Emotional Support Needed

Discussion in 'Fibromyalgia Main Forum' started by MsE, Feb 12, 2011.

  1. MsE

    MsE New Member

    I have had CFS for many years, and I'm 76. I wrote not long ago about having been diagnosed with a particularly nasty form of breast cancer. I am posting the following on the cancer board as well as this one. No one from that board replied to my earlier message. So, I'm posting here again as well. I'm hoping that someone can offer some encouragement as right now I need it.

    The word from the chemo oncologist is that I am NOT a good candidate for chemo. The word from the radiation oncologist is that she would recommend a mastectomy. She thought radiation would raise havoc because of the CFS.

    I just had a lumpectomy a couple of weeks ago. I'm still terribly bruised and one wound still not healed. Nothing will be done for at least a month.

    So, last night I talked with my surgeon about a mastectomy. She offered: "If you were my mother I would not want you to have radiation." The surgeon also said I had a 70 to 75% chance the cancer would not return to my breast. She also said she wouldn't be in a big hurry to have a mastectomy. Said I could wait and tackle that IF the cancer returned.

    But if there are sneaky little hiding cells, as the oncologist says, and if TTN cancer is as aggressive as they say it is, how do I know some of the little critters aren't clumping into a tumor as I type this note? Aaaarrrgh.

    So, why am I writing? Because I'm upset. Because I can't think straight. Because I don't know what to do. Because my boob is sore. AND, because if I don't have a mastectomy in March, I won't have anyone available to care for me while I heal. AND, because I won't be able to talk with my surgeon again until Feb. 22nd. AND because another daughter, who is involved in the medical field, says, "Don't go by what the surgeon says. Go by what the oncologists say." Okay. The radiation oncologist recommended a mastectomy as her first choice for me. The chemo oncologist, after he said I wasn't a viable candidate for chemo for several reasons, started to discuss a mastectomy as an option, and then started talking about a mastectomy's "psychological effects on a woman's sense of femininity" (or something like that) when I said I hated the idea of more surgery which have nothing to do with whether or not I have two breasts. At 76--big deal! So he sent me to the radiation oncologist, but that was before I knew all the side effects of radiation therapy.

    The chemo oncologist also said there could very well be other cancer cells in my breast lurking around that didn't show up in the sentinel node, the other node they took, or the tissue around the tumor. He said at the present time I am cancer free--unless cells are lurking elsewhere. Triple negative cancer is very aggressive. He guessed there were cells lurking in there, undetected and undetectable at the present time. But

    So now I am probably going to have to have a mastectomy after I heal from the lumpectomy. I suspect this message is confusing. It's the best I can do right now. I guess I just need some emotional support.
  2. hermitlady

    hermitlady Member

    Well, I don't really know what to say except I'm so sorry you're having to go thru all of this. I know I would probably just fall into a million pieces right now if I had one more illness to deal w on top of the FM, CFS, Menopause, and Depr.

    I do tend to agree w you about the mastectomy, just get rid of all of the potentially cancerous tissue. I think as we get older, our breasts tend to become just another body part...I don't know if that came out right, but in the long run, if it will help you the most, then do what you feel is right.

    Our quality of life should be the most important IMO, and the chemo or radiation would be incredibly hard to live thru w your other illnesses. If it were me, I would probably lean toward the mastectomy option also.

    I'm sorry you don't have more support, I know how hard that is. And I'm also sorry I don't know more about this subject to give you any credible advice. All I know is life is hard, harder than I had ever imagined...but we just have to make the best of what we have. Some days it's easier to think that way than others.

    Best of luck to you and I'll be thinking about you....xoxoxo Hermit
    [This Message was Edited on 02/12/2011]
  3. MsE

    MsE New Member

    You're quite right. Life IS hard. I guess it is supposed to be so we will learn the lessons we are supposed to learn. I think my lesson is about bravery 'cause right now I don't have any. Also, about making decisions, because doing so is very difficult for me. Always has been. I envy one of my daughters who makes good decisions very quickly and then moves on without qualms.

    Thank you for writing. I just needed to vent because (and I won't admit this elsewhere) I'm scared.
  4. kellygirl

    kellygirl Member

    You can have someone come in to assist you, that was my job. Call your Senior Services. I use to go in to people's homes that were seniors and disabled and assist them.

