need advice on testing for bone cancer

[Arkait]

NEED HELP/ADVICE as to what tests can identify a bone cancerous spot.

I had a CT scan this past week, and one 3 months earlier: in both a few

bone mets remain unchanged. But one area at the base of my sternum is of

great concern, as to whether it is from a poorly healed former scar from

open heart surgery in 2011, or cancerous, or both. It's urgent it not

be cancerous, because a second open heart surgery is needed and if

that area is cut again, and is cancerous, it would not heal after the second

surgery cut ! Would a bone scan or a PET scan better determine if the area

is cancerous, since the CT scan can't definitively determine?

To biopsy the site,, would require general anesthesia, which at my age

is dangerous to undergo often. '(I am 81 and a half) Ideas anyone?

[Francesca10]

Honestly, an mri is the best option if you have no metal. Mri is more in depth. A pet scan lights up cancer cells but there is a chance of false positive and it doesn’t look for anything else.

Maybe more nurses besides me can give further advice.

♥️Frances

[Arkait in reply to Francesca10]

Dear Francesca, thanks so much for your suggestion. Apparently the PET scan I had Feb 1st, of this year, detected no active cancer at that time on my inferior sternum.\

I do have an artificial aortic valve of cowhide (but I believe it has a steel rim---so this might

rule out an MRI?). EVen so I would think another PET scan might be the best test, to see if there is an active cancer on the sternum? I have asked my oncologist's nurse, and she is going to follow up tomorrow with a possible PET scan to be scheduled if that would help

determine what is or isn't going on there. My mitral valve is definitely failing and I am filling up with water and in a bad way.

As a side note, I got so mad today when I saw my general practitioner and he insisted

my cancer was a terminal condition. I said "NO, there are lots of women living with it for

years and there are strides being made in immunotherapy that offers a lot of promise."

Even so, he said" no surgeon would operate on my heart due to my having a t erminal

disease, because I might get a stroke or die on the operating table and the surgeon could lose his license".

Jesus, I might die on the operating table, but I am sure to die of heart failure if I don't

get an operation. I'd rather die quickly, than surely and slowly of congestive heart failure.

And who ever heard of a surgeon losing his license because a high risk patient didn't make it !? That's plain crazy talk.

[Red71 in reply to Arkait]

The right surgeon will do your surgery if the cancer isn’t in the wrong place. Many surgeons with experience doing complicated cases will do surgery even if the patient has complications. My 71 year old husband has diabetes and atrial fibrillation and a previous stent. In our city there were 2 surgeons who would do his knee replacement despite his problems. He has done fine.

If you are not seeing a cardiologist, I would trust a cardiologist above your GP for information about future surgery and for treatment for your valve problem. Your GP sounds a little behind the times!

[Arkait in reply to Arkait]

Just found out today, my artifical aortic valve has a steel rim that is NOT magnetic,

so I am eligible for an MRI, and probably need one to resolve exactly what is

going on with my inferior sternum the PET scan and CT scans can't exactly tell.

[Hidden]

Bone scans are usually the best tool to check your entire body for bone Mets as it picks up everything. To define what a spot may be then in my opinion an MRI is the best.

[Sister3nkc]

Hi Arkait

I am not educated as a physician (I am a registered nurse), so I cannot offer any advice to you. However, the reason why my ONC ordered a CT Scan vs PET scan is a question I have asked my oncologist in the past. It seems some providers routinely order PET scans while others routinely order the CT Scans. Which they order should depend on your individual circumstances. I did find a good article on the Cleveland Clinic website that explains: "One of the main differences between PET scans and imaging tests like a computed tomography (CT) scan or magnetic resonance imaging (MRI) is that the PET scan reveals metabolic changes in an organ or tissue earlier--at the cellular level. This is important and unique because diseases often begin with functional changes in the cells. A PET scan can often detect these very early changes, whereas a CT or MRI detect changes a little later, as the disease begins to cause changes in the structure of organs or tissues.".

That helped me understand the differences of the tests ordered a bit better. I was also told by my ONC that the PET scan is a much more costly test and insurance companies will sometimes not pay for a PET Scan when they believe the CT Scan is the more appropriate test depending on the patients diagnosis and current disease state. The insurance Companies encourage that the least expensive test be ordered UNLESS IT IS TRULY MEDICALLY NECESSARY TO PERFORM THE PET Scan.

Here is a link to the Cleveland Clinic's website. I hope you can get some help by reading it. It does get very confusing trying to sort through all the information we are given to feel comfortable that we are getting the best possible care. You really have to self advocate and do your own research so that when something is suggested to us we are not quite as lost and have some idea of what the ONC "should" be telling us.

Good luck to you, please keep us updated on how you are doing.

Namaste sister.

my.clevelandclinic.org/heal....

[Arkait in reply to Sister3nkc]

Much appreciated. My onc just ordered y second PET for next week (my first

was Feb 1st, a half year ago. We are anxiously trying to determine if there is

bone cancer on my inferior sternum, and first PET scan and two CT scans

leave the matter uncertain *(the confusion is that there is scarring there from my

previous open heart surgery in 2011--so that makes it hard to see what

's going on Im hoping a second PET will reveal no new or old cancer at that

crucial spot.)

[Sister3nkc in reply to Arkait]

Please keep us posted. God Bless.

