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AgentMo
AgentMo Member Posts: 72
edited June 2014 in Stage III Breast Cancer

Hello! I have found this board some weeks ago and after having been a silent user I have decided to join the board because it is such a great place to be. So, let me introduce myself. I am 33 and I have been diagnosed with breast cancer in May 2010. Initially, everybody thought that the cancer has been caught relatively early, but unfortunately after lumpectomy it has turned out that four of my lymphnodes were already cancer positive. Ever since I am on a rollercoaster of emotions. Especially the four instead of three positive lymphnodes are ticking me off. I am so scared that the four positive lymphnodes mean that I will not be healed. On the other hand, I know there is a chance (albeit nobody told me how big it is) that my treatment will work. But it is so difficult to wait and find out. 

Currently, I am receiving TAC-chemo every 21 days (my third round will be the coming Monday). After that, I will receive radiation, Tamoxifen, something like Zoladex, and Zoledron acid.

I would be very happy to hear from others with a similar diagnosis and whether there is anything else I should do to increase my chances of survival. I know that I should exercise and I do as much as I can during chemo. 

Finally, let me tell all of you that as far as I have followed this board I think it is a great place to be. It has helped me to see that I am not the only one confronted with such an unfavorable diagnosis. I don't really know how all of you can be so positive and hopeful, but I sincerely hope that your way of thinking will somehow take me over as well. 

Comments

  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    Wecome AgentMo-Sorry that you had to join our club. You will find so many wonderful ladies here. This site has been a god send to me. You will find many ladies (like you)here who are doing well many years after treatment.

  • Bugs
    Bugs Member Posts: 1,719
    edited July 2010

    Welcome AgentMo!  I'm glad you came out of hiding.  If you haven't already, go read the Stage 3 and 5+ years out.  VERY uplifting for those bad days.

  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2010

    Welcome AgentMo! I know this isn't the place you want to be, but you will find a lot of support and help from the women on these boards. 

  • Mamita49
    Mamita49 Member Posts: 538
    edited July 2010

    Hallo AgentMo,

    Wieso bekommst Du Zoladex ?   Ich nehme Tamox, und werde bald Zometa noch dazu bekommen um die Knochen zu stärken.

    Falls du Fragen hast, kannstD gerne eine PM mir schicken. 

  • helena67
    helena67 Member Posts: 357
    edited July 2010

    You know, there is no difference in prognosis really between 3 and 4 positive lymph nodes, it's just a 'cut-off' point for statistical purposes...It sounds like you are getting a good treatment. Good idea to check out the '5 years out' thread. After 2 years of struggling with this, I have finally arrived at the conclusion that my prognosis isn't too bad...Treatment for breast cancer has really advanced and chances are good that you will be fine. Talk to your Oncologist and see if he/she can reassure you.

    Lastly, you are very young to develop breast cancer. You can take a gene test to see if you carry a gene mutation called BRCA1 or BRCA2 - another thing to discuss with your Doc.

    Take care, 

    -H.

  • AgentMo
    AgentMo Member Posts: 72
    edited July 2010

    Thanks for all your answers, I am happy I came here. Today, I am having a downer. My mother-in-law spoke to a friend of hers, who happens to be an oncologist. After seeing my diagnosis, she put my chances of survival to a mere 50 %. That seems to be really small in my eyes and I cannot see me belonging to the happy group who makes it. How do you deal with information like this?

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited July 2010

    Agentmo- Im so sorry you had to be part of this group but like we say welcome~ you have come to a great place for support, i know you are scared and worried, most of the statistics are not correct and not updated also there are so much better meds out there now, the ladies here have who have been high risk have been here for a long time and doing good, im keeping you in my thoughts and prayers ((((((((hugs)))))))

    Debbie

  • caaclark
    caaclark Member Posts: 936
    edited July 2010

    Hi Agentmo-

    I had 6 positive lymph nodes and that was over 4 1/2 years ago.  I think the 50% stat is not correct.  Check out the link below.  It will help you feel better regarding percentages.  I remember freaking out about the lymph node thing-most of us here probably freaked about that-but my doctors reminded me that lymph nodes are just one of the many things in the equation.  People who have no nodes with cancer sometimes do worse than we do. 

    http://www.pslgroup.com/dg/25a522.htm

  • 116
    116 Member Posts: 108
    edited December 2012

    Agentmo, It looks like we had simular diagnosis and I have also heard the 50% prognosis, however like many have said, the statistics are outdated since we are getting advanced treatments. I am three years out now and I am just now starting to get beyond thinking about BC everyday. It takes awhile. I know now that the 50% prognosis is not accurate, but I did finally just tell myself that even if it is correct, what the heck, Everyone has a 50/50 chance in life. Either you are alive or not. We could all walk out the door each day and get hit on the head by some random act of man or nature and worrying about it doesn't change a thing. Although I was able to keep working during treatments, so I didn't have work to "go back to" I did decide to go back to school nights. At first I used to worry that I was wasting valuable time that I had left by studying instead of spending time with my daughters, horse, friends etc. Now I am just a few quarters from graduating and I am so happy that I decided to just live my life as though I have all the time in the world. Now instead of wondering if I was wasting valuable time with my family, I think, "Wow! look at all the valuable time I did not waste". All of this said of course is not going to help you much since you are right in the middle of treatments and your thought processes right now are what you have to go through, and process, in order to get to where I and other find ourselves after you arrive at the end of the road on your journey. It is truly frightening, so give yourself permission to be scared, because it is really scary and trying to deny that does not make it any easier. Just know that it will get better, it just takes time and travel....

