OK Girls....need some opinions please

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Sheypres
Sheypres Member Posts: 35
edited June 2014 in Stage I Breast Cancer

So here are the details-No family history of BC. I just turned 40 and was diagnosed on July 30 from a fine needle biopsy. Lumpectomy on Aug 2nd.  Came back as 2.5 cm, ER+ 25%/PR+25%, HER2-, Ki67 90%, 0/4 nodes. It is IDC-Medullary and grade 3, rare and aggressive.  The tumor was node negative but it had crossed over a blood vessel so we are hoping it did not spread that way. I just had a PET scan and we are waiting on the results for that and the BRCA test and Oncotype test. I met with the oncologist a couple of weeks ago and he wanted to wait on these tests before we proceed. He was on the fence about chemo.  I was a bit concerned about the size, grade and Ki67 %.  I am meeting with him this week for all the results and I really want to be as aggressive as possible. I have a 2 1/2 yo little girl and an 8 month baby girl.  So I need opinions please..... I have been researching like crazy but I have learned more from all of you.  What do you think?  Chemo/Rads/Tamoxifin?  Maybe even Mastectomy? THANKS in advance!!!!

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  • DebRox
    DebRox Member Posts: 437
    edited August 2011

    Sorry you are joining this club that no one wants to join!  You will find a lot of wonderful women, valuable information and support here.

    With your stats, I know what my Onc would say, chemo.  She said the same thing to me before the oncotype test came back.  She did not care what it revealed, I had too many strikes against me.  She stated I am young and healthy and would tolerate chemo well. 

    My stats were 2.4 cm tumor, grade 3, ki-67 50%, no positive nodes.  I was premenopausal, just turned 46.  I did have lymphovascular invasion - I believe the same as crossing over a blood vessel.

    I started chemo the day my oncotype results came in - they were ordered by the first Onc I consulted, I am a score of 21 which we were suprised at the somewhat low score when my ki-67 was so high. 

    Well I finished 4 cycles of TC x 4 at the end of July.  It wasnt a walk in the park, but do able.  I figure I have a long life left to live and while I have the chance, throw everything I can at this disease.  I do not want to revisit this again!

    Wishing you all the best in your decisions.  And you have EVERYTHING to fight this disease and live for, your young children!

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  • bcisnofun
    bcisnofun Member Posts: 488
    edited August 2011

    Hi - I wish you luck in and peace with your decisions.  I agonized over mine related to the chemo.  I didn't at all agonize over doing a bilateral mastectomy, but that's just me and a lot of people feel differently.  I had IDC grade 1 in one breast and after an MRI found suspicious spots in the other.  With that we knew we wanted bilateral.  Spots in other breast turned out to be DCIS.  Chemo on the other hand was tough.  I"m 45 with a 7 year old son.  I was stage 1, clear nodes.  1.5 cm tumor.  oncotype score of 12, which most docs say is no chemo.  My doc however who is a brain cancer survivor himself asked me how I felt about the translation of the oncotype which of a score of 12 is a 92% change of no distant metastasis.  92% sounded good to me but 8% sounded scary.  He said that it's not a huge benefit to doing chemo - maybe 2% improved odds.  And there are risks to chemo that in many people outweigh any benefit.  But I'm young and otherwise healthy and he felt the benefits outweighed the risks.  In the end we decided to throw the kitchen sink at what I knew I had and not make decisions based on possible risks of treatment.  I did 4 AC treatments and I agree with DebRox that it wasn't fun but it was do-able.  For me, I worked through the whole thing and only a couple of days left a little early because I was so tired or not feeling well.  During my 2nd treatment mainly, I felt like I wished I hadn't taken this drastic course.  Of course hair gone, having period, feeling not great will do that to you.  But now that I just finished it, I'm glad I did it.  I never want to get to stage 4 and say...would I still be here if I had done chemo.  But that's just me.  I wouldn't want to wish anyone to have to make this decision - it's very hard and very personal.  I wish you luck. 

