Anyone with CFS&FMS go through Breast Cancer

Discussion in 'Fibromyalgia Main Forum' started by Redwing, Aug 28, 2003.

  1. Redwing

    Redwing New Member

    Hi, I'm new here. I have had FMS since '92 and CFS for 3-4 years. A few weeks ago I was diagnosed with breast cancer. We also homeschool our children (10 & 14 yo). I was wondering if anybody out there has any advice.

    Redwing
  2. tandy

    tandy New Member

    So sorry of your DX. Healing thoughts going out to you~
    I'm sure this has been brought up here before and there are some that have gone thru treatments for breast cancer.
    Hopefully they'll be along soon to share some info with you. You can search previous posts on the subject by using the search box at the top of this page.Just type in breast cancer and some posts should come up.I believe it was just talked about yesterday??(or within the last day or so)
    Wishing you so much luck!!! Warm Hugs too~ :)
  3. ksp56

    ksp56 Member

    You are in my prayers! If there is ANYTHING I can do, please post for me. Hearing the words, "you have cancer", are devastating.


    I am a five year breast cancer survivor. I was 41 when treatment started. I had AC chemo (became quite the baldie!) and 6 weeks of radiation, followed by Tamoxifen for five years, if your cancer is estrogen based.

    Fibro had not reared it's ugly head when I was treated for cancer. I think the stress of it helped along the slow progression of fibro.

    What type of treatment are you having? I know with kids at home it is hard to find time to rest, but you really will need to. Especially dealing with both. Let other's take care of you and don't be afraid to ask friend's and loved ones for help.

    I didn't think I would be able to deal with all the cancer entailed. But I did! And I am a much stronger person than I ever could have imagined. You will be amzazed at yourself..

    Don't keep in anger, or sadness, or feelings of being frightened. Those will only make the fibro more severe. It will also help you to verbalize and get out some of the rage, that you might have. Journaling is good too.

    Keep your doctors informed about your fibro, they need to be aware of just how bad you feel having this DD, and how the cancer might affect it. Ask many questions and be your own advocate. This is a MUST. Like your doctor and feel comfortable with him/her. If you don't, find someone new. This is YOUR life, not theirs.

    How I wish I could do something for you. I will hold you close in my heart,thoughts, and prayers. You will have much support here. I know there are several others dealing with cancer currently. They can help you more about how to handle both DD at the same time.

    Once again, let other's help you! I wasn't very good at doing that, and it only hurt me!

    Many Hugs,

    Kim



  4. ksp56

    ksp56 Member

    i will continue bumping your message to the top until more of the others who have cancer, respond! Hugs, kim
  5. ksp56

    ksp56 Member

    Bumping with FORCE...... I know there are others out there going thru what you are. I will keep bumping as long as I need too!
  6. tandy

    tandy New Member

    Have you read the post by Sandy1,towards the bottom of this page?? Maybe theres some info there for you? Just trying to help :)
  7. Dlebbole

    Dlebbole New Member

    Hello Redwing - I have this overwhelming urge to find you somehow and hug you and cry! For me and for you. I'm sorry you have to go through this....

    I've had chemical sensitivity syndrome, extreme food sensitivities, CFS/fibro for a very long time. Wow! There's so much I want to tell you I don't know where to start. Will you be doing chemo? I did six rounds of FEC (if you need to know what this is, let me know) and actually got through the chemo itself quite well. In fact, my CFS symptoms DISAPPEARED! I mean they were gone. For the first time in 12 years I could exercise, go for walks, and I felt good most of the time. But noone warned me about the constipation that could result from the chemo and I ended up with an anal fissure, that totally incapacitated me with the pain. After a month of that, I had surgery to correct it, but still had two more round of chemo to do. Nightmare. Now I am laxative dependent, am very anxious most of the time, and constantly in pain with some problems that just aren't going away yet.
    I am half way done with radiation. My symptoms are returning. The food intolerances, the weird sensations, the dizziness, the fatigue. I envy the women who "just" have breast cancer and don't have to deal with all the problems of CFS/fibro. Having said all that, I think you can do whatever you have to do. Your children are older and can help out a lot. Your friends will want to help you - let them. When will you start with treatment? Diane
  8. chknmama

    chknmama New Member

    I was Dx'd Nov.5th. 2001.I had DCIS ,stage 1. I had a masectomy and then a preventative masect on the remaining breast.No chemo or rads.I am not taing Tamoxifen either.I am almost done with resconstruction.Just have to have nipples tattoe'd.I was also Dx'd with Fibro around the same time.All of this happened after I had a work injury to my lower back.I am now on SSD for my injury.HMMMM seems like this may all be connected.
    Hope you are doing well.Would love to talk with you.
    Gentle Hugs
  9. libra55

    libra55 New Member

    Hi Redwing,

    I guess the first thing I would tell you is don't panic and make sure you get a second opinion, or a third one if you think you need it. Try to get informed as much as possible about your particular type of breast cancer. There are many different types as you probably know and I don't know which yours is. Some form tumors and some do not. It depends on which type it is how the doctors will treat it.

