Just Moved from Stage 1 to Stage 2 :(

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DebRox
DebRox Member Posts: 437
edited June 2014 in Stage I Breast Cancer

I received pathology results today with mixed news.  I am 46 years old, premenopausal and recovering from a lumpectomy that took place last Thursday.  My sentinel node biopsy came back 0/1, and margins clear, that was the good news. 

The bad news was that the tumor was larger than anticipated (BS thought a satellite tumor may be forming next to tumor per mammo but didn't really know), anyways the tumor is now 2.6 instead of 1.7 which moves me to Stage 2.  In addition my Grade moved up from grade 2 to grade 3 and lymph-vascular invasion is now present along with perineural invasion, this was not present in core needle biopsy.  And finally my Ki-67 50% considered high. 

I am devastated by this news.  My BS will not request an oncotype test.  She feels that chemo will be in my future.  I will be speaking with a MO on Thursday after my checkup with the BS. 

I really thought that with the negative lymph nodes, I was almost home free so to speak.  I feel just as bad as I did six weeks ago to learn that I had a highly suspicious mass and an enlarged lymph node.

What do I expect next?  Will I be sent for the usual round of tests PET scans etc?  Any suggestions of type of chemo that will be in my future? 

In addition to being petrified of chemo, I am borderline or pre-diabetic and worry that the chemo will exascerbate this condition.  I am worried about so many things.  I am frightened and devastated.  Any insight would be greatly appreciated!  Thank you.

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  • revkat
    revkat Member Posts: 763
    edited April 2011

    Oh DebRox, I'm so sorry. I went through the same thing of being bumped up to stage two -- due to a bigger tumor and a significant tumor in the sentinel node. It sucks. I was 48 and premenapausal at the time. It's a hard stage of this process, when they are still gathering information. I had an abdominal CAT scan and a bone scan after the surgery and was terrified of another nasty shoe dropping. None did, but I did get moved into the chemo for sure category. (Some docs they will do an oncotype test for node positive, premenapausal patients now, but three years ago, no way.)

    I had TC X 4. It was awful (I'm not one who "breezed through", though they do exist and you may well be one!). But I survived. I don't know what your oncologist will suggest, but if he/she has your medical history they will work with you to find what will do the job with the least damage to the rest of your body. Share your concerns and keep asking until you understand the answers! It really does help to take someone with you to appointments; I consider myself fairly intelligent, butthese big decisions can always use an extra head!

    I've now put in 2.5 years of tamoxifen treatment, so I'm halfway though the hormonal treatment. It is a long haul, but what choice do we really have? Step by step is the way through. Try not to worry about what could happen until it actually does (I know, that's not so easy to do.) Take care of yourself. 

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  • lago
    lago Member Posts: 17,186
    edited April 2011

    I had the opposite happen to me where I went in thinking I was going to be a stage IIIA but ended up being a stage IIB. To be honest I think I'd be getting the same treatment.

    I did 6 rounds of Taxotere & Carboplatin (with Herceptin but you won't need that because you are not HER2+) My first 3 chemos weren't bad at all. I was working out the next day. The 4th was a bit more difficult and then after that, I just got every stiff and achy. 

    Good news is that chemo usually works really well on faster growing tumors (grade 3). Also there are many times when someone is a stage I doesn't get aggressive treatment and it returns. You won't have to worry about being under treated.

    Chemo scares us so because of all the bad stuff you read. There are some women like revkat that have a tough time. There are many like me that it isn't so bad… and I'm saying that only 14 weeks post my last chemo treatment.I remember my first treatment very well. As they injected me with each drug waiting for something to happen… nothing ever did. Even the side effects I did get came on pretty gradually.

    Discuss with your onc your concerns regarding your pre-diabetic condition. Right now your fear is the fear of what you don't know. We've all been there. Post questions on this forum but use the information to question your oncologist. Remember that most of us here are not doctors so the information is more opinion/recommendation by non medical professionals.

    hugs ♥ ♥ ♥

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  • cbm
    cbm Member Posts: 475
    edited April 2011

    DebRox; I am so sorry that you have to go through this.  I was terrified of chemo; terrified.  Sure that I would be allergic, becasue I'm allergic to everything else.  Sure that I would have heart problems, because, well, I have a congenital cardiac arrhythmia.  Sure that I'd be the one to code in the clinic.  

