Advice & help plz...I need a scan.

Chelee · 11-12-2008, 04:35 PM

For the last almost 3 months my upper mid back has been killing me. I've never had upper back pain in my life.

I've also felt like its harder to take a full deep breath in. So of course the more I think of all this I am having alot of anxiety and its making things worse because I can't quit focusing on it. As some of you know I already have comprimised lungs due to my scoliosis. So any difference in my lungs/breathing is noticed.

I went to my onc not quite 2 wks ago and told her about my upper back pain and breathing. I told her I need a PET/CT. She said she can't do that and to go see my primary. (SAY WHAT!!!) I went round and round with her and she flat won't ok a scan. I'm stage IIIA with 5 positive nodes...could NOT have radiation.

I never had problems getting scans before this. I went to my primary doc yesterday which I've had for 30 yrs and I KNEW he would ok a PET/CT. But he said NO too. (I told him this is just the HMO's way of putting pressure on doctors to hold down cost...profit over patient.) I told him I'm worth more to them (HMO) dead then alive. He pretty much agreed with me and said its become more of a business and thats why he wants out now. So he ordered x-rays of my thoracic back which I told him would be useless because of my scoliosis. He said he HAD to do that before "they" (HMO) would let him do anything else.

After I did the x-rays he agreed with me that the x-rays don't show him anything due to my scoliosis, mastectomies, scar tissue, etc. But he said my x-rays will be sent to radiology and that will take about 3 or 4 days and they will blown those up to about 10 times the size to take a look at them. (That doesn't help me in the mean time!) I said THEN can you order a PET/CT for me? He said well it might be difficult since oncology already turned me down. (Are these doctors for real)

I am so stressed and in tears. All these appts and no one will order a scan when I have REAL symptoms. Where going into the Holidays and I can think straight with this hanging over my head. I am so afraid I have lung mets. I thought they had to let you have scans if you have symptoms. My last PET/CT was 7 months ago which were clean. I don't know if I could have mets in that time but I'm really worried. What can I do to MAKE them let me have a PET/CT? When I feel like my breathing is affected its pretty scary. Why are they denying me now...this almost doesn't seem legal. The next one on my list to call is my pulmonary...but if my onc and primary won't help me...why would he.

Anyone have any advice for me on how I can get a PET/CT. I never had a problem getting them before being stage III...I really believe this is all about them saving money and to heck with me. I can't take this much longer...my upper back is killing me. They should be worried when I present with upper back pain and breathing problems...but their not.

Chelee

Bill · 11-12-2008, 04:53 PM

Chelee, I'm so sorry about what your doctors are putting you through. It's inexcusable, and it's terrible that we hear so many stories like yours. Maybe after your x-rays come back with no conclusive results, your scans will be approved. I hope things are resolved for you before the holidays. You have enough to deal with.

CLTann · 11-12-2008, 04:59 PM

I sympathize with your situation. Your two doctors are not serving you right. Meanwhile, how about a bone scan. It sounds to me that you may have pain from the bone area in the upper back.

Sherryg683 · 11-12-2008, 05:23 PM

This is absolutely ridiculous. I've never had to deal with HMO's but I would be furious. I would tell them that ordering a scan is going to be cheaper than the lawsuit you are going to slap their asses with if something does come up and they did not treat you when you had initial symptoms. I dont know what to tell you, get mean if you have to and don't give up. I'm sure all this stress is causing anxiety which is making your symptoms worse also. Please keep me posted..sherryg683

chrisy · 11-12-2008, 05:38 PM

Chelee,

I don't know how this would go over, but you could insist they document this - your reporting of pain, request for scan, their refusal to order one. You could even write it up and have them sign it. Like you're building a case for that "lawsuit". Might scare them into rolling for you.

Also, since you live in California, you could start corresponding with the office of the insurance commissioner. I've never done that, but again, that might stir them up.

Or you could chain yourself to their office door and refuse to leave without the scan order!

Good luck, chelee. Hope you get some answers soon, the worrying is the worst!

Joan M · 11-12-2008, 07:47 PM

Chelee,

I'm sorry to hear about your back pain and breathing problems, and your doctors' refusing to order scans.

Besides the x-rays, what did your primary say about determining the cause of your problems.

Before I became stage 4 I had upper mid-back pain (more on the left than on the right), but it seemed to be related to poor posture on the computer. The back was painful enough that it was hard to sit back on the hard-backed chair. It hurt mostly in the area of the scapula.

How about requesting a CT scan? It's not as expensive as a PET/CT, and if your pain is being caused by cancer, that would show up.

I don't blame you for being upset. I too asked for a scan when my back was bothering me.

I'm praying that it's nothing serious.

Joan

Chelee · 11-13-2008, 12:37 AM

Chrisy, I like the way your mind works. I really did not expect both my doctors to deny me a scan. I let them both know a PET/CT or just a CT would be fine...but both denied me. I think putting my oncologist and primary BOTH on the spot like you suggested might help. That is something they would expect from me...I'm pretty pro-active and speak up which has gotten me in trouble before. But my life is important to me even if it's not to them.

