Anyone know anything about mets to the sacrum?

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LauraCF
LauraCF Member Posts: 27
in Colorectal Cancer #1

A couple of years ago my partner was diagnosed with rectal cancer.  He went through the chemo and radiation, the surgery, and then the follow-up chemo. All signs pointed to his being NED, except for a nagging lower back pain that kept getting worse. 

We recently discovered that my partner's cancer bypassed the lymph nodes, the liver and the lungs and went directly to his sacrum (actually, the tumour was there at the time of diagnosis but it was tiny and easily missed on the PET scan). He's now classified as terminal.  Not a great thing to hear.  

This tumour is the only sign of disease in his body; it's a single, small, slow-growing tumour.  His blood work is annoyingly perfect. He's otherwise in pretty good health, all things considered.  Fortunately, there is surgery for this, and he's being lined up for it. The pain is getting worse, of course, and will do so until the tumour is removed.  The surgery involves a partial resection of th sacrum to remove the tumour, which is fairly low on the bone. We do know that without the surgery we'd be facing a long, slow, and agonizing death.  This way he has a chance, at least.  

Does anyone know anything about this kind of surgery?  Has anyone here been through this? We know this situation is quite rare, and so there are virtually no stats about survival rates or how well people do after what is a very serious surgery to the lower spine, but since this is a busy forum I thought I'd ask anyway. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    Racking my brain

    I'm trying to remember anyone on the forum that may have had the Cancer spread to the sacrum. It sounds familiar, but I'm not coming up with a name. 

    I hope someone here at least knows something about it and can help you with information.

    TRU

  • mozart13
    mozart13 Member Posts: 118
    #3
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    Try other colon forums, I've

    Try other colon forums, I've seen it mentioned on one of the other forums on the net.

    Hope every thing goes well!

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #4
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    Single, small, and slow

    Single, small, and slow-growing, removable with surgery, but considered terminal? Because it's in the bone? Hard to accept from here, so I can only imagine your feelings. I've never heard of mets jumping to the sacrum, I'm sorry this particular version of crc plagues your man, I hope he catches a break or three, dealing with this................................Dave

  • lola07
    lola07 Member Posts: 1 Member
    edited January 2017 #5
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    Sacrum met

    I've been reading lots on here over the last 3 years but this is my first post. I wanted to reply to you beacause my husband was diagnosed with colon cancer and a single met to the sacrum in December 2012. The only sign he had at first was a nagging back pain that got steadily worse.Unfortunately he passed away on September24th last year after fightihg this with everything he had. He was treated in Paris where we were living at the time and after Folfox chemo he had radiotherapy on the met. This seemed to kill the met until May last year when the pain returned. He also had multiple mets in his liver, but i just wanted to let you know that the radiotherapy seemed to work for him for quite a long time.I hope this helps and gives you some hope, which is what each and everyone of us needs.

  • LauraCF
    LauraCF Member Posts: 27
    #6
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    Thanks for the replies.

    Thanks for the replies.

    I think the reason this is considered terminal is that the tumour seems to be treatment-resistant.  It grew, albeit slowly during all of the radiation and chemo.  Apparently the radiation to the original rectal tumour also would have inadvertently targeted the sacral tumour.  Chemo may have slowed it (though we'll never know) but obviously didn't kill it.  

    Radiation seems to be out of the question as he has reached the maximum.  That's why the surgery is the optimal option.  We don't dream of a cure, although I guess anything ispossible if not likely, but even having a few more years would be good.  

    I do have to say that this has brought us much closer.  Every day seems like a good day now.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited January 2017 #7
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    Dear Friend,

    My rectal cancer was sitting right on the tip of my tail bone so when I had the operation the surgeon remove some bone as well Thank god with clear margins. Your situation is different. 

    wish you the best possible outcome.

    Laz

  • LauraCF
    LauraCF Member Posts: 27
    #8
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    Huh.  Well, the new surgeon

    Huh.  Well, the new surgeon we met this week is not so sure we're dealing with metastasis -- might be just that the original tumour grew into the bone.  Makes sense to me, since there was no cancer in the lymph nodes around the tumour.  Anyway, hs also suggested that there is a new and much more powerful, targeted radiation that might be a far better option than the surgery.  We need a new PET scan and biopsy to be sure, but at least things will start moving now. 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited February 2017 #9
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    LauraCF said:

    Huh.  Well, the new surgeon

    Huh.  Well, the new surgeon we met this week is not so sure we're dealing with metastasis -- might be just that the original tumour grew into the bone.  Makes sense to me, since there was no cancer in the lymph nodes around the tumour.  Anyway, hs also suggested that there is a new and much more powerful, targeted radiation that might be a far better option than the surgery.  We need a new PET scan and biopsy to be sure, but at least things will start moving now. 

