Calling all Stage II Sisters!!!

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2011

    Hi Faithroad. Your situtation is the closest to mine I've found & I'm agonizing over wether to do chemo. I have stage 1 grade 1 in my right breast & stage II grade 1 in my left. I see you had the oncotype test. Did you have it run on both tumors. My oncologist is reluctant because he says there is not much data about how to interpret this test in bilateral disease. I was told that if I did nothing more, I'd had a 25% reocurrence rate, took Tamoxifen it would go down to a 15%, add chemo it would drop to 10%. They did find 2 positive nodes which is why I'm stage II. The prevailing thought seems to be because I'm healthy with no other health concerns, I'll do fine on chemo. But I don't have to look far to find women with long term effects from chemo. I'm a little confused because chemo is suppose to target rapidly deviding cells & grade 1 isn't

  • pippilotta
    pippilotta Member Posts: 2
    edited June 2011

    Hey gals!

    Count me in! I finished AC and Taxotere 1 year ago. Then had lumpectomy but refused Tamoxifen and rads much to horror of my surgeons. Now feel like I'm floating with no anchor to hang onto. 

    How does one stop thinking about cancer every day? 

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011

    Hi pippi! I think that's the million dollar question! My favorite trick - when my mind wanders over to the cancer topic, I immediately think of something else. It seems to keep the anxiety at bay, and if all else fails, I take a xanax. I've only had to take about 5 since my diagnosis a year ago, but gotta say, having ADD comes in handy sometimes! 

    Keep hanging around these boards and you will find lots of good advice! 

  • sanbar8771
    sanbar8771 Member Posts: 281
    edited June 2011

    Heartnsoul76...really, only 5 Xanax? Wow, you are really strong. I have been seeing a breast cancer therapst for about a year since I was diagnosed and he has tried to show me some tricks to get rid of anxiety like Meditation and yoga but darn...only 5 xanax? Ha ha, yeah I prob take one a day. I am so glad to have this board so I can vent and know I am not alone. Thanks All!

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011
    hahaha, sanbar - I swear it's the ADD! I can't even focus on my worrying! What's been a curse all these years is suddenly a blessing!
  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    Coraleliz,

    Hi,  Yes, they did an Oncotype test on both my tumors.  I had a 5 and a 4.  If the oncotype test wasn't available to me, I would have had to do chemo for sure.  But my doctor made her decision about the chemo based on that test score.  She said my scores were so low, that the chemo itself would cause me more risk of danger, than the cancer returning.  That's interesting about what your Onc said about the oncotype test and bilateral disease, hmmm.  I would think any extra information would be good to have.  They also suggested I get tested for the BC gene.  Did they tell you that too?  I guess, Bilateral BC is common in people who carry the BC gene. I tested negative, but they told me to test again in a few years as technology increases.  I'm sorry to hear you have to do chemo.  (hugs)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Hi Ladies,

    I am new to this thread. I was dx with IDC 7/10. I was put on neoadjuvant chemo, so didn't know my final stage until weeks after chemo. I knew I had at least one node (huge!) and they suspected 2 others. My tumor size was hard to read because of lots of surrounding enhancement. I went through chemo (ACx4, T x4) not knowing what stage I was and it was horrible. After surgery, they classified me as IIB with 2.5 cm tumor (1.6 when removed) and one node was still positive. Then I had 33 rounds of radiation. I had DCIS on the opposite (right) side. Attempted lumpectomy but more DCIS was found on the right, so 4 weeks later had BMX. I was 39 at dx.

    For those of you on the fence about chemo, I offer this: I have 2 kids. They were 4 and 8 at
    my dx. I asked for the most aggressive treatment. I was told oncotype testing is irrelevant when you're node positive. So I had the chemo, and would have taken more if they would have given it to me. Yes, the SE's are horrible and I was devastated by the loss of my long hair and my breasts. As yet, my hair is still painfully short and my reconstruction journey will be long. But when I look at my husband and my kids, I know being aggressive was the tight thing to do. It was easier in my case because I didn't have a choice, and horrible to go through it. Sometimes I still feel sorry for myself. Wish it was found earlier! But I was too young for mammos and no family hx. (13 years on the pill. Hope somebody is paying attention). Some days I feel like it's not going to get me down, others, I feel cheated and scared, and how does one live with this constant fear? My onc told me early on about the 'getting hit by the bus' thing (great, so I have cancer and I can get hit by a bus). Sorry, was not intending to be a downer. On the plus side, I've learned to take better care of myself and take nothing for granted. I often think that, if it doesn't kill me, then it's been the greatest gift in my life.

  • Bold
    Bold Member Posts: 692
    edited June 2011

    neece:

    I am 2% also. I went to 3 different onc. They all thought that Hormone therapy would not be useful. The side effects may not warrant the results. I would get another opinion on the Hormone therapy. I understand that you want to have tools to fight!! So does your onc. But 2%? is equivocal. I support you with what ever decision you make. I am just sharing my opinion. Best of luck in this battle. You will win!!!!!!

