3.5cm tumour, 14 out of 24 nodes infected - is survival poss?

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Lemongrove
Lemongrove Member Posts: 24

Diagnosed with stage 3, grade 2 oestrogen receptive tumour  with some Lymph node involvement on 11th December 09, and have been obsessing about it ever since . On January the 15th, 2010, had masectomy with Lymph node clearance. Yesterday, I was told that the tumour was bigger than they originally estimated (they originally thought it was 2.5 cm, but it was 3.5 cm), and 14 of 24 Lymph nodes was infected. Consequently, I am now going to have a blood tests, a CT scan, and Ultrasound of my Liver, to make sure it hasn't spread beyond the nodes. Whatever the outcome, I will also be getting Chemotherapy every three weeks, for 18 weeks, followed by radiation therapy, hormone therapy, and then reconstruction. I posted a couple of days ago about being newly diagnosed and scared, and received some very encouraging replies - but this post operative report has really got me going. Is it possible to survive this sort of diagnosis?

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Comments

  • flash
    flash Member Posts: 1,685
    edited January 2010

    Absolutely possible.  If you check on the boards you'll find many woment who are NED after that kind of diagnosis for years.  Right now you need to concentrate on one thing at a time until you know all about the type of cancer you have.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited January 2010

    I am so sorry you are dealing with this. When I was first diagnosed, i was so terrified. I was assigned a peer counselor through our local breast cancer coalition. She was 33 when diagnosed, had a mastectomy on one side and multiple lymph node involvement. She did all the same stuff you did. By the time we met, she was turning 40, perfectly healthy, raising her kids, having a full happy life and helping others. It was tremendously encouraging to me to know her - partly for what she said, but partly just for her BEING HERE and being so happy and healthy. I hope this gives you hope as well.

  • mbk
    mbk Member Posts: 201
    edited January 2010
  • cherneski
    cherneski Member Posts: 726
    edited January 2010

    Lemongrove, So sorry you had to join us here.  Yes it is absolutely possible to survive this dx.  And you can even do better than survive, you can LIVE LIFE with it too! 

    Finding out you are stage 3 puts us into a bit of shock, I know I was thrown into it here and lost it all over again.  

    There are many women on here that have your stats and are happily living.  I myself just had cancer soup and although I hate cancer, I just keep putting one foot in front of the other and somehow it is all working out.  

    Hugs and welcome to this side of the board.  

    Are you having taxotere and cytoxin for chemo?

  • DCMom
    DCMom Member Posts: 624
    edited January 2010

    Oh my gosh...a very definite yes.  I am sure some of those women with the exact type node count as you will be along shortly to reconfirm a resounding yes.  Don't listen to the statistics and don't dwell on the nodal count.  It's a crap shoot and you are very likely to come away with a good outcome.

  • helena67
    helena67 Member Posts: 357
    edited January 2010

    We are all well read on the subject of breast cancer!!!!!!

    The answer is YES.

    Yes you can! No-one can give you a guarantee but treatment is so much better these days than it used to be. Plenty of reasons to be hopeful. One word of advice: make sure you are treated by a good oncologist with real expertise in the treatment of breast cancer. Go to a comprehensive NCI designated cancer center (or get at least a second opinion at a reputable place).

    Take care!

    Helena.

  • weesa
    weesa Member Posts: 707
    edited January 2010

    Lemongrove, I received a diagnosis similar to yours and had treatment like what is planned for you--over 7 years ago. Never had a scare since. My tumor was bigger than yours. I did not have as many lymph nodes affected but they were huge, with large tumors around them and matted together. The fact that you are Grade 2 is good, hormone receptive is good. Do you know your Her2 status yet? Even if it was spread to distant sites you have lots of good treatments to try.

    As one of the other stage 3 posters said, "Nobody ever dropped dead of breast cancer." (KerryMac).

    Please don't make the mistake I made--I was so freaked out by my diagnosis I didn't really live my best life the first two years or so. And stick with us, a great bunch of truly caring women who have been there.

