Decision time- thoughts welcomed

steved
steved Member Posts: 834
I don't often post about myself but have been hanging out awaiting a surgical opinion that is finally in today and I now face decision I would welcome people's thoughts on.

I am a 39 year old diagnosed with rectal cancer in 2004- treated traditionally with chemoradiotherapy and surgery. Was 7 years clear until November 2010 and have since been diagnosed with a recurrence in the pelvis. It sits on the right side at the sciatic notch through which passses the sciatic nerve. This is causing pain and progressive weakness in that leg. I have been re-irradiated (EB radiotherapy not cyberknife as it would fry the nerve and tumour is too big) and been back on chemo for over a year- now on avastin and xeloda cycles every two weeks. These are helping but the cancer is very slowly progressing. I have no signs of spread elsewhere on multiple PETs/ MRIs etc.

I have had a range of surgical opinions mainly for a pelvic exenteration (a clearance of all the pelvic organs and cancer which is the main surgical treatment for this). However, it is clear that would not be likely to be curative as it can't clear the cancer without destroying the nerves and blood vessels to the leg. I was then told there was no surgical option and moved into the palliative care process with a projected life span of a couple of years.

Following this the surgeons rediscussed the case (informally at a conference they were all at- typical bloody docs!) and recommended an opinion from a Danish group who have published the only series of patients who have hemipelvectomies for this. Ultimately their opinion is that it is worth doing.

The surgery is removal of ther bladder with a permanent urostomy (urine bag) and permanent colostomy as they remove everything they can find the pelvis. They also remove the side of the pelvic bone and amputate the leg. I would be left with two bags and one leg. I may be able to have a prosthesis but not definitely. They cannot say how likely it is to clear the cancer as only eight have been done in the published series and no one has done it in the UK. The Mayo has done some but never studied/ published outcomes.

My dilemma is how much of a gamble does one take in search of a cure. The surgeons feel there is a 'good chance' of it achieving an R0 resection (removing all the tumour with clear margins- potentially curative) but can't be more exact. My biggest fear is that I will do it and lose a significant part of quality of life and still have the cancer at the end. However, I have two young children, 5 and 8, who I am desparate to see grow up, and feel I have been offered a chance. There are no other potentially curative options- without it my cancer will progress, it will render my leg useless anyway and it will kill me.

I am scared and uncertain.

steve
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Comments

  • tommycat
    tommycat Member Posts: 790
    ...
    I tend to notice and follow the post-ers who have young children as I too am a parent.............
    Really don't have anything of value to add to your heartbreaking question but I wanted to reach out to you.
    Here is a cyber hug~~~
    Maybe someone who reads this will have a 3rd medical option for you.
    Tommycat
  • maglets
    maglets Member Posts: 2,576
    tommycat said:

    ...
    I tend to notice and follow the post-ers who have young children as I too am a parent.............
    Really don't have anything of value to add to your heartbreaking question but I wanted to reach out to you.
    Here is a cyber hug~~~
    Maybe someone who reads this will have a 3rd medical option for you.
    Tommycat

    steve
    darling darling doc: thank you so much for sharing with us .....for trusting us enough to post this huge news. You are right Steve.....you rarely talk about yourself. Here am I yammering on as if I have something to say...but like Tommy I just want to reach out to you and hold you.

    Steve I am a great great believer in surgery....it has worked for me when nothing else would. It would seem to me the Danish offer is one that is definitely worth thinking about....by the way....congrats on their saying yes... Of course you are scared....this is one dirty big decision...life changing and potentially life changing for the good!

    and whilst I have you on the phone....may I express my deepest thanks and humble respect for all that you are adding to this forum. Your quiet good sense and understanding shines through....I thank you for that Doctor Steve...

    with deepest love...
    mags
  • herdizziness
    herdizziness Member Posts: 3,624
    Ahh Steve
    What does one say to a post like this? It's so hard, you are so brave.
    I think when one has children that you want to see them grow up and you have a good chance to be there and watch them and guide them during their growing years, I would say then you only have the one option.
    I would hope that you could have an opportunity to talk with a few men or women (who have young children) that are coming home from Iraq or Afghanistan that have been involved in IED explosions, those are the ones that can best tell you how they are coping with loss of limbs and other bodily functions. They can talk to you about how their lives have changed, they would be so much closer to your situation then I could even try to fathom. I think you will find most end up having the philosophy that they want to be living to be with their family, even though it means accepting a new way of coping with their lives. But I cannot speak for them, nor imagine what they have gone through, or what you will be going through, I just want to put out that there are people that are actually experiencing what you may be going through and you can find out best how to cope and live life to the fullest with the surgeries in order to be there for your children.
    My thoughts and prayers are with you,
    Winter Marie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Steve
    That was a jaw dropping post...it hurt to read through it...all the while I was trying to put myself in your place and feel what you must be feeling.

