Out of the blue

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BelaT
BelaT Member Posts: 217

I was diagnosed just 3 weeks ago. I was having mammogram every year and never showed anything. all of sudden found lump,btw was always checked my self too. I have no idea how this came up. I am being told it is slow growing and had it for few years, how the hell did I miss it. I am recovering from lumpectomy and waiting for OncotypeDX and Braca tests. I am being told I have to wait if I want radiation. 

I am so scared. No one to talk to. By the tumor size is 1.5 cm

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  • DiDel
    DiDel Member Posts: 1,329
    edited December 2011

    BelaT sorry for your recent diagnosis. Like me around the holidays made it even more difficult. Waitiing for test results is always stressful. My breast surgeon gave me a rx for Ativan the second I walked in his door. I took just half a pill at night to help me sleep leading up to surgery. I was on such a rollercoaster deciding between lumpectomy and mx until I had no more choice due to multifocal nature of my BC. Stage 1 typically have low Oncotype RS if that gives you any relief.

    I found my tumor myself after many mammos and US missed it. Thats the problem with dense breast ...breast tissue is white...cancer is white not always easy to distinguish. I think the new mammos are better but we still have to be our best advocates for our health. Thank goodness yours was still found early. If you havent had a breast MRI I would ask for one. I thought I only had one tumor until my MRI...also gave me peace of mind that lefty was crystal clear.

    You've come to the right place.,,.BCO is aa great source of information and support.

    Good luck with your remaining tests and in whatever course of treatment you decide.

    Diane

  • BelaT
    BelaT Member Posts: 217
    edited December 2011

    Thanks so the reply. I will ask for MRI. I feel like I want mastaectomy. I don't want it to come back. I am such a basket case.I have very very small brests 34aa , how can I have this and how can they miss? 

    I have a daughter and I am heartbroken to give her this history. :(

    I am so glad I joined this too. I was completely lost. what is multifoacal?

    Bela 

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited December 2011

    OK, here's the skinny on low-grade, small lumps -- I was exactly the same size and grade as you have been diagnosed with. And 1.5 centimeters is considered a small lump. Honest.

    First, and most important, if you are post-menopausal, then your daughter is likely not at increased risk for BC. This was the most important thing for me, too -- my MIL died of BC (at 80, but still...), and this was an important topic for me. You can get genetic counseling, but unless you come from a family where women are diagnosed in their 30s and 40s, you are unlikely to have the genes that we know cause breast cancer.

    Second, neither the medical system nor your self-care failed you. Lumps on mammos are often undetectable when they are smaller, that's why there are so many of us here with lumps over 1 cm and under 2 cms. I do understand; when I found mine, I couldn't believe that I hadn't felt it before - it felt like a rock! Some women have "calcifications," which are white flecks that show up on a mammo very early, but it doesn't sound like this is what you have.

    Third, I understand the "Just Cut The Damned Thing OFF!" response to breast cancer. I bet most of us had it. But... AND THIS IS IMPORTANT ... having a mastectomy does not increase your chances of survival, unless you meet certain conditions, like having genetically related BC. There are tests for this, if you have a family history.

    Lumpectomies were made for women like us. You may have heard that 80% of women with breast cancer survive more than 5 years, well, with our diagnosis, it's more like 90%. And, if we do the follow-up care that is needed, our odds are even better. So, just for you, here's my reasons for having a lumpectomy --

    1. There is no difference in survival rates between women who have a mastectomy and women who have a lumpectomy and radiation. Yes, rads are a pest, but there are short-term protocols that are very appropriate for women with solitary lumps (ask about the Canadian protocol, or 3-D conformal external rads, or internal radiation during surgery).

    2. You can always go back and cut off more boob, but you can't glue them back on. Most women (here's that damned 80% again) get good margins (that's cancer-free space around the lump), so they are done. You are more likely to see women on these boards who are the exceptions to the rule, who have problems, but most older women do fine with a lumpectomy.

    3. Mastectomies are major surgery, and they hurt - I was back at work 2 days after lumpectomy. There are fewer long-term complications after lumpectomy and rads than there are after mastectomy - note that there is no free rides  -- I got an infection from surgery, and it made me unhappy, but it was treatable.

    4. Yes, my boobs are old and they sag, but they have feeling. And my husband and I both like that. Even reconstructed boobs are numb and cold. And, no, the feeling doesn't come back.

    If you have more questions, keep asking.
    No one knows like us how terrifying this diagnosis is, but, honest, you are probably going to die of something else (that's what my oncologist told me, and, while the man had the personality of a fish, I believed him about this)
    Hugs

    Sue

  • BelaT
    BelaT Member Posts: 217
    edited December 2011

    Thanks for all this, I just found out oncotype dx it is 23. is that bad? I m not going for mastectomy with out reason , i had a nipple discharge. I m worried I am pre- menopausal well, i m 46. I am so upset , I know I need to be strong but I can't. I have no risk factor at all.

