I've got a question...

outdoorgirl
outdoorgirl Member Posts: 1,565
edited March 2014 in Breast Cancer #1
My chemo onc and nurses have told me that if anything out of the ordinary happens health wise,that I'm supposed to let them know.
So here is my question... what is considered out of the ordinary for someone such as myself who is a 2 year,clean lymph nodes survivor who is on tamoxifen. What should I be watching for,and what is being too paranoid and being a hypochondriac?
I know that I should be asking my onc and nurses that-I probably will at some point.
Thanks early,
Patty

Comments

  • zahalene
    zahalene Member Posts: 670
    Patty,
    after we have had cancer every hang nail seems like a potentially serious problem.
    I have been a survivor for 23 years and I still get the heebie jeebies over any little thing that goes 'wrong'. So, in order to keep from loosing what little mind I have left, I have made a 'two-week' rule for myself.
    Whenever something suspicious occurs, I note the day I first noticed it and pay close attention to what happens for the next two weeks. If it isn't better or gone by then it probably won't get better on its own. That still does not mean it is something 'bad', but only that I should probably get help with it. And, of course, there are those issues that should be attended to right away, such as unusual bleeding or anything that causes severe pain.
    Having said all that, if something is keeping you from breathing normally out of panic, pick up the phone, call your doctor right away and get some peace of mind.
  • ladydi1
    ladydi1 Member Posts: 120
    zahalene said:

    Patty,
    after we have had cancer every hang nail seems like a potentially serious problem.
    I have been a survivor for 23 years and I still get the heebie jeebies over any little thing that goes 'wrong'. So, in order to keep from loosing what little mind I have left, I have made a 'two-week' rule for myself.
    Whenever something suspicious occurs, I note the day I first noticed it and pay close attention to what happens for the next two weeks. If it isn't better or gone by then it probably won't get better on its own. That still does not mean it is something 'bad', but only that I should probably get help with it. And, of course, there are those issues that should be attended to right away, such as unusual bleeding or anything that causes severe pain.
    Having said all that, if something is keeping you from breathing normally out of panic, pick up the phone, call your doctor right away and get some peace of mind.

    Great Advice!!!
    Zahalene:
    That is great advice. I am only 1 year out and still find it hard to adjust to the new normal and not panic at every new bump, lump or pain. I think your idea of a 2 week rule is excellent. Thank you!
    Ladydi1
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    zahalene said:

    Patty,
    after we have had cancer every hang nail seems like a potentially serious problem.
    I have been a survivor for 23 years and I still get the heebie jeebies over any little thing that goes 'wrong'. So, in order to keep from loosing what little mind I have left, I have made a 'two-week' rule for myself.
    Whenever something suspicious occurs, I note the day I first noticed it and pay close attention to what happens for the next two weeks. If it isn't better or gone by then it probably won't get better on its own. That still does not mean it is something 'bad', but only that I should probably get help with it. And, of course, there are those issues that should be attended to right away, such as unusual bleeding or anything that causes severe pain.
    Having said all that, if something is keeping you from breathing normally out of panic, pick up the phone, call your doctor right away and get some peace of mind.

    Thanks zahalene!
    Thanks for replying!
    It seems like my family doctor has been seeing me a lot these days! All legitimate reasons,but it leaves me feeling like a hypochondriac sometimes and I'm just ready for someone to say"You're crazy,and stop bothering your doctors about nothing!"It's at the point where even if something is really wrong with me,I need my friends and husband to talk me into going to see the doctor - because I'm digging my heels in the sand.
    So you're a survivor of 23 years and you still get nervous about that? I guess it never really goes away,does it?!
    Thanks for telling me what you do,I'll remember that and use it for a guideline!
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    zahalene said:

    Patty,
    after we have had cancer every hang nail seems like a potentially serious problem.
    I have been a survivor for 23 years and I still get the heebie jeebies over any little thing that goes 'wrong'. So, in order to keep from loosing what little mind I have left, I have made a 'two-week' rule for myself.
    Whenever something suspicious occurs, I note the day I first noticed it and pay close attention to what happens for the next two weeks. If it isn't better or gone by then it probably won't get better on its own. That still does not mean it is something 'bad', but only that I should probably get help with it. And, of course, there are those issues that should be attended to right away, such as unusual bleeding or anything that causes severe pain.
    Having said all that, if something is keeping you from breathing normally out of panic, pick up the phone, call your doctor right away and get some peace of mind.

