CSN Login
Members Online: 1

You are here

Bone Island

lobbyist0724's picture
lobbyist0724
Posts: 448
Joined: Sep 2016

Hi all, I had my CT Scan back in July, it's NED. But my doctor also mentioned there is a bone island on the pelvis bone. They believe it is just a bone island as it was there in 2016 on my first CT and the size hasn't changed at all. But they also offered me a bone scan if I would like to, and it is optional.

I would like to ask for your advice, do you think it is necessary to have the bone scan?

As I am a bit concern about the COVID as well.

Thank you all.

 

Stay healthy and stay safe.

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

Any facility who does them should be super cautious regarding contamination problems.

Have the scan and get your questions answered. And relieve anxiety for you.

A fulll body bone scan was one of the third diagnostic test I had.  Found on the ultrasound were the kidney and liver masses.  Then the news to me, referral to an Onc. MD, next day a chin to pelvis CT, and then the bone scan to rule out mets to the bones.  After that all locally, then I was referred to the surgeons at a teaching hospital for review of all tests to see what they could do for me.  Luckily, surgery - to remove R. kidney, L lobe of liver and a set of nodes (all cancerous), Gall bladder and duct due to congenital defect, plus other wedges of liver to test for cancer or cyst.

Get on with your life, and hugs from me,

donna_lee

lobbyist0724's picture
lobbyist0724
Posts: 448
Joined: Sep 2016

Thank you Donna for your suggestions, always enjoy reading your posts with the details and technical information.

I was thinking the CT w/wo contract should be able to give confirmation, but I will go for it as suggested. 

Good health to you and all of you!

a_oaklee
Posts: 564
Joined: Nov 2013

I think that whether or not you have the bone scan, at this point in time, is mostly related to your own personality.  If you wait, because of fears of Covid, or because it hasn't changed at all in 4 years, will it torment you to not know?  Your doctor seems relaxed about the decision being up to you.  I would like to think, if the doc thought it was something then they would just be scheduling a bone scan for you. 

I would want to keep track of the measurements myself and have those reports in hand.  Did the radiologist notes say there should be a follow-up bone scan? 

I'm a senior citizen and I was diagnosed with a bone island back in my 20s.  It didn't do anything.  My son also diagnosed with one in his 20's.  So far so good.

I am here for my husband.  When his RCC was found via CT scan, we did a bone scan right away.  He was having extreme pain in his hip, shoulder, back and there was reason to suspect that more was going on than just the 4 cm renal tumor.

The CT wont show bones very well.  My husband always has CT PET scans because they do show the bones, and whether or not its active.  Bone scans work too.  They also use an MRI to look at detailed structures of his spine.

I don't know your age, or family history, etc., but weren't you Stage 1 back in 2016?  I think your future looks bright.

My husband was diagnosed at Stage 4 with mets in bones and lymph nodes.  It's been 9 years now and hes enjoying life.  Treatments are so much better now than in the past. 

Good luck to you.  Just do what makes you feel the most comfort as you continue to get your scans and take care of yourself.

 

lobbyist0724's picture
lobbyist0724
Posts: 448
Joined: Sep 2016

Dear a_oaklee, thank you so much for taking the time to respond. I am always touched with the family here.

 

I am 46 and was diagnosed 4 years ago when I was 42. I have no family history of kidney cancer or from more distant relatives. So my Urologist did not ask me to do a genetic test. On the other hand, I am also fighting with some anxiety issues (I think we all do) and wonder will the scan light up something.

But I totally agree with you, my doctor said it is not necessary but if it is being offered, it is not gonna hurt to take it. If there is nothing, it is good to know, if there is something, it is better to know! So I will do the scan! Thank you.

Wish you and your husband the best! Take care!

 

 

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

I've had a bone island for at least 5 years.  In fact no one said anything about it for the first two years.  In 2017 it was mentioned, for the first time and talked about how it has not changed since 2015.  No one at MD Anderson said anything about it for the first two years. 

 

I asked about the bone island and they told me if I had bone mets my alkaline phosphatase levels would be high. 

 

Good luck!

 

 

lobbyist0724's picture
lobbyist0724
Posts: 448
Joined: Sep 2016

I think that's what is happening to me too. I guess that might have missed it years ago but found it this time. Then they compared and realized it was there 4 years ago as well.

I saw your profile and understand you had another tumor after the chrome in 2015, but what I read is that two early pT1a low-grade tumors will always be better than a recurring one. All the best!!

a_oaklee
Posts: 564
Joined: Nov 2013

Lobbyist:  I also appreciate you commenting back.  Thankyou.  I like the decision that you are making that you think is right at this time.  Re anxiety and stress...nothing wrong with searching out help for that too.  There are many options to help. 

Medic:  I want you to know my husband had many bone mets with profound damage.  They were extremely painful.  Despite all the damage and bone loss he never had an abnormal blood level.  He still has not had abnormal values of any blood test.  His indicator was strictly pain.  The point is, everyone is different.  If you are having pain that doesnt go away, lab work alone is not enough to determine what is going on.  

On a positive note, there is treatment for bone mets.  Radiation to the bones works for most people.  At least its non-invasive.  Others choose different methods.  

My husband hasnt  had any new mets since 2013!  We are really happy about that.  Scary to be Stage 4, but people are living with it.

Best wishes to everyone.

lobbyist0724's picture
lobbyist0724
Posts: 448
Joined: Sep 2016

Thank you for the information, I will definitely share with others I know from other forums!

Subscribe to Comments for "Bone Island"