Invasive Duct Carcinoma

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kytylove
kytylove Member Posts: 19

Okay so I am 39, was diagnosed with Invasive Ductural Carcinoma...Stage 1, 1.8cm, took out 5 lymph nodes no cancer found in any of them, opted for bilateral masectomy with reconstruction, post op 2 weeks, feel okay....estrogen sensitive, grade 3.  Oncologist said 91% chance of non recurrance with tamoxifin, 95% with chemo and tamoxifen....I am leaning towards no chemo b/c I have a three year old and a 15 year old that I need to be a mother to and 4 basis points is not enough for me to take the chance of all of the other side affects of chemo......if there was a bigger gap I would not hesitate, I understand my dr is concerned with the grade and my age, but the fact that there was no lymph node involvement, I have completely changed my diet and I am getting back into shape, I will be very vigilent about my health....I just need to know if someone has a similar story..>I want to make the best decision for my family and for me.

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  • smethot
    smethot Member Posts: 161
    edited March 2013

    kytylove- its a totally personal decision.  And everyone has a different opinion.  I'm doing chemo and for me, my thought process was...what if one, tiny floater cell got away?  What if i DON'T do chemo and end up with a reoccurance because i didn't do everythng i could do?  I would HATE to do this twice, knowing i could have killed it now.  And i plan to live a long- long time...knock on wood!  Now my story is different than yours...and we're ALL different.  I'm 40 with a 2 cm IDC, 2 nodes, grade 3.  I chose lumpectomy & rads over mast- its more what we do in Canada.  And for me, chemo was a no-brainer- i want to do everything i can do to kill this freaking thing DEAD...no ifs ands or buts...but that's me.  

    Do you know what kind of chemo you'd be on?  With a grade 3, chemo is pretty dang effective if you do have a floater(s)- chemo goes after fast multiplying cells- like grade 3.  I'm on dose dense (every 2 weeks) AC-T...its prety harsh but aside from losing my hair...i do just fine...no worries.  I just had AC #3 yesterday and its all good...but i'm one of the lucky ones.  Some people have a worse time than others but almost ALL OF US will tell you, if you decide to do chemo, it is TOTALLY DOABLE.  Its not like the old days where you vomited for days- actually, with the meds we have now, its pretty rare.  Some people have side effects but they are manageable.  I'm working full time through treatment and a lot of people do...but a lot choose to take time off, too. 

    Its all about you and your decisions and i wish you luck.  Chemo or no is a really tough choice for a lot of people...and remember stats are just that...stats.  And you're betting your life on them.  Make sure you're VERY comfortable with your choice...for instance how would you feel if you did have a reoccurance or a met?  Would you be ok with the fact then that you didn't do chemo?  Did you do the onco type test? What does your medical team say?  If you're in the US, did you get a second (or third) opinion?  How does your family feel- although ultimately, the decision is yours...and its a sucky decision to have to make...just like pretty much everything else about bc.  Again, i wish you luck and a great outcome, whatever you choose.  Shannon

  • kytylove
    kytylove Member Posts: 19
    edited March 2013

    I am doing the onco type test and I am waiting for the results.....I agreed to do the test for my dad more so than for anyone else.  I was totally convinced that I was going to do chemo from day 1 of this and that is one of the reasons I decided to do a bilateral masectomy to kill this sucker dead, I am just not convinced of chemo yet.....I have a wonderful team, my surgeon told me it would be a tough choice no matter what I decided to do, my plastic surgeon (who I personally think is the best in the world) is supportive of either....he said not to be afraid of chemo but that he understood my concerns....I was sitting next to a woman today who had stage 2a, did a bilateral masectomy, radiation, chemo, was braca2(I am unsure of spelling positive), her2 positive, no lymph node involvement and still had recurrance two years later....so I don't think there is a sure fire fix no matter what decision you make.  My oncologist is making her decision because of my grade 3 and my age and I know this and I respect it but I am not sure yet if that is the best course for me....Thank you so much for your insight and sharing your story though, I do appreciate it.

  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Hi there.  Just got my onco score.  It is 25. I am stage 2, grade 3, 0 nodes, 2.2 cm tumor removed via lumpectomy.  They are strongly pushing chemo.  My risk of distant recurrence with tamoxifen, rads and no chemo is 16%, which the chemo supposedly would reduce to 10%.  I am having a hard time believing in chemo for an improved 6% chance. They say they are very aggressive these days with young women with cancer (I am 38).  I just don't know what to do.  Hate the idea of poisoning my body but certainly dont want to make the wrong choice.

    Anyone have any advice?

    thanks

    curly

  • maryah930
    maryah930 Member Posts: 322
    edited March 2013

    No advice. just be comfortable with your choice.  Smile  I was 55 when diagnosed and I had an Onco score of 21, stage 2a, grade 3, 0 nodes.  I chose chemo because if one of those suckers got away and hid, I wanted to know I threw everything at it to kill it, even of it only added a low % reduction risk of recurrence.  No one can be 100% positive of no recurrence, but poisoning my body for 4 chemo rounds was worth my peace of mind.  I had a BMX, no rads, 4 rounds of TC, and just started on Femera.  That said, that is me and my choice.  When making the unfortunate choices we are given with this disease, only you can know which ones are best for you. 

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    kytylove... if you're not sure about chemotherapy, then it wouldn't hurt to get a second opinion - and a third, if need be - to help you clarify whether- or not it's really going to be the right decision for you.  With your young age and high grade, I can understand why your doctor would recommend it.  But the numbers you've been given for each choice are very good.  Unfortunately, even with an additional opinion or two, it's probably going to come down to a personal decision.

    One thing I will say is, once you've made your choice, then try not to look back or second-guess yourself.  As you pointed out, quality-of-life may, well, be worth the 4% difference for you given your prognosis.

  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Thank you Maryah.  I decided to go ahead with the chemo after all.  If it came back, I wouldn't want to wonder if it was because I didn't do the chemo to begin with.  I start in a couple of weeks.  Working on the hospital to allow me to do the cold caps.  Wish me luck.  What a tough journey, and I haven't even started the hard part.

    I hope you are feeling well.

    curly

  • kytylove
    kytylove Member Posts: 19
    edited July 2013

    My oncotype score came back at 43 so I am finishing up my last chemo in two weeks and then having a final reconstructive surgery. Is there anyone with similar story that can offer some advice about next steps and/ or prognosis?

  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    Hi kytylove,



    I didnt have choices to make like you did because I had a really large tumor by the time we found it (hiding in dense breast tissue) so I had no options but to do everything possible- and then pray - but I just wanted to say that you are brave for doing the chemo. I hope you are doing okay with it.



    I wish you the very best of luck!

  • kytylove
    kytylove Member Posts: 19
    edited July 2013

    I didn't see this until today...sorry..>I am doing okay, hydration has been key for me, I was not able to save my hair but I have one chemo treatment left and then my final reconstruction surgery then hopefully this will all be behind me. My only thing that I am worried about is my oncotype score which was a 43...but chemo was supposed to help that....thank you for the kind words always helps

  • kytylove
    kytylove Member Posts: 19
    edited March 2015

    I hope you are still checking this, life moved very quickly for me after I finished chemo, yes I decided to move forward with it, and it was totally doable especially after I figured out, saline was the key!!   Thank you so much for your guidance and advice, my biggest thing was also taking the adriomyacin, which I opted not to do after a second and third opinion, and went with taxotere and cytoxen instead.

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