Confused and scared

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danlias
danlias Member Posts: 28
edited June 2014 in Stage III Breast Cancer

Last September my mom was diagnosed with (stage II?) breast cancer.  She tried chemo first and after three treatments, she had to stop.  The side effects were too hard on her.  We knew there was node involvement but not sure of the number.  Last week she had her mastectomy and lymph nodes removed and was told the chemo she had shrank her tumor in half but she had 17 out of 18 nodes positive.  I tried calling the doctors office but haven't received a return call.  Does this amount make her stage III?  When she had her scans last fall everything else came back negative.  The doctor said after he takes the drains out, he wants her to meet with the oncologist for radiation treatment.  Can anyone offer any guidance or opinions?  I've been reading so much and I dont know what to think.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited February 2013

    Danlias....

    I had 17 nodes positive too.  And yes...this will put her at stage III.  Alot will depend on her ER and PR status.......if she is positive in both she may very well do just fine with Femara over the chemo anyway.  Radiation will be next....I didn't find it so much hard as tiring.

    She is lucky to have you by her side....

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    Thanks...

    I think she is positive in both.  We go back next week to get the drains out and then meet with the oncologist again.  I am still struggling to understand all this and it helps so much to hear from women who have been through this and are thriving!  Smile

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited February 2013

    I made it through all 8 rounds of chemo, and I still had 8 of 16 nodes positive after my post-chemo mastectomy.   Chemo often doesn't work that well on slow-growing ER+ tumors.   The doctors still have more to offer: in addition to radiatioin, if your mother's tumor is ER+, they will probably also put her on either an AI or tamoxifen.

    Take it one step at a time, one day at a time.   Since she is stage III they will be as aggressive as they can in dealing with it.   We have all been there so we know how terrifying it is at this stage when you're just learning what you're dealing with.   Things do get easier.   The internet is loaded with information (some good, a lot worthless), and some of the best of it is at this website, so glad you found it.   It will help your mom to have someone she can talk to that understands about what's going on.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2013

    I am so sorry you all are going through this journey.  As others have said, try to take it one day at a time, and there ARE other tx's avaiable to help with the node involvement.  Don't give up hope.  It's OK to be scared.  It IS scary.  But she (and you) can do this, one day at a time.

    We'll be here to help with whatever questions you have.

    Take care,

    Sharon

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    Even though she was first diagnosed back in September, we weren't sure how many lymph nodes were involved.  It feels like it's hitting me all over again.  The internet is both a wonderful and scary place to look up information.  I'm trying my best to find as much positive information as I can.

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  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Danlias, sorry you are going through all this. My path report showing 7 nodes in spite of pre-operative chemo also hit me in the head like a baseball bat. Then you take a deep breath and move on. This beast is unpredictable, so my take is that it doesn't do any good to get too caught up in the details. You just have to take that bat and smack it back until it leaves you alone.

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  • lkc
    lkc Member Posts: 1,203
    edited February 2013

    Hi Honey, DO NOT google. There is so much outdated information on BC , staging and treatment options. It will scare the heck out of  you.

    Come here often for support support and really good info. We've all  been trough it nd can help.

    I was dxed Satge IIIC over seven years ago and am fine today.

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    I'm afraid I have been overdosing on internet info and it's all over the place.  I guess I'm looking for an answer and a way to fix things.

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    Well, I have officially made myself sick by looking up info on the internet and I knew I shouldn't have. It is a wealth of information, both good and bad. I'm trying to just think of it as cancer and not focus so much on the numbers but the details are what's scaring me. I go from "she is going to fight this and win" to "Oh God, I need to sell my house, quit my job and move back in with my parents to help them." I'm all over the place and questioning everything. How does she go from getting normal mammograms every year to stage 3 breast cancer? Why wasn't this caught sooner if they tell us it probably started over 5 years ago? Sorry for venting a little...just on cancer info overload!

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  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Danlias, there will be a million questions. Deep breaths. They will get answered along the way.

    My cancer was also advanced. It is a kind that often does not show well (or at all) on regular screening. 

    As for the stats, try to forget them. If the survival for a particular stage/type/grade is 83%, what does that really mean to any individual? Nobody survives 83%. For any individual it is 0 or 100, yes or no, and apart from that it will be "no" for all of us one day. The main thing is to focus on living the best life possible right now.

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited February 2013

    Mammograms have been sold as the way to keep from dying of breast cancer, but the truth is that mammograms often do not 'see' cancers until they are quite advanced.   I was being watched what I thought was very carefully after a prior breast cancer, only to find out just 8 months after my last 'clean' mammogram that I had a tumor that spawned a mass in the axillary area that created a mat all in and around the lymph nodes.

    I consider a mammogram more of a tool like a sieve that's going to catch a lot of stuff, but lets some things through for a long time.   Some cancers NEVER show up on a mammogram.  A lot of people don't really understand that about mammograms, and think it's a guarantee that they're cancer-free.   Its widespread use is due to the fact that it is relatively low cost and easy to make available to the general public as a screening tool, not because it is the BEST way to find a breast cancer.

