help!

kellydinniss
kellydinniss Member Posts: 16
in Colorectal Cancer #1
Hi all, had a very bad day yesterday-went to see my husband steve's colorectal specialist who confirmed he has a local recurrence of his rectal cancer-he was originally operated on 7 years ago and and has been NED ever since until oct 2010 when he developed some pain. PET showed hot spot on pelvic side wall. surgeon now wants to do further course chemo and radiothrapy as the site of the recurrence means it is currently inoperable and then hopefully the tumour will be operable after that but he'll have to have pelvic clearnance including permenent colostomy and urostomy. We were absolutely devastated and just can't believe what is happening. he is only 38 and we have 2 children aged 6 and 3. They also want to consider him for cyberknife radiotherapy-has anyone heard of anything about this. I would appreciate and comfort/help anyone can give me as I am so scared. many thanks.

Comments

  • LindaJS
    LindaJS Member Posts: 20 Member
    #2
    Hi
    That is just devastating
    Hi

    That is just devastating - Im so sorry. My husband James and I are both 33 and we have a 3 year old - he has just been diagnosed (February) as a stage IV. Unfortunately I dont know too much about those treatments proposed for your husband as James has too many dispersed tumours for radio options. But Im sure there are many people on here who can tell you about those treatments.

    What I do know about is the colostomy - as a result of a bowel perforation very recently James has one - which he was very upset about initially - but is quite fine about now. So let me know if you want any advice on that.

    Also Ive just finished a book called "Raising an Emotionally Healthy Child When a Parent is Sick" and found it really valuable.

    Hang in there. Its a tough road - but you arent alone - there are lots of people out there to help & support you all.

    Linda
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    LindaJS said:

    Hi
    That is just devastating
    Hi

    That is just devastating - Im so sorry. My husband James and I are both 33 and we have a 3 year old - he has just been diagnosed (February) as a stage IV. Unfortunately I dont know too much about those treatments proposed for your husband as James has too many dispersed tumours for radio options. But Im sure there are many people on here who can tell you about those treatments.

    What I do know about is the colostomy - as a result of a bowel perforation very recently James has one - which he was very upset about initially - but is quite fine about now. So let me know if you want any advice on that.

    Also Ive just finished a book called "Raising an Emotionally Healthy Child When a Parent is Sick" and found it really valuable.

    Hang in there. Its a tough road - but you arent alone - there are lots of people out there to help & support you all.

    Linda

    Yes, and as soon as we get up and get some coffee...
    we'll get right on it. All of us usually sleep in on Thursdays..........j/k,.............. re currence is always a kick in the drawers but we have to deal with it just like before. Only thing is at least we have an idea of the journey we most likely will go through, which is never fun, but doable.I have an ostomy (permanent) not a problem at all......There will be thers come in to post on this ..Be patient, help is on the way.....love to all 4 of you......buzz
  • Conchal
    Conchal Member Posts: 42
    #4
    checking in w/you
    Kelly--I was searching the csn content for more info about urostomys when i read your post.
    I am a care giver and my wife had a urostomy (permanent) placed after surgery for urethra cancer (surgery as on 4/12). Like you and your husband, we were stunned by the cancer dx and the news that she would have a urostomy, and it was very hard to cope with this news.

    Now the surgery is over and the urostomy is in place, and while she is having some initial problems with this (minor leakage and other issues with all the stuff we have to use) it has been better than we thought it would be--not great, mind you, but better than we expected. This is going to take time but apparently they caught the cancer early--meaning there is no follow up treatment for now but the bag is one of the facets of life we will deal with permanently. We are older than you (50's) and our son is long gone from home, but I am very sympathetic. Dealing with all this is tough and I hope you are faring well since last you posted here.

    Let us know how things are...if nothing else you can just let it out here. I do that at times and it does help me get by.

    Good luck to you!

    Conchal
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #5
    Conchal said:

    checking in w/you
    Kelly--I was searching the csn content for more info about urostomys when i read your post.
    I am a care giver and my wife had a urostomy (permanent) placed after surgery for urethra cancer (surgery as on 4/12). Like you and your husband, we were stunned by the cancer dx and the news that she would have a urostomy, and it was very hard to cope with this news.

    Now the surgery is over and the urostomy is in place, and while she is having some initial problems with this (minor leakage and other issues with all the stuff we have to use) it has been better than we thought it would be--not great, mind you, but better than we expected. This is going to take time but apparently they caught the cancer early--meaning there is no follow up treatment for now but the bag is one of the facets of life we will deal with permanently. We are older than you (50's) and our son is long gone from home, but I am very sympathetic. Dealing with all this is tough and I hope you are faring well since last you posted here.

    Let us know how things are...if nothing else you can just let it out here. I do that at times and it does help me get by.

    Good luck to you!

    Conchal

    Hey Kelly...
    I had Cyberknife in Oct, 2010. I had a met in my lung that would not die with chemo...so they zapped that thing with Cyberknife.... took 4 treatments and it's 100% gone! I did get a radiation pneumonia 4 months later as a result of the Cyberknife but meds cleared it up. Hope that tells ya a little. Best of all to you guys! Take care

    Jennie
  • maglets
    maglets Member Posts: 2,576 Member
    #6
    idlehunters said:

    Hey Kelly...
    I had Cyberknife in Oct, 2010. I had a met in my lung that would not die with chemo...so they zapped that thing with Cyberknife.... took 4 treatments and it's 100% gone! I did get a radiation pneumonia 4 months later as a result of the Cyberknife but meds cleared it up. Hope that tells ya a little. Best of all to you guys! Take care

    Jennie

    Kelly
    I have no experience of these particulars.....just want to say i am stage 4 colon with many mets and still alive and doing well

    important to know....(I hope) that cancer is doable....

    understand that you are both devastated....reocurrence is such a shocker....

    hang in....stay in touch


    maggie
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #7
    Kelly, I have no advice for
    Kelly, I have no advice for you, other than to hang in there. I am on my 3rd occurrance. So I know what a sucker punch you have been through. Hang in there, our prayers and support are coming at ya.
    ((hugs))
    Judy
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #8
    hi kelly
    hi kelly

    sorry you had to come for for your husband.
    7 years NED and now the drama continues.

    I have not had a reoccurence, I hope and pray I never do.
    I have faith it will not happen to me. Real confidence in my treatment approach.
    Real faith unlocks the power of our minds, a huge untapped resource.

    An old friend told me ATTITUDE, ATTITUDE and ATTITUDE.

    You are wise to be scared, I am scared just reading your story. They told me, if your NED for 2 years your pretty well through it. Not from what I have learned here.

    So we all have to live with this constant fear. My approach is to treat death with humour, to accept its reality, one day we will all die. Until then try and be the beauty of your children. they will keep you both focused and strong.

    I have a 5 and a 9 year old, two kids also. I am 44.

    Maybe get some second opinions if you need to, ask lots of questions.
    Lots of research to do, so many positive things can be done. Each in themselves washes away your fears and replaces them with confidence.

    best of health to you,
    hugs,
    pete
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #9
    Hey I am so sorry this is
    Hey I am so sorry this is all happening. I am still in treatment for my diagnosis 6/10. I don't have any suggestions, just wanted to pass along some comfort! Good thoughts, prayer, and vibes to you and your husband.

    Love and hugs, Gail

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