Surgery, looking for hope

Hi everyone. Yesterday was my day for surgery at Mayo Clinic. I was nervous some, but more excited than anything. All went well, the surgery consisted of sigmoid colon resection, liver left lobe resection, (one tumor remaining after Folfox and Avastin), and hopefully portal vein emolization. The surgeon has been very optomistic and said they were going for a cure. I was to go back in 6-8 weeks for the right lobe of the liver to be resected, some "mop up" chemo and if all went as hoped, it would be a miracle.

After going into the OR I woke up suddenly and was in the recovery room, no machines except standard computer w/BP, oxygen and heart rate. I immediately knew something had either gone wrong or I was still dreaming.. found a clock that showed a little over 1 hr from the time I was taken in.. then I knew for sure. Tried to find some bandaids on my abdomen or anyplace, there were none.

Shortly after I was wheeled to a regular patient room, my daughter and surgeon came in as soon as I did. As they began they saw scar tissue and on close examination found mole-size spots on the surface of my liver, at the top of my stomach and in my abdomen.. pathology confirmed the malignancy. The dr's closed me up right away, said they did not want me to go through the resection (both were going to be laparoscopic) in view of this new finding.

Later I asked how the PET, CAT and MRI that were done in the past 2-3 weeks did not show any of this, he said because they were just too small..

Thursday I go back to my oncologist here to begin chemo again. Surgeon said it is almost unlikely I will ever be a candidate for resection, but I choose to think anything can happen.

It was so sad when we pulled away from Mayo this morning.. it held my hope of being here for a few more years, enjoying my children, grandchildren and all that life has to offer. I can deal with chemo again, or so I think, but just need some positive thoughts, others experiences and hope... I feel guilty asking, you all have so much on your own plates; have been feeling wonderful for 9 mos after stopping chemo and have so very much to be thankful for.

If any of you have time to respond it would be wonderful. Thank you and love to you all, Joyce
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Comments

  • Love2Cats
    Love2Cats Member Posts: 127
    Joyce
    I send many positive thoughts and wishes for you and your family. It's understandable that you felt so disheartened after you awoke.

    I wish I could share some positive experiences with you, but I am just a rookie on the cancer roster.

    Take care,

    Sandy
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Love2Cats said:

    Joyce
    I send many positive thoughts and wishes for you and your family. It's understandable that you felt so disheartened after you awoke.

    I wish I could share some positive experiences with you, but I am just a rookie on the cancer roster.

    Take care,

    Sandy

    Feel so sorry for the unexpected findings , but just fight
    and will see how the things use to change suddenly very often! .
    There are many examples here living and controlling their tumors with no surgery!
    I pray for it!
  • maglets
    maglets Member Posts: 2,576 Member
    pepebcn said:

    Feel so sorry for the unexpected findings , but just fight
    and will see how the things use to change suddenly very often! .
    There are many examples here living and controlling their tumors with no surgery!
    I pray for it!

    Joyce
    i have had 2 liver resections....no one knows when they might become possible....

    do NOT give up hope.....3 surgeons refused me....

    hang on to hope and pepe is right.....even without surgery there is always hope

    mags
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Joyce
    I read your reply on my post and was touched by what you had written - then catching this post I'm sorry to hear of this latest development.

    I missed liver resection as well and had to do RFA and CyberKnife to knock my liver tumor out...perhaps something like this would be something for the future.

    Too many times, I've read here where the situation was dire and months later, the person got a resection and etc.etc.

    I feel your disappointment and can only imagine how you felt as you drove off the parking lot at your facility.

    Wishing you well and will be watching over you now as your journey continues.

    -Craig
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Joyce
    I am sorry that surgery didn't go as you expected. I am sure it was disheartening. Your request made me think of a particular blog that I have read. The young woman that writes the blog tells a very compelling story of the extensive nature of her disease and the path she took from diagnosis about 6 months ago to this past week when she had sutures removed resulting from an extensive surgery that she just had. She says in one post that:

    "Despite feeling strong and healthy in all of the days leading up to my surgery date, there was an extensive amount of disease lingering in my body. A thousand baby tumors on my small intestines, cancer in my belly button and spleen and gall bladder and right ovary, and even a tumor in my rectum. In 11 hours of surgery, Dr. Sugarbaker performed 17 different procedures to get me cancer-free."

    The young woman's doctors are Dr Lenz (oncologist) and Dr Sugarbaker (surgeon) and her story is amazing. I think that her story can give hope to all of us, regardless of our staging and present situations.

    Check out her blog at http://www.wunderglo.com/.

    I will keep you my thoughts Joyce,
    Amy
  • Friendinpenn
    Friendinpenn Member Posts: 70
    Joyce...please don't give up...
    Joyce, I was once told I may only have up to a year to live and now it's been over three...