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  • mdg
    mdg Member Posts: 3,571
    edited August 2011

    I am sorry you are joining us too but glad you found this site.  You can see my stats below...I also had angiolymphatic invasion (vessel) but clear nodes.  My son just turned 5 and I am 45 years old.  My oncotype score was 17.  I decided to do a bilateral mastecomy to be aggressive.  I want to do everything I can to give myself the best odds.  I got two med onc opinions on chemo - one said yes and one said no. I decided to do chemo because I knew I would always wonder if it would have been better to do it.  I know I have done everything I can to be aggressive to get rid of this for good.  I used Cold Caps to keep my hair during chemo - that was my compromise.  I am happy with my decisions and just completed reconstruction surgery in June.  I have a minor surgery left in the coming months.  In the end, you have to make the right decision for YOU personally.  There is no right answer...just the right answer for you.  Good luck!

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

    I was similiar to you and borderline for chemo and ended up not doing it. However, you have a few extra strikes against you that I didn't have ...tumor is over 2cm... the vascular invasion...and you aren't HIGHLY ER+... (I was very high ER+ so onc thought Tamoxifen would be more effective than chemo).  If I woud have had your stats I know my onc would have recommended chemo.  Like Maria, I was going to use the cold caps if I would have needed chemo...not necessarily for the vanity part of it... I just thought when I was done with chemo... I wanted to be done...not have a constant reminder as my bald head grew out.  Just know there are some options. :)

    You said you want to be aggressive so you will probably sleep better if you take that route. :) 

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  • Miller1353
    Miller1353 Member Posts: 84
    edited August 2011

    I would imagine you will be a candidate for chemo. My oncologist told me to throw everything I could at my tumor. I was IDC, 1.4 cm, er-/pr+, ki-67 76%, node negative. She laughed when I asked about Oncotype. She said that she didn't care what number it came back (and she said it would be skyhigh), we would go with chemo.

    I did find out I was BRCA1+, with no family history. I ultimately had a BMX, hysterectomy, chemo, and never looked back. I'm raising two wonderful, brillant teenagers. I am committed to doing EVERYTHING I can to beat this back.  Chemo wasn't a walk in the park, but just like most things, it's doable.

    You are in the scariest part right now. I felt much calmer and assured once my treatment plan was in place. I felt like I was making positive steps toward a healthier future during treatment. Hang in there. No matter the treatment plan, you can do it!

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited August 2011

    Sheypres - I would definitely get at least 2 more opinons, for a total of 3, from oncologists before making your decision.  Don't know where you are going for treatments, but try and have one opinon from a designated cancer center.  

    If it were me, I would lean towards chemo because of the the Ki-67 and the Grade of your tumor means aggressive, and you are young with kids.  Chemo sucks, no doubt about it, but ... and I hate this word ... it is doable.  There are both conventional medications along with vitamins, supplements, acupuncture, yoga, exercise, etc...  which can help you with the SEs.

    It is your decision, do your homework, get medical opinions, and go with your gut.  You are the best person to decide what is best for your and your family.  We are all here to support you.

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  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited August 2011

    Sherypres - Just wanted to add, since you asked about a Mastectomy.  It is your decision, don't feel pressured to do something you are not comfortable with.  

    For me it was an easy one to make, because I am about 6 years older than you, and in all honestly, mine were dense saggy things.  Even with 6 month clinical checks no one ever felt the two tumors in my left breast, even after they showed up in the mammogram .  I also have a family history of cancer (BRCA neg though), so it was a very easy decision for me to go for a Bi-lateral mastectomy, which my DH fully supported.  The reconstruction has been OK, I am only 4 months out from my exchange and a little lopsided.  My non-cancer side is higher.  But can't tell if I wear a bra, or when I wear looser fitting clothes without a bra.  It is fun for me to finally be able to wear strappy dresses with no bra.  I have no regrets about my decision and for me, it is one less thing to worry about.  I know I can still have a recurrance, but hope that with so little breast tissue, if any left, the odds are in my favor.

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