I'm really scared about this back pain. My mother had this same pain in her upper back & it was lung cancer. She passed away last year thanks to them. They never did scans on her either. They put her off and convinced her that she was old and it was just a bone spur. They even told her not to go see any other doctors about it. Again, profit over patient.

Joan, I have been blaming my upper back pain on my posture too. Thinking its the way I'm sitting when using my laptop. (In fact I pray it is!) The pain just happens to be the scapula area that you are mentioning. That's exactly where it hurts. It seems harder to take in a deep breath...this just has me sick. I really need to know what is causing this. I was feeling pretty good till this came up, now I'm an emotional wreck.

I wonder if I should make an appt with my onc and ask her in person to put something on paper as to why she is denying me a scan...or call her first thing tomorrow? They have put me off long enough...if this is lung mets its been going on a long time. I only have 50% use of my lungs as is...I can't afford to mess around with what little I have and they know it. I haven't felt this stressed since I was first DX.
Chelee

Chelee · 11-13-2008, 01:10 AM

Bill & Sherry, thanks for your added support. Bill my primary doc same as already answered my question about scans. I flat out asked him if he would order the scans after radiology looks at my x-rays? He said he would try to push it through but chances are since my onc would not ok the scans...it would probably be denied.

This is just their way of dragging this out some more and putting me off forever until its too late. If my primary tells me already he doubts they will approve the scans after reading my x-rays...then why did he even bother with it!!! (I'm so ticked off)

I've dealt with this upper back pain a long time before asking my onc for a scan. How fast do these lung mets grow? I would think fast with this her2 bc. They said my scans last April were clean...but who knows how well the radiologist looked at them? My breathing wasn't bothering me back in April...but it is now.

Chelee

hutchibk · 11-13-2008, 01:40 AM

Chelee - Have you ever had a PET before this?

I think that PET is often approved/ordered/used only after it has been determined that you have mets. In my case I can only get one every 4 months now, but that is because I have been metastatic for 3 years. Before we found indication of recurrence with mets, I did not have PET, we used tumor markers, CT, MRI, and bone scans only until I had my first recurrence.

I agree with Chrisy - push for a CT or MRI only (depending on which would be more appropriate for that area) and bone scan to start ruling things out.

Is your onc following tumor markers? That might also give you a hint (if they are a good indicator for you, which you might not know yet since you have not been metastatic...)

Margerie · 11-13-2008, 08:41 AM

I am sorry Chelee. Your docs never cease to disappoint me.....

I would go see a pulmonologist. Do you have one already??

You are right about HMOs. I witnessed an HMO banquet where they gave out AWARDS to the docs who referred out the least.............

Chelee · 11-13-2008, 07:50 PM

Brenda, When I was 1st dx they did a baseline PET/CT before I started chemo. Since finishing chemo I've had at least another three. In fact my most recent one was 7 months ago. So to deny me now when I am presenting with symptoms is inexcusable. A MRI is really expensive so I know my onc and primary will tell me "no" to that too. A CT is the cheapest way for them to go.

As to tumor markers "yes" I have those every 3 months. CA27-29...mine are usually at 15. I did noticed this last time they were at their highest since finishing chemo which is 26. (And that is still well below the reference range so it didn't concern me much.) They have slowly been climbing the last 2 visits...which is a first for me.

Chelee

hutchibk · 11-14-2008, 02:46 PM

My tumor markers have historically hovered nicely below what is considered "normal" ranges- so we don't use clinical "normal" as a benchmark for me. We work from what is "normal" for me. That said, anytime mine have risen over two to three consective tri-weekly lab draws, then my onc asks if I have any pain or new symptoms anywhere, and the answer is usually no, but if I am eligible for a covered PET or brain MRI, (PET every 4 months, brain MRI as needed because I have brain mets) he schedules one. He is just so very thorough. I am lucky. And, in my case, EVERY time my TMs have inched up over consecutive labs, we have found a new mets spot somewhere, or an old one waking up. But it is ALWAYS a very small and very early spot when we find something. My TMs are crucial for me. Maybe one day they won't be as sensitive and indicative for me as they are now, but for now I am lucky that do the job that they do. And all the while they live under the "clinically normal" ranges. I love my onc. He works around, through, over, under, above conventional wisdom and guidelines, all the while abiding by aspects of conventional wisdom and guidelines. He has saved my life, that is for sure.

Were it me, the rising TMs would be a big deal, combined with the pain, and I would definitely push for at least the CT to get started. I mean PUSH. And I know you will.

Chelee · 11-16-2008, 04:56 PM

Brenda, I did ask my onc at my last appt. if she was concerned at all about the slight increase in my TM'ers now that I have this extreme scapula pain? She blew them off letting me know that tumor markers aren't reliable & if I had something going on they would of been much higher then 26. (You just proved with your own case that's not always true.)

I tried to get my onc on the phone this last Friday but she is out till Monday. So I called my pulmonary doc and made an appt with him. I will see him Tues. morning & I'm hoping he will order the CT scan. I'm still going to use Chrisy's idea too...I like it. Until I find out what's going on I am going to be a mess.