  • Lemongrove
    Lemongrove Member Posts: 24
    edited January 2010

    Just want to add, that in addition to sheer terror, I am so angry with myself. If only I had noticed the tumour earlier...How could I not notice a 3.5cm tumour? The thing is as well, I have attended every mammogram check up, and last attended in November 2006 (I live in the UK, where women get a mammogram every three years), so how can a grade 2 tumour have grown so quickly?

    Sorry to go on when I know there are others much worse off.

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited January 2010

    Wow, I'm sorry you were blindsided by the final pathology results.  I think a lot of woman have the same issue.  They were told one thing before or right after surgery and think that is the final result.  I too was shocked by the size of my tumor---6.5cm---with 13/15 positive nodes.  It sucks.  No two ways about it.  But I HAVE NO PLANS ON GOING ANYWHERE, so neither should you!  I'm in the middle of my chemo (4 cycles AC followed by 4 cycles of Taxol) and yes the chemo has been hard.  But I keep looking ahead---right now I'm halfway done!  I'm still scared at times but I try not to obsess over it.  If it gets too hard maybe reach out for some help---support groups, therapy, whatever works for you.  But don't worry, we'll travel this road together!

    Be well,

    Sharon

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited January 2010

    Oh, I just saw your last post too Lemongrove.   PLEASE DO NOT BEAT YOURSELF UP over not finding it sooner!   It is what it is.  I've been where you are and it does absolutely no good.  You can't change it or go back.  I had a mamogram EVERY year and I found this myself.  It didn't seem that large when I found it, felt like about the size of a marble, but I had DDD breasts, so it must have been way in there.  Amazing that last year's mamo didn't pick it up.  But again, I can't change what's happened only how I deal with what's to come.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited January 2010

    Dear Lemongrove,

    I got faked out by a lump I had half my life and had always been just fine in mammograms.  So it wasn't detected either.  Fortunately, I found the enlarged lymph node and went for help.

    More on your topic, one of my close friends was Stage 4 with mets to her lungs several years after her treatment.  They found them when she was going in for foot surgery!!!  However, she was treated with hormonal therapy and all has been fine for about 10 years.

    BTW - she is the most gorgeous and positive woman you could ever hope to meet.  Plus the most wicked sense of humor.

    I think that what I can say that could be helpful is to work with everyone to figure out the best course of treatment, then suck it up and go down that path.  None of this is fun, but I have found do-able.

    The other thing I can say is that exercise is the single most important thing you can do for yourself, both in terms of your well being and non-recurrence.  For Stage 3, as little as 3-5 hours of brisk walking reduces the relative risk by about 70%.  (JAMA - Physical Activity and Survival After Breast Cancer Diagnosis, May 25, 2005).  Coming into this whole experience as an exerciser, I was thrilled to learn this.  I have even exercised during chemo, but not everyone is able to.  I think it has helped me immeasurably.

    Anyway, good luck.  I found that once I had a course of action in place, it all got easier.  Then it became a  case of just going down the path.  Now that I am a bit over half way through chemo, I do see the end.  So you do get there.......just seems so very far off at the very beginning.

    BTW - beating yourself up isn't helpful.  Working on the solution is where your focus needs to be.  Again, best of luck in navigating the journey ahead. - Claire

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2010

    I had guilt too. I actually noticed my tumor when it was much..much smaller. But because of my age, 30yrs at the time, "i was too young for breast cancer" and it had to be something else.

    It grew to 8cm...8cm! I then went back to the doctor, had a mammo and the rest was history.

    I felt sick knowing that I had cancer growing fast inside me....I literally threw up oneday. But thast the past, I had treatment and its been almost 2.5 yrs since diagnsosis.

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

    Don't beat yourself up over coulda, woulda, shoulda - we've all been where you are.  I found my lump and didn't call the doctor because I had my regular appt scheduled for my mammogram a little over a month away - figured it was a cyst.  

    Now is the time to look forward, not backwards.  Focus on yourself, your treatment plan and what needs to be done to heal you. 

    You will get through this.............please come here when you need support, want to rant, ramble or have questions.

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

    Me and you have the same diagnosis:) If you can read some of my early posts-I was a mess but had some of exact same emotions as you. If I can help in any way please pm me. I am in the middle of chemo and quite honestly I am ok-I really am. I have found strength and peace I never knew existed. It sucks-no doubt but it's getting better and I am determined that something amazing will come out of this.

