any way to tell WITHOUT a scan?

I know scans are absolutely terrifying, waiting for the results and such, but think about how good you will feel if you get the scan and everything turns out just fine! If it turns out not so good, then you can start on a treatment plan. Either way, whatever is going is not going to change whether you have a scan or not, you will just know about it if you get scanned. What does your oncologist say?

I like scans!  I get to take naps in them.  I especially like the MRIs, because I can make up music to the sounds.  CTs are annoying because they talk to you and wake you up.  PETs would be the best - a two hour nap, except that who can lie in one position for 2 hours without aching?

You have to get over this fear.  If not with talk therapy, then with medication.  You are very unlikely to have cancer - since it moves around and seems to be in your shoulders, it sounds muscular.  But, I don't know, I don't have bone mets.

A bone scan is really easy.  It's open, not closed.  It doesn't take long.  The techs are nice, they give you warm blankets.

I guess I don't know how to deal with the kind of fear that causes somebody to cry because they see a machine on a TV show but I sure hope you can find a way.  Any momentary fear or discomfort is nothing compared to what will happen if you do have mets and find it very late.

I know where you're coming from minxie. All I can tell you is where my aches and pains are. I have pain in my abdomen and right side from liver mets, accompanied by bloating and nausea. If it's liver mets, I would think you'd be nauseated, but I've heard thats not a symptom for everybody. I have bone mets in my spine so my back hurts all the time (the muscles more than the actual spine). Also in my sternum, which makes my ribs hurt. Also, in my femur, which doesn't hurt too bad, but it makes my leg feel very weak and my leg gives out on me sometimes.  Also in my hips, which only hurts sometimes but has affected my gait. Also in my lungs, which causes shortness of breath sometimes and coughing. I do so truly feel your pain when it comes to scans (I'd rather shave my head with a cheese grater), but if you have any symptoms that don't go away in a few weeks, I would certainly have the scans done to be sure. I know how scary it is to wait by the phone for the bad news. Everytime the phone rings, I jump and have a panic attack so you are not alone here. I hope I've helped a little in explaining the symptoms, but in reality, these symptoms could be anything. It doesn't necessarily mean it's mets. Just so you know, if it is, my friend is triple negative and she's been living with mets worse than mine for over six years now and she's been stable for three of them. Take what you need to take....it's nobody's business but yours. I feel so sorry for you sweetie, I know EXACTLY how you feel.

I understand your fear of scans mixie.  I feel the same way about the MRIs.  When I found out I would have to have one, I called every place I could find to see if I could have an open bore one but I ended up having to do the closed one.  There was no way I could have done it without the small dose of valium they gave me beforehand!  Unfortunately, I know that the FDA recommends 3 year post surgery MRI's for silcone implants but the thought of getting into the machine just turns my stomach!  I hope you can muster up the courage to get the scan done.  It is scary to get into that machine but your mind might be more at ease knowing for sure what is really going on.  I will keep my fingers crossed for you!

Minxie - have you ever heard the saying "A coward dies a thousand times, a brave man but once" ?
Now I AM NOT SAYING YOU ARE A COWARD but this saying may be relevant in that maybe you are 'dying' of fear of the unknown over and over and over again, whereas if you did the scan, it would be one sucky day (or maybe less so with ativan) and then your fears would be answered. The overwhelming probability is that the pain is not cancer. But you seem like you're paying a higher price on a daily basis for not-knowing than knowing. I don't even mean in terms of letting it progress if you dont' get tested. I just mean the anxiety that flows through you with every ache and pain, all day, every day. THAT is no way to live.

I'll tell you what I do - i work out REALLY hard every day. I am always sore in one place or another. So when something hurts, I say "Oh that must be from my workout." Might sound crazy but it works for me. So there's another avenue to consider.

I hate to see you suffering like this. 

Minxie, yes you can. Don't carry that weight on your shoulders....the woulda, shoulda, coulda. It's terrifying, I know, but if the new PT group recommends a scan, do it. Wouldn't it be great to find out good news and then let it go? The not knowing is probably making every muscle in your body hurt. I can imagine your shoulders are up by your ears. Once it's over you can relax. There are some mighty fine drugs out there to get you through it. All you have to do is ask for them. Who cares what people think. What part is scaring you; the actual scan or waiting for the news?

Ok, now I have to tell you a kinda funny story. One of my chemo nurses told me that on her first day of work my oncologist asked her if she would go through a scan (not sure what type) with a woman who was terrified of scans! She said she couldn't do it and I asked her if it was even possible as tight as some of the scans are!

Minxie, you are not weak, and getting help for anxiety means you are strong enough to do what you need to do to get better. This cancer stuff is horrible, no way around it. Someone else already asked, but what is your fear of the scan? Is it actuaaly going through the scan or waiting for results and hearing the news? My fear is always waiting for and hearing the results, not the scans themselves. My hubby is claustrophobic and is terrified of the actual scan, has to take ativan. Have you done any blood work? Maybe that can give you some info but I know bloodwork doesn't always show mets but can show if something is off. So sorry you are going through this. I have a scan next week and I am already stressing out. My scan is to see if the chemo is working.

