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mrsziggy
mrsziggy Member Posts: 20
edited March 2014 in Breast Cancer #1
Hello Everyone,

I am new here also. I made my 1st posting yesterday about back pain and I thank you for your response. I am 43, just had a dbl mastectomy w/ reconstruction, surrounded by family and friends, and I feel soooo alone. Is that crazy or what? I know they want to help but how can they help when I don't even know how I'm feeling. My cancer was non-invasive DCIS so I was told no treatment. That is wonderful so why I am I so scared? I was also told I only had C in my left breast - they said they saw calcifications in the right breast but none looked suspicious but my chances of getting it in that breast was very high. So I chose to go ahead and have the dbl mast. Come to find out it was cancer in the right breast also. I was so glad I decided to have the dbl. I am worried about not having any treatment. The doctors seem very non-chalant about everything and said see you in a year. I'm not sure how to digest all of this. HELP!
Tracy

Comments

  • chenheart
    chenheart Member Posts: 5,159 Member
    #2
    Welcome!
    Hello, Tracy!

    The wonderful thing about all of us in here~ we so "get it"! The emotions you are feeling are absolutely normal; to one extent or the other, and with varying degrees of intensity, every one of us has had your experience. As one wise poster said about the New Ones in here: We are your future, you are our past...and that truly sums it up!

    So, though you are new, from the moment you posted and became part of this family, know this: You are Not alone any more; we are holding your hand though any and all of it~ and you are free to express your feelings with us at any time!

    Hugs,
    Claudia
  • jk1952
    jk1952 Member Posts: 613
    #3
    chenheart said:

    Welcome!
    Hello, Tracy!

    The wonderful thing about all of us in here~ we so "get it"! The emotions you are feeling are absolutely normal; to one extent or the other, and with varying degrees of intensity, every one of us has had your experience. As one wise poster said about the New Ones in here: We are your future, you are our past...and that truly sums it up!

    So, though you are new, from the moment you posted and became part of this family, know this: You are Not alone any more; we are holding your hand though any and all of it~ and you are free to express your feelings with us at any time!

    Hugs,
    Claudia

    Tracy, I just recently had a
    Tracy, I just recently had a double mastectomy and reconstruction because of DCIS. This was after having a lumpectomy and radiation nine years ago for invasive cancer. The DCIS was in the same breast where I had the invasive cancer.

    My oncologist did not recommend any other treatments, now, either, so I think that this is common with mastectomies for DCIS. She did do a CT scan of my lymph nodes (she said that seeing I had had lymph nodes removed in 2000, that I couldn't have that done again). She also suggested that I have an MRI done at least every other year to make sure there weren't any new problems.

    My understanding is that with DCIS, the cancer has not spread since it's not invasive. But, if you are uncomfortable with 'see you in a year', I'd encourage you to go see the oncologist again to talk about the situation and your fears about not having more treatments. On ocassion, I've also gone to my primary care physician, too, just to talk things over with him, to be either reassured or to have him bring up questions that I should ask.

    I hope that we'll help you not to feel so alone.

    Joyce
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #4
    You're never alone here!
    Hi Tracy. You are not alone in being scared. I think we all were and still are at times. Unfortunately, it goes along with having bc. But, you can't let that stifle your life.

    I am puzzled as to why your doctors said "see you in a year". But, I didn't have a mastectomy, I had a lumpectomy followed by radiation. I see my radiation oncologist and my oncologist monthly now. Eventually, they said it would go to every 3 months, then every 6 months, then yearly.

    I hope that you find support and encouragement here as the bc survivors here have helped me so much. Good luck Tracy!

    Hugs, Kristin
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #5
    Of course you feel alone...
    I often feel alone sometimes when I am not on here, yet I am surrounded by family. It's because I have something that I feel they will truly never understand completely since they are not going through it (did that make sense?).

    I would also feel quite scared at "see you in a year". You just went through major surgery and reconstruction and now because you are not having treatment your just basically done? It seems quite soon to just turn you loose. I have a friend that had a matectomy because of DCIS and she does not require any other treatment (she did get 3 opinions!) but they are still watching her every 3 months. Either the Surgical oncologist or the Medical oncologists keeps an eye on her progress.

