Anyone w DCIS ever have mets?

seeknpeace
seeknpeace Member Posts: 259
edited March 2014 in Breast Cancer #1
Ok, I read some stories and I am torn between self loathing for being afraid when I had dcis and was so lucky, and then being scared of metastasis. DCIS is almost 100% curable. Ok. I know that. I am lucky. Bilateral mastectomy with tram flaps, even with the severe anemia that caused my hair to fall out, and the depression, and I cannot find work, so I am still lucky.

I just don't know how to feel. I know all the above, but, I just want to wail at the world sometimes, for getting sick, for losing my business and not planning better while I had it, for being smart enough to fight my way to the top without a college degree, and now no one will hire me. I am overqualified, I am underqualified and I am drowning.

What I want to know....is there anyone here who has had dcis, with no lymph involvement, and then had a spread or metastasis? If there is, I just want to know. I cannot seem to really get any straight answers. Even when they tested me for the brac1 and 2 genes, (I am negative yay), the ppl who I talked to could not explain to me why when they create a hole in the cancer to do the core needle biopsy, it would not expose surrounding tissue and blood vessels to cancer. A lot of head scratching. They now are investigating fine needle biopsy to see if it causes spread to the lymph nodes, but, think that the core is good because it opens, cuts like a mutha and hurts so bad, then sucks the tissue up and seals off the end before it is withdrawn, so that decreases the chance of cancer exposure when withdrawn...huh? The thing still went into the cancerous area.. and, left a gaping hole.

So, anyone, at all, have you had a metastasis from dcis. I think that my bones hurt and now my foot has turned dark purplish on the entire top and that hurts, and on and on. I am also seeing a psychiatrist tomorrow, thank God. I need someone to help me. I do pray, and that helps, but, I am my worst enemy. I do love you all as my sisters and brothers and club members.

Jan

Comments

  • KLLONG
    KLLONG Member Posts: 8
    #2
    I had DCIS with one lymphnode barely involved. However no mets. I want you to know that you are not alone in your feelings. I am often angry about all of this. I sent out resumes and didn't even get called for interviews. Fortunately my old job came back to me but it's very low pay. For a while I really felt like killing someone or at least punching them. I went back on lexapro and that helped tremendously. I'm still mad though. I don't know if that feeling goes away. I've often thought about counseling. I will probably do it if the madness doesn't stop. I wish you well and peace. Just wanted you to know that you're not alone.

    Karen
  • Unknown
    Unknown
    #3
    You're LUCKY????????? good grief girl, cut yourself some slack! You're on an emotional roller coaster that's out of control right now and you're handling it a whole lot better than I did, and I didn't go through nearly as much as you have.
    Do you have an obsession that you can lose yourself in? That may sound like a strange question, but I enjoy playing the piano and when things have been bad for me there's nothing like pounding the piano - Beethoven works well :)
    What I'm trying to say Jan, is that you're NORMAL! You have every right to be angry, scared, tired, depressed, etc. - it goes with the territory.
    I hope the psychiatrist can help. Any time you want to vent, we're here - even if we can't help we'll listen.
    Clara
  • seeknpeace
    seeknpeace Member Posts: 259
    #4
    unknown said:

    You're LUCKY????????? good grief girl, cut yourself some slack! You're on an emotional roller coaster that's out of control right now and you're handling it a whole lot better than I did, and I didn't go through nearly as much as you have.
    Do you have an obsession that you can lose yourself in? That may sound like a strange question, but I enjoy playing the piano and when things have been bad for me there's nothing like pounding the piano - Beethoven works well :)
    What I'm trying to say Jan, is that you're NORMAL! You have every right to be angry, scared, tired, depressed, etc. - it goes with the territory.
    I hope the psychiatrist can help. Any time you want to vent, we're here - even if we can't help we'll listen.
    Clara

    Thank you both so much. I cannot tell you how many times, when I first found out, and I was like OMG and I am scared, I was told how lucky I was because it was found so early, and I do know that. I sit in the oncologists office and see all those brave ppl who are bald and sick and waiting for another dose of poison, while I am only waiting for a blood draw because of the anemia, and feel so guilty. I think that the guilt for being so "lucky" or for being not so bad as others is eating me up. I want to fuss. I want to complain because I cannot sit up without it hurting like crazy in my ribs and I wear out so fast. I have no stamina or energy. I want to cry, I want someone to say that I am not lucky. As my friend from England would say "Unlucky" (something that they say when ppl hit a fly ball, or miss the soccer net, etc.).

    I am the luckiest unlucky person around here.

    I did see the psychiatrist. First off is that he is conferring with a neurologist in his office about some cognitive testing. I cannot remember words anymore. Do some mri's for good old Blue Cross to pay for, for all those out there who they will not buy a wig for. And, then we will assess my meds. I have been on welbutrin for a long time, and I like it, but, I think that I need more.