     

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    Thanks everyone for your encouragement.  All this hit me hard and I thought I was doing better.  My mom is so scared and last week when she didn't think she was going to make it through surgery, everything hit me again.  She's a worrier, always has been.  Thanks for giving me a place to talk about this.

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  • lostinmo
    lostinmo Member Posts: 922
    edited February 2013

    danlias- sending ((hugs)) to you and your Mom. Are you going with your Mom to any of her appointments? If she is comfortable with that maybe you could go and question the Dr to help both of you understand everything. Stay positive (hard I know) I was diagnosed stage III last March and after finishing my treatment in Oct. have returned to my precancer life. Always being aware but trying not to dwell on "what if's". You and your Mom will get there too.

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  • PaulAndSandy
    PaulAndSandy Member Posts: 123
    edited February 2013

    Danlias,

    Don't overthink the normal mammograms too much. My mother was diagnosed with Stage IIIA breast cancer in 2001 after noticing a very slight prickling sensation in her left breast. There was no lump, all of her mammograms came back normal every year, and even when they did the mammogram when she was diagnosed, it came back negative and the only reason they investigated further was because of the prickling sensation. By the time they finally saw it through more detailed scans, it was Stage IIIA with multiple node involvement.

    Sometimes no matter how proactive you are with self examinations and mammograms, these things can sneak up on you. With the constantly evolving treatments and drugs, there is more and more hope for people battling this disease. My mom went 8 years after her Stage 3A diagnosis before the cancer came back to the other breast and many other women have had even better outcomes with no recurrence or evidence of disease. I wish your mom the best... stay strong!

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  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2013

    Danlias....I had normal mammos for years and the first year that I get a call back, I end up being Dx stage 3A....and now 7 years later I'm still here. Karen

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  • danlias
    danlias Member Posts: 28
    edited February 2013

    Thanks ladies...I know I'm preaching to the choir here but you would think there would be a better test to catch this sooner! 

    After looking at all the negative info online (and there's a lot of it!), I'm trying to read as much positive information as I can.  It's hard not being able to see the light right now and I'm so glad to hear from ladies who have had treatment for stage III and are doing well for years and years...very encouraging!!!

    And really, why are there stages?  Either you have cancer or you don't.  It's like being a little pregnant! Tongue Out

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  • PaulAndSandy
    PaulAndSandy Member Posts: 123
    edited February 2013

    Danlias,

    The reason there are stages is to determine the type of caancer, how advanced it is, how far it has spread either locally, in surrounding tissues, or to distant organs or bone. Someone with a Stage I breast cancer has a very different cancer than someone with a Stage II cancer for example. Stage I means the cancer is smaller, less invasive, hasn't spread to lymph nodes (which increases the risk of it spreading to the other breast, surrounding tissue, or distant organs/bone) and is less likely to recur at a later time.

    Stage III breast cancers are more advanced, they've usually spread to the lymph nodes and need to be irradicated quicker and more agressively to reduce the chance of them coming back.

    Stage IV breast cancers have "metastasized" meaning they have spread to other parts of the body. This type of cancer is not curable but is treatable.

    Anyway, I hope this helps clear up some of the terminology in regards to the different stages and what they mean. This is obviously a very basic description--going into more detail really brings out just how confusing all of the stages are and what they mean.

    - Paul

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  • beth1965
    beth1965 Member Posts: 455
    edited February 2013

    Danlias-Take a couple deep breathes

    As you can see many of us have lots of positive lymph nodes and are fine. I had 17 nodes like your mom-it is over a year since my diagnosis and i am doing pretty good.

    There are many treatment options to try.

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  • danlias
    danlias Member Posts: 28
    edited March 2013

    Thanks for all of the encouragement.  I've been reading a lot of positive stories on the message boards and feel better about things.  Your mind goes to bad places when you just focus on the numbers.  We met with the doctor yesterday and he was very upbeat about everything. Laughing

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  • danlias
    danlias Member Posts: 28
    edited March 2013

    I am back to the holding my breath stage...After they took the drains out, my mom developed an infection. We went back to the surgeon, he put her on an antibiotic and opened her incision to clean and pack it. I was ok with that and when she met with him today, he said everything is looking good.

    However, she had her pet scan last saturday. The oncologist hadn't called her with the results yet so she asked the surgeon today if he got a copy. He reviewed them with her and something showed up on her one vertebrae. He said it looks like arthritis to him but the oncologist will have to review it. We don't go see him until April 4th.

    Instead of getting easier, it feels like things keep getting harder and harder. I'm beyond the point of scared and worried. I feel like if I breathe wrong something else will come up. I don't know how much more I can take.

    Thanks for letting me get this out.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    What kind of cancer does your Mom have? I passed a mammogram a few weeks before my mastectomy for stage 3 cancer.......

    I would advise that you look up info on stages and grades of cancers on this site only........and perhaps take a look at canceractive.com too.....

    Many people have things show up on scans and arthritis and arthrosis are by far the most common .....

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  • danlias
    danlias Member Posts: 28
    edited March 2013

    My mom has stage IIIc.  I am going to call the oncologist tomorrow for her results.  I can't wait two more weeks.  I called the surgerical nurse this afternoon and she said most people have to have another scan because the pet scans aren't always that specific.  My mom can't have an MRI so I think it might be an x-ray that's next.

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