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Sacrum cancer

chamar2
Posts: 1
Joined: Jul 2009

Hi my name is Alan.

My nephew has been diagnosed with sacrum cancer, he is having chemo treatment at the moment.
The surgen reckons that he will need an operation to remove the tumor and that will leave him with dramatic consequences.

Has anybody outhere has heard of some treatment or an operation less dramatic.
Thanking you for your support.

jjhnyc
Posts: 4
Joined: Nov 2009

Hi Alan I have one off the best doctors on the field on spine tumors I just did a surgery on the back remove the tail bone and also part of the sacrum bone he is one off the best in the us and if you want I will give his name and telephone number he safe my life after some may doctors they try to operate I got diagnose with chordoma cancer on the tail bone also part off my sacrum bone was involve .best regards john

driscollpt
Posts: 8
Joined: Nov 2009

Hello John, I am writing to request the name of your doctor which you talked about in your post. Hope you are still doing well after your back surgery. I am scheduled to have a Cat Scan Guided Sacrum Biopsy next week at our local imaging center, but I am a bit skeptical as to whether this should be done by a oncology doctor than by a radiologist. I am wondering how painful this biopsy is while its being done and the pain to expect afterwards as well. As
far as we know at this point the tumor has metastised & as you must imagine I am somewhat afraid as to what is down the road for me. I have just learned all this in the past week after a slew of tests, so it is all really new to me...don't know whether to be scared or not...doesn't sound like a good thing to me. I appreciate any information you can give me
since you've experienced a similar thing. Thank you. Pat

jjhnyc
Posts: 4
Joined: Nov 2009

Hi Pat, well the Biopsy I was painful I not going to tell was not and the recover afterwards takes about 4 days until you cant seat again without any pain my biopsy was done with about 4 Anesthesia and also by a cat scan guided but was less than 30 minutes was done and then they take you to recover room until you ready to go home MY biopsy was done by a doctor on Bellevue hospital center he is a associate professor of radiology DR.H.BRYK a very nice doctor, don’t be afraid because this not the end of road My self I was very afraid but after the test you going say you ready for another one. My doctor the one cure me and safe my life is doctor NARAYAN SUDARESAN and his telephone is 212.876.7575 is the best doctor on the field for tumors and spine surgery also you cant contact me for any questions or what else I cant help you at JOHNHARDEMAN@MSN.COM Pat I wish you good luck on your biopsy .
regards john

driscollpt
Posts: 8
Joined: Nov 2009

Dear John, thank you for being so honest with me. I am wondering what state you are in?
I am in central Nevada near Lake Tahoe. It is so difficult to know which doctor to go to.
As of right now I am scheduled for Dec. 5th at our local imaging center that is state of the art and they tell me fully equipped to handle any situation because I was wondering if this should be done only in a hospital setting. The radiologist is excellent & comes highly recommended. My daughter happens to work at our local hospital and has done considerable research & she has not found any negatives. My primary doctor has assured me that this is perfectly fine. However, I am still concerned & probably rightly so as I imagine anyone facing this would be. Like you say, maybe I will feel differently when it is all over.
Thanks again for sharing your experience with me so honestly. Pat

jjhnyc
Posts: 4
Joined: Nov 2009

My Friend Pat,
I am locate in the New York city area, I wish good luck and best wish on the results and good recover ! you be in good hands and just trust your self you ,god and your family and you be ok. In the future please let me know if I cant help you with anything else .best of luck regards John

Anncan
Posts: 6
Joined: Oct 2004

I'm not a doctor, but I have belonged to a chordoma support group for seven years.

You must be certain that any doctor who touches you, even for biopsy, has experience with chordoma. This is because the tumor can spread very easily by material carried on a glove or instrument.

Nearly everyone in the group followed up with proton beam , the only radiation that really affects chordoma.
Ann

snv123
Posts: 10
Joined: Dec 2009

Hi, Alan
Well i am not aware about this surgery.
Good luck Alan!!

budgett
Posts: 2
Joined: Feb 2010

Ann: I would like to contact you about the Chrodoma support group, you mentioned. My son is 38 yrs old, a single father. He was diagnosed with S. C. and had surgery a month ago at the Mayo Clinic in Rochester, Minnesota.. He is really doing well. Thank you in advance.. LYLA

Anncan
Posts: 6
Joined: Oct 2004

Sorry - been out of touch.

