I am Stage 1 but the Grade 3 continues to make me nervous

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Nicole112
Nicole112 Member Posts: 327
edited June 2014 in Stage I Breast Cancer

I need some reassurance from my other sisters with Grade 3, Stage 1! My brain can take me to the "bad places" and I just need some affirmation from you ladies! Can you share your wonderful prognosis and years behind you so I can leave for a wonderful 4 day holiday to the snow with a peace of mind :) Everytime I bring up this issue with my dr's or my hubby, they say the grade only matters if you do not catch it in time... but since we caught it timely I am fine! Thoughts ladies?

Your sister,

Nicole

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Nicole

    Similar dx, except I was Her2, did you do chemo, did you have any LVI? The stats are good for your cancer even with grade. What type of hormonal treatment do you take? All of these things play into your prognosis. I think the old stats put all of stage 1 in the 85% at 10 years but it improves if you have no LVI and if you did chemo, hormonals etc.

     Dont' worry there are many on these board with grade 3 that are node positive that are years out.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2009

    Thanks mmm5,

    I did do 8 rounds of chemo, rads and on Tamoxifen... I take Zometa infusions every 6 months for the next 5 years because I was premenopausal. What does LVI stand for? Is that lobular? If so, I had invasive ductal. We were diagnosed at similar times, I hope Herceptin has made a world of difference for you!

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  • jillyG
    jillyG Member Posts: 401
    edited December 2009

    Hi Nicole, you and I have the same diagnosis/stats and I plan on being around until I am a crazy old lady with 37 cats.  I'm only 34 and I feel that I have a lot of years left that I could get cancer again but I try to just think that it's gone and logically I know that we have an excellent chance of being done with cancer forever.  I go to those places in mind all the time though, I think everyone does, cancer is terrifying, there is no getting around that.  I don't really know what to to think of the grade 3, it scares me a little, but I don't focus on that as much as the fact that I am stage 1 with no positive nodes. 

    Jill

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    LVI is listed on your path report as Lymphvascular invasion, a possible route to the bloodstream.

    The zomets is great for you and you are diong all that you should. I believe the Herceptin to have completely turned things around for Her gals.

    you should be fine!

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2009

    Jill,

    Great way of looking at things, we are similar ages, I am 37... but much like you I plan on being here for a long time :)

    mmm5- I will need to ask my dr about the lymphvasular invasion, never heard of it so hopeful this was not part of my path report... something they would surely bring up, right?

    SO grateful for herceptin for all you Her gals! What a LIFESAVER!

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    If you have copy of your path report it will be on there.

    Keep in mind I am on the bisphos trial and currently there are no women in my arm that have recurred (stage 1) so the Zometa is a great thing.

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  • orange1
    orange1 Member Posts: 930
    edited December 2009

    In the Austrian Zometa trial (Zometa every 6 months), PR- had very significant inprovement in disease free survival even though only about 11% of the participants in the trial were PR-.  In order to get a statistically significant effect in such a small group of women, the effect of zometa had to be very consistant.

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  • jillyG
    jillyG Member Posts: 401
    edited December 2009

    the lymphovascular invasion issue was never brought up to me at all,   it wasn't until the cancer centre had given me a pamphlet/book on my cancer treatment that I heard of it.  There was a paragraph in there on LVI and they hand wrote 'negative' beside it.  They had made notes for me in a lot of the margins like beside ER it said "+" which I knew, but they still wrote all that stuff in there for reference.  I never had any discussions with them about it. 

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  • lexislove
    lexislove Member Posts: 2,645
    edited December 2009

    Nicole,

    I am not stage 1, but I had no nodes positive. As for the grade 3 thing....most, not all, woman have grade 3 BC.

    Remember that chemo works the BEST on grade 3 (fast dividing cells) breast cancers. You have every reason to be optimistic. You have done agressive treatment and are continuing with the anti hormones + zometa. You are really doing everything that is available to you.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2009

    Thanks ladies for your words of wisdom. This is why I post here instead of talking to my famliy and friends who have all thought I have moved on from this months ago. Lexi love I did not realize chemo and treatment works best on the higher grade... are you ladies doing zometa treatments?

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  • blondie45
    blondie45 Member Posts: 580
    edited December 2009

    lexislove - Thanks for posting about chemo working best on grade 3. I did not know this and am happy to hear it.