    I was fine.  They load you up with stuff that makes the chemo not so awful, and watch you carefully, because they don't want to make you sick, they want to make you well.  It is not pleasant, but you do find out how strong you are and you do develop an appreciation for those wonderful nurses and caregivers.

    They may do a PET to decide on your treatment plan, but may not; my oncologist ordered mine to make sure they had my stage right.  If it isn't offered, I'd request it; request every test that you can get.

    I figured my job was to seek the best information I could get,  keep my doctors and clinic on track (I asked a lot of questions and saw at least the p.a. every visit for the adriamycin portion and every other for the taxol), stay as healthy as I could (which meant minimizing exposure to germs and bacteria), and be nice to everyone.  Sometimes it felt like work, but it made me purposeful.  

    You will be fine; you are young and you have good doctors.  I found my oncologist to be one of the most reassuring influences in my experience.  Oncologists get us through the hard parts and they see us return to good health, so they can be a great help in telling you to put your head down and power through the tough parts.  

    Warmly,

    Cathy 

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  • Melmes
    Melmes Member Posts: 76
    edited April 2011
    Hey, Debrox - hang in there. I also had unexpected results for my lumpectomy in terms of finding cancer in the vascular system and DCIS as well as IDC, although my tumor was still tiny. And I was totally floored and scared and panicked, but also strangely calm. I remember telling my doctor "It was all too easy, there had to be more to it." I was at once freaked out and bizarrely calm and matter-of-fact. As soon as I heard they found cancer in the blood vessels in the tissue sample, even though it was a tiny amount, my immediate response was "weed killer" (AKA chemo). My doctor was on the fence about that, but wanted to re-excise for cleaner margins. I told her "OK, you can re-excise, fine, but I'm HAVING the chemo. I'm not leaving this up to statistics, the only way to KNOW it's not spreading is to kill it off, and the only way to KNOW we killed this off is chemo."  Fortunately, my oncologist agrees and they did an oncotype that confirms that my chances of never seeing BC again in this lifetime shoot up to 95% with chemo and radiation treatments. I will take those odds any time. My doctor is AMAZING, but she is a general surgeon, not an oncologist. Afte rmy appointment with my oncologist yesterday, I felt SO MUCH BETTER, and I know they are giving me the best treatment they have. Your doctors are doing the same for you, and your diagnosis is still very treatable, a good prognosis. I know this is scary - geez, I was shaking like a leaf yesterday until I started talking and getting my questions answered - but knowledge is power, and there's comfort in KNOWING instead of just wondering. Now you KNOW what you are up against, and your doctors have a plan to take care of it. Hang on to that knowledge. ((HUG)) YOU WILL GET THROUGH THIS!!!!! And if you have questions or doubts, you are entitled to a second opinion at any point in your treatment - and I agree with the other pp - get every test they will let you get. Because - knowledge is power.
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  • mdg
    mdg Member Posts: 3,571
    edited April 2011

    I am sorry...I know after I had my lumpectomy/SNB they changed my grade from grade 1 to grade 2 and I found out I had lymphavascular invasion.  That freaked me out....it was such a set back to me.  I was devestated too.  I am still stage 1 due to tumor size but lymphavascular invasion did not sit well with me.  I did have oncotype and came out at 17 (the highest score in the low category).  I did opt for chemo as I am only 45 and have a 4 year old son.  My compromise was using cold caps to keep my hair.  I am doing great.  I was petrified of chemo even more than my BLMX but it has been easier than I thought for me.  I have my last treatment next week and still have my hair.  No one knows I have had chemo unless I choose to tell them.  I exercise every day and have only felt bad a few days in the past 8 weeks.  Everyone is different...you never know how you will do.  It has been much easier than I ever anticipated...I am very fortunate as I know everyone is not this lucky.  If you do have to do chemo, I think the things that have gotten me through it well are exercising 5 days a week, eating really well, vitamins and also keeping my hair....emotionally that has kept my spirits up.  The only time I feel like a chemo/cancer patient is when I go to the med onc office. 