Here's the link: Chordoma Support Group http://www.chordomasupport.org

Contact the manager for an invitation, mention this site. chordomamanagers@gmail.com

ltonioli
Posts: 1
Joined: Aug 2010

My husband was just told 3 weeks ago he has Cancer of the Sacrum, tomorrow he has a Biopsy, what is next and did they find cancer anywhere else? How long before you find all you needed to know. Thank you.

maxlillady
Posts: 1
Joined: Oct 2010

Dear Itonioli, I've noticed you've posted a few months ago, and wondered how is your husband doing? My husband was diagnosed with a sacral chordoma in Dec 2008. He had surgery Jan 2009, and I can relate to your circumstances. In response to your questions: His cancer has not metastasized. As of his last CT, we are still cancer free. It was a learn as you go process for us. Fortunately, we do have a great doctor that has seemed to give us the information as we needed it. I'm still not certain we know all we need to know. The fact these types of cancers are so rare and the patients conditions are so different, it's hard to know exactly what to expect. Best wishes to you and your husband.

sashkinny
Posts: 1
Joined: Dec 2010

Dear, jjhnyc.
i read your post and would be very much appreciate if you can forward me information about the doctor who did you surgery.
My mother was diagnosed with chordoma about 4 years ago. She had surgery for removing this tumor but it grew back. for almost 2 years we were going to Sloan Memorial for chemo sessions (no success), back surgery doctor doesn't want to do surgery again since tumor regrows. So, right now, she's in terrible pain and i'd like to talk to other doctors to get their recommendation on how to improve situation.
thank you in advance.
Alex

Dram5
Posts: 1
Joined: Aug 2012

Hi John,

I am going to undergo a surgery for removal of chordoma tumor on my tailbone (S2) . The tailbone will be removed during thesurgery.
I much appriciate if you could give your thoughts and experince preand post surgery . Do you experince bowel and urine incontinance after surgery. Is it only for short period or permanat. My surgery is on 11th September.

Best regards

Darin

budgett
Posts: 2
Joined: Feb 2010

Alan:: please let me know how you are doing.I just joined this site..THANK YOU LYLA

chrissie1
Posts: 6
Joined: Apr 2010

I had Ewings Sarcoma in the sacrum in 2001, when I was 14 years old. Am now 22, and still cancer free.

Let me know if you have any questions. Hope all is well.

s30464
Posts: 5
Joined: May 2010

Hi - My daughter was recently diagnosed with Ewing Sarcoma of the sacrum. I would love to hear from you, a survivor of Ewings in this area. Did you have surgery, chemo, radiation, or a combination? We are at a decision point in my daughter's treatment and trying to make the best one.

s30464
Posts: 5
Joined: May 2010

Hello - My daughter was recently diagnosed with Ewings of the sacrum, I would love to hear more of your story. Hope all is well. Take care

lost freaks mom
Posts: 1
Joined: Oct 2010

My son was just diagnosed with Ewing's would love more info and some one to relate to!!
Thanks.

towleymom
Posts: 1
Joined: Apr 2012

hi:

My son was diagnosed with a primary sacral tumor 11/1/11. Pre-surgical chemo-cisplatin, Doxirubicin, Methotrexate all ineffective. Total sacretomy 1/18/12. One round of chemo post surgery ifosfamide and etoposide.

Question: Opinions on changing hospitals to do the chemo? The hospital we have been going to is 2-1/2 hours away. Thinking of switching to Yale which is local for us.

Dicko
Posts: 1
Joined: Apr 2012

Hello Alan,

I have cancer in the sacrum which apparently travelled from my original bowel-cancer. I have been through radiation and chemo treatments with more chemo coming imminently. In my case(and it is important to realise that everyone is different), surgery is not a viable option as the risk of damage to my nervous system is too high. This situation may also have a lot to do with the UK approach to cancer care in that the balance between treatment and life-style is the first objective. The American way seems to us over here to be to 'kill it' and cope with the risks. Frankly neither policy is wrong - it's what you personally feel you can cope with.

I would recommend talking to an Oncologist i.e. get a second opinion before going near the operating table! I am not a Doctor or 'medical', but in my case surgery will certainly leave me incontinent and possibly semi-immobile i.e. walking difficulty.

I am also investigating Cyberknife, but again I don't know yet whether the position of the tumor in my sacrum amongst the nerves will preclude this. You could talk to your Oncologist about this or to a hospital near you that has the Cyberknife technology.

I wish you well!

Dick

ruthied's picture
ruthied
Posts: 6
Joined: Sep 2011

hi dick i had a sacrectomy on 12th march my storys on www.helpruthie.co.uk ..i too had bowel cancer that spread high up in the rectum and all up to the sacrum bones 1 to 4 ...im 5 months on walking and my only disability is i pee usig a catheter and i have a colostomy bag ....my surgeons name is dr sagar leeds general hospital uk,he carries out most of the uks sacrectomies with good sucsess...my only worry is my cea went to 31 today but all my scans are clear..im not incontinent either so i hope this helps ruth

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