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Positive nodes with long term survival

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  • shelly56
    shelly56 Member Posts: 142
    edited February 2012
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    Yorkiemom:  Could I ask what your age is?  MO said cancer can "bi-pass" nodes and be found traveling in your blood, that is why you will see Stage 4 women with -0- positive nodes, yet the cancer is in the cells in the blood.  Does that help?  In addition to the post by LindaLou, no matter how low your onco score was (mine 11), if "any" number of nodes are positive, even one, she would recommend chemo.  And if I would have zero positive nodes, but still the huge tumor, she would insist on chemo.  As it was I had all grades from 1-3 !!  That is not unusual for a larger tumor.  --

  • pupmom
    pupmom Member Posts: 1,032
    edited February 2012
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    Shelly, I am 63. I don't agree with your onc. For small, very non-aggressive tumors, which can be determined by both grade and Oncotype Score, chemo is not indicated unless many nodes are involved. Also, according to her logic, since the cancer can bypass the nodes, everybody should get chemo, regardless. My onc has been a major breast cancer researcher for 30 years. I am confident in her decision. Plus, two other oncs concurred.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited March 2012
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    Yorkie-I am in Akron about oh maybe 45 min from the Cleveland area. Very sad...

    Claire-  He is a looker! He had not been shown before so we will be working this summer at local shows to get ready for the point shows next year. I have never seen a horse with blue eyes before, he is so handsome and such a good boy! Vet was out last night to check him out and said he was very sound and healthy. I am hoping to have him home next Saturday after his coggins test is back. I am excited to have him and it helps me keep my mind occupied.

  • shelly56
    shelly56 Member Posts: 142
    edited March 2012
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    Yorkiemom:  I don't understand.  Your onc says your cancer probably got to the nodes through a vessel.  You said your path report said no "vascular" involvement, but according to medical definition, "vascular" means pertaining to blood vessels. I would talk to your onc and discuss further.  My onc would definitely recommend chemo if large tumors, even with no pos nodes. But I don't think she 'over-treated' me.  They have to consider age, etc.  Isn't it confusing when we read articles that seem to contradict each other.  Did you do a lumpectomy or mastectomy?   

  • Paljo
    Paljo Member Posts: 2
    edited March 2012
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    woohoo! Just wanted to let you gals know that I am 2 weeks post op from Diep reconstruction and feeling great. Stage 3c and 14 of 19 positive nodes. this time last year i thought i had a death sentence from looking at all the stats. One year later my attitude has certainly changed. Some people thought i was crazy to subject my body to more surgery but I plan on being here for a long time, yet so I may as well have a set of boobs.  Wishing you all well.....and keep posting the psotive stories.....i love them.

  • seacretgardn
    seacretgardn Member Posts: 18
    edited March 2012
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    Palio. Congratulations! So good to hear you feeling and doing so well.



    Thank you for sharing your great news.

  • many
    many Member Posts: 57
    edited March 2012
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    BUMP FOR NEWCOMERS

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited March 2012
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    Congrats!! That is why I choose not to look at stats, they are pretty much outdated.  I am 2 weeks from getting my recon surgery and nervous about what to expect. I bought a nice button up the front nightshirt that I am sure I will be living in for at least a week.  My attitude has also changed after a year, am little more hopeful and body is getting back to normal after chemo and rads.  I am glad you are feeling good!!

  • beth1965
    beth1965 Member Posts: 203
    edited March 2012
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    Anyone else have a large number of cancerous nodes and a large tumor?

     My tumor was over 9cm and i have 17/25 nodes. Feelin pretty scared right now hoping to find some other people that have had similar DX. When i ask my doctor about my DX she says "we can only hope from here on in" Those words are not helping me feel positive thats for sure.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited March 2012
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    Cheryl.....how is the new guy in your life???  Hoping all is well.

    I have seen a horse with blue eyes.  He was a half-Arabian who was white-grey and called Opec.

    Anyway, I am sure that for showing you need someone who is a bit vain.  Your guy will play to the judges.

    Of course, you will need to look the part as well. 

    I remember showing a really pretty Jersey heifer.  She looked just wonderful for the judge, but as soon as he turned his head, she hooked me good right in the ribs with her horns.  She did know she was pretty though.

    I thought it was fascinating growing up on a dairy farm.  Some of our cows were very careful to keep themselves looking just great.  Others just didn't care.  Not that different from the rest of us.

    Glad you got a handsome guy. - Claire

  • LindaLou53
    LindaLou53 Member Posts: 60
    edited March 2012
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    beth1965 wrote:

    Anyone else have a large number of cancerous nodes and a large tumor?