  5. MsE

    MsE New Member

    Well now! Why didn't I think of that! Of course I could do that if necessary. Thanks for the reminder. MsE

    LEFTYGG Member

    Im so sorry you are going through this.have you researched all about this type of cancer?do you take vitamins? I would get more opinions from different sources. my heart goes out to you. love gail

    please keep us updated we all care.
  7. MsE

    MsE New Member

    Yes to the research and yes to the vitamins. None of the research is hopeful except for aggressive chemo, which is not an option for me at 76 with CFS, etc. I may go to Seattle to see the big-wigs at Fred Hutchinson with the Seattle Cancer Care Alliance, but our local people are satellites of that group, so.....why bother? Yes. I am depressed this afternoon. But I am truly grateful you wrote. Thank you.

  8. TigerLilea

    TigerLilea Active Member

    I am really sorry to hear about your cancer. I think breast cancer has got to be the most devastating cancer that a woman can get.

    I would definitely go to Fred Hutch and get a second opinion from another oncologist. I would also ask them about taking vitamins and supplements as some of them can actually feed cancer cells so you want to be careful about what you are taking.

    Do as much research as you can. Just because someone is a "specialist" doesn't mean that they are necessarily right. I would talk to several oncologists and see what the consensus seems to be.

    Good luck to you.
  9. MsE

    MsE New Member

    Thank you. Yes, I know some vitamins can feed cancer. The radiation oncologist had me bring in a list AND all my vitamins and supplements and went through them. She told me to quit taking extra E because it can make bleeding worse, and my boob is still very darkly bruised. Also, if I start radiation, to stop taking C. So far two oncologists have told me no chemo and mastectomy preferred to radiation as far as results are concerned. Four local friends who have had personal experience with all of the above say they would grab the 70-75% it won't be back statistic and run with it, and live my life. In other words, forget any more treatment unless it comes back. Today I feel so emotionally yucky, and my boob hurts, and my arm feels like it has been burned, and my back aches, and and and....I just want to disappear.

    I'll probably end up asking for a referral to Fred Hutch, but not until I heal a bit more. CFS is back in full force and I just want to whimper. Soooo tired. Soooo sad. Soooo indecisive. By tomorrow I'll be disgusted with myself for sending this and other messages to all you guys, but right now it's a matter of getting through today. I don't like today.
  10. MsE

    MsE New Member

    GE? What's a GE? GP I understand, but GE? Do you have cancer, too? Good for your friend who had the mastectomy and lived a long life. I would like to do that. Your message is cheering. BUT, what's a GE? What have I forgotten? Again. :)
  11. MsE

    MsE New Member

    Oh. GE., Grapeseed Extract. Of course. Now I remember. Duh. thanks!
  12. Jana1

    Jana1 New Member

    Hello MsE. I remember you from quite a while back. Were we trying the guafisinian protocol? I stuck for a few months, but didn't feel any differently so stopped the whole thing. I do think I remember you from that.

    It doesn't make any difference how I remember you, but the part of your post that struck me was the part that you didn't have anyone to take care of you. That is lonely, and the ones of us here that write to you can't come and offer care, but I actually would. IF my darned FM would go to sleep for a few months!

    This is what I offer you. I don't know your religious beliefs, but I know mine. I offer you prayer and comfort. If I don't know all about you, God does, so that is what my prayer is. That you will feel his comfort surround you and give you peaceful sleep. Sleep that does not include all the options running again and again through your mind. Just plain, undisturbed sleep.

    I hope you keep us posted on your plan and how it is carried out. Thank you for reading my rather unclear post!

  13. rosemarie

    rosemarie Member

    What type of Cancer do you or did you have? My cousin had IBC Imflamortory Breast Cancer. She had to to see her docotor many times before he did any thing to treat her. Her MD thought she had a breast infection not cancer. But finally after taking antiboticis what were not helping her she started to research her situtaion. IBC does not have a lump it make you breast tissue on the out side look like rind of an orange you know it had pits in it. She fianlly had treatment done and found out that she had an agressice form of breast cancer. Her treatment was done in a ssset manner, First chemo then a mastectomy incouding all her lymphs glands cancer was found in a few glands, then she had more chemo, radiation and finally one last round of chemo. Today she is NED, NO evidence of disease. She does not have any cancer at this time , but this cancer does not come back as breast cancer again it comes back as liver , pancreceas, brain, Most women after surviving for longer than 5 yrs are said to be cancer free Cured..... NOt her she has been NED for 7 + yrs and is doing well. She had so much support from her family, sisters brothers parents and extended family .She lives in Ca now , she also has a great amont of faith in God, faith in her religion and trusted it. Her faith and family helped her to surviive. I Pray that you find out what you need to do in order to make sure you get the right treatment. Have faith in God , of higher power, know that you are not alone. some times I don't answer posts becasue I don't know what to say or how to say it. I have not lived with cancer yes it has touched my life mostly on my mothers side of the family. I have ahd two Aunts who have had lumpeceomies.6 furst cousins who have had different kinds of cancer and some have had total masteccomy's others have had lumpectomies, But all have the same faith in God and religion.
    I will be praying for you and your health, that you will recover from this illness and that once it is gone it will stay gone. May the lord bles adn keep you safe. ~HUGS~
  14. AnneTheresa

