When every headache is brain mets...
Ladies, most of us are at that stage when every headache could be brain mets, every backache could be bone mets, every cough could be lung mets, or every lump could be more lymphatic mets. It's scary when we take some everyday injury to heart and worry that it means we have jumped the shark.
Today, I wrenched my back. I've done this a half dozen times before. It means lying flat for a day or two, and careful tending there after until it heals. But this is the first time I've done this since I was diagnosed, and of course, the first thing that went through my mind was: I wonder if this happened because I have mets to my spine? Not: gee, maybe I should have sat down before trying to get into my jeans.
Just voicing some fears. Please add to my ramble if you feel like it.
Comments
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Dear NancyD,
Yup, been there,done that!
I am very upbeat and have had 3 "scares" since finishing treatment for tri neg bc.
1 x bone mets scare, kept cool"ish" waiting for results, then came new large distant lymph node biopsy and that time, pictures to stare at etc and I got myself scared,no mets.
Now, Bone scan for spine and ribs next Thursday and although I am not working myself up like last time, it's still not a "nice" thing to be tested for, and it is a strange feeling.
Every time, I think, boy, I don't want to bring anything up again, but when the new pains come, we follow protocol and get on the phone cause we know it's best to, still... it never stops feeling weird hey?
Hope it all turns out PEACHY for you!, if it doesn't shift, check it out.
huggs
Shiny
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I'm calling my doc on Monday. I have had a pain in the collarbone area for a few weeks now. Nothing big, but the worry is getting bigger. I am hating this part of bc. At least going through tx I had an enemy and knew I was in fighting mode.
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That's the problem!
No headache, backache or pimple will ever be the same for us!!!! Ugghhh...
Nancy I hear ya, I have not had anything since finishing treatment in June BUT, I do notice I'm more stiff but I think that has to do with the chemo and its side effects. I finished 1 year ago so I think my se's are still there. When we are stiff do to fatigue,se's or even stress...we can easily hurt or injur ourselves. Maybe try a hottub or whirlpool and sit your back against the jets or even a swim to see if it helps. That's most likely what you are experiencing. BUT...for your piece of mind I would do the " 2 week rule" wait...and see...then call the onci onc. *sigh*
Boy do I hear ya...keep us updated,
Sam
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I hear you all loud and clear...I have had cancer of the eyelash, toe and finger nails, hair follicles etc...you get my drift. I have a 2-3wk rule, if the pain persists longer than that amount of time I will investigate it (sooner if it gets worse tho') I will also ask myself the question, did I have this type of pain/injury prior to Bc, most times it is yes.
Life will never be quite the same post BC and pre BC
love Tina
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Canceritis...I say
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nancy OMG i cant believe you posted exactly what i have been thinking.... you read my mind and probably every other one of us here sometimes my friend at work will say i am a hypocondriac to worry all the time but they have NO CLUE - they dont realize the things we have been told about the 2 week rule on pain and the one I love the best! that i get no scans because finding mets sooner dosent affect survivability thats ridiculous! well i am now worried about a back pain and a cough remember when you got a cough and it was a just a cold ugh i long for those carefree days! BIG HUGS julia
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Nancy - You hit the nail on the head! I think we all feel this way. I don't see a problem with seeing a doctor about the aches and pains, even if they truly are nothing. I would rather be over zealous than ignore things that hurt and find out that I have mets in a year. I guess it's all still so new to us. It really sucks!!
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Nancy- I so hear you on this one also! I had fibromyalgia before the cancer diagnosis; had the low back pain and the headaches then. Now, I have to sort if this pain might be different? When I have a few days when I don't think so much about it, then I think that I am not being concerned enough about my personal health and well-being!
I also work in dialysis and have patients cough on me all winter long. Funny thing though, almost all of the other staff have had colds or flu this winter and I have not (knocking loudly on wood!!)
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Janet,
Yes, that's the hard part: how is this pain different from any other pain? How do we determine if it needs to be seen by a dr? The 2-3 week rule is OK but it's not foolproof. I've had innocuous symptoms for several weeks (pre-bc) that cleared up spontaneously...rashes and things like that. I never concerned myself about going to the dr for every little bug bite. But now, the worry is: is it a bug bite or skin mets?
