chemo vs radiation HELP?!

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B123
B123 Member Posts: 730

My question is this, if you are ER/PR+ above 90% and HER 2 Neg, Bracha Neg, DCIS, IDC all in one breast.  Masectomy bilateral done and they found the closest sentinel node with micromet.  Possibly because of the biopsy infecting it.  Studies and reports all say that Chemo is not a great benefit to treating ER+ because it is estrogen driven only.  If that is the case, then why not radiate the area following a masectomy and take the Tamoxofin along with shots to lower estrogen levels.  Cancer cells feed on estrogen, so if you are taking the measures to stop the estrogen and block it any as well, why put the poisons of chemo in your body?  Any body have been there to choose this option??  I do not want to do chemo and will avoid it at all costs.  If I were ER- then I know I really would not have much of a choice but with the ER+ I know there are choices in this matter.  Please advise any help ladies..  THANK YOU!

Comments

  • judyfams
    judyfams Member Posts: 148
    edited September 2011

    The reasoning behind the recommendation of chemo is based on the fact that even if one cancer cell got into the bloodstream it could turn up years later as a metastasis in the bones, brain, lungs or liver - the places where breast cancer metastasizes.

    Radiation will not erradicate that one cancer cell that is hiding elsewhere in the body where it can thrive and grow.  Radiation will only take care of any existing cells in that node - not cancer cells in other parts of the body.

    Also ER+ cancer cells grow in the presence of estrogen which is produced in the ovaries, adrenal glands and fat cells.  Tamoxifen acts on the receptors of the cancer cells so that the estrogen cannot get into those cells so they can multiply.

    Chemo tries to make sure there aren't any of those cells left in the body!  So chemo destroys those cells and Tamoxifen is insurance that if there is an ER+ cell elsewhere in the body it will not receive estrogen to allow it to multiply in the body.

    I had a lumpectomy, chemo (also due to one micromet in one node) and radiation.  My onco score was 20 - in the intermediate range and my onco said the choice was mine, my BS said no - and I went ahead and did the chemo because I needed peace of mind -that I did EVERYTHING I possibly could to erradiate the cancer. That was last year and I am confident that I made the right decision FOR ME.

    Judy

  • Beanpole
    Beanpole Member Posts: 32
    edited September 2011

    My ONC basically told me she would not recommend chemo even if she found it in a couple nodes because mine is also 90% ER positive and low grade. She said studies show chemo really does not benefit those types of cancer. She said radiation and hormone therapy give me a much better outcome.

  • raincitygirl
    raincitygirl Member Posts: 3,143
    edited September 2011

    B123 - Check out NCCN guidelines - it validates what Beanpole is saying above even with a larger tumor or grade.  You have to pretend you are a doctor to sign in but we all do it.  I think the page you want is 16.

    I did lumpectomy, partial chemo  (about half) and then read NCCN and stopped, followed by radiation and arimidex.  It was actually my rad onc who suggested I look at guidelines more closely, noting that I had a luminal A, low Ki67 tumor and that he really didn't believe chemo was benefitting me as much as it was damaging me.  You will likely get that info, the Ki67, from your oncotype.  My score was 23.

    Best wishes -

    D

  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2011

    B123, the ER status does not make as much difference in the choice of whether or not to have chemo as the grade. The higher the grade the faster the cells are dividing (and the more aggressive the cancer is) and chemo goes after those cells that are dividing quickly. For a lower-grade cancer the tamox or the AIs are generally excellent at preventing a recurrence.

    Since you only have one micromet, your onc will probably order an oncotype test to determine how much you would benefit from chemo.

    Best of luck.