  • MaineCoonKitty
    MaineCoonKitty Member Posts: 125
    edited January 2010

    Of course it's survivable.  I had a 22 lb phyllodes malignant phyllodes tumor.  Yes...you read that right.....22 LBS!  Phyllodes is the rarest of the rare breast cancers - less than 1% of all diagnosed breast cancers are phyllodes, only 400 or so diagnosed cases in the world each year.  It's so rare that the last significant clinical trial was done in 1995.  I was told by my team of doctors that they didn't know if this type of cancer would react to either chemo or rads, but they thought outside the box and went to bat for me.  I opted to do them both because I figured that I had nothing to lose and everything to gain.  My tumor grew from nothing to HUGE within 3 months.  That's usually a sign of a very aggressive and deadly cancer.  I was told to expect to be told that it was stage 4.

    I had a total mastectomy, got clear margins and much to everyone's surprise, there was no lymph node involvement or any sign of mets.   I went through nearly 6 months of chemo and now will be starting 33 sessions of rads this Monday.  I sailed through chemo with very few side effects.  I worked a very stressful job all the way through it and never looked back.  It was not fun, but I was very determined not to let cancer and chemo take over my life.  I feel like I spit in cancer's eye and told it to take a hike by not giving into the side effects and by keeping my life as "normal" as it could be.  It really was not bad - I never once had any nausea or vomiting, just a little extra fatigue at the end.

    Guess what?  Not only am I NOT stage 4, but I have NO EVIDENCE OF DISEASE!  I was given the option of saying no to rads, but decided that if there's even the slimmest chance that the chemo might have missed something in there, I want to hit this monster with everything I can.  And the best part.....my case has been reviewed by several world-class experts on malignant phyllodes tumors and will become the basis for a new treatment protocol for those who are diagnosed from this point on.  I give much credit to my oncology and surgical team because what they did was to try something new and unproven and go against conventional treatment protocol in this type of cancer - and it worked.

    So the point here is that no matter how grim your initial diagnosis might seem, you need to remember that not everything in cancer treatment is black and white.  Everyone and every case is different and you need to remember that treatment protocols are evolving every day based on something new or something that no one thought to try before.  No one has all the definitive answers yet and even the experts learn something every day in this fight.  5 years ago, I would have been told "Phyllodes does not respond to chemo or radiation".  Wrong.......mine did.

    Keep the faith, sister. Chemo is not the most fun in the world, but it's very doable.  Fight with everything you have and don't let short-term discomfort or inconvenience sway you away from long-term benefits.  All of us here have been through it and know what you're facing, but we're here for you, just as those who came before us were here for us.

  • Scooter-12
    Scooter-12 Member Posts: 33,398
    edited January 2010

    Hello Lemongrove...There is a lady on another board that had 22 positive nodes and is a 23 year survivor.  Best wishes.

    Anna

  • Maryiz
    Maryiz Member Posts: 975
    edited January 2010

    Lemongrove, yes, yes and yes.  You will survive this.  You don't need to go down the path of guilt. Many of the women here feel guilt because we put ourselves last, taking care of others.  That is our nature.  Forgive yourself.  Go forward.  You are stage III with good stats.  You are going to be fine.  Maryiz

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Lemongrove ~ hang in there sweety, you can have hope with this diagnosis.  You've found a good place to share your fears.  So many women on this board who are "thriving" while surviving this disease.  Just recently a stage IV lady posted her 17 year anniversary NED.  So take each day as it comes and one step at a time and rely on your health care team to help beat the cancer bitch into submission.

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2010

    There is also another woman from another board that had 35 nodes positive. She is more than 5 yrs out!

  • starwatcher
    starwatcher Member Posts: 26
    edited January 2010

    Hang in there--use this board for suggestions, ventilation and support.  Loads of Hugs!!!!

  • apple
    apple Member Posts: 7,799
    edited January 2010

    i post

    therefore i am

  • tamgam
    tamgam Member Posts: 255
    edited January 2010

    Keep positive.  There is ALWAYS hope.  I will keep good thoughts for you and all of us facing this challenge.  Never underestimate the power of positive thinking and prayer!