    Yes, I've had some rocky roads to deal with, but I'm still here and I know I will be...and you will be too!...

    I will pray for your health and longevity...

    Your "friend-in-penn"

    Jim
  • JoyceSteele
    JoyceSteele Member Posts: 145
    Love2Cats said:

    Joyce
    I send many positive thoughts and wishes for you and your family. It's understandable that you felt so disheartened after you awoke.

    I wish I could share some positive experiences with you, but I am just a rookie on the cancer roster.

    Take care,

    Sandy

    Thank you
    Sandy, thank you for your quick reply. Doesn't matter how long you have been here, you have made me smile and feel better. Hugs, Joyce
  • JoyceSteele
    JoyceSteele Member Posts: 145
    pepebcn said:

    Feel so sorry for the unexpected findings , but just fight
    and will see how the things use to change suddenly very often! .
    There are many examples here living and controlling their tumors with no surgery!
    I pray for it!

    Me too
    Hi Pepe, I pray for it too.. thank you for the reminder... just what I need this evening. Hugs, Joyce
  • JoyceSteele
    JoyceSteele Member Posts: 145
    maglets said:

    Joyce
    i have had 2 liver resections....no one knows when they might become possible....

    do NOT give up hope.....3 surgeons refused me....

    hang on to hope and pepe is right.....even without surgery there is always hope

    mags

    Mags thank you
    Thank you for the encouragement. And for reminding me there is always hope. Hugs, Joyce
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Oh Wow
    I am so sorry that your surgery didn't happen as expected and that the damn cancer has showed up like this. It must have been a real surprise in the OR for them. And you are so right ... anything can happen ... as we have all seen.

    I am sending you some good and positive vibes that the chemo will do it's job and you can get back to the OR and have that surgery that was planned. Maybe this was just a practice run. Try to stay positive. HUGS
  • JoyceSteele
    JoyceSteele Member Posts: 145
    Sundanceh said:

    Joyce
    I read your reply on my post and was touched by what you had written - then catching this post I'm sorry to hear of this latest development.

    I missed liver resection as well and had to do RFA and CyberKnife to knock my liver tumor out...perhaps something like this would be something for the future.

    Too many times, I've read here where the situation was dire and months later, the person got a resection and etc.etc.

    I feel your disappointment and can only imagine how you felt as you drove off the parking lot at your facility.

    Wishing you well and will be watching over you now as your journey continues.

    -Craig

    How thoughtful Craig
    Craig, thank you. With all you have you reach out to help others. That's what makes the people here so special. Thanks for your note, and for watching over me! Am feeling better already.. warmest regards, Joyce
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Joyce
    So very sorry for this disappointment and the fact that it has knocked you back emotionally.

    Don't ever feel guilty for asking any of us here for what you need. While our own plates may be full, they are never too full to be able to offer help to one in need of it.

    I know that the findings have to have you concerned, but you can be sure that anything is possible as long as you keep up your spirits and doing whatever you feel best as far as treatments.

    This is a setback for sure, but it is just possible that a year or so from now you will be telling someone new here about how you have beaten it back.

    Hugs,

    Marie who loves kitties
  • JoyceSteele
    JoyceSteele Member Posts: 145
    mom_2_3 said:

    Joyce
    I am sorry that surgery didn't go as you expected. I am sure it was disheartening. Your request made me think of a particular blog that I have read. The young woman that writes the blog tells a very compelling story of the extensive nature of her disease and the path she took from diagnosis about 6 months ago to this past week when she had sutures removed resulting from an extensive surgery that she just had. She says in one post that:

    "Despite feeling strong and healthy in all of the days leading up to my surgery date, there was an extensive amount of disease lingering in my body. A thousand baby tumors on my small intestines, cancer in my belly button and spleen and gall bladder and right ovary, and even a tumor in my rectum. In 11 hours of surgery, Dr. Sugarbaker performed 17 different procedures to get me cancer-free."

    The young woman's doctors are Dr Lenz (oncologist) and Dr Sugarbaker (surgeon) and her story is amazing. I think that her story can give hope to all of us, regardless of our staging and present situations.

    Check out her blog at http://www.wunderglo.com/.

    I will keep you my thoughts Joyce,
    Amy

    Amy thank you, too
    Hi Amy, I will read her blog. These are the things that help me so much. I know of Dr. Lenz.
    My surgeon at Mayo Clinic was incredible. He was so compassionate to me and my daughter. 17 procedures and 1 thousand baby tumors are almost impossible to believe. But I do. :) Thank you for writing. You, too, have given me hope.Warmest regards, Joyce
  • JoyceSteele
    JoyceSteele Member Posts: 145

    Joyce...please don't give up...
    Joyce, I was once told I may only have up to a year to live and now it's been over three...