    Leah

  • Joan811
    Joan811 Member Posts: 2,672
    edited September 2011

    Thanks for opening this discussion.  So many of us need to make this choice with the oncotype tests being done more often for Stage 1.
    I am in the decision making dilemma.  I had a lumpectomy 8/30 with clear margins and 0/2 nodes.  My tumor was grade 2, ER PR + and HER2 - with oncotype score 13.  My oncologist uses a lower threshold for defining "low scores" which puts me at the low edge of the middle group.  I assume this reflects the ongoing Tailor study which uses these numbers with hopes to refine the outcomes for the middle group.
    So, my body says do the radiation and hormone therapy.  My mind says do the chemo to better my chances against a recurrence which would make me Stage 4.
    It is disrupting my sense of well-being and forcing me to face the seriousness of BC.
    Anyone else have this decision?
    I was asked to give my decision 3 days ago.

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2011

    Joan, I looked at your bio.  Are you post-menopause?  At 62, with your stats (and I'm not a doctor - just a heavy researcher) I would not have gone anywhere near chemo.  If you haven't already, see another MO for a 2nd opinion.  MOs do suggest chemo as ROs will suggest RADS.  These doctors believe their treatments work (which is good), but sometimes they are looking for you to have a next to nothing cancer to send you on your way.

    An Oncotype of 13 is LOW and means that chemo probably won't even do anything for your cancer that truly has been removed.  Chemo is an insurance policy for many of us for many reasons.  I feel like I've wrote this before to you, but it may have been to someone else in your situation.

    You are still stuck with RADS and either Tomox or Arimidex and since you are ER+ the hormone therapy will keep any new crap away.  Good luck in whatever decision you make.  These are not easy decisions for some of us.

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011
    Rocky,
    Thanks for finding my post here...yes, you did respond on the August 2011 thread.
    I hope you are doing OK - you had your first chemo...I hope you are recovering and feeling better this week.  You are right about my age (PM 62) and that chemo is probably not significantly beneficial for me.  I let myself get so confused over it that I couldn't function for 2 days.  My body says "no" but my mind says "shouldn't I do everything to avoid recurrence?"
    My onco uses the Tailor scale which puts me as low end intermediate range for my score.  That really threw me. Most of what I read on the web indicates that ladies with scores up to 20 or even higher are bypassing chemo.  I called for my test result so that I can see the variables just to be sure I am comfortable with my decision. 
    Sometimes I have this weird feeling that if I didn't have to give up a breast and if I didn't have chemo, then I really haven't experienced breast cancer...but I have -- I've had so much stress and loss of control...and I still have to do rads and Arimidex. 
    I do feel blessed -  my surgical  recovery was easy. It breaks my heart to read what women are going through. I know that if it recurs I could face more surgery. If I were younger or had young children, I would do chemo. My last kid is in college, so they are mostly independent now (6 kids).
    For now, I wish you well and that your SEs are bearable and few......you have really helped me move closer to the path that works for me.
    Thanks.
    Joan
  • B123
    B123 Member Posts: 730
    edited October 2011

    Thank you ladies for all your posts, it helps so much! I am now on Tamoxifen and the Lupron shots will begin in a couple of months, I will also start Rads in a few weeks.  I have gone to 3 different Oncologists to make sure this was the right decision.  The first one was very old schooled and did not believe in the Oncotype scoreing and told me that I would need a full 8 rounds of Chemo and the other 2 from Dana Farber told me, that my score is very low, 13 and it would be over medicating.  They can do 4 rounds for over med (insurance) but that doing what I am doing is very effective and Chemo is not necessary.  I go to my Plastic Surgeon every week for TE injections and each week she lectures me on why this is the wrong decsion and that the first oncologist (who she works with) is correct and that their team strongly suggests I do it.  I leave her each week in tears.  I dont understand, how does she know more then the Oncologists? I am 40 years old and multi focal tumors (totalling 3cm together) but comedeo (slow growing). I had 2 1/2 micromets in the lymph with NO vascular invasion.  I am so worried that I made the wrong decision? Is the Oncotype very reliable??