    My Thanks as Well
    Thank you, Patty, for asking this question, and also Zahalene, for sharing your excellent "rule." Any advice from you is valued: we all want to be like Zah, in more ways than one.

    Patty, as far as any specific symptoms, I did just get an NCI treatment manual and was reading it. Your post reminded me of it, so here is the list of changes to pay attention to and report:

    A pain that does not go away
    New lumps, bumps, swelling, rashes, bruises, or bleeding
    Appetite changes, nausea, vomiting, diarrhea, or constipation
    Weight loss you cannot explain
    A fever, cough, or hoarseness that does not go away
    Any other symptoms that worry you

    These are not specific to someone taking tamoxifen, just for cancer survivors in general.
    Also, when I asked about future monitoring, my onc . did say I would need closer monitoring by my PCP. Sounds like you are staying in touch with yours.
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    Moopy23 said:

    My Thanks as Well
    Thank you, Patty, for asking this question, and also Zahalene, for sharing your excellent "rule." Any advice from you is valued: we all want to be like Zah, in more ways than one.

    Patty, as far as any specific symptoms, I did just get an NCI treatment manual and was reading it. Your post reminded me of it, so here is the list of changes to pay attention to and report:

    A pain that does not go away
    New lumps, bumps, swelling, rashes, bruises, or bleeding
    Appetite changes, nausea, vomiting, diarrhea, or constipation
    Weight loss you cannot explain
    A fever, cough, or hoarseness that does not go away
    Any other symptoms that worry you

    These are not specific to someone taking tamoxifen, just for cancer survivors in general.
    Also, when I asked about future monitoring, my onc . did say I would need closer monitoring by my PCP. Sounds like you are staying in touch with yours.

    Thanks Moopy!
    I appreciate that info.
    How are rads going?
    Love,Patty
  • Moopy23
    Moopy23 Member Posts: 1,751 Member

    Thanks Moopy!
    I appreciate that info.
    How are rads going?
    Love,Patty

    Rads
    You're welcome, Patty. I am getting used to the process and environment with Rads. I do have a question, though: is it normal to be really, really tired already? I just come home and sleep. It's been almost 2 months since chemo, so I wasn't expecting to be so out of commission this early.

    Thanks for asking, Patty.
  • mimivac
    mimivac Member Posts: 2,143
    Excellent advice
    I agree 100% with Zahlene and Moopy. Persistent or severe seems to be the criteria. Anything that doesn't go away within one or two weeks, and anything that is severe. For instance, I wouldn't wait two weeks for severe pain, but would for minor pain that comes and goes. I think you're doing it right, outdoor girl. Unfortunately, we will always be monitored more closely than before. Think of them as minor hassles for peace of mind. I struggle with the same issues.

    Mimi
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    Moopy23 said:

    Rads
    You're welcome, Patty. I am getting used to the process and environment with Rads. I do have a question, though: is it normal to be really, really tired already? I just come home and sleep. It's been almost 2 months since chemo, so I wasn't expecting to be so out of commission this early.

    Thanks for asking, Patty.

    Moops,
    It's going to take a while for your body to not feel tired anymore.Chemo was hard on it,and rads can make you tired too. Sorry that I have to be the bearer of bad news...
    Naps are a good thing. Give your body time.
    Glad to hear that you are getting used to rads-it will pass by quickly!
    Love,
    Patty
  • CR1954
    CR1954 Member Posts: 1,390 Member
    Moopy23 said:

    Rads
    You're welcome, Patty. I am getting used to the process and environment with Rads. I do have a question, though: is it normal to be really, really tired already? I just come home and sleep. It's been almost 2 months since chemo, so I wasn't expecting to be so out of commission this early.