Minxie, I think I said this before, but I almost jump out of my skin when the phone rings at my house because of scan results. Panic attacks so serious that I've come to not be able to look at the phone like you can't look at the scan machines. I hate the phone....seriously, who else but a cancer patient has panic attacks and needs to pop a pill when the phone rings? But like I said before, think about how much better you'll feel when it's good news (they call to give good news too). My phone, your scans, sounds like basically the same deal. Maybe look at it this way. If I didn't find out, I'd doubt very much that I'd still be here. I'm sure treatment gave me a few more years to be with my kids. You went through hell to have your sons...don't stop now, if by some small chance you need to be treated for something. I'm in a position now where I told my onc, if it's good news, by all means call....if it's bad don't call me unless you can do something about it. In the latter case, we could talk about it at my next appointment if he felt it was necessary to let me know. If not, then I'd really rather not know and just continue on living in my little world of denial. It's worked out well so far and he's been very sensitive about what he does/doesn't tell me.  I can relate to losing control. I'm a control freak by nature and losing control to cancer is about the worst thing, but knowing you could have done something and didn't for your sons' sake will be far worse, believe me. Please get the scans....this too shall pass one way or the other. It just sucks, no other way to put it, but I bet like me, you need to know you've done everything possible for your kids. You can pm me anytime and we can talk if there's something you need to get off your chest privately. My heart is hurting for you because I know EXACTLY how you feel. You are not a wimp and you have every right to be terrified. There were times when that dam phone would ring and I'd actually be "paralyzed" with fear and had no way to answer. I'm not joking.

Edited to add: my husband works for the phone company and we actually had a different "ring" assigned, just for the cancer clinic. See? There's always a way around anything. (Still can't look at the phone, though). It's always hidden from my view.

minxie,

Upon reading your last post, I think I am clear about what is going on now. So my response, which is aimed at you and only you, may shock someone, but I hope it offers a pathway (just one of several) for how to think about this.

First, though, never apologize for discussing what you term "mental health" issues. It's the whole person that gets cancer, not just some floating body organ. All of you belongs on this thread. Step in and sit down. :-)

If I get metastasis I am not sure that I will want to treat it. I may and I may not. I am not afraid of death. Therefore, I am someone who may or may not choose scans if a pain becomes suspicious for mets. For now, I create systems of deniability. One is to do strenuous weightbearing exercise so that any bone mets may not cut through my already high threshold for pain until the last possible minute (and I am not giving any advice - just describing my own magical thinking, if you will).  If I develop a pain, I "treat" it with power yoga, or more exercise. So far, that has worked (obviously it wasn't mets). And obviously, I haven't had symptoms of brain mets or lung mets.

Should any pain I have ever persist, I might just wait until it becomes intolerable. In other words, I'm not over-thinking it or intellectualizing it. Just going with the flow. I am much more afraid of unhappiness than anything else and I have fought too hard for daily well being. I opt for the best present possible, and give myself permission to manage my health as I see fit. In practice, this has meant a fair amount of lifestyle changes because I love life like few others I know (eg: stopping smoking), so just because I may not treat mets it should never be assumed that I am sitting on my hands shrugging my shoulders. I follow medical advice as needed, and I also have a comorbidity that requires treatment for life, which I follow.

So do whatever you want and realize that that is OK - It's ok if you don't want scans. I mean this profoundly. There is no law or rule about it. The liberating part about being as close to death as I have (and I'm not talking about cancer - no idiot dies of stage II BC) is that you realize that there is no rule or law about what you do with your life. If you loathe scans, then don't have them. And I'm not being in the least bit facetious. 

It's easy to get caught up in the rubric of "I have to live as long as I can no matter what" that our society imposes. That rubric may be a fit for a majority of people but not for all.

Always be mindful of the underlying assumptions under which you operate and which, in some cases, may be quite entrapping. If you know, in your heart of hearts, that you want to be alive for as long as possible, and that a scan can equal a plan for at least a few months more on earth, if nothing else, then be single-minded and sacrifice your piece of mind for your ultimate goal in life. Cancer has robbed me of the freedom to be indecisive, and for that I am eternally thankful. It has straightened some creases in my executive function and clarified pathways. It has not been all bad for me, by any means, and that makes me count myself as lucky.

I know, for me, that I am operating  with the underlying assumption that I do NOT wish to stay alive no matter what. I wish to stay alive under ciertain circumstances and not under others. I wish to thrive. For me, that involves a change in perception in just about everything. There is room for all perceptions and all definitions of life on BCO.

I think once you remind yourself of what matters most to you (not to society), and once you give permission to yourself to make your own choices, the scans --one way or the other-- can be seen as a tool to that goal.

I have no idea if anything I have just said will be the least bit helpful. I hope that you run with it and see what YOU think and what YOUR bottom line is - maybe that's what isn't clear or in the forefront and that is why you feel so trapped?

My heart goes out to you. Been there, felt that, a million times in my life, over incredibly important things. I would never be so arrogant or bossy as to tell you WHAT to think or HOW to think. But perhaps just thinking itself - asking yourself what you really, really want (treatment for mets or no?) may help. This may be a path laden with incredible fear. I know fear. I have felt it in my life far too many times. The brave person is not the only who doesn't feel it, but the one who does not allow it to dictate decisions.

And best of luck to you. I am sorry that you are in such an aches and pains situation. I'm hoping that there's a good, easy fitness solution. That's how hope comes in handy. :-) 

I'm fairly new here so I probably shouldn't start off arguing with anyone but 1

I completely understand minxie. I don't blame you one little bit for how you want to be remembered. Sometimes the look on my kid's faces is sooo hard to handle. All we can do is be strong for them. Much love to you and I wish you all the best. I hope it nothing more than ordinary aches and pains.

minxie,

That is great news you have found a PT group that specialized in BC patients and they seem have identified your problems.  After seeing my breast surgeon yesterday, they have recommended PT for me also.  How did you go about finding a PT that specializes in BC patients?

No I am in the DC area.  But I have a friend who is a PT and specializes in lymphedma etc.  After speaking with her, she said she could work me up .  I think I feel a bit better about this versus going to a stranger.