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    B123 - I had an undiscovered Grade 2 cancer in my right breast while I had chemo for the nasty Grade 3 HER2+ve one in my left breast. The grade 2 one did not go away and looks the same size as it did on my mammo the year before (it wasn't reported). The chemo may have stopped it growing and spreading, but as someone above said, lower grade cancers do not respond to chemo as well as the higher grade ones do. Who knows, the chemo might have lowered it's grade but it didn't kill it. My onc said that was possible. Both of my cancers were very highly ER+ve.

    Sue

  • B123
    B123 Member Posts: 730
    edited October 2011

    Susieq58, sorry to hear that but glad it seems under control.  I had a bilateral mastectomy and they found that the left breast was clear completley.  I also noticed that you are HER2+, does that make any difference?  I am negative.  How many chemo rounds did you have?  Will they just watch and monitor it? 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    I had the second one removed via another lumpectomy. The chemo was for the HER2 one but it was interesting to see when they finally found the second one that it hadn't been killed off by the chemo - it was a totally different pathology.

    It's a difficult decision to make regarding chemo, I know, in my case I had no choice for the first one because of the HER2. The second one was node negative too. The thing is, we can never know. One sweet lady on here had DCIS with a microinvasion, clear nodes and no chemo as that is not recommended for DCIS - 2 years later she had mets.

    I've always thought that any nodal involvement meant chemo, but these days that opinion is changing especially with the oncotype scoring. The thing is, it did spread to your nodes, so it is capable of spreading further even being grade 2.

    I hope you can make the right decision.

    Sue

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011
    I reopened this thread lasts week because I had to make the chemo choice (oncotype score 13)...a week later, I still have NO clue what to do.  I have the second best possible diagnosis (after DCIS) and clear margins and no nodes.  But, it is the unseen that concerns me.  I have to decide this week so I can move forward with either chemo or rads.  I hear both sides loud and clear.  Maybe I'll flip a coin tomorrow.
    I am beginning to question the constant comments of "you'll be fine"  or "you will be cured"...if that is true, then why is chemo a choice?
    Good luck everyone, and hugs and prayers for your toughest decision.
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Joan - you should still do rads even if you decide against chemo especially if you had a lumpectomy. I had rads both sides. The chemo choice is your hardest one. Your cancer was small and you had clear nodes, so I don't understand why anyone would suggest chemo, my onc told me that I would not have had to have chemo if I hadn't been HER2+ve. Then again the oncotype test is not available here. This test is really changing things for everyone. I only hope it's proven to be accurate as time goes by.

    Sue

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited October 2011

    Ok, I'll bite, since going for a second opinion seems to be something that you are not willing to do. And I have no idea why you don't want to, but here goes. And don't forget I'm not a doctor. Everybody here has pretty much told you the same thing.

    I think your doctor is being incredibly conservative on the numbers.  Hey, if you were pre-menopausal, and had those numbers, then, MAYBE. If you have a very bad family history of cancer. MAYBE. If you had an incredibly HIGH Ki67, MAYBE, but I would be more likely to ask that the pathology be repeated.

    I think that your doctor is covering his own butt, so that is by some crazy chance you should get a recurrence, he will have recommended the most aggressive treatment, but I am sure that he is praying that you refuse it.

    AGGRESSIVE IS NOT ALWAYS BETTER. We are told that we should be proactive, that we should do everything to fight this disease, but for most ER+ Pr+ stage 1 women, especially those of us over 60, with good margins and no nodes, who do not have an aggressive cancer, chemo is overkill. And that can be literal. Even the gentler chemos can cause all kinds of damage.

    Can I say this any more strongly?

    WILL YOU PLEASE CONSULT WITH ANOTHER ONCOLOGIST if you still have doubts?.

     You are going to be in pink ribbon races for years to come.

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2011

    Joan, I have to agree with ICanDoThis.  You will be doing RADS and Arimidex (maybe even 5-day brachy rads) and those two treatments, based on science, are the "standard of care" for where you stand.  We are all going to be concerned about a recurrence from this day forward.  I sucked it up to do the chemo based on my age, nodes and original tumor location (way too close to the axillary with my cancer possibly getting a free ride to somewhere else in my body).

