BC- Mets or spina Bifida - HELP

Anonymous · January 2011

Please don't think I am crazy, but my radiologist's report regarding my last set of scans, both PET and CTs, states I now have spina bifida. What the heck????

Since I was Dx with BC, 3 years ago, I have had 6 or 7 PETS, a dozen CTs, 2 bone scans, a number of chest xrays, before 10 surgeries, and at least 20 actual spinal xrays. Nothing ever showed up, never, nothing!

My May scans showed "activity" in the lower spine, L1,2,3 & 4, and right hip. This latest is addressing the same are the activity was located. My cancer marker (Ca15-3) has jumped from 22 (something) to 35.2 in ONE visit. My Onc wants me to ignore this entire issue. My PCP agreed, and ordered another cancer marker test yesterday. My husband and I drove immediately to her office and had my blood drawn. (Not waiting for 3 month, as my Onc wants). SHe has requested a second opinion from my insurance but fears it may be denied.

The pain in my lower back is just unbelievable. After all my pervious surgeries, I refused pain meds. So glad I didn't throw them out, as I have needed them almost daily for the last 2-3 weeks.

Shrek4 · January 2011

Spina bifida? I know that's a birth defect, it doesnt' appear overnight in adult individuals. Are you sure that it was YOUR Xray that they were reading?

Annie62 · January 2011

Jean, That does sound very strange, but I googled it and found the following information. So maybe you always had this minor case that didn't get seen until someone really started looking closely at that area when it lit up on your PET in May.

I wish you the best with all of your treatments and hope you get the answers you need quickly.

Annie

Spina Bifida Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.

There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood.

In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age

Anonymous · January 2011

After receiving this news I started researching this subject. There's no way the scans could have been switched as it mentioned to much of MYE in it, i.e., reconstruction, pacemaker, missing "parts", 1/2 of my thyroid, uterus, etc. It had to be B*** S***. Idiot looking at my scans.

Like I said, after over a dozen and a half CTs and PETs in the last 3 years, coupled with 20 x-rays of my spine, bone scans, lots of chest x-rays, PLUS 4 lower back "procedures" using florascopes in that area (L1,2,3,4) to deaden the pain, no record of anything. Now I in very intense pain, my tumor marker is very elevated, and "something" is protruding from my spine.

Honestly I am scared to death. If this is ignored and it's mets, how bad will it be in 3 months? My original tumor developed almost over night. We were on a vacation when my breast started to hurt and felt very heavy, like a brick. I knew it was time for my yearly mammo and decided I better call as soon as I got home. Before I could see my Dr, I had a sharp pain, reached up, fearing a heart attack, and discovered a golf ball size lump. It was stage 3 grade 9 - from nothing a few weeks before. If my stupid Oncologist makes me wait 3 more months, and it's mets, it could be all over by then

Lowrider54 · January 2011

lady4law

I would get myself to another onc TODAY...NOW like I posted on your other thread...go to the ER if you have to and get the resident oncologist down to see you it the same hospital system that did your scan (they will be able to view it that way and get a second opinion on the ready - the tech is an idiot, in my opinion) - this is utterly stupid to make you sit and wait and it makes no sense whatsoever - DO NOT WAIT 3 months - if its bone mets only, treatment is available and they started mine from the biopsy on 09/11/2009 to official dx on 09/16/2009 and treatment started that afternoon. Other than this recent event (see below) I have been doing very well.

I have severe degenerative disc disease in S1-L5 and L-5-L4, my mets starts at L3 and sprinkles its way up my entire spine with slightly more measurable areas now at T6 and C7. I just went through a bout of the most accute pain I have ever experienced - spent Christmas day night in the ER - thankfully, no compression fracture but severe nerve impingement at the S1-L5 disc that is pretty much no longer there. Since I have mets, I can have no manipulation but medical massage and double dosing on the pain meds - as long as I keep ahead of the pain with the additional of 1 Advil every other percocet - it has been tolerable. I start accupuncture on March 1st and I can feel the protrusion - its kinda lumpy and pallable.

If you have had such back issues, what Annie62 posted could be possible and if you saw my spine - the description could fit that S1 - L4 area almost exactly.

Now, off with you to the ER...(before you drive yourself crazy)

Big Hugs...LowRider

Anonymous · January 2011

I never thought of the ER. I have not considered this THAT type of emergency. (Nothing that would cause my immediate death). However, if I don't get my referral by tomorrow, I think I'll have my husband take me in. Only issue, my Oncologist, I think, is head of Oncology. (While I was on chemo, I know he was, not sure if he's stepped down or still holds that position). My son did that while he was having treatments. No one responding to his calls, so he just went in and he finally got his answers. Our insurance might get upset, but then - hey - they should have done something sooner - right?

My husband called last week, in regards to a growth on the edge of his mouth, the next day about an eye issue. He's received both of those referrals and will be having the growth removed and biopsied Wednesday.

Your back issues sound a lot like mine, I have 3 herniated disc, and L1,2,3, and 4 are almost completing dissentagrated. Like you, there is something protruding out of my spine and I wonder if it's mets, rather than SB. Honestly it is scaring the hell out of me.

Anonymous · January 2011

Not really, it's about an hour drive, with no traffic, which is rare in LA. I would say, on a good day, about 1 1/2 to 2 hours, each way and my insurance will not pay for it. All my Drs and procedures, must be completed at Cedar's SInai.

J_Jackson · March 2011

I know I am getting in here really late to this post but I say get to the UCLA Cancer Center and see someone on Dr. Slamon's team. Pay the consultation if you have to. I called to get in to see him when I was visiting LA and it was super easy. Check out their website to see what you need to bring. Go!

Anonymous · May 2011

My insurance will not allow for a second opinion outside of Cedar's Sinai. I finally did get consent for a second opinion, last week, Great news, right? NO, they want me to see my Oncologist partner. Not only would this be very awkward but I know she will be guarding her words. She will not go against her partner as she would be fueling a possible lawsuit against herself. (as partners share in responsibility)

But a BC sister, spoke to her Oncologist and I will be seeing him shortly. I awaiting new scans and will take those along with my blood work, to him for his opinion. My onc told me last Tuesday I was "ok", no need for scans, then the next morning, his nurse called and said my cancer markers are elevated and he's ordering a PET CT. (Have no idea what the numbers are, they have been raising on my late 2-3 appointments, last time I think it was 35

BC- Mets or spina Bifida - HELP

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