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  • meg8000
    meg8000 Member Posts: 108
    edited December 2010

    I too am Stage 1, Grade 3, and I worry about it.  My onc said stage trumps grade, but I still worry about the grade.  Pathology report said 'extensive lymphatic involvement',  but sentinal node was clear.  Oncotype score was 26, so I am doing chemo to give it everything I've got.  I will do rads and then AI. 

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  • lexislove
    lexislove Member Posts: 2,645
    edited December 2009

    Yes. The faster dividing cells (grade3) the more chemo is likely to respond. Chemo works best on grade 3 cancers. Smile

    I am taking Zometa as well. 2x year,every 6 months, 4mg. I have had 3 infusions to date and will be having my 4th January 13th. I experiences some se's at my first infusion, but the rest nothing. I feel very fortunate that I am able to receive Zometa.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2009

    Lexilove - sounds like we have similar treatments for the next 5 years except I am not her2+...

    Jo- thanks for sharing your great success story! There are so many long term bc survivors out there, we are the fortunate group as we have the best cancer to get... isn't it weird to say that?

    Just got back from skiing with the family, how AWESOME and to see my 11 year old snowboarding alongside me... I felt like the old me and it was the BEST and most PRICELESS Christmas gift!

    I hope you ladies had a good one! I had so much fun, I'm thinking of dribing to the mountains with her over the weekend to do it again, about 3 hours from home! I go for my Zometa treatment January 8th

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2009

    Meg- I forgot to welcome you... looks like you are just starting this journey... please lean on these boards and these woman, they are a  wealth of knowledge! If you have any questions you need answered, ask! I have found these discussion boards to help through so much, unfortunately I did not know about them when I was going through the treatments... more after the fact.

    I see my dr tomorrow and you have all reminded me to ask the question about lymphatic involvement...

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  • SandyAust
    SandyAust Member Posts: 393
    edited December 2009

    Hi Nicole,

    Diagnosed July, 2004 1.8cm IDC, Grade 3, 0/2 lymph nodes, no vascular invasion, ER+PR- Her2-.

    I did four rounds of EC and five years of tamoxifen.  Apart from being fat and lopsided I am doing fine after 5 1/2 years.

    Take care,

    Sandy

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  • lexislove
    lexislove Member Posts: 2,645
    edited December 2009

    Nicole, yes very similar.

    Im waiting the results of my tamox metabolizer test. Should be soon I get the results. Im hoping, well praying, that Im an extensive metabolizer. That way I can stay on the Tamox and not switch to an AI so soon. AI's scare me a little....

    Nicole, have you had or are considering an ooph? Im still on the fence about it. I will be doing Lupron for another 1.5 yr....but then what? Ill be 34/35 yrs old at that time, and the likely hood of my period coming back is pretty good.

     I brought it up with my onc at my last appointment and he said that when I finish my lupron I'll be past the "danger zone". Danger meaning 2-3 yrs post treatment and recurrence. He said me being Her2+ and all, if it hasnt come back during that time.......high chance I'll never see it again. So an ooph might be overkill. He doesnt like recommending an ooph for woman under 40 especially.But he said if I really wanted to go that route, he would refer me to a gynecologist.

    Just wondering what your onc has talked to you about or anyother of you ladies who were pre menopausal at diagnosis?!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2009

    Hi Nicole

    Lexi...What is an ooph?Embarassed

    Happy New Year Everyone

    Sheila

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  • lexislove
    lexislove Member Posts: 2,645
    edited December 2009

    Ooph is short for oophercetomy. An oopherectomy is removal of the ovaries.

    Er+ woman who are/were pre menopausal at diganosis and after treatment sometimes will do an ooph to further reduce their levels of estrogen.

    And a Happy and Helathy New Years to you too Sheila!!!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited December 2009

    Thanks Lexi.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Hi ladies,

    Went to my followup appt yesterday... ALL my levels look GREAT! I asked about the lymphatic involvement and they said I did not have that in my pathology but I had it in my blood? So, no to the lymphatic system but yes to vascular, so what is the difference between  lymphatic vascular and vascular?... Are they the same thing?

    Lexi, 

    I have asked about the ooph... interestingly enough my onc tells me I need to talk to my OB, I talked to my OB and much like what your dr said, they want me to wait a bit... You bring up a good question for me, I thought I would be on Lupron for a while, does this treatment stop? Also, AI, is this Tamoxifen or something after Tamoxifen?