    I have failed....

    I'm feeling alot of apprehension and fear in myself from reading this - so I can only begin to imagine the thoughts of what you must be going through - trying to weigh it all out about what you think is the best course for you.

    From what I can draw, it appears to me that you have found your own solution - or at least the way that you want to lean towards in your last paragraph.

    The decision seems to come down to:

    1. Do nothing and as you said, progression will continue and your leg will become inert.

    2. Take the gamble because the doctors at least feel that there "is a chance."

    With your kids on the line, I'm sure you are leaning towards #2 here. There is a chance and as sobering as this news is, it does represent that.

    If the worst were to come to pass, you would have empowered yourself to take the steps outlined to you by your doctors - and take the 'chance.' Perhaps, the lone consolation would be that you would at least extend more time by choosing this route.

    With all of the options ruled out - it seems it is a matter of Yes or No.

    And I don't have an inkling or even the right to offer an opinion on this...the decision is such a deep and personal one to make. I wish I could offer something more concrete to help you...just a real helpless feeling right now for me - seeing someone suffer and hurt - and then searching and finding nothing of value to add to the discussion that would help alleviate your anxiety.

    You know I've talked to you about what your story has meant to me personally - and what I think it represents to the community as a whole...I'll always feel that way...just wanted you to hear it again:)

    I will stand here with you during your time of need, however...and I will hope that your answers will be forthcoming - and that you will be okay with whatever decision that you make.

    -Craig
  • ron50
    ron50 Member Posts: 1,723
    G'gay Steve
    That is a tough situation mate and unfortunately it only gives you tough options. In my mind I have always pictured cancer as a war. If you give it an inch it takes a mile . There are a lot of young people injured dreadfully in wars,roadside bombs are not particularly selective. Their injuries are terrible and it takes a lot of care and patch work to keep them alive. In a lot of cases they are facing results similar to yours. In most cases they are not given the option on surviving or not. The work is done and they must survive the best way they can. Why because their countries feel that they owe them that for teir scrifice. I wish surgeons were the same with cancer patients. You are a very worthwhile human being. You have served the people of your country. In my view you desrve to be given a chance to see your family grow. That's how I see it. Good luck whatever you decide,Ron.
  • ron50
    ron50 Member Posts: 1,723
    G'gay Steve
    That is a tough situation mate and unfortunately it only gives you tough options. In my mind I have always pictured cancer as a war. If you give it an inch it takes a mile . There are a lot of young people injured dreadfully in wars,roadside bombs are not particularly selective. Their injuries are terrible and it takes a lot of care and patch work to keep them alive. In a lot of cases they are facing results similar to yours. In most cases they are not given the option on surviving or not. The work is done and they must survive the best way they can. Why because their countries feel that they owe them that for teir scrifice. I wish surgeons were the same with cancer patients. You are a very worthwhile human being. You have served the people of your country. In my view you desrve to be given a chance to see your family grow. That's how I see it. Good luck whatever you decide,Ron.
  • Phil64
    Phil64 Member Posts: 838
    My heart goes out to you
    Steve, my heart aches for you. This is truly a difficult decision. I pray that you will will know what to do in your heart and that you will find peace and assurance that you have chosen the best path for yourself and your family.

    Love and Light to you in this difficult time.

    Sincerely,

    Phil
  • thingy45
    thingy45 Member Posts: 632
    Phil64 said:

    My heart goes out to you
    Steve, my heart aches for you. This is truly a difficult decision. I pray that you will will know what to do in your heart and that you will find peace and assurance that you have chosen the best path for yourself and your family.

    Love and Light to you in this difficult time.

    Sincerely,

    Phil

    pro and con
    Dear Steve,

    We all would love to help you make the right decission. Unfortunately, there is no right decission, then only pro and con. Weigh them and discuss with your team and family.
    No one can make that decission for you. A chance is a chance is a chance.
    So is hope. There is always hope.
    I wish you hope and I offer light and prayers.
    hugs, Marjan
  • RobinKaye
    RobinKaye Member Posts: 93
    Your kids
    I can't even venture a guess as to how I would feel in your shoes - too frightening to imagine.
    I do know how I would feel if it were my husband and the father of my two young children, I would want you any way I could have you. As for the kids...think ahead to their wedding day, do they want to be missing you or do they want you in whatever capacity there for them?