Chelee

Mary Jo · 11-16-2008, 06:53 PM

Hi Chelee,

Just wanted to say that I'm thinking about you and sorry you have to be going through this. It's tough enough to go through what we go through at times (worrying about mets) much less to get NO cooperation from your doctors. That's just WRONG.

Praying you will hear this week that a scan will be ordered for you.

Love to you,

Mary Jo

Chelee · 11-17-2008, 11:17 PM

Mary jo, Thanks for thinking of me and your kind words. I was suppose to have an appt. with my pulmonary doctor Tues. morning but they called & canceled it. They said I had no authorization to see him. This makes no sense, I have been seeing him since I landed in the hospital due to chemo related issues back in Feb. 2006. This pulmonary was not in my "HMO" group but they allowed me to continue to be seen by him since then.

I've had lots of appts with him and in fact he JUST ok'd two prescriptions for me not even a month ago. So if I have no authorization why is he handing out medications for me. (It's like my onc & primary doc stopped this...no one wants me to have a scan.) So I was on the phone ALL morning till 4:00 PM today. Calls to everyone including my primary. Now they are saying they will TRY to get it authorized but it will take 4 or 5 days and if I don't hear from them to call back. I lost it today when I was done, just tears...I feel like someone beat me. I'm emotional exhausted. (No need to worry about bc...because my managed care is literally going to kill me 1st.)

Chelee

harrie · 11-17-2008, 11:52 PM

Chelee, could another possibility for the upper back pain be due to tension held in that area? I know that I have a tendency to hold tension in my upper back and shoulder area. If there areenough tight muscles, lack of circulation, clogged energy levels, etc...I would imagine pain would not be out of the question. At a very minimum, if this is a possibilty for your discomfort, you might want to consider several really good massages or even going to a good accupuncturist. If the problem improves or clears up, well at least you rule out a metastasis.

For now I wouldn't rule out the fight for the scan, but this might be a good conservative approach to begin with.
Maryanne

Rich66 · 11-18-2008, 01:29 AM

I will add that you might consider asking for one on your own dime. In my mom's case, a breast MRI was received only after we had a meeting with rad doc who I asked whether there was a "medical reason" why it wouldn't be done. We made clear it was desired and would be payed for out of pocket if need be. After the meeting, the onc finally agreed to order it and insurance covered it. Me thinks he was shamed into it. I only wish we had pushed harder for other scans.

Chelee · 11-19-2008, 01:20 AM

Hi Harrie, I've tried blaming the upper back pain on all kinds of things. Mainly the way I sit when using my laptop. But I've made major changes and have been much more active & nothing has helped.

My biggest concern is not just the upper back pain...it feels like its harder to breath. It's like I can't take a deep breath in. And of course the more I focus on it the worse it seems to get. My lungs were already compromised before being dx with bc...so it doesn't take much to affect my breathing. But at least all the calls I made yesterday over them refusing to let me see my pulmonary had some affect. They told me yesterday it would take at least 4 or 5 days to get authorization...but this morning they ok'd it and now I am allowed to go see my pulmonary doctor. I guess they realized I was NOT going away! So I will see my pulmonary doc on Monday morning. Thanks for the ideas Maryanne.
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Rich, Paying for my own scan was going to be a last resort because finances are so tight. But as you know...sometimes that is the price of piece of mind. I was hoping to avoid it since there is only one income here. I'm glad your insurance ended up paying for your Mom's scan. It's awful any of us has to fight these things when dealing with a major illness. Your Mother is so very blessed to have you there for her. It makes a world of difference.

Chelee

RobinP · 11-19-2008, 06:45 AM

Hi, Chelee, I am sorry you are having trouble with back pain and getting the tests you want done. I know this may sound crazy, but I really believe that if you can somehow relax and stop worrying so, your pain will probably settle down, at least a bit. I had terrible hip pain last year and thought it was mets. Nothing showed up on scans and xrays, but I still had terrible pain without a diagnosis. As several months passed, I continued with pain, despite pain meds and NSAIDS. Then I started taking an antidepressant, Zoloft, which not only calmed me down from worrying but took away my pain over the course of several months. Now, I am fine and I think a lot of my pain was stress related. Keep your chin up and I hope you feel better.

JustwannaBE · 11-20-2008, 09:09 PM

Hi Chelee, after my liver resection back in April, I complained that my back hurt and I couldn't take deep breaths. After a month, my dr sent me for a chest x-ray and it came back clean, so there was nothing wrong. After two months of going thru this, I finally felt okay to see my chiro and I told him about it, and he knew exactly what it was and fixed it within a matter of a month or two. The problem was due to the way I was laid during surgery and two months of sitting around after surgery, something in my back was pushed against my diaphram which was causing the deep breathing pain/problem. Do you see a chiro for your scoleosis ? Maybe you can get in to one and have it checked ? Good luck and let us know what happens. Sorry you have to deal with all that crap with HMO's, it really sucks.