Tumour attached to tailbone/tailbone removal

Hi guys, I was recommended to come here, and ask this question, as another forum user said LAZZ had experience with this and may be able to give me info.

I'm wondering if anyone on here as been in this situation? Surgeon suspects my tumour may be attached to the tailbone, rather than just the fatty tissue around it. Got sent to another surgeon for second opinion (he is a top man in this field) unfortunately I really did not take to him, feel as though much of what he told us was told as though we already had an understanding of this problem, rather than realising what we were being told was coming across as shock on top of shock. Phoned my own colorectal nurse this am, waiting to hear back from her. Want to talk to my own surgeon, but we left the appt yesterday with me more stressed, worried and scared than I've been since all this started.
The surgeon would be intending to remove tailbone, which we discovered also means making my (temporary) stoma permanent- not something he came out with, I had to pick up on something he said and directly ask the question. That seemed to be the whole feel of the appt- we only got info to straight questions. Anyone who has been in this situation, I'd be really grateful for any info you can give me.
Thanks all,
Shaz

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    Welcome, Shaz

    I am happy to hear that someone recommended you look us up. I am sorry for you diagnosis, and additional stress caused by your second opinion. Some medical personal have no idea how to communicate, though they are probably good at the surgical part.  I had a Doctor tell me once that there is a reason a surgeon becomes a surgeon, becaue for the most part his patients are unconcious on the table, so he doesn't have to delvelope his people skills. Well, something on that line. 

    Laz visits us on occasion, and I think he did have a simialr expereince. I hope he pops in this weekend and sees your post. He is wonderful and would be a great help. I'm sure others can help you as well. 

    Chin up, and try (I know how hard it is) to keep positive. Positive thoughts go a long way. 

    Sue - Trubrit

  • DD3
    DD3 Member Posts: 136 Member
    I'll chime

    in here.  My wife's tumor was thought to be through her colon wall and attached to her uterus (I think).  Some female organ around there.  Truth of the matter is... I think I got chemo brain from my wife's treatments.  Well, that's the excuse I use. Wink

     

    Anyways, two surgeon's thought the same thing.  CT scanned seemed to back them up too.  After her resection the surgeon came out and said nothing had gone through the colon wall and the tumor was contained inside the colon/rectum.  CT's and MRI's are great tools but don't always show without a doubt what truly is going on until they get in there.  Hang in there and stay positive. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I think that's Laz you mean?

    You could look him up in the member search and send him a PM.

    Good luck!

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Friend,

    I had rectal cancer through the wall and sitting on the tailbone. It did not seem to infiltrate the bone, but my surgeon still decided to clip the tailbone. Fortunately that low there are not too many nerves coming out so the rist for nerve senate is low.

    if it's higher up on the sacrum the risk is higher too. If the bone seems to be infiltrating the bo e or its higher up you should get a spine surgeon, because a colorectal surgeon is not qualified to cut bone. 

    By the way the tailbone should not be a factor whether you get a permanent or temporary colostomy. What decides it how much intestine they have to cut away and can they reconnect you to have complete function, because if that is questionable you will have fecal incontinence and they have to go back and do it again.

    the third issue here is to fill up the space where there rectum was removed from otherwise you may have your intestines prolapse into your pelvis. It is more common in women than in man. I chose that option and they took one of my abdominal muscles and a plastic surgeon folded it down to strengthen the pelvic floor. I'm glad I did because I have no problems at all. 

    Let me know if you have any more wuestions and wish you the best outcome.

    Laz

  • traci43
    traci43 Member Posts: 773 Member
    tailbone removed

    I had my tailbone removed a couple of years ago to try to access a tumor without having to go in abdominally. It was not because they thought the tumor was on my tailbone (pathology showed everything was clear). While initially really uncomfortable, I couldn't sit on my butt for over a month, and going anywhere by car was awful, it's fine now.  It was the very end of the tail bone and not up where any nerves are.

    Maybe the reason the stoma will become permanent is becaue he's going to have to remove more intestine and/or rectum so there won't e enough to reattach.  Good luck to you, Traci