    Watching my husband these last seven months, reading your post today...it breaks my heart.

    Robin
  • dmj101
    dmj101 Member Posts: 527
    what can be said
    What can be said that hasn't already been said.
    Shock and Awe right now..
    I don't have children but I do understand your wanting to be here for them. Not quite the same but that was my moms battle with Breast Cancer.. though not as intense as yours..
    I don't know how anyone could make this decision.. both sides of the coins are weighted with What IFs.. I tend to lean the direction of my medical profesionals believe is best for me.. but you have to decide when to say you have had enough.. the surgeries seem intense. I just don't know..
    I am going to send you lots of Positve Engery to hopefull help you find the answer and some peace..
    +++++ Energy +++++
    <<HUGS>>
    Donna
  • healynn
    healynn Member Posts: 4
    Steve
    As you know I am new to the discussion boards. I read your post and wept, you are so compassionate and give hope to those that are scared and you are dealing with a very frightening situation yourself. It is obvious that you are loved by many and you also responded to my post about my dad. I am a mother of a 9, 5 and 3 year old and know how meaningful it is to be there for them and I am also a daughter of a father that has been battling colon cancer for 11 years and recently found out he has mets to his sacrum. I worry my dad will not be there to walk me down the aisle or see my youngest start kindergarten. You and only you will make the right decision for you. I say go for the surgery, there is a chance for you, a chance to be there for your children I am so sorry that you are faced with this, it just is not fair. My thoughts, prayers and love is with you.
    Heather
  • taraHK
    taraHK Member Posts: 1,952
    huge decision
    Steve -- it is a huge decision and I certainly understand why you are feeling scared and uncertain. Whatever decision you make will be the right one, I know.

    I've always maintained that I wouldn't necessarily do 'anything' -- there may well be a time when I say "enough". And lord knows quality of life is very important -- and a 'worthy' motivation.

    Have to admit my own bias -- as I think you know, my kids were 10 and 12 when I was diagnosed. I certainly haven't had to face anything even remotely as difficult as you are facing now-- but I have to say being able to be a part of my children's lives for the past almost 10 years (since my diagnosis) has been indescribably wonderful. They don't care one iota that I have a permanent colostomy, no hair, an IV pole stuck to my arm or anything. I am just their mum.

    Sending prayers and best wishes your way

    Tara
  • idlehunters
    idlehunters Member Posts: 1,787
    taraHK said:

    huge decision
    Steve -- it is a huge decision and I certainly understand why you are feeling scared and uncertain. Whatever decision you make will be the right one, I know.

    I've always maintained that I wouldn't necessarily do 'anything' -- there may well be a time when I say "enough". And lord knows quality of life is very important -- and a 'worthy' motivation.

    Have to admit my own bias -- as I think you know, my kids were 10 and 12 when I was diagnosed. I certainly haven't had to face anything even remotely as difficult as you are facing now-- but I have to say being able to be a part of my children's lives for the past almost 10 years (since my diagnosis) has been indescribably wonderful. They don't care one iota that I have a permanent colostomy, no hair, an IV pole stuck to my arm or anything. I am just their mum.

    Sending prayers and best wishes your way

    Tara

    Hey Steve.....
    Seems to me you have some pretty solid ideas going on and one of a heck of a decision to make. I would give up what ever I had to give up to stay on this earth and be with my family. As long as that involved quality in the life. Kids don't care what body parts you gotta give up.....they just want you there....and you sure as heck want to be there that's obvious. Seems like an opportunity to me to move onward. YAY! You take care

    Jennie
  • Vickilg
    Vickilg Member Posts: 281

    Hey Steve.....
    Seems to me you have some pretty solid ideas going on and one of a heck of a decision to make. I would give up what ever I had to give up to stay on this earth and be with my family. As long as that involved quality in the life. Kids don't care what body parts you gotta give up.....they just want you there....and you sure as heck want to be there that's obvious. Seems like an opportunity to me to move onward. YAY! You take care

    Jennie

    Steve
    Hi Steve. It looks like you have already received a lot of great advice. You do what you feel you need to do. For me I look at it like this. I would take a bullet for my child without thinking of it. I will do everything possible to be here to watch her grow up and share my life with my husband. When I feel like a burden my husband and daughter tell me they will take me anyway they can get me. I try not to think too far out into the future. I ask myself - can I make it through thus surgery. If you have a urine bag at least you don't have to worry about diapers when you are older (bad attempt at humor). There are no right or wrong answers Steve. If you choose the surgeries like will change but the most important things remain the same. My prayers are with you. Follow your heart. You are already a hero.
  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    plan C?
    the cancer is very slowly progressing
    It seems to me you are in a largely experimental area here, even with the proposed surgery.