    Much like you, I am 37 now... I am reaching my 2 year mark... which I heard was a HUGE milestone as my surgeon says the majority of recurrence will happen prior to the 2 year mark.

    Hi Sheila- Happy New Year's to YOU!

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

    Hi Nicole,

    From what I understand, I will be taking Lupron for 3 yrs. The shot is given every 3 months. I believe, but dont quote me, that studies to date involving pre menopausal woman and Lupron were conducted over a 3 yr time frame. They then followed these woman for 5 yrs afterwards. Im not sure if taking Lupron for 5 yrs or more is beneficial or not. But, for me, Lupron is ONLY being covered for the 3 yrs. Anything after that, its out of my pocket. It's about $1200.00 per shot...(Im in Canada). So $1200.00 a shot given 4X a year ....$4800.00. Yikes.

    An AI is an aromatase inhibitor. AI's are given to post meopausal woman. Im sure youve read about AI's on the boards. They only thing for pre meopausal woman woman who still have their ovaries is Tamoxifen. To take an AI you have to be doing either Lupron or Zoladex OR have an ooph.

    If I could have my way, I would be on Lupron till I hit natural menopause. But financially, Im not sure. Havent talked it over with my husband. I dont want to do an ooph right now......not before 40 at least.

    I have passed my 2yr mark. March will be 2.5 yrs and so far so good. I just dont want to jinx anything. I hate decisions.

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited January 2010

    Hi Nicole,

    Did you ever get the OncotypeDX test?  I think that gives peace of mind.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Thanks for the info Lexi, I will be getting my Zometa infusion on the 12th, I will ask about the Lupron and how long I will be on it...

    Illinois Nancy- They did not do the Oncotype DX test on me as they say they already knew it was an invasive aggressive cancer so there was no benefit to the test... after reading other posts, it appears most people do get the test so I am a bit confused still why they did not do it for me... they say it is for woman who may or may not need chemo... in my case, they knew chemo was a definite!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    nicole it may be because you are PR-, that the oncotype would not be useful...just a guess

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited January 2010

    I'm PR- too and they said that the test is just as accurate for us as the positive ones.  I was as high as you could get in the ER+ score.  I guess they treat all of us differently.

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  • jillyG
    jillyG Member Posts: 401
    edited January 2010

    Sandy, you don't know how much I needed to see your post tonight :)  I had 4 rounds of AC and now Tamox, I cannot wait to be 5 years out (over 1 year out now) and doing great, congrats!. We have a very similiar diagnosis, I am stage 1 grade 3 er+ pr- her- and no lymphovascular invasion.  If you don't mind me asking, did you have a lumpectomy or mastectomy?  Thanks!

    Jill

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  • jillyG
    jillyG Member Posts: 401
    edited January 2010

    Nicole, about the recurrrence in 2 years.....is that because of the grade 3 that they say that a recurrence would most likely happen in the first 2 years?  I thought I read something about that, if you make it a few years when you're grade 3 and don't have a recurrence it's probably 'gone for good' because it's aggressive and would show up sooner than say a grade 1.....anyone have some thoughts on that?  am I imagining reading that? lol. 

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2010

    Jilly- I am not sure why they say 2 years, it is something my surgeon had mentioned to me... I forgot to mention in my post, I have gained 15 lbs since starting Tamoxifen and Lupron... anyone else with this experience... I am at the high end of my weight range now... urrgghhh! trying to keep it in perspective, I know what my New Year's resolution is!

    Do you ladies know if there is a difference between lymphatic involvement and vascular involvement? I am so confused by these new terms, I had never heard of this before you ladies talked about it on these boards. You are a WEALTH of knowledge!

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  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Hi Nicole

    Lymphatic involvement means spread to the lymph nodes, Lymph vascular involvement (LVI) is considedered to be a possible spread to the blood vessels around the tumor.

    I am the same dx except for HER2 positive, their is research that shows that an oomph is just as effective as TAMOX for a premeno women with early stage BC. My Onc did not like tamox with HER2 so started me with an AI when chemo put me into menopause, then ovaries began to wake up so moved me to zoladex shots, showed me where it was equal to tamox in effectiveness for premenopausal women. I don't like any of it and have really suffered SE's from No estrogen but by far the AI's were the hardest on me.

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