  • lassie11
    lassie11 Member Posts: 1,500
    edited January 2010

    No need to beat yourself up over not noticing the tumor. It could be that it wasn't able to be felt. Mine (twice) was not palpable even by the surgeon when he knew where it was. It was too close to the chest wall to be felt by anyone.  Thank goodness for mammograms!

  • kimber3006
    kimber3006 Member Posts: 586
    edited January 2010

    Yes, you can survive!  You're in a great place for support while you get about doing it, too.  As the others said, chemo isn't fun, but it's definitely doable.

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited January 2010

    Lemongrove,

    Don't beat yourself up over anything you've done or any decisions you've made.  I messed around for about two months after I found my pea-sized lump before I got surgery, and it made me so upset.  I always wondered if I had dealt with it right away would it have gotten into my nodes.  Who knows?  We'll never know. 

    I have a friend that I couldn't even talk to for a while because she always wanted to beat me up for not taking care of it earlier, and that she was so afraid it would come back and I'd ignore it again.  That ticked me off.  I was taking my MIL to chemo treatments, and my DH was being treated for brain cancer, and she was wondering why I was "blowing off" my lump.  Sorry, I digress...but my point is that so many crazy things can happen to us and around us, and you just have to do the best you can. 

    You can do this, and we are here to help each other through it.  One day at a time, girlfriend, that's what your mantra has to be (one of them, anyway).

    Hugs
    Bobbie

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited January 2010

    Writer Susan Sontag had 31 positive nodes and lived for another 30 years without a recurrence. She didn't even have the benefits of modern chemo, anti-hormonals, and zometa.

    I am quite certain that, with all the crazy things I do, my death will be ala Steve Irwin instead of from breast cancer. I'm not sure if I find that reassuring or not.Undecided

  • kimf
    kimf Member Posts: 334
    edited January 2010

    Lemongrove, I had almost the same result as you, was told 2.5, ended up being 3.5 cm with 15 out of 23 pos nodes. I am happy to report that I am 5 years out and still doing great. This is VERY survivable! Good luck with all of your testing. Sending positive vibes that all tests will be negative for mets and you will be on your way to starting chemo asap!

  • precioustime
    precioustime Member Posts: 233
    edited January 2010

    Lemongrove--

    YES - AS LONG AS WE ARE BREATHING -WE HAVE ALL SURVIVED!!  I had yearly mammograms and was found with IDC Stage IIIB  6/09. Had 12 out of 18 positive lymph nodes and 1 lymph node positive to the internal mammary node!  I have completed 6 mos. TAC chemo and BMX with rt. axilla dissection so far and will start RADS on 2/1/10.  I consider every day of life as SURVIVING!  I look at it as you could be perfectly Healthy and die instantly in a Car- Heart Attack- Catastrophie or anything... NO ONE knows when they are going to take their last breath.

    I have also learned by these forums-- there are Stage IV ladies that had ZERO node involvement.  Having node involvement is not always bad-- it just means that the lymph nodes were doing their job--RIGHT! 

    We can let Fear overcome us or Overcome our Fears daily by enjoying each and every moment that we have!  This is a lesson that I have learned through my Cancer Journey.  I was one who complained about alot and was not thankful as I should of been.  Since I have had a Cancer diagnosis, I look at life differently and am Thankful for Everything and try not to Complain about anything!!!  I THANK GOD FOR THE GIFT OF LIFE and I'M GOING TO ENJOY IT!

    Take One Day and One Treatment at a TIME!

    Loretta

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Lemongrove - I was totally rattled when I got my Path report too. I knew it was in my nodes, but there was always that hope that maybe I was still Stage 2....Seeing it in black and white makes it all the more final.

    My advice is to put your path report away somewhere (mine's in the back of my closet) and start looking forward. What's done is done, there is no sense feeling guilty or blaming yourself. You can't change it, but you can fight it.

    There are many women posting on these boards that have been around for a long, long time following a dx sinilar to yours. There is no reason why you won't be one of them! 

    There is a study I will hunt up, which I found very reassuring when I was first diagnosed, about survival with extensive nodal involvement.  Things are not they way they used to be!

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Here it is - and this is already 5 years old!! Print it off and read it when the Crazies strike! There really is so much hope.

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

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