let us know how things stand after your oncologist appointment - Take care Tina

    Thanks everyone
    Thank all of you for the information and encouragement.

    We have yet to be told what stage he is in by the doctors. I've done research and concluded that it had to be either III or IV when he had his first surgery. While the tumor had grown through the rectal wall and into his prostate, it was still localized and it only involved one lymph node, so I figured it could be called stage III.

    Initially, his colorectal surgeon felt that he could call the surgery a cure and he didn't see a need for any further treatment. But before we left the hospital, he was suggesting that my husband take chemo...which he refused.

    When we discovered that the cancer had recurred (or progressed, whichever it is) the first time, they wanted him to take chemo and radiation treatments then do surgery to basically remove everything in his pelvic area. My husband agreed to the treatments but refused surgery. He was on Xeloda (orally), and I think Oxilaplatin intrevenously...but I can't remember for sure.

    We'll see what the oncologist says...maybe he can give us more information about the spots on his lungs and the rising CEA level. Of course, if the spots on his lungs are mets, then he's definitely stage IV.
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #11
    Saw Oncologist Today
    I think I said that we were supposed to see the onc on Wednesday, but I was wrong. We saw him today. No new information really. The spots on his lungs (which haven't been biopsied yet) are about half an inch in diameter. There are two, maybe three. My husband will have a CT scan on Thursday, and they took blood today. The Fellow talked as if they already know there is mets; and the regular onc said that after the tests, we will go back in and discuss treatment plan and prognosis.

    My husband is having pain in his lower back.
  • linandtom
    linandtom Member Posts: 67
    #12
    Shayenne said:

    Keep The Faith...
    I been at Stage 4 since last year in January, and also been inoperable, but my onc says you never know, something can open in these next couple years. Just live life like you been, and don't keep it focus on the good things in life, go to movies, dinners, have fun, playing board games and card games with mu hands feel great, and we have a blast just being with each other.

    Don't let the cancer define you or stop you from life, no being a hermit, just get up and go, no matter how tired you are. Maybe some vitamins and supplements help with the juicing.

    Hugsss!
    ~Donna

    Keep the faith....
    So glad to see you respond. Hope you are well and enjoying life.. just as you said! - good advice to this post! Take care.
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #13
    Oncologist Visit Today
    Saw the oncologist today to find out the results of husband's ct scan. It shows multiple spots on his lungs and in his "belly." The doctor will put him on Oxiliplatin, 5FU, and eventually, Avastin. He said that my husband will be on chemo for the rest of his life and not to expect anymore 6 month or 1 year breaks. We didn't ask for a prognosis.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #14
    SpouseDx0108 said:

    Oncologist Visit Today
    Saw the oncologist today to find out the results of husband's ct scan. It shows multiple spots on his lungs and in his "belly." The doctor will put him on Oxiliplatin, 5FU, and eventually, Avastin. He said that my husband will be on chemo for the rest of his life and not to expect anymore 6 month or 1 year breaks. We didn't ask for a prognosis.

    I am sorry to hear this. I
    I am sorry to hear this. I have mets on my liver which are shrinking with folfiri + avastin. I wish your husband good results with his chemo. With regards to prognosis, as one of my doctors said, they don't have a crystal ball + my feeling is each person is an individual, not a statistic. Take good care.
  • maglets
    maglets Member Posts: 2,576 Member
    #15
    AnneCan said:

    I am sorry to hear this. I
    I am sorry to hear this. I have mets on my liver which are shrinking with folfiri + avastin. I wish your husband good results with his chemo. With regards to prognosis, as one of my doctors said, they don't have a crystal ball + my feeling is each person is an individual, not a statistic. Take good care.

    hello dear spouse.
    It is a long rough road and sometimes it seems like there are no breaks...no relief....sooo you have to make your breaks smaller...as Donna says a card game, a walk, a beautifully boiled egg.....treats come in smaller doses now.

    but there is always hope...take it from an old timer....almost 5 and a half years for me after colon diagnosis and spread to lymph nodes.....then liver and death sentence and then re-section and chemo....then more mets and another liver re-section and more chemo....oxalyplatin.....so you see even though they tell you you are a goner ....ever though they give you a miserable prognosis.....there is always hope....I'm sitting here to tell you there is!!!

    Take best of care....we can help with chemo

    hugs

    mags
  • robinvan
    robinvan Member Posts: 1,012
    #16
    SpouseDx0108 said:

    Oncologist Visit Today
    Saw the oncologist today to find out the results of husband's ct scan. It shows multiple spots on his lungs and in his "belly." The doctor will put him on Oxiliplatin, 5FU, and eventually, Avastin. He said that my husband will be on chemo for the rest of his life and not to expect anymore 6 month or 1 year breaks. We didn't ask for a prognosis.

    So Sorry!
    Getting hit once with this disease is bad enough. Recurrences really suck! So sorry to hear what you and your spouse are having to deal with.

    I'm disinclined to ask for prognosis. It is rarely helpful.

    I hope the chemo helps.

    Rob; in Vancouver
  • sfmarie
    sfmarie Member Posts: 602
    #17
    SpouseDx0108 said:

    Oncologist Visit Today
    Saw the oncologist today to find out the results of husband's ct scan. It shows multiple spots on his lungs and in his "belly." The doctor will put him on Oxiliplatin, 5FU, and eventually, Avastin. He said that my husband will be on chemo for the rest of his life and not to expect anymore 6 month or 1 year breaks. We didn't ask for a prognosis.

    Welcome
    It sounds as if you certainly received wrong information in the beginning and I think there is always the "if only" through this journey.
    However, you cannot look back, only forward. You will find soo many stories of inspiration, hope and wisdom here. It is a great place. I am sorry your husband has to endure what may be a lifetime of chemo, but you never know. These new agents have worked wonders for people here. I agree, you may want to seek a second opinion. If you can take care of the lung mets, then he just may be a candidate for HIPEC for the belly. I don't like anyone that gives a timeline. Noone can predict that, not even the best doctor!

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