    I have noninvasive noninfiltrating DCIS (ductal carcinoma in situ) at Stage 0. This was found by accident after a lumpectomy to remove a fibroadenoma (which was benign). At first I was scheduled to undergo radiation, but that plan was changed. Since it is estrogen based I did take Tamoxifen for 5 years. It has a lot of side effects (on the menstrual cycle, which is why it is usually given to post menopausal women) but I stuck with it. I go for regular check up and mammogram. I could have had a prophylactic mastectomy but I chose not to do that. I have not had any trouble since. I pray things will stay the same as they are. My surgeon told me that many elderly women are found to have DCIS in various stages when they are autopsied after death, but it was not the DCIS which killed them; it may have been an accident or stroke etc.

    Take your time and research your options, talk to people, ask questions. My best wishes for you.

    Hugs,
    Michelle
  10. Redwing

    Redwing New Member

    Thank you everybody for replying to my post. Thanks Kim for bumping me up! I wish I knew how to send private messages through this board as I'd like to talk to you ladies in more depth. I had a biopsy in Aug 2003 b/c of a suspicious mammogram. The Diagnosis is DCIS. The biopsy only got some of the microcalcifications so I have a non-invasion diagnosis but we have to see what the path reposts says after I have surgery. Yesterday we went to for a 2nd opinion (actually I was looking for a different surgeon), in a couple of weeks I will be going to Fox Chase in Phila for a more comprehensive 3rd opinion. I have been given these options so far: mastectomy, or lumpectomy with radiation. And of course I could have a lumpectomy and then refuse rads, but I don't feel it would be wise. I am inclined to do the mast as it would not include lymph nodes as this time and I really am concerned that the rads will cause even more problems for my CFS & FM. It's not just the treatment time frame I'm concerned about, but the long term. I have not been able to find anybody with FM & CFS who has also undergone radiation for BC. I'd love to know how it affected them both short & long term.
  11. chknmama

    chknmama New Member

    If you'd like to contact someone,maybe you can arrange to meet them in the chatroom sometime.Then exchange emails.
    Gentle Hugs
  12. Dlebbole

    Dlebbole New Member

    Redwing, I don't know how to do the chatroom. I've never done it before. but I'd love to contact you also.

    But for now, looking back on everything, I wish I had done a mastectomy and could have avoided radiation. I'm halfway done, but I can see that the second half will be very tiring and anxiety-provoking because of the return of my symptoms. I've only talked with a handful of women with CFS/fibro and going through radiation, but the story seems to be the same....flare of symptoms. Diane
  13. LABullard1212

    LABullard1212 New Member

    I'm a 6 yr survivor. Had the same noninvasive type,in an extremely early stage. I had to undergo a lumpecktomy, removing several lymph nodes, to check..then radiation so I read up on all supplements I could possibly take to save what was left of my immune system, and energy. I faced it better than friends and family, but my immune system decided it had had enough. Two months after I finished radiation, I tested positive for EBSTEIN BARR VIRUS. AND A WHOPPING CAUSE OF MONO . So, my CFS had awakened with a bang. And Fibro was starting to really introduce itself like never before. I can deal with this. Looking back, I don't know How I was so strong about the cancer. But making it my one priority for survival did it. I still take lots of the supplements I took then.
    If you ever want to get to a chat room , go to search for chat room schedules, just like you do for messege boards. I hope this helps more than discourages.



    [This Message was Edited on 08/31/2003]
  14. LABullard1212

    LABullard1212 New Member


    I'm a 6 yr survivor. Had the same noninvasive type,in an extremely early stage. I had to undergo radiation so I read up on all supplements I could possibly take to save what was left od my immune system, and energy. I faced it better than friends and family, but my immune system decided it had had enough. Two months after I finished radiation, I tested positive for EBSTEIN BARR VIRUS. AND A WHOPPING CAUSE OF MONO . So, my CFS had awakened with a bang. And Fibro was starting to really introduce itself like never before. I can deal with this. Looking back, I don't know How I was so strong about the cancer. But making it my one priority for survival did it. I still take lots of the supplements I took then.
    If you ever want to get to a chat room , go to search for chat room schedules, just like you do for messege boards. I hope this helps more than discourages.
  15. chknmama

    chknmama New Member

    If you'd like to talk ,we can meet in the chatroom.Just let me know when your available.
    Gentle Hugs