    I would maybe let them know your fears and ask why they feel you should not be seen for a year. If they tell you that is the way it is, then monitor yourself and make an appointment down the road if you feel you need to be seen. :) Pammy
  • mrsziggy
    mrsziggy Member Posts: 20
    #6
    Kristin N said:

    You're never alone here!
    Hi Tracy. You are not alone in being scared. I think we all were and still are at times. Unfortunately, it goes along with having bc. But, you can't let that stifle your life.

    I am puzzled as to why your doctors said "see you in a year". But, I didn't have a mastectomy, I had a lumpectomy followed by radiation. I see my radiation oncologist and my oncologist monthly now. Eventually, they said it would go to every 3 months, then every 6 months, then yearly.

    I hope that you find support and encouragement here as the bc survivors here have helped me so much. Good luck Tracy!

    Hugs, Kristin

    Thanks
    Thanks so much for all the input. Here's my dilemma. I was 1st diagnosed in P'Cola, FL - about an hour from where I live. I had a surgical biopsy for widespread micro-calcifications. One wk later I was diagnosed with DCIS. Two days after that I was in back in surgery having a lumpectomy and lymph node removal. The doctor ordered a breast MRI to make sure nothing else showed up. In the meantime, I saw an oncologist and a radiation oncologist. The problem I had was that they told me two totally different things. One said everything looked good - all I needed was radiation followed by 5 yrs of Tamoxifen. The other said she didn't like the looks of things and I was a candidate for a mastectomy. WHERE DID THAT COME FROM? In the meantime I did have my breast MRI which they said looked fine and all I needed was radiation. Well, something just did not rest easy in my spirit. I had connections in Birmingham (4 hrs away) and they wanted to look at all my records. They immediately told me to come there because they saw supicious areas on my MRI (same one that I was told everything looked good). I went and to make a long story short, ended up having a bilateral mast with cancer in both breasts. UNBELIEVABLE! But my doctors in B'mingham say I don't even need oncologists any more - no Tamoxifen - no nothing. Just follow up yearly MRI's to make sure there is no change. That's wonderful - I think. So why am I worried?
    Tracy
  • jk1952
    jk1952 Member Posts: 613
    #7
    mrsziggy said:

    Thanks
    Thanks so much for all the input. Here's my dilemma. I was 1st diagnosed in P'Cola, FL - about an hour from where I live. I had a surgical biopsy for widespread micro-calcifications. One wk later I was diagnosed with DCIS. Two days after that I was in back in surgery having a lumpectomy and lymph node removal. The doctor ordered a breast MRI to make sure nothing else showed up. In the meantime, I saw an oncologist and a radiation oncologist. The problem I had was that they told me two totally different things. One said everything looked good - all I needed was radiation followed by 5 yrs of Tamoxifen. The other said she didn't like the looks of things and I was a candidate for a mastectomy. WHERE DID THAT COME FROM? In the meantime I did have my breast MRI which they said looked fine and all I needed was radiation. Well, something just did not rest easy in my spirit. I had connections in Birmingham (4 hrs away) and they wanted to look at all my records. They immediately told me to come there because they saw supicious areas on my MRI (same one that I was told everything looked good). I went and to make a long story short, ended up having a bilateral mast with cancer in both breasts. UNBELIEVABLE! But my doctors in B'mingham say I don't even need oncologists any more - no Tamoxifen - no nothing. Just follow up yearly MRI's to make sure there is no change. That's wonderful - I think. So why am I worried?
    Tracy

    You're rightfully worried,

    You're rightfully worried, because everywhere you turn, you get a different answer. I would wonder who to trust. I continue to go to an Oncologist because I consider her to be my primary cancer doctor: the one that I talk to for my overall care for cancer. And, I never did chemo and only took Tamoxifen for six months.

    I'm assuming that you had DCIS in both breasts. With DCIS, it can be fairly widespread in a breast, and the surgeon may not be able to get 'clear margins' with a lumpectomy. In 2000, my surgeon thought that she was treating me for DCIS from the core biopsy, but it ended up to also be invasive cancer which wasn't discovered until after the lumpectomy. Even before the lumpectomy, she told me that there was a possibility that I would need a mastectomy, to get all of the DCIS. I've gone to my surgeon for several years, and I trust what she says. But, she couldn't tell for sure from the core biopsy the totality of the problem. The more complete information the doctor has, the better their diagnosis. I'm very pleased that the doctor in Birmingham wanted to see all of your records, because it allowed him to put all the pieces together and not be dealing with incomplete information.