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011

    pinkbutterfly - welcome to the thread! Thank you for sharing your story - it helps everyone with their own decisions (most of our oncs won't say anything!) and there are just so many to make. I just cut the horrible chemo curls out of my hair so it is still short - it was long and straight before chemo. I had no idea how much I would miss my hair! I was just thinking of that line from the Grateful Dead song: What a long, strange ride it's been. Yes, that about sums it up.

  • neecee
    neecee Member Posts: 663
    edited June 2011

    heartnsoul76, as you cut your chemo curls, I am pulling my hair out - literally.  Started shedding yesterday, and it is coming out in small clumps today.  A strange ride, indeed.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011

    neecee - oh, that is the worst part! I never did shave my head - my hair was so thick my son and even the onc thought it would still look okay - wrong! But I did keep cutting my hair shorter and shorter and then when it started coming in I just cut it all the same length. That felt much better! But, if you want to keep it as long as possible, it did work out okay having some hair show underneath my scarves or hats - I was able to pass that off all through chemo. Still, it felt so good to cut it off! Have you decided what you're going to do?

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2011

    pink - I had the oncotype test done and I had a positive node - the SN but it was a micromet and according to my BS the Genomic Lab would consider that node negative because it was so small. My score was low and my tumor was determined to be non aggressive and because of my test score I didnt have to have chemo - doing Rads instead so I am grateful I was able to do the test.

    sanbar -  I know how you feel. It is hard for me to handle something I cant control at all. I want to do all kinds of remodeling to the house - which we need anyway - and work on this beast not controlling my and my family's lives. I think we all at the end of the day have to give ourselves credit for taking on this disease we sure didnt ask for and dealing with it every day. I know we dont have choices but we could all just give up and let it beat us. Not happening.

  • GiGiL
    GiGiL Member Posts: 928
    edited June 2011

    Hi, I have been reading your posts and learning much along the way.  I received my pathology reports from my lumpectomy today.  My tumor on MRI originally put me into Stage I, but when the lumpectomy was done and pathology completed, it was 2.6 cm.  That bumped me into the Stage II category.  I am reading and learning all I can before I am healed up and ready to have a return meeting with my surgeon.  What is the oncotest and when is it done?  Do they do it automatically?  I am going to a well known breast center where an entire team works on your case.  I heard oncotest mentioned in passing.  I am just wondering what lies ahead.  I am quite frightened about chemo, if that should be the recommendation for me.  After reading all of your posts, my fear is a bit less.  Thanks!

  • GiGiL
    GiGiL Member Posts: 928
    edited June 2011
    Hi, I have been reading your posts and learning much along the way.  I received my pathology reports from my lumpectomy today.  My tumor on MRI originally put me into Stage I, but when the lumpectomy was done and pathology completed, it was 2.6 cm.  That bumped me into the Stage II category.  I am reading and learning all I can before I am healed up and ready to have a return meeting with my surgeon.  What is the oncotest and when is it done?  Do they do it automatically?  I am going to a well known breast center where an entire team works on your case.  I heard oncotest mentioned in passing.  I am just wondering what lies ahead.  I am quite frightened about chemo, if that should be the recommendation for me.  After reading all of your posts, my fear is a bit less.  Thanks!
  • sundermom
    sundermom Member Posts: 463
    edited June 2011

    GiGiL-



    My tumor size changed as a result of surgical pathology as well. It went from less than 2cm and no positive nodes on the MRI and PET(stage 1) to 2.2cm and two positive nodes (stage 2b). It was also upgraded to Grade 3 - fast growing, highly aggressive. The grade and node status typically drive the decision on chemo. I completed a dose dense chemo with AC and Taxol. It can be done. For me losing my hair was the hardest SE, but it's growing back now and am thankful I received aggressive tx.



    Tammy

  • neecee
    neecee Member Posts: 663
    edited June 2011

    heartnsoul76 - the shedding is already getting on my nerves, so I expect I'll shave it sooner or later.  My hubby is going to shave his head in support when I decide to do it.  I also have thick hair, but I already wear it short, so if this clumping continues, I am going to eventually have some serious bald spots!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Heartnsoul76,

    Yes, indeed it is a strange ride (and I want to get off!)

    To all the ladies on this thread, apologies for being a downer with my previous post. I was intending to offer encouragement to those of you still in the throes of treatment, so let me try again.

    Chemotherapy, surgery, radiation, all those decisions-it's no picnic, but there is light at the end of the tunnel. I'm 6 weeks out from radiation, and still trying to figure out reconstruction, and find my "new normal". Every once in a while, those disturbing thoughts come back. One thing that has helped me was to keep a journal of uplifting thoughts, clippings on long term survivors, scripture passages that give me hope and comfort, etc. Today, I needed it, and it helped. sometimes I get so wrapped up in these thoughts, I lose the big picture. I have to remind myself that He is in control, and that is no different than before. And, also, even if the unthinkable were to happen, He's waiting for me on the other side (but I'm in no particular rush, Lord).