    I just wanted to give you a postive experience...I know how scary this is. Take it one step at a time.  Meet with the med onc...they may do the oncotype but often if you are grade 3 they will skip it I believe because they may prefer chemo with grade 3.  I am not sure though...don't quote me!  I would definately ask about oncotype and see what the med onc says anyway.  Best of luck....hugs!

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2011

    Yes, I was moved to Stage II after my surgery.   My tumor was fairly small, I guess they were surprised after surgery to learn I had lymph node involvement. 

    But if it helps you at all, I had a MUCH easier time with chemo than i anticipated.  I was terrified before my first treatment.   But turned out I worked full-time through most of it.   Don't get me wrong, it was tough, but not as bad as I thought.

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  • DebRox
    DebRox Member Posts: 437
    edited May 2011

    THanks everyone for the words of encouragement.  I see MO number 2 today.  I didn't really care for the first one.  He merely printed out a menu of chemo options as though I was choosing an item from a restaurant.  He was really pushing 3rd gen  as I believe they give the best outcome, plus they will put me into permanent menopause, I really think thats why he was going there. But the downsides are intense as well in terms of side effects and damage to my body.

    I looked at 2nd gen - TC and that looked the best to me 4 cycles every 3 weeks. 

    Today I head to my second opinion.  This one is a woman who I think will be less technical and perhaps more understanding and compassionate.  Thursday I go to my 3rd MO, someone I found recently who is at an accredited NCI.  I somehow think I will end up there.

    Next thing on my to do list is to look into cold caps.  I was going to let my hair fall, but I think I will look at preservation if I can.  I hate this disease.  It is not like we haven't gone through enough already - losing our breasts or altering them permanently with surgery, losing our hair and killing cells in our bodies in order to obtain health, and finally for those ER+ women, a five year comittment to taking a drug to hopefully keep the cancer away.  I don't even know where mental health falls in here.  The rollercoaster of emotions is hard to deal with.  I am considering asking for some type of happy pill now.

    This from a woman who wouldnt take an aspirin for a headache!  Cancer sucks!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2011

    Hi

    This is hard... my stage moved from 1 to 2 because of size... and I did chemo and radiation.  Let me also offer you a good story-- I had 4 rounds, one every other week (so it only took 8 weeks) and I worked full time through it, had two young children. Then I had 6 weeks of radiation.   As has been said, that is not everyone's experience, but everyone's experience is not awful either.  The emotional part was harder--- if you can get some ativan, it might help you.  I found it helpful when the game would change--you know, the lump is larger, the stage is higher, chemo looks likely--- these are all mountains to climb in this experience and there is nothing wrong with getting a little help along the way.  I had an ativan in my pocket all through the diagnosis and prepping for treatment phase--- it seemed to me like shoes were dropping all over the place---

    Cannot speak to the cold caps-- I just let the hair go- got a great wig and just went about my business... not saying it wasn't hard-- but I know some oncs don't like the cold caps so make sure you get one that will support your decision.  

    One phase at  a time--- that is probably the best way to deal with it... it can be overwhelming if you try to take it all in.  maybe just focus on the MO now and getting set up for the treatment.  Plenty of time to take the next step after that.....

    Lots of people here to help you.

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2011

    Deb, you will be okay.   I think many women don't have nearly a hard time with chemo as they thought they would.   And if you are on 3rd gen chemo (i.e. AC/T), you will lose your hair.   Don't even bother with cold cap.   However, it WILL grow back!   Soft and full (at least mine did).   Buy a beautiful wig and some scarves.  

    I think that is good you met with different docs.   I met with two before choosing my onc.   I didn't like the first one.  

    Also, mine wouldn't do an oncotype test since I had lymph involvement.   Said I would need chemo, period.

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  • MamaV
    MamaV Member Posts: 907
    edited May 2011

    DebRox - I'm with you on this darn stage upgrade too.  I was at 1.7cm but when my surgeon went in for clean margins I was increased to 2.0.  During my lumpectomy, my nodes came back clear.  THEN, after microdisection of the nodes, 2 of them had tiny floater cancer cells in them.  SO - bumped me up to Stage IIA.  I was devestated like you and became another passenger on the chemo train.  It all happens to quickly.  Just take it one day at a time and you will get through this!

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