    Seeems a cause for cautious

    Seeems a cause for cautious optimism. I hope you'll tell us what the plan is, when things are set.........................Dave

  • LauraCF
    LauraCF Member Posts: 27
    #10
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    We are now both so angry with

    We are now both so angry with our inept system.  It has been FIVE MONTHS since this tumour was discovered.  Nothing has been done.  We've seen the oncologist and two surgeons.  Everyone talks about possible treatment options, but NOTHING has been done.  And we now have the results of the latest PET scan -- and guess what?  The tumour is now TWICE the size it was back in October.  Gee, d'ya think?

    We live in BC so you don't get a second opinion.  You get the BC Cancer agency.  Several of them consult on each case.  Apparently they finally met yesterday to discus our case.  But can we get a call from any of them?  Apparently not, even though we were told we would.

    We are so sick of doctors and their BS. All of them.  They talk a great line, but nothing gets done.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #11
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    LauraCF said:

    We are now both so angry with

    We are now both so angry with our inept system.  It has been FIVE MONTHS since this tumour was discovered.  Nothing has been done.  We've seen the oncologist and two surgeons.  Everyone talks about possible treatment options, but NOTHING has been done.  And we now have the results of the latest PET scan -- and guess what?  The tumour is now TWICE the size it was back in October.  Gee, d'ya think?

    We live in BC so you don't get a second opinion.  You get the BC Cancer agency.  Several of them consult on each case.  Apparently they finally met yesterday to discus our case.  But can we get a call from any of them?  Apparently not, even though we were told we would.

    We are so sick of doctors and their BS. All of them.  They talk a great line, but nothing gets done.

    I am horrified!

    This is disgusting neglegence. Cancer isn't something to be dallied with.

    And why can't you get a second opinion?!! That should be your right as a human being. Is someone forced to move just to get qualitly care, in your country? Is it a law of your province only or all of Canada? 

    I am so sick to hear this news, and the way your partner has been mistreated. I will send up prayers and my most sincere and heartfelt vibes that something will happen soon, and the tumour will be dealt with, with no serious consequences. 

    Cyber hugs!

    TRU

  • LauraCF
    LauraCF Member Posts: 27
    edited March 2017 #12
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    Thanks for the good thoughts.

    Thanks for the good thoughts.

    The BC  Cancer Agency is part of our universal health care system.  I don't think there even is private cancer care here.  Who you get within the system is luck of the draw, basically.  We seem to have drawn the short straw somehow; a whole team of doctors and somehow we fell through the cracks anyway.  

    If the surgery takes place it will have severe physical consequences, no doubt.  We'll find out tomorrow what treatment he'll be offered, whether it be surgery or radiation. 

  • Jeff's mom
    Jeff's mom Member Posts: 20
    edited March 2017 #13
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    sacral cancer

    Through a PET scan, my doctor has identified a tumor on my sacrum.  He said in his 25 years in oncology, it is the first time he's seen a cancer bypass the lymph nodes, liver and lungs and go straight to the bone.  He's not so sure it's mets and has ordered a bone biopsy on Tuesday to see if it's the same SRC that I had in my colon.  I am in a tremendous amount of pain, and have just been started on small doses of oxycodone, which only takes the edge off the pain.  My CEA is 995, and going up all the time.  The doctor still thinks there is a chance I'll "get better" with more Chemo and Radiation...I'm not so sure.  I guess I'm at the mercy of my onc., since his nurse said he won't see me again until I've had the biopsy and won't give me anything else for pain.

  • LauraCF
    LauraCF Member Posts: 27
    #14
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    Sacral

    Sorry I missed you post.  We've had a whirlwind of activity, finally, and are about to get some actual treatment.

    It is entirely possible for cancer to hop from colorectal to the sacrum without spreading to liver, lung, or even lymph nodes.  It is rare, but it happens often enough that there are specific treatments; surgery to remove the tumour, or Stereotactic Radiation, also called CyberKnife.  This is exactly the situation my partner is in. Repeat PET scans show no cancer anywhere else in the body and his blood work so far shows no evidence of disease. He has a small tumour on one side of the lower sacrum; that's it.