    My question is if it is possible that this tumor's progress can still be significantly stopped, slowed, or tipped into reverse without additional side effects from other/additional adjuvants. My approach to my wife's cancer has been to add less accepted modulators and adjuvants on top of conventional (Japanese papers) chemo, until the biomarkers stopped (CEA) or reversed (CA19-9), and campaign against metastasis, starting with cimetidine. In our case, multiple adjuvants and a partial resection (1st surgery, bought over a year of very high quality even with obstacles, inadequate doses, and errors) over fatalism and disbelief. This year+ of stasis also qualified my wife for her second surgery, where surgeons typically demurred as inoperable. One other item that you might investigate and address beyond our experience, is regional hyperthermia to amplify the chemo.

    When I feel cornered, I beat the bushes for credible technological hints, and start generating data, faster. Given a choice of failure, distasteful consequences, or opportunistic research, I hit sources that appear to have worked various issues, integrate the data, the science and the odds myself. Then I work to execute on delivery and measurement.
  • janderson1964
    janderson1964 Member Posts: 2,215
    What a tough post to read. I
    What a tough post to read. I am so sorry that you are faced with such a gut wrenching decision but the upside is that at least you do have a choice option. I am a firm believer in surgery however i was never faced with such a life changing surgery.

    I do not have kids but i agree with you that your kids are something to consider. I know that i have been and will continue to suffer as much as necessary to be around for my wife.

    Even if the surgery doesnt cure you it is likely it will buy you more time than without the surgery.

    I will keep you in my prayers.

    Jeff
  • steved
    steved Member Posts: 834
    Thank you all
    Thank you to all those that have posted their responses- as a group your kindness made me weep. I feel priveleged to be able to access such a wise thoughts.

    Mags/ Winter MArie/ Phil/ Jeff/ Vickilg/ Donna/ Robin- your caring words mean a lot and I appreciate them. I am not looking for solutions in this as I don't think there is one but your kind words make the decision easier to see.

    Sundance your clear thinking is as ever incredibly appreciated.

    Taanstfal- I can always rely on you to have another perspective and the thinking you bring from that angle is invaluable.

    TAra the pure length of your journey always means your wisdom shines through in your post.

    Heather/ Tommycat- I appreciate your special perspectives as parents of young children, which I think is a component of our journeys that provides different challenges, that I love your thoughts on.

    I talked thing through with my wife last night and have told a couple of close colleagues and friends at work. My decision at present which I think I started to make while putting my first post up (so often simply writing things brings a clarity to our thoughts) is to proceed with putting plans towards the surgery together. It is through getting the details of it planned that I will know more of its potential and can make a final decision to proceed or not. I have arranged to meet the surgeon with my oncologist and will meet with the enablement team (who do prosthetics and rehabilitation) to get a clearer idea on the level of disability I will face. They are developing a team of surgeons from around the country and perhaps from DEnmark together to work on the details and I will work onthem with it. I can pull out at any time.

    I talked with my wife also about how we tell the children. I would appreciate other people thoughts on how they approach this. So far we have told the kids teh stuff we KNOW- I have cancer, I have a sore leg, I am on treatment. We have not told them the stuff we don't know including leaving out the 'it is going to kill me one day' aspect thinking that it is the uncertainty they struggle to manage and process. I don't think there is a 'right way' of handling the kids but woiuld like to know others' thoughts.

    Again thank you all for your kind and wise comments- you are truly overwhelmingly brilliant.

    steve
  • pepebcn
    pepebcn Member Posts: 6,331

    What a tough post to read. I
    What a tough post to read. I am so sorry that you are faced with such a gut wrenching decision but the upside is that at least you do have a choice option. I am a firm believer in surgery however i was never faced with such a life changing surgery.

    I do not have kids but i agree with you that your kids are something to consider. I know that i have been and will continue to suffer as much as necessary to be around for my wife.

    Even if the surgery doesnt cure you it is likely it will buy you more time than without the surgery.

    I will keep you in my prayers.

    Jeff

    Feel so sorry my dear friend.
    just remember family is wonderful life too has my opinion. But only you can't take such a intimate decision my dear friend!
    Hugs, blessings and god vibes from here.
  • pepebcn
    pepebcn Member Posts: 6,331
    steved said:

    Thank you all
    Thank you to all those that have posted their responses- as a group your kindness made me weep. I feel priveleged to be able to access such a wise thoughts.