  • 116
    116 Member Posts: 108
    edited December 2012

    Gosh! I got to thinking that it was not very nice of your mother in-law to tell you, that her oncologist friend told her, that you have only a 50% chance of survival. It would make me wonder a lot about her and if she is a positive individual to be around and have on your side? Maybe since I do not know the context of the discussion I am wrong, but that is not something I would run and tell someone, expecially someone I cared about. Yikes!

  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited July 2010

    Hi, Agentmo.  Sorry you have to join, but nice to meet you.  I didn't have as many nodes show positive as you, but I had a 6.5 cm mass and 1 of 3 nodes positive.  Am grade 2 and er/pr+ and her2-.  My Oncologist gave me a 79% chance of being alive and cancer free in 10 years.  So far I'm 2 years, 3months out of chemo and no evidence of disease. 

    Take care,

    deb

  • helena67
    helena67 Member Posts: 357
    edited July 2010

    It's just statistics but 50% is way off. I firmly believe in cases like yours (and mine for that matter), 10-year survival rate exceeds 70%. But you know, this is not something to ask a friend of a friend. Maybe that Oncologist has not seen a breast cancer patient in 20 years. Who knows. You should ask your own Doc. And they will say they don't know for sure but they will give you an estimate that is based on old stats (= better in reality).

    Take care,

    Helena.

  • Pure
    Pure Member Posts: 1,796
    edited July 2010

    Really strange... I don't think that is close at all. My friend who was pregnant when diagnosed had a 4cm tumour and 3 nodes. When she completed treatment they told her her chances of reoccurence was LESS then 10%.She feel that she is done with bc and she is doing great. Maybe that stat was BEFORE treatment. She goes to MD Anderson-top cancer hospital in US.

  • helena67
    helena67 Member Posts: 357
    edited July 2010

    Wow, Pure. That is a great stat. That makes even an 'oldbie' like me feel better......

  • kimber3006
    kimber3006 Member Posts: 586
    edited August 2010

    Welcome AgentMo.  I'm sorry you had to join us and have been getting negative input.  I'm with the others in believing that 50% is way off.  My onc gave me a 35% chance of being cured with just surgery, but 80% with treatment - treatment very similar to yours. It takes time to get to the positive way of thinking.  First I had to process it all, and in a way, mourn the loss of my "carefree" life pre-bc.  Something that helped me immensely during treatment was to keep a list of positives in my cancer notebook (kept all of my doctor's notes in a spiral notebook).  Whenever I read anything, or heard anything that made me feel a little better, I wrote it down there.  That way when I was having a rough day, I could just flip to those pages and remind myself of the positives.  I remember at the beginning of treatment, reading about people putting wigs and scarves in a box in the back corner of the closet, and wishing I could already be at that point in treatment.  Guess what I did yesterday?  :)  You'll get there, too.

  • NancyD
    NancyD Member Posts: 3,562
    edited August 2010

    AgentMo, your dx and tx sound very similar to mine. However, my oncologist chose to start with neoadjuvant chemo to see how my tumor reacted (it shrank more than 50%). Then I had surgery, more chemo, radiation, and now I'm heading into my second year of Arimidex.

    Both my oncologist and my breast surgeon have been very positive about my case. They talk about curing me, not just putting me in a five or ten year holding pattern. They've never given me a percentage, but also, I've never felt like a statistic so it wouldn't have mattered.

    I've actually started to live my life again without thinking about a recurrence or metastesis everyday. Those thoughts do creep in just before a doctor's appointment and the subsequent blood work, but fade quickly as I get back to my life.

    This board is a never-ending well of information and resources as you go through your treatment. The friends I have made here have crossed over into real life, too. I hope you have the same experience that I did...positive support and friendships.

  • AgentMo
    AgentMo Member Posts: 72
    edited August 2010

    Thanks for your replies, I am really touched. 75% -  80% sounds so much more ensuring than 50 %, I hope you are right. In Germany, it seems that officially oncologist are not giving out any percentages, I am consistently only told that my cancer can be healed, but that it is already advanced or that my risk of recurrence is high. I despair hearing these statements because they do not sound too reassuring, do they? I know I am young and I know that with four involved nodes I am no longer in the reassuring stage II group, but I have always hoped for a survival rate of more then 50 % and I would love to hear some more reassuring words from my doctors.

  • AsiaYM
    AsiaYM Member Posts: 2,216
    edited August 2010

    Hi, there,

    I had 6 rounds of TAC, my doc told me later on that TAC is a very effective chemo and by looking at your post, you will be very well taking care of, just go through the treatment, you will be fine.   

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited August 2010

    The words "locally advanced" sound very ominous.  One of my first post was asking if this was different than a normal stage III dx.  But you've been getting the facts from all the previous posts.  Times have changed and we have more preventative meds with Zometa and the AIs.  And, most of those studies were done on the entire population of women which included those that didn't stick to the program and gave up on taking their AIs or even finishing active treatment.

  • Susie-Q
    Susie-Q Member Posts: 9
    edited August 2010

    Hello.  Another freaking out stage 3a'er here.  Typing in the dark so I don't wake up my boyfriend...I'm two T's away from being finished with chemo.  Have heard the 50% prediction too.  Can't sleep and was hoping to find someone awake.  Am most recently being pissed off by fatigue, so why can't I sleep at night.  Also, who expected hot flashes at 42?  Am trying so hard to be positive, but ladies, I need to bitch!

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