[kearnan in reply to Sister3nkc]

My onco first tried ordering a pet scan when I first switched hospitals and thought I was still stage iii invasive, but she told me before she did it, that medicaid would probably deny and they would wind up having to do a CT scan but she said the CT scans were good also so she was not worried, she just said the PET scan gave a bit more info. Of course, she was right, it was denied, but I had the CT scan and that is how I found I became stage iv with mets to the lungs. It is much more expensive but she was able to find out what she did with the CT scan.

[PJBinMI]

I'm sure with you on thinking that a nice quick death is better than lingering with struggling to take every breath! I'm a few years behind you, at 73, but from a long lived family with alot of folks living into their 90's and even 100s for generations! And I've made it 15 years with mbc. I don't have the heart problems you do, but I do have atrial fibrillation and a lung condition (both side effects from Ibrance dammit). I did have a biopsy of a bone met during initial staging, with just "light sedation." I don't know if that would be possible for you but you could ask as biopsy is really the best way to see for sure with bone mets. It would show whether it is a bc met and whether it is the same as the original cancer, in terms of E, P, her2neu. I've had CT, PETs, MRIs, whole body bone scans and my insurance has never turned a request down. I hope your doctors figure out just what to do to best treat this for you, and quickly! Sending cyberhugs, prayers and love, Pam

[Arkait in reply to PJBinMI]

Thank for advice. I will look into the possibility of "light sedation" for a biopsy, but the

doctors here all seem dubious that I warrant open heart surgery. They make me so mad.

They all talk about sending me home for hospice care and decline,

[kearnan in reply to Arkait]

I had sedation for my lung biopsy. It was so odd. I was awake and could talk and hear the doctors and actually watched the screen as they put this needle into my lungs but I felt nothing. It was like twilight, like being in a dream. But I was able to follow directions (they then had my lay on my stomach and put another needle in that way.) That was the first time I ever had that type of sedation and I felt nothing. Afterwards, though when it was wearing off, I got a massive headache but they gave me something over the counter and it went away. Not used to having headaches which is why I called it massive LOL

[Kimr2081]

I can tell you i had a bone scan because of constant pain in my back and it showed nothing. I went to a pain management doctor then and she ordered and MRI and low and behold it was cancer. I say go with the MRI.

Kim

[Arkait]

I wonder if the steel rim on my cowhide aortic valve would preclude an MRI ?

[Arkait]

Appreciate your advice

[Godbeforme]

thinking of you, how are you? God bless and heal you in Jesus name, amen! <3 xo

[Arkait in reply to Godbeforme]

Been meaning to call. a lot happening. I got PET scan results, but although results

are great (cancer in retreat everywhere, except one new small met on sacrum.

However PET still can't determine if inferior sternum is cancerous and that's

exactly where heart surgeon needs to cut!! I found out that my artificial aortic

valve does not interfere withMRI magnets so that may be the next test.

I might also try to get a biopsy of the sternum with limited anesthesia, not general

anesthesia. Or, if cancer is in retreat, I might dare to wait a few more months....

answer next week, hopefully, as I am scheduled for surgery Oct 2nd already!

How are you? Thanks for thinking of me during these difficult days I

start my 5th week on fenbendazole today. Will order more Carnivora tomorrow.

Keep doing what I've been doing.... Warm regards in Jesus' name, Mary in Maine

[Godbeforme]

Good to hear from you, Mary! I am so happy to hear your results and that the cancer is almost completely gone! Now to get your valve fixed and if it was me, I think I would plow ahead, get it fixed and go from there because like you said, life is miserable not being able to breathe and have adequate blood supply, and if it turns out to be malignant at least you will have the strength to fight it. I am just thinking out loud what I THINK I would do if I were in your situation.

I'm starting fenben on monday. I bought the safeguard brand as it's half the price, and when I was reading the fine print on back to see where it was manufactured, etc. what do I see but d/b/a MERCK! so it is the exact same thing as panacur unless MERCK makes TWO versions of fenben which I can hardly imagine would be feasible or any reason to do same. Hubby says I squeak when I walk but once you get in the habit of squeezing pennies it lasts a lifetime I'm finding out. At one point we did have to squeeze every dime to make it but now it's much easier, no burden really, but yet I still squeeze LOL. Much love to you and stay safe in Jesus name, amen! I pray the Holy Spirit will lead and guide you to the correct path for you; He always does! Going to minister at a nursing home this morning with another lady; I sure hope they don't try to keep me there LOLOL ... last time I ministered at a nursing home I was in my 30's .... now 65, will report back, prayers please for God's healing and presence in the service in Jesus name, amen! and thank you!

[Arkait in reply to Godbeforme]

Dear One, thank you for your supportive message Do tell, how much do you pay

for your fenbenzadole? and what is the source, please? Be well. (My cancer is only 50%

reduced from Feb 1st, but NOT entirely gone, by the way)

[Godbeforme]

sent you a message! <3 xo

[Rbeth]

I had bone Mets in my ribs spine and other areas. I am on Ibrance and letrozole. My Mets have turned to scar tissue. No more cancer. I have Mets on my rectum, stomach and lymph nodes around my intestines. After almost a year the cancer in my nodes and rectum are getting smaller. I get a PET scan every 3-4 months because of all the locations that I have Mets. I go to the hospital with the newest PET machine. It is also important to follow the preparations before you get the test. There are great details on the web that give the preparation. The hospital has the information but I checked the web too.

Good luck with your tests.

Glad to help.

Reenie. Rochester NY