bone pain

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Ellison
Ellison Member Posts: 68
edited March 2014 in Breast Cancer #1
Hi all, I have been reading your e-mails trying to find out if anyone is feeling what I am feeling. I have chronic pain in my feet. It gets worst at night. When I get up to go to the bathroom I have to wear socks and slippers. Bearfoot days are definitely over. I go to the store get what I need and home again. I forgot to mention, I also had 6 Adriamicin/Cytoxin treatments every 21 days and something else was in the mix.. and 33 radiation treatments. This was for a lump removed, no cancer in my lympnodes. Now almost a year out, I started having pain in my right knee, right hip joint and hip around the middle of my back. I had xrays of the hip, blood work and a bone scan last week. My oncologist called me two days later and said she did not like what she sees. I still don't know what she sees she does not like. Just hearing her voice when she called me at work put me in a spin. She said the pain on my right side and my feet is arthritis. What she sees that she does not like is on my left side. Go figure... She ordered 4 xrays of my brain, xrayed my pelvic and back. Took more blood. Needless to say I had to feel sorry for myself, a little scared you know... She told me the morning she called, if you don't hear from me by next week just keep your Oct appt. After I finally took charge of my self, I called her office on Tuesday asked the nurse if she ordered those xrays and blood stat. If not I was told I have to wait 10 days before any results. I let her know I had a bad holiday weekend. Had the funeral planned and all that, I am sure none of you have ever done that... I am still waiting for the results... I just know right now today I do not want to do chemo and I don't want to take tomoxafin. Tomorrow I might think different. I don't feel physically and mentally ready to do it again.. If it didn't work the first time what makes me think it will work this time... I thought maybe some other alternatives.. Anyway I don't even know what it is yet... Thank you for listening...

Comments

  • bunnie
    bunnie Member Posts: 233
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    hi sorry your having so many problems right know hope they can figure it out,. try to stay posive i know it is hard sometimes. iam still fighting my cancer i have been for almost two years straight you are not the only one that has planned the funerl i have also. please keep us posted. Bunnie
  • momof2
    momof2 Member Posts: 81
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    Hi Ellison,

    Bone pain can be quite hard to endure. I just had surgery for a broken neck due to my breast cancer mets to my spine and am in a halo brace. THings have been pretty rough lately for me as well. I have been battling breast cancer off andon for the last 3 1/2 years, since I was 24. You are right in sticking up for yourself. My radiation doctor sent me home when I told him how bad my recent neck pain was...before my surgery...luckily I called my oncologist, got in right away, was admitted tothe hospital for pain control and the source of the problem was found within hours. I am lucky I can walk and was not paralyzed from the neck down. Keep your chin up, you will be amazed what you really can endure when you are faced with it.

    Carrie
  • mssue
    mssue Member Posts: 242
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    It's sooo hard to wait-a gazillion things go through your mind.On top of everything else you are going through right now - so much pain..I too had the AC but only 4 ,no radiation(had the radical mastectomy)I finished in January this year.I still have problems with my lower back and lower ribs,they've ran test-couldn't find anything.So I figure it is something I have to live with???I don't know,but my heart goes out to you.
    My onocologist told me that the treatments that I recieved could cause another cancer to surface later-I love how they wait until you're half way finished to let you know this.I had specificly asked about this before I started to no avail everyone I talked with acted like they had no knowledge of this.I guess it's the lesser of the two evils,if I hadn't agreed to treatment and it came back I would've felt like I didn't do everything possible to survive and be with my children and husband,the Dr says the chemo probably saved my life-this could be true-who knows.I guess we make the best decision we can under the circumstances-please try and keep your spirits up,be strong and take extra special care of yourself and try and find things to occupy your mind.You are never alone ,I hope everything comes back pleasing for you--keep us posted!
  • Ellison
    Ellison Member Posts: 68
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    mssue said:

    It's sooo hard to wait-a gazillion things go through your mind.On top of everything else you are going through right now - so much pain..I too had the AC but only 4 ,no radiation(had the radical mastectomy)I finished in January this year.I still have problems with my lower back and lower ribs,they've ran test-couldn't find anything.So I figure it is something I have to live with???I don't know,but my heart goes out to you.
    My onocologist told me that the treatments that I recieved could cause another cancer to surface later-I love how they wait until you're half way finished to let you know this.I had specificly asked about this before I started to no avail everyone I talked with acted like they had no knowledge of this.I guess it's the lesser of the two evils,if I hadn't agreed to treatment and it came back I would've felt like I didn't do everything possible to survive and be with my children and husband,the Dr says the chemo probably saved my life-this could be true-who knows.I guess we make the best decision we can under the circumstances-please try and keep your spirits up,be strong and take extra special care of yourself and try and find things to occupy your mind.You are never alone ,I hope everything comes back pleasing for you--keep us posted!

    Thanks to all of you for your support. It helped to be validated about the insensitive way my doctor and her staff is handling this. Honestly I am quite dissappointed and surprised. I still have not heard from her today, but I will call again tomorrow. Your words are encouraging and helped me get thru the day at work with a lot more ease. I loved your humor. Your all so darn great and strong in spite of all you have and are enduring. I think when I know what I am up against I will be ready to kick butt again....
    I am so greatful to be a part of this discussion group.
  • jamjar62
    jamjar62 Member Posts: 135
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    I've picked out the songs for my funeral and married off my husband! I thinks its normal to go there at first....almost necessary in a way. Once you've considered the WORST possible future, then you can pull yourself up and say Okay, now I can face anything. The hard part is to not stay in that rut. I slip back into it once and awhile, feeling very sad for myself.

