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Metastasis to spine now

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

Hi, I had bad news last Thursday.  After hurting in lower back, I went to doctor thinking I had bladder infection, so the doctor sent me over for CT scan , it showed a spot on my lower spine L5. Then sent over to get MRI and it showed  3.8 x 3 cm mass. Four different doctors said that day it looked like kidney cancer. The next day I had a biopsy and then Pet scan,  I was told that it was cancer from the kidney.  Praise the Lord no other cancer though.  So the fun starts again. 

In 2016 I had left kidney removed with 9 cm tumor. Was told cancer free. 

 

daisybud's picture
daisybud
Posts: 452
Joined: Jan 2016

Sending prayers

eug91's picture
eug91
Posts: 120
Joined: Jan 2019

You beat this once before - you'll do it again. Sending you prayers. We're with you.

AliceB1950's picture
AliceB1950
Posts: 28
Joined: Jun 2019

I'm so sorry.

Manufred's picture
Manufred
Posts: 225
Joined: May 2017

Bryn,

Unfortunately this is not an unusual thing to happen after nephrectomy, mine came back after about 2 years.  There are now ways to manage this and perhaps my own history (on my profile page) will be of interest to you.

Whichever way they or you choose from here, stay strong and best of luck.

Fred.

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

Sorry to hear this news, Bryn.  Have you met with an oncologist yet...make sure it is one that understands and has experience with RCC.  I'm wondering about some type of radiation to kill the tumor.  I hope they can do this so you can avoid taking meds. 

Wishing you only the best!

Stub

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i am sorry

you got a terrible shock

 

There is quite a few on my English site who had similar 

radiotherapy and Chemo have either completely resolved or maintainEd for many years

 

sorry i know you hate that

 

but  I am praying hard for you

 

Annie

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

In one week I have had CT scan , MRI,  Biopsy,  Pet scan,  met with Radiologist,  20 radiation treatment scheduled,  Brain MRI scheduled,  and got appointment with oncologist.  I am blessed to have answers so fast. Wow 

We have peace, and trust in these guys. Thank you so much for best wishes 

Praying hard for each of you 

 

a_oaklee
Posts: 421
Joined: Nov 2013

Hi Bryn.  Sorry to hear about your spinal mets.  My husband has had them too.  We see a neurooncologist and radiation oncologist.  His mets in the spine were treated with cyberknife.  You do it once.  Not 20 times of regular radiation.  If you could find a place that has cyberknife it might be worth checking out.  We were told they use it to be very precise and not involve the spinal cord.  All of the radiation that my husband has had was tolerated well and did not come back in those sites.  Good luck to you.

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

Did your husbands cancer die?

a_oaklee
Posts: 421
Joined: Nov 2013

The choice of words from all 3 oncology radiology specialists is "no metabolic activity".   They go on to say that we should consider it "dormant".   It no longer "lights up" on the pet scans.   He had cyberknife in 2012, and again in 2013.  Everything has been clear since then.  

Iggyrip
Posts: 43
Joined: Sep 2016

Hello Bryn,  My name here is Iggyrip. I too had a kidney removed and told I was clear. (Stage One). Well, it came back to my spine (L1)  two years later. I had radiation to shrink the tumor but it did not work for me. When that did not work an Interventional Radiologist went in and burned it out along with a new tumor in L5.  My pain has gotten better and I am currently on Sutent which has shurnk my tumors thank God. My last PET scan showed no new tumors. I'm sorry you are doing through this. I know what it is to feel lucky being a Stage One then having it come back changing everything.  Best wishes on your treatement. 

 

Iggyrip

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

BIG HUGS 

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

Question,  were you affected Anyway by the side effects of the radiation for the chemo? Also, cancer being in the bone of your spine has any of your doctors mentioned about the bones breaking and being paralyzed? Thanks 

Iggyrip
Posts: 43
Joined: Sep 2016

Hi Bryn, I had no side effects during Radiation treatment, but it failed to shrink my tumor. I never received Chemo. From what I understand Chemo is not effective for Kidney Cancer Good thing an Interventional Radiologist was able to come in and burn out most of it (through a procedue called Ablation), and a new one that appeared. As for the breaking bones, I am well aware of the effect the Cancer has had on my bone  so I will be receiving a med to make my bone stronger. I forget the name. The metatisis has caused me back pain that shoots into my legs, but since the Ablation, I have been feeling better. 

Best wishes,

Iggyrip

 

HLee
Posts: 12
Joined: May 2018

I'm so sorry Bryn.  i had left kidney removed in Sept 2017 and part of my left lung removed in Nov. 2017.  So far i am clean. What treatment were you on?  You are in my prayers. We seve a great God.

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

We do serve a great GOD, I was nit on any treatment , my urologist said cancer free. I am leaving everything in GOD"s hands. 

a_oaklee
Posts: 421
Joined: Nov 2013

Yes, paralysis has been mentioned.  We do everything we can possibly do to have a good outcome.  For my husbands spine we see a neurologist and neurooncologist and go to a major medical center that has a cyberknife.  We did not stay local as they dont see very many patients and dont have state of the art radiology and specialist like interventional radiologists.

If you have MRIs every time you are scheduled for your regular scans I think they can help you before the cancer advances.  There is quite a bit they can do.  Some people have also had cementoplasty to fill in the damaged bone.  We were told to think "termite damage" as to the condition of my husbands bone mets.  Through the years the bone has regenerated with new bone.  So its stronger.

From the beginning we immediately started with a bone agent.  The two choices are xgeva and zometa.  One is a monthly shot, and the other an infusion.

My hub also is on targeted therapy.  Mind you his diagnosis was in 2012 and that was the thing to do at the time.  Now they tell us to just stay on it because he is doing so great.  He has been on Votrient, Affinitor and Inlyta since 2013.  (Votrient 3 months, Affinitor 6 months, and then Inlyta).

In all my reading on smart patients and here I have only heard of one patient becoming paralyzed.  He did not have the best of care.  So possibly it might have been prevented.  At least his wife thought so.

My hubs radiation treatments had no side effects.  He had the 20 times to a hip, and also a shoulder.  Cyberknife twice to two spots on vertebrae.

He is more careful now.  He doesnt jump down from his pickup bed anymore.  And hes not supposed to lift anything over 5 lbs..  He is also staying off of ladders.  Psychologically that is hard to not do the manly things he used to do.  He does enjoy going to work every day.

Bryn1108's picture
Bryn1108
Posts: 81
Joined: Jul 2017

Wow, that is awesome about your husband,  so much encouragement for me. Thank you so much . Yes, my new oncologist is sending me to Mayo Clinic Jacksonville Fla. She said they will have more advanced knowledge and more choices.  Praise for your husband health.  

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