The very latest on my condition

KelleyTX
KelleyTX Member Posts: 36
in Colorectal Cancer #1

So after 15 months, chemo, radiation, pill chemo, planned surgery, cancelled surgery -due to mets to 2 local lymph nodes- and now chemo again, my rectal tumor still has not shrunk. They have sent my biopsy to a special lab for genetic testing to see if they can find something that will make it shrink. Meanwhile I am still doing chemo every other week. I have done 13 rounds of the current chemo, which I think my oncologist described as "Tier 2". Even though it has not made my tumor shrink, it might be keeping the cancer from spreading so I keep doing it. 

Meanwile, I ran out of time at work and was forced to retire at the age of 57, much earlier than I planned. But I am grateful they kept me on as long as they did. I think I went an entire year without going in to work. I can't sit in a chair without pain due to my tumor.

So my latest way to help myself is meditation. Starting last night I meditated on the word "healed" while visualizing my colon with no tumor in it. During my meditation time I noticed my pain was greatly reduced. I will try to keep doing this as long as I am able to.

Kelley

 

Comments

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    edited May 2021 #2
    Is surgery still off the table?

    I am a firm believer that surgery is about theonly way to get rid of cancer, I had surgery of colon knowing there were lung mets, so not sure why that reason to cancel?

  • KelleyTX
    KelleyTX Member Posts: 36
    #3
    myAZmountain said:

    Is surgery still off the table?

    I am a firm believer that surgery is about theonly way to get rid of cancer, I had surgery of colon knowing there were lung mets, so not sure why that reason to cancel?

    The surgeon says he doesn't

    The surgeon says he doesn't want to remove the tumor until it shrinks. I'm not sure how small it needs to be, though. I also have the impression that the doctors feel the surgery won't be effective unless there is a drug that is making the cancer start to go away. Currently my cancer consists of one large rectal tumor which caused bowel impaction leading to a colostomy, and 3 local lymph nodes.

    Kelley

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited May 2021 #4
    It's a rough fight you're in,

    It's a rough fight you're in, meditation and mindfulness certainly helped with mine, not to mention my great capacity for ignoring things to stay in the moment. I'm hoping they find the right stuff to get the tumor shrinking, and give you a sense of momentum in this battle....................................................Dave

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited May 2021 #5
    Not the best news

    I don't understand why they will not remove a tumour that is causing so much discomfort. I mean, even with the worse senario, surely it would be better to be comfortable, than in so much pain.  My good friend had the same issue, and he could not sit down in a chair, or even a sofa comfortably. 

    I wish you the best as you move forward. I hope they can relieve the discomfort for you, and find something that works on that damn tumour. 

    Tru

  • KelleyTX
    KelleyTX Member Posts: 36
    edited May 2021 #6
    beaumontdave said:

    It's a rough fight you're in,

    It's a rough fight you're in, meditation and mindfulness certainly helped with mine, not to mention my great capacity for ignoring things to stay in the moment. I'm hoping they find the right stuff to get the tumor shrinking, and give you a sense of momentum in this battle....................................................Dave

    thanks, Dave. I'm just about

    thanks, Dave. I'm just about at my wit's end with this cancer treatment.

    Kelley

  • KelleyTX
    KelleyTX Member Posts: 36
    edited May 2021 #7
    Trubrit said:

    Not the best news

    I don't understand why they will not remove a tumour that is causing so much discomfort. I mean, even with the worse senario, surely it would be better to be comfortable, than in so much pain.  My good friend had the same issue, and he could not sit down in a chair, or even a sofa comfortably. 

    I wish you the best as you move forward. I hope they can relieve the discomfort for you, and find something that works on that damn tumour. 

    Tru

    Thank you, Tru. Many people

    Thank you, Tru. Many people in my life wonder why they don't just go ahead with the surgery. I guess the doctors are very committed to a specific treatment protocol as having the most favorable outcome and don't want to divert from that path no matter how much I suffer.

    Kelley.

  • danker
    danker Member Posts: 1,276 Member
    edited May 2021 #8
    Operation

    Have you considered  getting a different Surgeon? A second opinion might be your salvation!!

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited May 2021 #9
    my dad's experience

                I can only speak from my dad's experience and he has had two unsuccessful surgeries one where they went in without knowing the affects of the chemo and rad . The 2nd they didn't even bother with more treatment and it cost him his prostate and bladder and still think there is more cancer left . I wish both times we would have made sure treatment worked and the 2nd time would have had more treatment before . It was a mistake I believe that and cause of it my dad suffered threw 2 surgeries and still might have cancer . So my advice is different then other's my advice the doctors are doing the right thing wanting to shrink it first to improve the odds of a successful surgery . Cause a unsuccessful surgery does nothing but cause suffering and more problems . I didn't even mention the blood clots in my dad's lungs he got after his second surgery . I just wanted to present the other side of things and i am wishing you the best and praying the find a way to get the tumor shrunk . 

  • SnapDragon2
    SnapDragon2 Member Posts: 714 Member
    edited May 2021 #10
    KelleyTX said:

    Thank you, Tru. Many people

    Thank you, Tru. Many people in my life wonder why they don't just go ahead with the surgery. I guess the doctors are very committed to a specific treatment protocol as having the most favorable outcome and don't want to divert from that path no matter how much I suffer.

    Kelley.

    Get a 2nd surgical opinion

    Get a 2nd surgical opinion with a board certifed colorectal surgeon.  

  • KelleyTX
    KelleyTX Member Posts: 36
    #11
    SnapDragon2 said:

    Get a 2nd surgical opinion

    Get a 2nd surgical opinion with a board certifed colorectal surgeon.  

    thanks. I do like my surgeon.

    thanks. I do like my surgeon. He already performed my colostomy. I'm hoping he will also be the one to do my tumor surgery. Before going to a second surgeon I might ask him if he is willing to go ahead with the surgery despite the lack of tumor shrinkage.

    Kelley

  • KelleyTX
    KelleyTX Member Posts: 36
    edited May 2021 #12
    danker said:

    Operation

    Have you considered  getting a different Surgeon? A second opinion might be your salvation!!

    I dread the thought of being

    I dread the thought of being examined and scanned and whatnot by new doctors.

    Kelley

  • KelleyTX
    KelleyTX Member Posts: 36
    edited May 2021 #13
    worriedson714 said:

    my dad's experience

                I can only speak from my dad's experience and he has had two unsuccessful surgeries one where they went in without knowing the affects of the chemo and rad . The 2nd they didn't even bother with more treatment and it cost him his prostate and bladder and still think there is more cancer left . I wish both times we would have made sure treatment worked and the 2nd time would have had more treatment before . It was a mistake I believe that and cause of it my dad suffered threw 2 surgeries and still might have cancer . So my advice is different then other's my advice the doctors are doing the right thing wanting to shrink it first to improve the odds of a successful surgery . Cause a unsuccessful surgery does nothing but cause suffering and more problems . I didn't even mention the blood clots in my dad's lungs he got after his second surgery . I just wanted to present the other side of things and i am wishing you the best and praying the find a way to get the tumor shrunk . 

    I'm sorry to hear about your

    I'm sorry to hear about your dad's treatment. I was at the chemo clinic today for my blood draw and another patient was telling me about how she had cancer surgery in 2018 and now her cancer is back. How awful it must be to think you have beaten cancer only to have it return. I'm trying so hard to be patient with my treatment but I'm just sick of the chronic pain and sick of doing chemo.

    Kelley

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