    Joyce
  • Noel
    Noel Member Posts: 3,095 Member
    #8
    Hi Tracy! Just want to
    Hi Tracy! Just want to welcome you here! I think I would push your doctor's for some answers as to why a year. Good luck!
  • CR1954
    CR1954 Member Posts: 1,390 Member
    #9
    Tracy.....


    I don't know, "see ya in a year" may be the norm, but I would also feel insecure about my docs cutting me loose for that long.

    And no, it's my experience that it is NOT crazy to feel alone, even when surrounded by family and friends. I feel the same way at times.

    Hugs,

    CR
  • aurora2009
    aurora2009 Member Posts: 544 Member
    #10
    Hi Tracy and Welcome to this site
    Sorry I'm late!!!!! I am new to this journy, so I don't have answers regaurding your treatment plan or your doctors, But I will say that you need to talk to them and let them know your fears and concerns, I think I would feel the same way if I was told "see you in a year" without some kind of explaination.
    As for feeling alone, all I can say is I think this is something we all share in common, this is a scary time for you, and right now you are scared that you are nolt doing everything right to get through this successfully. It's hard for other people to understand unless they've walked or are walking in your shoes.
    I just want to tell you to breathe and if you feel you need another opinion then get one.
    Good Luck in your journey and please post often, we're here for you when you sad, happy, scared, lonely, mad or just need to talk.
    Take Care
    Aurora
  • MAJW
    MAJW Member Posts: 2,510 Member
    #11
    aurora2009 said:

    Hi Tracy and Welcome to this site
    Sorry I'm late!!!!! I am new to this journy, so I don't have answers regaurding your treatment plan or your doctors, But I will say that you need to talk to them and let them know your fears and concerns, I think I would feel the same way if I was told "see you in a year" without some kind of explaination.
    As for feeling alone, all I can say is I think this is something we all share in common, this is a scary time for you, and right now you are scared that you are nolt doing everything right to get through this successfully. It's hard for other people to understand unless they've walked or are walking in your shoes.
    I just want to tell you to breathe and if you feel you need another opinion then get one.
    Good Luck in your journey and please post often, we're here for you when you sad, happy, scared, lonely, mad or just need to talk.
    Take Care
    Aurora

    Second opinion, perhaps.....
    I understand how you feel...... IT"S ALL SO SCARY!!!!!!! If it were me, I'd seek another medical oncologist and radiation oncologist's opinion........."see you in a year" doesn't sound quite right..especially after dbl mastectomy and reconstruction......do you go back to your surgeon for check ups? I had lumpectomy, clean margins, no lymph node involvement and I have ductual carcinoma.......I am getting ready, on Monday to have my second chemo infusion, finish the 4th on Aug 17, then a three week rest period and I start 6-7 weeks of radiation....My oncologist believes in doing everything possible to prevent it from coming back not only in my breast but anywhere in the body........so I am doing the FULL treatment. This was the conclusion that the "Breast Board" came to when my particular case was discussed with them........I feel confident that I am doing the right thing.......

    I wish you the best, and this is a fantastic site.......I am so thankful I found this WONDERFUL GROUP OF WOMEN!!!!!!!!!!!! They have answered so many questions FIRST HAND, since I first came here.........We should all wright a "how to book".........Breast Cancer for Dummies........which I know I was before all this!

    N
  • Alexis F
    Alexis F Member Posts: 3,598
    #12
    CR1954 said:

    Tracy.....


    I don't know, "see ya in a year" may be the norm, but I would also feel insecure about my docs cutting me loose for that long.

    And no, it's my experience that it is NOT crazy to feel alone, even when surrounded by family and friends. I feel the same way at times.

    Hugs,

    CR

    Hi Tracy. A year seems like
    Hi Tracy. A year seems like a long time to wait. That seems like too long and I have never heard of anyone else waiting that long. I think I would change doctors or at the least, insist on seeing them a lot sooner.

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