    Stay on your doctor's office. No reason you should have to wait 10 days for lab/xray results. That's ridiculous. I always call and ask the nurses to call the lab or imaging center to get a verbal report especially if a weekend is coming up. You'd think they would understand our panic and expedite these results.

    Whatever you hear, you remember you are strong and brave. You've gotten this far and you CAN do whatever you have to do. As my grandmother says though "Don't claim it til you know it".

    Blessings,
    Karen
  • inkblot
    inkblot Member Posts: 698 Member
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    Hi Ellison:

    I know how upset and frightened you are right now.

    At least part of that misery is unnecessary! Here's why: Doctor should never tell someone: "I don't like what I'm seeing" and then not elaborate at all on the statement. That she concluded by saying if you didn't hear from her, to keep your next appointment, is ridiculous, since it's some time in the future. Here's how it could have gone better, with a bit of caring and sensitivity on the docs part: "Your right side looks like arthritis but I'd like some more studies on the left side...we'll get some films and labs tomorrow and I'll ring you as soon as we get the "stat" results. How difficult is that? When I refer to stupid doctor's on this website, how yours handled this is an example of what comes to mind. A complete lack of sensitivity by our doctor and we can go bonkers in 24 hours or less! Leaving you to imagine and conjure up vile images of the worst is not kind or thoughtful at all and it's completely unnecessary!

    Scenario: Say I'm your long time good friend and neighbor and we know and trust one another. I ring you up at 3 a.m. on a dark, foggy night and tell you that I think I see a prowler on your porch but go on to say that I think you should just go back to sleep and that we'll call the police a week from Thrusday! You're my friend who was robbed and assaulted in your own home, just the previous year, so what kind of thoughtless person am I and how terrified and nuts are you going to be by the time the sun comes up, the fog clears and next Thrusday gets here??? After all, the possible prowler isn't on MY porch! Dramatic analogy, but isn't this doing the same thing to a cancer survivor when a doctor rings us up and says things like this? It's cruel. It's no mystery that you've planned the funeral!!!

    My thought is that you should ring your doctor's office and speak directly with her. Ask about the status of the labs and films. It's time to advocate for yourself. This is your body, your life and your decision. Unless you're ok with it, you don't have to sit around for an extended period of time, in pain and scared beyond words. Not knowing is worse than knowing the worst and you have the right to insist on getting to the bottom of it in a timely fashion. Not at someone else's convenience.

    My heart aches for the position you're in. We've all had to wait for tests, etc. but your waiting seems overly long, particularly after the doc saying she doesn't like what she sees?

    Following chemo and/or rads, our bodies can do some strange things, so all pains, even one's lasting a long time, are not cancer. One of my early bugs was having several of the tendon sheaths in my body become inflamed. Specialist said this is not really uncommon following chemo. Oncologist, (you guessed it) said she'd never heard of this happening before! I had some persistent hip pain on the right side and after x-rays, MRI's, nothing was there, just some mild inflammation in that tendon and sheath. It finally healed, thank goodness.
    My right wrist and hand weren't so lucky. After over a year of trying bracing, injections, pills, cold, heat, physical therapy, etc., I finally submitted to surgery and that fixed it. The next summer I took a spill on the pool deck (trust me, you wouldn't even want the details of that fall) and again found myself braced, on crutches, wrapped, a cast on one ankle, a broken great toe, a torn ACL, things sprained and strained and naturally, my tendons chose this time to flare again, just to compound things. It was quite a trip. So, when I have aches or pains, I haven't a clue if it's the result of damage from the fall, the chemo or if the cancer is coming back! Know what I do? If it isn't excruciating, I continue with light Yoga, rest overall a bit more than ususal and just wait and see. I prefer to think that nothing is cancer, rather than everything IS. If it ever is cancer again, then maybe I'll have a good reserve of energies to deal with it because I'll have spared myself fear and worry ahead of time. It's just what works for me.

    Thoughtless doctor's can certainly impact our resolve and our ability to remain calm and focused though. All the more reason to advocate strongly when necessary and fight to keep our emotions balanced, while we wait. Try to listen to the "facts" in what your doctor's say and put less emphasis on what they may "muse" about in their thoughtless approach.

    I noticed that you've got yourself going into chemo again already. First, it's YOUR decision whether you will ever have chemo again, even if it's indicated. No one can dictate treatment to you. In retrospect, when I think of my own chemo experience, I wouldn't be ready to walk out the door tomorrow and have another dose of it either but if I felt that it was in my best interests to go for it again, then I likely would. I'd want no one pushing me in such a decision though. I know I'd have to decide for myself. Any decision would depend upon quite a few factors. None of us can know exactly how we'd decide until it's before us really, so why try in advance? Probably a good idea to cancel that chemo appointment you have in your head! LOL

    Try to ease your horse back in front of the cart for now and since you've already envisioned the worst, try to envision the best. Can't hurt and may help you feel better while you're waiting.

    Hoping you get those results SOON! Become a demanding "QB" if you have to and please keep us posted on how you're doing in the interim.

    Love, light and laughter,
    Ink