I wish I had a meter that could read whether the pain is coming from my bones or from my muscles. I really can't tell. Does anyone know how bone pain differs from muscle pain when it's in an area like the ribs or back?
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Aw, Nancy.... (((hugs)))--
I sure know what you're talking about. Actually, my paranoia/hypochondrism began years ago, well before my BC dx. I had lumpy breasts, and every time I would feel a new lump, I would worry: "Is this a bad lump? How can I tell?"; "Should I call my GYN and make an appointment, or just forget about it this time?"; "Is he going to think I'm crazy?"... Of course, one of those pesky lumps finally ended up being the big "C", and my worrying was rewarded (in a sense).
Now, it's the big "M", or maybe a local recurrence, that we're worrying about.
I also had one of those back twinges a few weeks ago. I've had 'em before, when twisting or bending or whatever--a dull, hot pain that becomes sharper and finally won't let me twist or bend at all. Well, this time, of course, I thought "OMG--it's bone mets!"
Fortunately, I remembered the "2-week rule" I've read about on the Mets board: keep an eye on it for 2 weeks, and if it's still there, call somebody. Well, my back twinge was gone in 4 days. So I forgot about it.
That doesn't mean I don't have a vertebral met, of course. It doesn't have to hurt, to be a met. It just means I'm going to try not to worry about it anymore...until it happens again.
I honestly do not know how to handle this stuff. Maybe someone has a guidebook or a set of rules or something...
otter
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Or, how about a meter to tell if it's pain from arthritis (that was there before, but not as bad as lately) or now bone mets. I know I'm always thinking, even if I don't say it aloud, maybe it could be...............
My sister who is fighting lung cancer tells me I read too much. But she is always quick to call me with her "what if" or "could this be" symptoms!
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I am right there with all of you! I sailed through chemo and once I started Arimidex and got aches and pains and tingling I have been scared of my shadow!
My sister told me last week that I was a worry wart, it made me fume for days, I pray each day for the strength of soul to release the worry and just be! Easier said than done!
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I can relate SO much to this thread! And I'm so glad you're all here with me. My friends and family all want to believe that this will all be over when I finish Herceptin next month. We all know that that's NOT going to be true. Like you all said, every backache, headache, cough. . .
When you find the guidebook, or meter, or way to release the worry, let me know!
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I can also relate. I just had a CT on my head this past Wed due to to headaches. I wasn't headache prone before all of this but I have had headaches for the past several weeks. Of course now that I've had the scan no more headaches. I've heard that herceptin can cause headache and bone pain so how do I know whats a SE and whats a mets. I HATE it!
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Hi Ladies,
Just thought I would share this one. I finished my rads treatment the end of OCt 08 and started tamox then. About 2 weeks later I started having an annoying pain in my shoulder. Doc said it looked like nerve damage from my SNB. Has been constant since then. The more I do, the more it hurts. About 2 weeks ago, my wrist started hurting so I put on my old tendonitis wrist brace. In 2 days the wrist pain went away. Then it hit me, my shoulder pain went away. Well about 98% of it did. Is this a coincidence? Of course, now I am wondering if I have a tumor that was pressing on my nerves and that was causing the pain. See, my mind works just like all of yours. I will be at the breast suregoen next Monday so I will discuss it with her then. Isn't that strange??
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Nah, it's not strange, it's human. Nancy, yah gotta get elastic waisted, stretch jeans so you won't do it again, LOL!
We are not hypochondriacs. We are more aware of what is happening in our bodies.....sigh. Even with clear scans and tests we will forever wonder, because once we were right to worry! I had never had a simple mammo, always needed ultrasound or more pics, so I wasn't even surprised when I got cancer. I've been waiting for it for over 50 years. And now, I wait for mets. Hello mets. Where are you?
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Hi
I'm one of the so called worry warts but the thing is I was at high risk for the cancer returning so I basically sat and waited for 4 years for it to return. Then,,, just like clock work,, it came back. Met to spine,, pelvis, tiny spot on liver and lymph nodes in neck. I don't want to scare anyone but those people who tell you your a hypocondriac aren't walking in your shoes. I started ignoring all the aches and pains and convinced myself I was imagining all of it. But,,, I wasn't. Turned out the aches and pains were actually symptoms and I let it go about a year before making myself push for answers. I could have slowed some of it down if I'd done what my body told me to do instead of listening to my friends. Even the doctor was thinking I was over anxious and creating symptoms. lol One of the biggest problems is that Arimidex,, Tamoxofen etc,, can cause aches and pains and we can't tell whats from the treatment and whats from a possible met.