    Thanks for asking, Patty.

    Hi Moopy....
    I think I was actually more tired when doing rads than I was doing chemo. But I didn't get extremely tired with rads until the last few.
    Is your rad onc monitoring your blood? I had blood drawn every week while doing rads, just to watch for anemia or low white count.
    I am guessing that they are probably monitoring you very closely, but ask the techs or doc about your extreme fatigue.

    Hugs,

    CR
  • mimivac
    mimivac Member Posts: 2,143
    Moopy23 said:

    Rads
    You're welcome, Patty. I am getting used to the process and environment with Rads. I do have a question, though: is it normal to be really, really tired already? I just come home and sleep. It's been almost 2 months since chemo, so I wasn't expecting to be so out of commission this early.

    Thanks for asking, Patty.

    Not sure, Moopy
    Although my doctor warned me about chemo's latent effects, so it could be that. She said that the fatigue could last a few months. But good idea to check blood counts if you're extrememly tired. I hope you're doing well otherwise, Moops! Let us know all the great things you're doing in St. Louis. Joe said that it was a kind of vacation for the two of you.

    Mimi
  • rjjj
    rjjj Member Posts: 1,822 Member
    Zah
    When you have a hammer...everything looks like a nail! I think that is good advice from the rest of our sisters.
    I asked my rad onc. yesterday, why not MRI's, and pet scans after we are done. He said to many false-positive readings, and that the gov. is involved, making it hard to get ins. to pay for it. Moopy's list was good. And Moopy, I am more tired now than i have ever been in my life! I suspect it isn't just the rads but also all the emotional changes (living in a new place etc.) contributing to it all. Just get lots of rest..soon you will be back in the comforting surroundings of your home and familiarity of friends.
    love, jackie
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Great advice.....and to add
    Great advice.....and to add a couple of things, Tamoxifen can cause vision changes and cataracts although this is not very common, I did experience the vision changes and one other thing is swelling of the lower extremities, depression and shortness of breath. I guess that's more than one other thing :) Best of luck to you!

    jan
  • outdoorgirl
    outdoorgirl Member Posts: 1,565

    Great advice.....and to add
    Great advice.....and to add a couple of things, Tamoxifen can cause vision changes and cataracts although this is not very common, I did experience the vision changes and one other thing is swelling of the lower extremities, depression and shortness of breath. I guess that's more than one other thing :) Best of luck to you!

    jan

    Thanks you guys
    for all of your advice and info. I really appreciate it!
    Love,Patty
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    CR1954 said:

    Hi Moopy....
    I think I was actually more tired when doing rads than I was doing chemo. But I didn't get extremely tired with rads until the last few.
    Is your rad onc monitoring your blood? I had blood drawn every week while doing rads, just to watch for anemia or low white count.
    I am guessing that they are probably monitoring you very closely, but ask the techs or doc about your extreme fatigue.

    Hugs,

    CR

    Rads Fatigue
    Thank you all for your information and advice. My onc. here will do bloodwork next week, so I will find out if my wbc is lower than it was. Cindy and Jackie, I appreciate knowing that it is not abnormal for me to be more tired with rads, though of course I wish you two had not been affected like I seem to be. Still, once again, I feel not alone, and I'm grateful for that.!
  • jk1952
    jk1952 Member Posts: 613
    1-week rule

    After I was treated for BC in 2000, when I had my next physical, my primary care physician gave me the one-week rule. It's the same as Zahalene described, but he suggested that I wait a week. In addition to the potential cancer symptoms, I would also include something that would have been out of the ordinary before BC. For example, I had a very sore throat (which was worse than any I'd had since I had mono over 30 years ago). With something like this, I probably wouldn't wait a week.

    Joyce