    Mags/ Winter MArie/ Phil/ Jeff/ Vickilg/ Donna/ Robin- your caring words mean a lot and I appreciate them. I am not looking for solutions in this as I don't think there is one but your kind words make the decision easier to see.

    Sundance your clear thinking is as ever incredibly appreciated.

    Taanstfal- I can always rely on you to have another perspective and the thinking you bring from that angle is invaluable.

    TAra the pure length of your journey always means your wisdom shines through in your post.

    Heather/ Tommycat- I appreciate your special perspectives as parents of young children, which I think is a component of our journeys that provides different challenges, that I love your thoughts on.

    I talked thing through with my wife last night and have told a couple of close colleagues and friends at work. My decision at present which I think I started to make while putting my first post up (so often simply writing things brings a clarity to our thoughts) is to proceed with putting plans towards the surgery together. It is through getting the details of it planned that I will know more of its potential and can make a final decision to proceed or not. I have arranged to meet the surgeon with my oncologist and will meet with the enablement team (who do prosthetics and rehabilitation) to get a clearer idea on the level of disability I will face. They are developing a team of surgeons from around the country and perhaps from DEnmark together to work on the details and I will work onthem with it. I can pull out at any time.

    I talked with my wife also about how we tell the children. I would appreciate other people thoughts on how they approach this. So far we have told the kids teh stuff we KNOW- I have cancer, I have a sore leg, I am on treatment. We have not told them the stuff we don't know including leaving out the 'it is going to kill me one day' aspect thinking that it is the uncertainty they struggle to manage and process. I don't think there is a 'right way' of handling the kids but woiuld like to know others' thoughts.

    Again thank you all for your kind and wise comments- you are truly overwhelmingly brilliant.

    steve

    Steve , no options of a new chemo, Regoranfenib , to try to
    shrink the tumor and then may be ciberknife or so?
    Hugs my friend!
  • thingy45
    thingy45 Member Posts: 632
    steved said:

    Thank you all
    Thank you to all those that have posted their responses- as a group your kindness made me weep. I feel priveleged to be able to access such a wise thoughts.

    Mags/ Winter MArie/ Phil/ Jeff/ Vickilg/ Donna/ Robin- your caring words mean a lot and I appreciate them. I am not looking for solutions in this as I don't think there is one but your kind words make the decision easier to see.

    Sundance your clear thinking is as ever incredibly appreciated.

    Taanstfal- I can always rely on you to have another perspective and the thinking you bring from that angle is invaluable.

    TAra the pure length of your journey always means your wisdom shines through in your post.

    Heather/ Tommycat- I appreciate your special perspectives as parents of young children, which I think is a component of our journeys that provides different challenges, that I love your thoughts on.

    I talked thing through with my wife last night and have told a couple of close colleagues and friends at work. My decision at present which I think I started to make while putting my first post up (so often simply writing things brings a clarity to our thoughts) is to proceed with putting plans towards the surgery together. It is through getting the details of it planned that I will know more of its potential and can make a final decision to proceed or not. I have arranged to meet the surgeon with my oncologist and will meet with the enablement team (who do prosthetics and rehabilitation) to get a clearer idea on the level of disability I will face. They are developing a team of surgeons from around the country and perhaps from DEnmark together to work on the details and I will work onthem with it. I can pull out at any time.

    I talked with my wife also about how we tell the children. I would appreciate other people thoughts on how they approach this. So far we have told the kids teh stuff we KNOW- I have cancer, I have a sore leg, I am on treatment. We have not told them the stuff we don't know including leaving out the 'it is going to kill me one day' aspect thinking that it is the uncertainty they struggle to manage and process. I don't think there is a 'right way' of handling the kids but woiuld like to know others' thoughts.

    Again thank you all for your kind and wise comments- you are truly overwhelmingly brilliant.

    steve

    Kids
    Again Hi Steve,
    I did not mention it before in my reply earlier, but I have been there were you are now with my husband. He lost his left leg and was able to function very wel after rehabilitation,walking, driving etc. I was amazed how quickly he adapted, Ofcourse every case is different.
    Your kids are very young and they will understand part of it, kids are also very resilliant.
    They wil understand that their Daddy is ill, but that the doctors are trying to make him better. That it might kill you ( your expression in your post) is not on the order right now. If it get to that point then there is time enough to inform them of that possibility, if you tel them now then they will worry every day for something we all hope will not happen for a long long time.
    Ask your team of doctors if there are books for children how to deal with illnes of a parent.
    I am glad that you have made a decission and are moving forward. Keep your options open.
    My thoughts and prayers are with you and your family.
    Marjan