    Listen to what you said about chemo, My body says "no" but my mind says "shouldn't I do everything to avoid recurrence?" Sometimes our bodies know things before our minds do.  Unfortunately, our minds can get in the way of decisions all too often.  Avoid the recurrence by eating right, exercising, being careful of the plastics, estrogen related products and all the other things they say we should do.  This chemo gig is not easy on the body.  In fact, at 47, I'm doing this now so I WON'T have to revisit this in my 60's.

    BTW, like I mentioned before, the MO you saw is talking overkill chemo with you.  8 treatments WTF??  My stats, etc. only brought me to TCx4... chemo light if you will.  Why the hell would you be more chemoed up having with better pathology results then myself (I'm not a doctor, just a scientist).  Think about it.  Get the 2nd opinion, you'll be glad you did.  You're in NY.  Many, many impressive MOs there.  Good luck and let us know what you finally decide.  We will all be around here for sometime now... good or bad.

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011

    Rocky, Icando and Susieq,
    Thanks for weighing in.
    I made an appt. for 2nd opinion today.  I also went to my friend/therapist and we talked it through and we agreed that I have to do what makes sense to me, and that is to move to rads.
    So, I am going to call my MO and when I hear from her, I will tell her I am leaning toward rads and want to make the appointment with the RO; and that I am getting a 2nd opinion but don't want to keep putting the treatment dates off.  I think I am moving toward that sensible decision.  None of us has a guarantee here, and we all know we have to deal with whatever comes in the future. 
    for now, I want to go with the best choice for me.
    Yes, I agree - CMF x 8 sounds like a lot.
    My onco has a clinical trial going on, and I have signed off on being part of any research, which I believe in.  I think she is trying to be neutral with me, and not aggressive.  No matter what I choose, I'll be part of her trial, because she needs ladies who are intermediate who choose chemo and those who do not. So I think she is trying not to bias my decision.  I hope I am right.

    You ladies have such wisdom and I appreciate your encouragement. 
    Hugs and prayers to all this week.

    Joan

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2011

    Joan, was thinking of you yesterday.  I'm so glad you've got he 2nd opinion lined up.  This should help a lot in getting the ball rolling for you.  You are very smart taking your time because when all as said and done, YOU will feel you did the right thing and not have what I call "boob remorse."

    My first dx = 6/9, surgery = 8/10 and chemo = 9/19.  I think these were big spreads compared to others around here, but no regrets now.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited October 2011

    Thank you for letting us know that your doctor wants you to participate in a clinical trial - it makes so much more sense.if she is trying to do something along those lines. Many of our reactions are based on the early results from some of these clinical trials - if you are willing to participate, then, thank you. I don't think I would do that.

    Good luck

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011

    Icando - Sue
    I signed a general release to have my medical records made available for research.  I believe in that.  And the clinical trial is "random" selection; therefore I do not have to do anything except what I would have done anyway. 
    Today I had a highly recommended oncologist call me back and tell me that she would not prescribe chemo for me; and that I should take hormone therapy.  No guarantees either way, chemo or no; but she afirmed no significant benefit from chemo.
    So I am ready to move forward with the rads and take it from there. 
    Life feels kind of faster-paced than I want it ... I still need time to digest all that has happened in the past few months.  I feel grateful so far...but when I hear of how many ladies are dealing with more difficult surgeries and treatments, I don't rest easily. 
    I hope that after treatment I can give back to someone who needs information or reassurance.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Joan - I'm glad you have come to a decision, one that I would have made if I had been in your shoes. Good luck with the rads - the worst part is going back and back evey day :)

    Sue

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011
    Thanks, Sue...I think I am feeling the peace I've been seeking. It's a good thing I like to drive.....already do  40+ miles RT commute, so what's another 15-20 added on for M-F?
    I think I'll live for week ends....speaking of which, it's here Smile 
    Happy week end to all.
  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011

    Today I told my MO's office that I am skipping chemo and moving to rads.  The NP asked me where I would be doing rads.  I thought I'd do them there, as they promote the "team" approach...NOT...I felt like I was dropped off by the MO and on my own now to negotiate the rads. They are putting in a refferal for the RO office to call me.  I may look closer to my job.... I hope I choose the right place.  Right now, I feel strangely on my own because I don't have a doctor....did anyone else feel like that when they were handed off to the next specialist?