  • Megadotz
    Megadotz Member Posts: 302
    edited December 2011

    Bela, I'm sorry for your diagnosis, but I'm glad you found us.  This is a great place for support and information.

    Take a deep breath, yes you can breathe with all this going on. You didn't do anything wrong, it takes a while for the tumors to be dectable.  I was on a six month call back for density issues for  three years before they could detect my BC.  80% of us who get BC don't have any risk factors outside of  the two main ones : being  female and getting older -- neither of which we can change.

    It looks like you hav the final pathology from the lumpectomy.  A good source for finding out what means can be found on the main portion of site:

    http://www.breastcancer.org/symptoms/diagnosis/

    Since they are doing both a BRCA and Oncotype test, you'll need to wait a bit longer.

    The Oncotype test will check genetic markers to see how likely  the cancer is to recur and whether chemotherapy would provide a benefit. link below:

    http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp

    The BRCA test is a genetic test to see if you have a genetic mutation that would put you at greater risk of recurrance.  Link below:

    http://www.breastcancer.org/symptoms/testing/genetic/

    Based on what comes back from these tests you and your MO can decide what the best treatment plan is for you.  There are a number of tradeoffs with these decsions and  you're the only one that knows what the right one for is.

    Hugs, waiting is the pits.  Once you have a treatement plan it's easier because things start to be a bit more under control.

    All the best,

    Meg

    The wait for radiation is to let your body recover from the surgery before begining that treatment.   There is a trade off between radiation and mastectomy when there is no node involvement.  A mastectomy may mean  no radiation,MX  is major surgery as Sue has pointed out

  • BelaT
    BelaT Member Posts: 217
    edited December 2011

    Thanks for the reply. I will be back if I have more news. P

  • bojo
    bojo Member Posts: 74
    edited December 2011

    Hi

    BelaT,

    I am confused on your diagnosis's, was any of your cancer invasive?  you list DCIS.  Did you have DCIS with invasion?  I wasn't aware that they did the oncotype dx for DCIS?  Pure DCIS is grade 0 and from i have read no chemo is usually needed.  But i could be wrong.

    Jo

  • BelaT
    BelaT Member Posts: 217
    edited December 2011

    yes Invasive and 1.5 cm node -ve erpr +ve her2-ve

  • bojo
    bojo Member Posts: 74
    edited December 2011

    BelaT

    That makes more sense.  I am 46, this is my second time around, 1st dx in 2005 @ 40yrs with DCIS 37 rads, no tamoxifin.  fast forwarard 6 yeas i am at it again.  this time other breast DCIS but this time they found a small 3 mm invasive.  had 2x lumpectomies to get clear margins.  next appt jan 3rd with MO, i am hoping they will order the oncotype dx test to determine if chemo is needed.  i already have in my mind any number over 18 i am doing the chemo and rads.  i can't stop thinking about "getting rid of them", but am so afraid of making the decision for a bmx. 

    take care

    jo

  • mdg
    mdg Member Posts: 3,571
    edited December 2011

    The decision for MX vs lumpe tomy is a very personal choice. I had a 1.4 cm tumor and opted for BMX with reconstruction and chemo. I did not need rads. I did have a lumpectomy first and no doubt the healing was easier than BMX healing but I am glad I had a BMX. The survival rates between MX and lumpectomy are the same but recurrence rates are not. I was 45 last December when I was diagnosed. Each woman's situation is different and their treatment paths are different too. I had an oncotype of 17 but I had LVI which really scared me so I did do the chemo. My son was only 4 when I was diagnosed. I wanted to be as aggressive as I could. Please let us know how things go. I am a year ahead of you in all of this and just want to let you know you will get through this....one step at a time. Hugs.

  • BelaT
    BelaT Member Posts: 217
    edited December 2011

    what is LVI? I want BMX but I don't know if drs , ins, and hubby would agree. 

  • bojo
    bojo Member Posts: 74
    edited December 2011

    MDG.

    Looking at your diagnosis, the only diff is the I am grade 3.  Can I also ask what LVI is?  I am so scared about the recovery from the BMX and it's so final.  I can't seem to pull the trigger, but seem to think that's what I should be doing.  I have appoints next tues with MO and next thurs with RO.  the other thing that worries me is more radiation, although it is a different side.  How much is too much radiation?  Hopefully after talking to them i will have more answers.  I am driving my self crazy!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2011

    LVI is lymphovascular invasion - basically does your tumor have blood supply leading away from it.  It should be noted on your pathology reports - often it is written there as "present" or "not present".  It is an indicator of whether or not cells from the breast tumor have an escape route from the breast into the lymph or vascular (blood) system to other locations in your body.  It is one of the factors in making a decision about chemo, but some docs assign more weight to it than others.

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