    AnneTheresa Member

    Thanks so much for sharing and reaching out, giving us the opportunity to hold you in our hearts and minds during this part of your life's journey. I can appreciate how confusing this must be for you and how alone you must feel.

    The home-care opportunities that were suggested earlier in the thread may be available for more than just post-op care. If you look into it you may find that support is available to help you cope with the emotional aspects of the disease and/or the impact the situation is having on your ability to cope with CFS. Most often, agencies who provide outreach in terms of home-care and health care also provide emotional support.

    I hope your experience with cancer is not too difficult and that you emerge from it a strong and healthy woman.

    God bless,
    Anne Theresa
  15. 3gs

    3gs New Member

    Iam so sorry you are going thru this.

    Right now my mom who is 82 just finished radiation. Luckly hers was caught very early. She had the lumpectomy then rad now unfornately is considering chemo.

    Please get a second opion for your piece of mind. Dont believe everything docs tell you as in regards to side effects.

    So far mom is feeling tired sluggish and got a slight burn at site. They said if she did chemo (take pill for 5yrs) would have slight hot flashes.

    I went on the Susan B Klomen site. Do they feel they got it all with the lumpectomy?? It is so hard to decide with CFS what to do.

    take care
  16. MsE

    MsE New Member

    I accept, with gratitude, your prayer and offer of comfort. And, your wish for "Just plain, undisturbed sleep" is perfect. Thanks.
  17. MsE

    MsE New Member

    Triple Negative Breast Cancer was the diagnosis. This is something older white women don't usually get. Young women and African American women are the usual targets. That means statistics on what to expect as a 76 year-old woman are few. This type of cancer wasn't even identified until 1994.

    But for now, I don't have any sign of cancer in any nodes or tissue that was analyzed. I just have a very darkly bruised and sore boob from the lumpectomy. Evidently I bled more than normal, and it is taking longer than usual for the whole mess to heal. CFS at fault? Who knows?

    I agree that faith in God and the love of family are imperatives in dealing with this. Fortunately, my family is terrific and I have a strong spiritual life. Thank you for your prayers and for writing.
  18. MsE

    MsE New Member

    Thank you. I appreciate your input and your good wishes.
  19. Tommyhoney

    Tommyhoney New Member

    Dear MsE,
    I'm very sorry to hear of your troubles, but glad you chose to share here, and very glad to see all the wonderful responses you've had.
    You must have so much going on right now, trying to take your strength. Please hang in there, and know there are many people who can help in many different ways.
    I will keep you in my continued best intentions...wishes for peace & strength.
  20. TigerLilea

    TigerLilea Active Member

    Here is another review from Amazon.com for the same book:

    >>>This book like many similar starts with two valid premises: we would all like to cure cancer and we would like to do it in a way without nasty side effects.

    The downfall of this book, like many similar, is that the treatments proposed are not always free of side effects, and their track record is at best unknown, or at worst pathetic. For example the cesium advocated here can cause a particular kind of heart irregularity and has been linked with sudden deaths in people taking this medication. An example of the latter: laetrile works in <1% of cases--I gather most doctors consider a potential drug with this kind of activity to be useless and not worth developing: this doesnt stop it being sold to people I know for many $$.

    As with so many other things: if it seems too good to be true it probably is. Dont waste your money.<<<

    Jamin, if cancer treatment were as simple as taking a supplement, don't you think that everyone would be using it. Why would any MD send their patient to a surgeon and oncologist when all they would have to do is send them to the healthfood store. Especially in countries with National Healthcare where healthcare isn't for profit.