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Cyber surgery didn't work

srbelle1
Posts: 123
Joined: Jul 2013

my husband had scans today and the met that received cyber surgery looks larger than before; We have an appointment with the oncologist on Monday but at this point with nothing more showing, I want surgery, not biologic therapies which may be time-limited.

although it could be much worse, it is not good. I am so frustrated with the primary that I fired yesterday. Somehow the elevated numbers at the end of October did not cause him concern.

i truly hope the onc will be onboard with surgery since any growth can result in compression and it seems that a single met could paralyze and kill him.

any thoughts from those who know more? I have a law degree and NO medical background so why did the lab numbers alert me and not the primary???

i welcome your thoughts; you may not all be medical folks but you know this disease.

HELP!!!

sarah

NanoSecond's picture
NanoSecond
Posts: 514
Joined: Oct 2012

Sarah, are you also enrolled at www.SmartPatients.com?

If not, please go there, register, and then post your question.  There is a lot more expertise available there that will greatly assist you in going forward.

srbelle1
Posts: 123
Joined: Jul 2013

I am enrolled at Smart Patients and read the posts but I cannot figure out how to ask or begin a line of questions.

sarah

NanoSecond's picture
NanoSecond
Posts: 514
Joined: Oct 2012

Sarah,

From the opening page just click on the button that says, "Start a Conversation".

Then fill in the Title box with something short and descriptive such as, "Newbie with questions about Cyberknife" or whatever you choose.

Then fill in the Text box with your questions or comments.  You could simply copy your initial posting here.

In the Tags area it will automatically enter "kidney cancer" (assuming that is what you registered under).  You can add more descriptive tags as well, such as "Cyberknife"; but don't worry about this.  Robin, the administrator, can add additional tags later as necessary.

Then just click on the "Post" button.

Don't be afraid of trying this out.  You need to get the folks over there involved in your situation ASAP.  In particular, Susan P is an expert on all things having to do with radiation oncology.

srbelle1
Posts: 123
Joined: Jul 2013

thanks for the directions; will try the question there. Just spoke with radiologist who toled me that the met has not grown and that the cat scans from July and yesterday were done by different equipment and calibrations matter.

he also said that the abdominal scans were clean and the bone scan showed nothing either.

as for surgery, said it could be something to look into but his recommendation would be wait and see since he is being closely monitored and has no symptoms or appearance of fractures. The final piece was that the laminectomy was successful and good bone was growing around the hardware.

wait until symptoms is NOT an option but for now, at least there is a breath of peace.

will definitely check on smart patient and ask for information there. Thanks for the direction.

sarah

foxhd's picture
foxhd
Posts: 1864
Joined: Oct 2011

I will only say that some drs, look at patients and diagnosis differently. Some like mine really want to cure me. It motivates them. Some look at the diagnosis and are thinking that you are going to die. They only do the wait and see. They watch the demise and the patient is not the priority. It is their observation and learning from the patients demise that notivates them. These docs don't usually have much too share during appointments because they are not proactive.

srbelle1
Posts: 123
Joined: Jul 2013

fox, your comments are so true and this primary has chosen medicine for some reason that is clearly NOT to help people.

he told me that he didn't know what creatinine meant which left me speechless since my 98-year-old mother-in-law knows; this guy is an idiot who has no curiosity or conscience.

sarah

a_oaklee
Posts: 148
Joined: Nov 2013

My husband has a similar case to your husband.  After the laminectomy he had cyberknife.  A year later he had a new met spot and had cyberknife again.  It's been two years now and he is due for scans in December.  My husband did not have new tumor at the cyberknife location.  It grew on a different vertebrae.  I used to read ACOR.  There were people there who were opposed to radiation of the bones/spine.  For us, it's a personal decision and it has to do with some degree of pain management and quality of life.  We also had a CT/PET scan done at a different site close to home.  It was a mistake.  Not as thorough.  No measurements.  Now we make the trip to the original medical center so that the scans are done at the same location, same machine.  Is your husband getting Xgeva?

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