Moral of the story,, get everything checked out if its lasted for a while and not improved. You are your own best doctor.
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Lynn has a good point. I wonder if I would be sitting here with a new hip had I acted sooner on my pain in my leg (off/on for months).
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I am so happy I read this post today. I am going through the same thing right now. have not posted quite a while, but finished last Taxol last week(22 weeks total of chemo) Now I am on Herceptin every 3 weeks for the next however long. I have had rib pain under my mastectomy scar area for about 2 weeks. Nothing major just noticicable when I feel around. So my Onc has ordered me a PET scan. just waiting for ins to authorize. have not had one yet..only CT scans at begining. Every ache every head pain...Everything makes me think 'it's happened to me it has spread". Reading all the posts helps to know I am not the only one feeling this way.
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strongmom37-Hi there neighbor. I live in Boylston, MA, just outside of Worcester. I, too, have that same pain. Although I haven't had it scanned and think you definately shoud for peace of mind, my surgeon told me that during the mastectomy they frequently rip out a nerve that runs down your rib cage(sorry to be so graffic!) and that it can cause pain for a long time. I've been on these boards for a few months now and many women complain about that same type of pain. I hope this makes you feel better. Is 37 your age? Just curious. thats how old I am and have 4 small children. Our diagnosis look very similar as well.
I just got off the couch after a rest. I started with a headach around 11:00 and still kinda feel it there. I've been trying to ignore it and pass it off as stress, but after reading LynnW, I don't think I can ignore it anymore. Thanks Lynn. I totally agree with you. Tina
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Hi Tina-I was 37 at the time of DX...now 38, hopefully on my way to 39 etc...:)
We do have very similar dx. I have 2 toddlers, 5 1/2 and 4. Don't know how you handle 4!!
Sandy
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This thread was perfect timing. I just got back from my oncologist for a follow-up (I finished chem in Oct, rads in Jan and have been on tamox for 7 weeks). I almost didn't bring up a pesky shoulder pain that I have been experiencing, off & on, for several weeks - I hate to feel like a hypocodriac and I hate worrying about every paid. He didn't think my sypmtoms sounded like anything to be worried about - probably just inflammation - but since I looked worried, he is ordering an x-ray (he offered to do a bone scan but chemo ruined my veins in my good arm and I developed a needle phobia - I went with the x-ray option).
Strange - I have been thinking about this pain for weeks but haven't been really scared. But, now that I am scheduling a test - I am kind of freaked out about it.
It does help to hear that we are all experiencing the same fears.
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I just had to chime in on this thread to offer a bit of encouragement and hope to each of you.
I was diagnosed 3 years 9 months ago and in the first 2 years had cancer from head to toe (not really) and truly believed I did have a recurrence time and time again. It was so scary and so frustrating. I'd try and try to not worry about every ache and pain but then they would hang around for 2 or 3 weeks at a time and I'd think .... IT'S GOT TO BE CANCER. That ache or pain would go away and literally, overnight, a new one would appear. I'm not kidding. It about drove me insane.
Before breast cancer I'm sure these same aches and pains came and went as well BUT I never noticed them and if I did I put no stock into them. But, when our oncs. tell us to go on our way and watch for symptoms.....well....geez, what are we suppose to think.
As I've already stated, I am now 3 years 9 months out from diagnosis and I am here to tell you it does get easier. Much! The first 2 years were the hardest for me. After that I started believing that I just might be healed and had beaten this "beast." I started living each day as the gift it was and realizing that for that day I was well. I started realizing I was wasting the life I'd been giving by throwing away every minute with worry over what I had no control over.
So ladies, trust me, it does get better and I had to post to offer you that encouragement and hope. Time does heal. It never totally goes away, but that is normal and really should never totally go away. Being cancer survivors we need to be diligent in paying attention to our bodies and going in to see our docs whenever we think there truly may be a problem
God's Peace I pray for us all.