     My tumor was over 9cm and i have 17/25 nodes. Feelin pretty scared right now hoping to find some other people that have had similar DX. When i ask my doctor about my DX she says "we can only hope from here on in" Those words are not helping me feel positive thats for sure.

    Beth, I had a 5.1cm tumor and 23/23 positive nodes 6 years and 4 months ago.  Still NED.  There are several others here with similar dx who are years out and doing well.  You are still early in your treatment and its hard to see very far into the future at that point, but hang in there! Take things one day at a time, concentrate on keeping yourself rested and healthy as you go through treatments and before you know it you will be done! The worry never leaves completely, but you will find it easier to believe you can enjoy life again the further you get down the road.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited March 2012
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    Claire, I am hoping he is coming home this weekend. Can't wait til the pasture drys up so I can ride!!

    Beth 1965: I too had 17 pos nodes, though my onc is more positive about the outcome than yours sounds to be. LindaLou is right, you are still early in your treatment. I have come across many stories of people who have more nodes than us. LindaLou for one, another is a gal that my BS told me about who had 28 pos nodes 10 years ago and is NED today. Another gal my friend met had 27 pos nodes 10 years ago-NED. Yet another gal who is a patient of my oncologist had 15 nodes, 9 years out, NED, my bf works for a lady who's daughter is coming up on 6 years with 19 pos nodes, NED!!!!  Don't let anyone, including your doctors, give you anything but HOPE!!

    I was in a dark place for awhile and I still go there but I feel like I am going to beat this. I just started working on another degree and bought a young horse, I am in it for the long haul baby!!

    Stay positive and focus on healing yourself....come here often as these ladies have helped me so much... ({HUGS})

  • beth1965
    beth1965 Member Posts: 203
    edited March 2012
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    Thanks so much LindaLou53 and ckgrayoh i really needed to hear that. And yes LindaLou you are right about me still being at the beginning and having a hard time seeing the future that is a very good point. Ckgrayoh i will be starting with a new onc in my area soon maybe that is a good thing maybe i will find one that gives me a bit more hope. I agree that i find the short time i have been on this site has helped me too. Thanks again ladies for the encouraging words-Beth

  • Momof2inME
    Momof2inME Member Posts: 249
    edited March 2012
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    There was a posting yesterday from a member of my local Breast Friend's facebook page. She was letting us know she was celebrating year 14 NED as a Stage IIIc. I always like these postings so thought would share another with my stage III sisters.

  • beth1965
    beth1965 Member Posts: 203
    edited March 2012
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    Thanks for sharing Momof2inME that is wonderful to hear.  What an adorable picture of your children they look so cute!

  • TectonicShift
    TectonicShift Member Posts: 102
    edited November 2018
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    Momof2inME - thank you so much for posting that. I needed that today!

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited March 2012
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    Thanks Mom that is so great to hear!!!

  • NeedtobeSTRONG
    NeedtobeSTRONG Member Posts: 17
    edited March 2012
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    Thanks mom! That is always great to hear.

  • many
    many Member Posts: 57
    edited March 2012
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    Bump

  • kiwimum
    kiwimum Member Posts: 485
    edited March 2012
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    Love these stories. Keep them coming ladies.



    Congrats Lindalou and thanks ckgray.



    Beth, it is early days for you, and those days are so frightening! I know I felt like you.



    It's been one year since my diagnosis, with multi focal tumours and 12 nodes. I've finished chemo and rads and have optimism back in my life. I still have moments of fear and panic, but it gets better all the time, and hearing these stories really helps.

  • financegirl
    financegirl Member Posts: 9
    edited March 2012
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    Beth:  I did not have a large tumor, worse yet, a tiny very aggressive one.  I also had close to 20 positive nodes.  I just finished treatment in Feb (surgery, 5 months chemo, 7 weeks radiation).  I'd just had a mammo 9 months prior and it did not show up on that - my cancer was found as a fluke and is a long story I won't go into. 

    On another thread, they were discussing how someone's doctor would not give her the staging info on her cancer.  People were saying we need that to be proactive in our health care and treatment.  Well, my onc was absolutely fantastic (since retired) but his take on it was, "I don't usually give that info anymore either" unless someone pushes for it.  He gave me mine b/c I'd asked again but his reasoning as explained to me was that he has stage IV women living years out and he had a stage II woman that came, got whatever her treatment was and then blew off all her screenings thereafter and she died b/c by the time she came back years later it had progressed too far so now not able to attack it.  

    That, to me sounded nuts, but I can see it happening b/c I had a friend that used to leave chemo and light up a cigarette on the way to the parking lot.  Another friend had emphysema, on oxygen and unhooked it to go outside and smoke so I know people are sometimes their own worst enemy.  My onc's philosophy was more like - not everyone's cancer may respond to one thing so we try another.  I loved this man's attitude because of it. 