    One final thought: in my own case, the information got so overwhelming and frightening, I decided to go for a second opinion. That way, I didn't have to sift through all the clinical reports and read about all the possible outcomes. I went someplace I trusted to have the most expertise and when they told me basically the same thing, it put my mind at ease that I was doing the best I could. I strongly encourage getting a second opinion, sometimes it can confirm what you've already been told, or offer you new options to consider - both good, I think.

    Much love and good wishes to all.

  • KanRunMo
    KanRunMo Member Posts: 8
    edited June 2011

    3 1/2 years out of treatment.  When I get upset, I just remember what my oncologist said when I first saw him.  He said, "However long you would were scheduled to live before you had breast cancer, you will still live that long."  I had a double mastectomy and had no problems with it at all.  I also had breast reconstruction.  It did not bother me much either.  I played tennis and golf and exercised through chemo and breast reconstruction and still do.  I think the more exercise you do, the less the treatment affects you.

  • libraylil
    libraylil Member Posts: 528
    edited June 2011

    Kanru what an uplifting statement from your onco! I needed that today. No reason just whiney. Libraylil

  • libraylil
    libraylil Member Posts: 528
    edited June 2011

    Pink butterfly, at my last onco appt I told dr smokin hot that I still can t believe I have cancer. It is a strange ride. For the longest time I kept waiting to wake up and find out it was a weird nigHtmare. Now I feel like I have made it through the tx and don t think about it every nanosecond. I had a moment of pathology report obsessiveness last night and began to comb through my path report for good words.

    Al fellow stage twos have a good Wednesday.

    Libraylil

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Libraylil and KanRunMo,

    Yes, it helps to draw from positive words, ESP from our medical team. Mine was, unfortunately, very stingy with them, even tho my BS says I should do fine. He was about the only one with any compassion. His wife had BC 30 years ago, so he's walked a mile in my shoes...he told me that most women will never have a recurrence, even with + lymph nodes. Hope I am 'most women.'

  • Cyborg
    Cyborg Member Posts: 848
    edited June 2011

    Hi! I am stage II also. Read through the thread. Good support here.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011

    Hi Cyborg! Like your "Charlie" signature - at least he coined a good term!

  • neecee
    neecee Member Posts: 663
    edited June 2011

    The shedding finally got to me - I had my head shaved this evening.  Hubby also did his in support.  I feel so much better!

  • neecee
    neecee Member Posts: 663
    edited June 2011

    Hey Cyborg - good to see you on this board, too!

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited June 2011

    neecee - haha, love the avatar! So that's what you did with your hair! LOL!

  • neecee
    neecee Member Posts: 663
    edited June 2011

    heartnsoul - thanks.  It makes me laugh every time I see it.  It is a great pictorial of how I feel in my wig!

  • mumito
    mumito Member Posts: 4,562
    edited June 2011

    Just found this thread. Neecee I love your avatar. I also went through chemo before MX surgery.I had a complete response to chemo which apparently is not that common.Apparently grade 3 tumors which grow aggressively also respond the same way to chemo.

    Good luck with your treatment decisions ladies.

  • theatercat
    theatercat Member Posts: 58
    edited June 2011

    Hello I am new to this site. I am newly diagnosed . Stage 2b cancer, tumor is in right breast about 5 centimeters. I have had a breast MRI,  two biopsies, and 2 mammograms. I briefly spoke to my breast surgeon when I was  first diagnosed. They did a fna the other day to check on my lymphnodes. I have an appointment on June 13th to discuss treatment. My new concern is I found a swollen node under my left arm.I had an ultrasound on my left breast and underarm 2 weeks ago.I assume everything was ok. What I got from my first meeting with my surgeon was they will do a lumpectomy,followed by 5 days of brachytherapy. Thanks for listening!

  • slousha
    slousha Member Posts: 312
    edited June 2011

    Hallo, I'm new to this site too, but was posting to the other sites

    I'm from Europe and discovered website BCO, was reading all about healings  medications and after a long time I arrived to Discussing boards. I'm so happy to find these sites. So, I'm here now and I'm very grateful to discuss with ladies in the same situation.

    I was found triple positive after my lumpectomy, accepted the complete medical treatment, (6x chemo with Docetaxel (Taxotere), 30 rads, one year on Herceptin), I'm on hormonal therapy (Femara) for 5 year now.. After two months I got knee, join pain, but my ONC. Said: "it works". I am taking ibuprofen. Vitamin D3, a pill of 30% tramadol with 70% paracetamol. I finished my first year! I'm eating healthy and however I discovered that a little glass of beer before sleeping reduces my pains at night. (Beer contains natural estrogen???!!!)

    My best wishes to all!

    Slousha

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