    We take so much for granted when we are healthy. When we lose that peace, that confidence to plan our lives, well, it just sucks. I hate it. I want my old floppy, worn out breasts back, no cancer. Sorry, I just do. I miss my life. It is changed forever.

    Thank you for letting me vent. I did get a call about an interview for next week for a job. I don't really want it but, I have to take something. I am not sure that I can handle it. I guess we will find out soon.

    Jan
  • inkblot
    inkblot Member Posts: 698 Member
    #5
    Hi Jan:

    I wish and probably other's do too, that I could just respond in a short paragraph. LOL But, not in my nature, so here goes:

    Re your question: I don't know about the recurrence rates/mets for DCIS. I had Stage I (1 cm tumor, lumpectomy, chemo, rads) and am coming up on 3 years since treatment ended, in just a few months and I'm fine. I've a good friend who is over 20 years since mastectomy (a 3 cm tumor) and she's fine. I've a friend who is 15 years out from ovarian (Stages III and IV) and she's fine. She got a double whammy and was dx'd with DCIS (in 3 places in the same breast), at the same time I was going through chemo and she's also 3 years out from that and is fine. These are friends I knew before they (or I) had cancer. We're all sailing along, all doing well. For whatever that's worth.

    It occurs to me that your anxiety level about recurrence is up there right now. There are volumes out there, about how cancer spreads. All the technical stuff. Whose cancer may have a better chance of mets than another one, etc.. The bottom line, after exhausting ourselves trying to figure out what our own particular chances of it coming back may be, nobody knows and nobody can tell us that we're cured and will never have cancer again or that yes, it will come back again. Our bodies are wonders, far beyond predictions and percentages of medical science.
    There are curves and averages but those are guidelines and nothing more. Each person is different, inside and out. As I sit here writing this, I know and accept that there could possibly be some cancerous cells in my body, someplace, just waiting to organise themselves and lay me low again. Yet, I don't focus on that. It's not what my life is about. I spent my time in my corner, big fears and worries about just that. But I put my gloves back on and came out of that corner. I'm just not willing to give the fact that I had cancer, that kind of power over my quality of life. My thought is that if it ever comes back, I'll save my energy for then, not wear myself to a nub day in and day out, worrying about the "what if's". The what if's, I cannot do anything about. What I can do something about, is how I choose to think, live and be, each and every day. We can take excellent care of ourselves, eating well, supplements, relaxation and recreation, rest and meditation and always self improvement. Guarantees don't exist though. There is no reliable test or machine which can find a single cancer cell or little group of cells planning a party. It's something we must accept and get along with. Yet it's not something we need to give our lives over to worrying about. Why let cancer fears rule our every day? Why let it sap our energy, our joy and our loving from each day? Fears are rampant and a big hurdle in our recovery. They are normal for us. Now isn't that some state of affairs? LOL "We're considered normal, to be beside ourselves with fear". Most of us never thought we'd find ourselves in a situation in life wherein we'd be dubbed "normal" to be feeling like a lost lunatic. But we can and do feel like that. The good news is that we heal and find perspective. Hold on tightly to that
    thought, because it's true. Where you are is just part of the process of emerging out the other side of cancer. You will emerge Jan.

    All things considered, you're still rowing that boat pretty well, in my opinion! Just keep rowing!

    I know what you mean about feeling like wailing at the world too! LOL! My advice is to go ahead and wail. Swing left and right, screech and yell and let out whatever comes up in your emotions.

    There is no "just going back" to the way life was before. We are changed and that process of change is not easy. I've seen a few women who try to carry on, as before, after their bc experiences. Sort of like they put the whole thing on ice somewhere and just don't deal with it. Doesn't work well because the ice eventually melts and all those emotions and pain come crashing down. It demands to be dealt with, sooner or later, and the good news is that you're dealing with it! So, vent and moan and get it all out in your own time and you can begin healing and rebuilding your life into what you want it to be. No fear, no shame and no apologizing. Sometimes, life just plain stinks. Period. And I personally think it's perfectly ok to say so. We all hear so much about "keeping a positive attitude" but in order to keep it, we first have to grab onto it. Get a grappling hook to snare it if you have to! It's that important to our emotional recovery.

    It's all about stages and you're going through a tough one. Know that things WILL improve and that you WILL rebuild a good life. You will again find peace. Just have to pass through what seems like "trial by fire" first. For some of us that fire feels hotter than for others and/or seems to last longer. Just as we all respond different to certain medications and treatments, we all have a little bit different path to post cancer peace. Support is very important and you know that you can find that here and similar sites but we also benefit from support on a personal level. Use all your resources because people (friends, family, local support groups) really do want to help.

    Keep the faith, good luck with the Psych. doc and remember we're all here for you.

    Love, light and laughter,
    Ink

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