    Yes, I've had some rocky roads to deal with, but I'm still here and I know I will be...and you will be too!...

    I will pray for your health and longevity...

    Your "friend-in-penn"

    Jim

    Jim thank you!
    I'm glad they were wrong about you, too. Like so many of us. I have often read your posts and the remarkable fight you have fought. It was so nice of you to write to me tonight. I feel like a giant hot air balloon who had all the air let out. :) But thanks to everyone here am feeling brighter. Thank you for your prayers as well. That means so much. Thanks my "friend in Penn". Joyce
  • JoyceSteele
    JoyceSteele Member Posts: 145
    Lori-S said:

    Oh Wow
    I am so sorry that your surgery didn't happen as expected and that the damn cancer has showed up like this. It must have been a real surprise in the OR for them. And you are so right ... anything can happen ... as we have all seen.

    I am sending you some good and positive vibes that the chemo will do it's job and you can get back to the OR and have that surgery that was planned. Maybe this was just a practice run. Try to stay positive. HUGS

    Lori yes they were surprised
    The surgeon said they had absolutely no clue this was going to be the case. He said everyone was surprised. Thank you for the good and positive vibes, I know after I see my onc Thurs. he will make me feel more secure in moving forward. He always does. You may be right, perhaps it will turn out to be a practice run... HUGS back Lori. Joyce
  • JoyceSteele
    JoyceSteele Member Posts: 145

    Dear Joyce
    So very sorry for this disappointment and the fact that it has knocked you back emotionally.

    Don't ever feel guilty for asking any of us here for what you need. While our own plates may be full, they are never too full to be able to offer help to one in need of it.

    I know that the findings have to have you concerned, but you can be sure that anything is possible as long as you keep up your spirits and doing whatever you feel best as far as treatments.

    This is a setback for sure, but it is just possible that a year or so from now you will be telling someone new here about how you have beaten it back.

    Hugs,

    Marie who loves kitties

    Thank you Marie
    I appreciate your encouragement Marie. Sometimes, as I'm sure you know, things are so overwhelming you forget the things that matter. All I could think of was negative things..rather than the important ones like keeping up your spirits.

    Am so thankful for everyone's words tonight, for their love and friendship. And I love kitties, too!
    Hugs, Joyce
  • sfmarie
    sfmarie Member Posts: 602
    Joyce
    Keep searching and do not give up! There is a surgeon out there that just may find you a candidate for resection and you know, after this round of chemo, you just may be eligible.
    I also know some centers are more aggressive than others...some would take you and do the "debulking" surgery and HIPEC while others may want to do some systemic chemo and then see.
    Do not let this set you back....keep on fighting.
    Hugs,
    Marie
  • TMac52
    TMac52 Member Posts: 352

    Dear Joyce
    So very sorry for this disappointment and the fact that it has knocked you back emotionally.

    Don't ever feel guilty for asking any of us here for what you need. While our own plates may be full, they are never too full to be able to offer help to one in need of it.

    I know that the findings have to have you concerned, but you can be sure that anything is possible as long as you keep up your spirits and doing whatever you feel best as far as treatments.

    This is a setback for sure, but it is just possible that a year or so from now you will be telling someone new here about how you have beaten it back.

    Hugs,

    Marie who loves kitties

    Sorry Joyce
    So Sorry hang in there. I am praying for you.
    Tom
  • Nana b
    Nana b Member Posts: 3,030 Member
    sfmarie said:

    Joyce
    Keep searching and do not give up! There is a surgeon out there that just may find you a candidate for resection and you know, after this round of chemo, you just may be eligible.
    I also know some centers are more aggressive than others...some would take you and do the "debulking" surgery and HIPEC while others may want to do some systemic chemo and then see.
    Do not let this set you back....keep on fighting.
    Hugs,
    Marie

    Joyce
    First so sorry to hear you news. I can also feel your pain. Please try not to be discouraged, get your body strong and keep fighting for those grand kids!!

    I am wondering, did your ONC say that mole size tumors can't be picked up on a pet or ct scan? That is kind of scary.
  • Nana b
    Nana b Member Posts: 3,030 Member
    sfmarie said:

    Joyce
    Keep searching and do not give up! There is a surgeon out there that just may find you a candidate for resection and you know, after this round of chemo, you just may be eligible.
    I also know some centers are more aggressive than others...some would take you and do the "debulking" surgery and HIPEC while others may want to do some systemic chemo and then see.
    Do not let this set you back....keep on fighting.
    Hugs,
    Marie

    Joyce
    First so sorry to hear you news. I can also feel your pain. Please try not to be discouraged, get your body strong and keep fighting for those grand kids!!

    I am wondering, did your ONC say that mole size tumors can't be picked up on a pet or ct scan? That is kind of scary.