Mary Jo
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I find myself burying my fears along with my aches and pains, thinking to myself, "Oh this is just that hip pain I've always had"..........or "the pain under my right rib cage isn't my liver, it's just that nasty gall-stone that needs to come out." Perhaps I'm doing this because I'm still getting Herceptin..........but today I did ask my onc, oh-so-very-casually, if he'll be scheduling a bone scan and bone density test for me when I'm done. This is how my personality appears to people - very casual and confident, like I haven't a care in the world, when really the opposite is true. Deep down inside, I feel like I will forever be on this bad-luck roller-coaster.......perhaps it's just superstition.......but looking at my year-old scans, even the "normal" looking cyst on my liver seems like something evil that may, at any time, manifest it's true beastly nature. The same is true for the small cysts seen on both my ovaries........several doctors have seen these scans and have brushed them off, like they are nothing.........but knowing they are THERE make them suspect to me. Is this what it means to be a BC survivor? To be always doubtful - and suspicious and worried in the deepest part of our hearts?
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Thanks for sharing Mary Jo. I am not there yet, as many of us aren't. But, I hope to be someday. Thanks for encouraging all of us!
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Marejo, swimangel, Hope,
I just cried when I read this, I feel it is just dreadful to live this way and yet I am also comforted that I am not alone in this horrid psychological drama! I just spent the last month with pretty bad low back and hip pain, I avoided the docs at first because of scan anxiety then I agreed to an xray it came back negative and arthritic, pain did not go away, even after stopping Arimidex. Everyone in my family thought OK she is going to stop worrying, still very scared they ordered MRI. I was like you SwimAngel went back to original scans that showed kidney cyst and convinced myself that it had really been a met and had spread over last year and now pain in my hip and back that xray could not see. So waited for MRI and I had 18 panic attacks over the weekend and was planning how to live with METS.
Monday got clean MRI, now one would think that I would celebrate and get off the boards for awhile and get out and live. (this was my former personality, I really loved life and just did and did)
I was relieved with result but just came right back here for more. Just can't shake the malaise in my head. My Docs have prescribed anti dep's but just can't there yet because I don't want any more side effects than I already have.
MAREJO and others what is the advice for us just coming out of treatment to help with daily stress and get on our way with life?
Hope My Husband says the same thing " you are going to fine" I just know it. But I have not gone back to work, I don't get things done like I used to (drycleaning, groceries, fun stuff)
What is wrong??? I am a spiritual person and really believe that we can let go and trust God to a plan, but just can't seem to practice that right now on a daily basis. I have 3 young boys and really want to be with them and enjoy.
The funniest thing that will sum up my mental melodrama, is that I had a dream 2 nights ago that I was in a life and death fight with the TV character "MONK" the anal guy that has obsessive compusive disease. I killed him once yet he woke back up again. Totally a analogy of my subconcious I am fight with the side of my personality that wants to control this thing and obsess and just when I think I have it licked and I am peaceful he wakes up again to taunt me. LOL
Sorry just the ramblings of crazy BC survivor!
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What we have gone through can be labeled post tramautic stress disorder. It may require medication to get you back in your groove. There does not have to be side effects from antidepressants, but it takes weeks or even months to find the right one and the right dose for you.
I know I am not alone when I tell you that I don't think I could have handled my life without chemical help. There is just too much stress physically, mentally, financially and emotionally for one little brain to process!
There is no shame in needing help....don't deny yourself the joys of everyday living. I, too, think about mets, but then I can move on to enjoy a sunset or movie. Then I question again....
Cancer doesn't rule me, I rule cancer. Good luck all!
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The other day my husband asked how much it would cost to buy an MRI machine. This way I could scan myself. He of course was kidding with me but to a degree it is true. Before bc I was the last person to go to a doctor. You would have to drag me kicking and screaming. It's been almost 3 years since my dx and I still question everything. Thankfully I have a great support system at home and now here. Instead of googling everything, I actually come here first. I have learned a lot from all of you and the best part is we can relate to each other. I only wish I found this site earlier......
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Maire, a lot of us feel we are jinxing ourselves if we think TOO much about mets. Interesting that you feel the other way. We just can't win, can we? LOL
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