  • beth1965
    beth1965 Member Posts: 203
    edited March 2012
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    Reading all you have all written really has gave me some relief much more than my doctor so far. It is just good to talk to people that are doing good with similar DX outcomes. When the doctors said tumor was over 9cm i thought holy crap how did it get so big. But when the doctor said i had 17 cancerous nodes all i could think is who the heck has that many nodes full of cancer most people dont get that many and it seems scary. And how long have i had cancer and then my next thought was am i dying. But getting on here and reading everyones stories have given me soooo much hope for my future. I realize i am not alone and all of you are going through this cancer too. And there are so many options to try.

    Kiwi-it seems as though you and everyone all remember feeling this way in the beginning i guess its true that once you have a plan so to speak and start treatments that you gain some control back over your life but you never forget the fearfull emotions in the beginning

    financegirl-you so many good points i have to agree with and yes your onc was very wise to think and word things as he did. I suppose it is true about people being their worst enemy sometimes. They say even depression can effect your strength and health so i figure its important to try and keep a somewhat good outlook if i can.

    You all sound like caring kind people i hope with all my heart you will all be okay and stay okay

  • edwards750
    edwards750 Member Posts: 1,568
    edited March 2012
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    Agree with Yorkiemom..I had a micromet in my SN show up on the Path report. My BS said that would get me chemo but my onc disagreed and she makes the call. She ordered the Oncotype test for me and my score came back 11 too. The test revealed the tumors were not as large and not aggressive and when it is a micromet the Oncotype test treats it like zero node involvement. Because of my low score my oncologist ordered rads for treatment. Had it not been for the oncotype test I was looking at chemo.

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2012
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    Shelley, it wasn't my onc but the BS who said that.  I will probably never know for sure how the nodes became involved. By vascular invasion I meant what they look at when biopsing the nodes. There was no lymphovascular involvement around the nodes. I think that is the determining factor regarding whether they decide one has vascular invasion. I'm not confused about my oncs decision. I think she made the right call. I had a small, low grade tumor with 2 micromet nodes, no vascular invasion and a low Oncotype score. I think it is great that we both have faith in our doctors and the treatments we have received! 

  • lornara
    lornara Member Posts: 1
    edited March 2012
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    I was diagnosed with a multi focal tumor (largest 7cm) with 11/30 positive nodes..... in 1997 at age 37........ I had high dose chemo with stem cell transplant and am still here......

  • missy_111
    missy_111 Member Posts: 97
    edited March 2012
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    lornara - Thank you for coming back to post.  Stories like yours, give us all hope!

  • Ihopeg
    Ihopeg Member Posts: 92
    edited March 2012
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    Hi Beth 1965

    I just saw your post and I have a similar diagnosis to you. Being 5 years out, I remember all of the tests and waiting for a treatment plan were the worst times. You will get through it! As far as the number of nodes involved, my onc said that I probably had the tumors for 8 to 10 years before I was diagnosed.... after having mamograms every year for six years. ILC is very hard to find, and that is why we get diagnosed at a later stage. Keep your chin up!! If I did it, so can you!!!! 

  • Ramin
    Ramin Member Posts: 5
    edited March 2012
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    Hello everyone with a lots of love and respect i am 22 male. my mother is a cancer survivor she survived in surgery and is grade 3 or stage 3 and also her 2neu positive 3+ in fish test. she is on her 2nd chemo and her oncologist recommended her for 8 doze. her tumor was 5.3cm in right breast of her and it was totally painless breast cancer. anyone with the same case and know more please tell me i am very broken and i have only my mother with me in my life and need help from all of you to give me more information. i wish you all the best wishes and may god give you long journey of life.

  • Momine
    Momine Member Posts: 2,845
    edited March 2012
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    Ahlan Ramin, how can we help you? Unfortunately cancer can be sneaky that way, not causing any pain or obvious symptoms. It sounds as if your mother is in good hands. Do you know if your mother's cancer is ER+ ? Do you know what kind of chemo they are giving her, I mean the name of the drug.

  • Ramin
    Ramin Member Posts: 5
    edited March 2012
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    i am not sure but i think it was ER+ PR- Her 2 neu 3+ which is really bad i know and she is taking ferosun from argentina 130 mg every 3 weeks to complete 8 of these injections. they told me to give her herceptin for a year with radiation and also said that is up to you if you wanna go with herceptin because in 78 % women cancer don't grow back even if fish test comes positive but in 22 % women it comes back that is the risk. Momine tell me please how do you see this case and have you ever heard and read any like this.