    We have been told that chemo would not be of much use in his case. After many months of waiting, during which his pain levels increased exponentially, we are finally going to embark on a week of the radiation.  We've been told that if the radiation fails to stop the progress, the surgery is still an option.  Because of the location of the tumour, the surgery probably would not have any truly dire consequences.

    There are few stats on survival rates for this specific situation. 

    As for the pain, your doctor should be making sure that you are comfortable.  My partner will be on pain relief, as much as he needs, until the treatment is done.  Insist that you be given enough meds to allow you to function and at least enjoy your day as much as you can.

    Let us know how things are going for you.

     

  • Jeff's mom
    Jeff's mom Member Posts: 20
    #15
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    Sacral CA

    Wow!  Thank you LauraCF for your post.  I'm glad to hear you have heard of this happening before.  I have been waiting since March 7th for results from the bone biopsy, but have heard nothing yet.  I have an appointment with my oncologist on Friday...Hopefully I'll know more then.  I definitely will insist I be given more pain meds. Right now, the pain is almost unbearable even though I'm taking 4 pain pills a day.  I'm really tired of all this.

  • LauraCF
    LauraCF Member Posts: 27
    #16
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    It is abusive of your doctor

    It is abusive of your doctor to skimp on the pain meds.  My partner is up to about 50 mg dilaudid daily, both time-release and regular. Seriously, without them he would be literally screaming in agony 24 hours a day, and I am not exaggerating for effect.  Bone cancer HURTS.  It is the worst symptom. If your doctor is recalcitrant, canb you go somewhere else for help? 

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    edited April 2017 #17
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    sacrum

    My second dx was cancer of the sacrum with heavy right side involvement.  I was told to put my affairs in order.  Several doctors read my mri and came to the same conclusion.  My Dr. at Sloan, Dr Phil Paty, was not totally convinced.

    Ended up I had an infection, so bad it was eating bone, making scar tissue and looked very much like cancer.  Pills for a couple of months and I got better.  I am not saying that your partner doesn't have cancer, but he should have a biopsy to confirm.  I was scared to death for weeks before my surgery.  PTL, I am not dying of anything I know of other than old age and I am happy with that.

    Best wishes,

    Rick

  • LauraCF
    LauraCF Member Posts: 27
    edited April 2017 #18
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    RickMurtagh said:

    sacrum

    My second dx was cancer of the sacrum with heavy right side involvement.  I was told to put my affairs in order.  Several doctors read my mri and came to the same conclusion.  My Dr. at Sloan, Dr Phil Paty, was not totally convinced.

    Ended up I had an infection, so bad it was eating bone, making scar tissue and looked very much like cancer.  Pills for a couple of months and I got better.  I am not saying that your partner doesn't have cancer, but he should have a biopsy to confirm.  I was scared to death for weeks before my surgery.  PTL, I am not dying of anything I know of other than old age and I am happy with that.

    Best wishes,

    Rick

    There has been no biopsy, and

    There has been no biopsy, and nobody is planning on doing one, either.  But I have to say that I would have though -- and did think -- that it would be a logical first step.  And yes, it has occurred to me late at night that perhaps this situation is so odd it might be infection (no lymph node involvement at the original tumour?  No evidence of disease anywhere else?), but of course my rational brain says that's just wishful thinking.

  • tranquila
    tranquila Member Posts: 2
    #19
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    How are you doing LauraCF's partner & Jeff's mom?

    I'm wondering how you are both doing.  MY dad lives in France and is dealing with inept doctors who do not know what to do - dad has a 5cm tumour in his sacral cavity, and because they have never seen such a tumour they are saying it is not cancer, and not proposing a treatment or a biopsy! It showed up as SUVmax 10.9 on his PET scan.  He is a rectal cancer survivor of 20 years and they are saying they've never experienced a cancer return - so it's not that. ??! Dad is in pain and they are giving him PARACETAMOL! He hasn't been able to walk for 3 years... He also has a lung tumour and they want to operate on that without knowing if the lung tumour is primary, or mets from this other mass (which they are ludicously saying is not cancer - with no biopsy.) The PEt scan said there was nothing in his bones.  I don't know what to make of it all - I'm exhausted from research and being angry.

    Dealing with inept doctors is the most frustrating thing.  Did you ever get a proper name for your type of cancer?? Are you guys doing ok/better?

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