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2011

    Joan, I started with my BS since I knew him from a past life (so to speak) and trusted him.  As for my RO, my best friend in Washington was trying to convince me to go to L.A. or come back east for the best of the best.  I thought she was being extreme, but I did listen.

    I work at a library and we have a magazine that lists the best doctors in our state and why they have been chosen.  I picked my RO who was a key figure in the creation of brachy therapy.  Never thought I'd be anywhere near chemo.  She was as excellent as they come and helped with some of my decisions.  Even convinced me it was time to tell my younger daughter back then.  Anyway, my BS agreed that she was good so there was the beginning of my "team."  I asked both my RO, BS and OB/GYN for MO recommendations.  I met with two and picked the one who was closest to me and had the nice, healthy looking nurses.  I'm not a fan of unhealthy medical personal ;-).

    Later on when I met with my RO again to tell her it looked like chemo was coming my way and that we will meet again in a few months, I mentioned to her that sometimes I felt strange for creating my own "team" and that I wasn't at any of the Canter Centers we have in my state.  She assured me that I was getting better care doing it the way I was and that the "centers" don't always have the best of the best.  My three people communicate when needed, but overall I am way happy with how this turned out and I feel like they are all working for me as opposed to following some protocol and doing their own thing.

    Just my 2 cents for you.  P.S.  Glad you got the 2nd opinion and happy you don't have to do chemo.  RADS will take care of local recurrence and the hormone therapy is probably what will keep it from coming back.  Good luck.  Let us know what happens.

  • Joan811
    Joan811 Member Posts: 2,672
    edited October 2011

    Rocky, thanks for the encouragement.  I see that it has always been my job to find the best people - I just assumed I'd find them all under one roof.  I will start looking around tomorrow.  I thought I wouldn't be nervous about rads but turns out that I am.  I need as much control or input as I can possibly get.   I hope you are doing well and getting through.

    Have a good night!

  • jd613
    jd613 Member Posts: 10
    edited October 2011

    Joan --

    Sometimes I have this weird feeling that if I didn't have to give up a breast and if I didn't have chemo, then I really haven't experienced breast cancer...but I have -- I've had so much stress and loss of control...and I still have to do rads and Arimidex.

    I had almost these exact thoughts, especially when I "compared" myself to a close friend who was diagnosed even younger than me. But, recently we attended a breast cancer awareness program and met three other women who were diagnosed at about the same age as me (40 at first mammo). All three, plus my friend, told me in no uncertain terms that it wasn't "cancer lite," it was cancer, and just because I didn't have to do chemo doesn't make it any less a cancer.

    Yes, I got "lucky" b/c it was found in stage 1, and I had all the best possible results in my tests, but I still had to have surgery, and I still had to have rads. I advocated for myself and followed my RO's suggestion for Mammosite, even though my BS said it wasn't "standard of care" for someone as young as me.  And now that I've started my Tamoxifen, it turns out that I'm one of the not-so-lucky ones who ended up with ovarian cysts, but then again, my ovaries went into overdrive after I started Tamoxifen this summer, so I just started Lupron too. So, even without chemo, I've gone through my fair share.

    All of this is just to say, don't feel like you had to suffer through more than you did in order to feel like you really experienced BC. You did, I did, we all did.

    I hope you were able to put together a good medical team and maybe have already started your rads. It's rare to find everything under a single roof unless you are in a closed HMO like mine (Kaiser) or seeing your doctors at a major cancer center. I'm in a big city, and my docs are actually spread out over 3 locations, but as they work together all the time, they are amazing at staying in touch with each other, and they all have access to all of my info. I wish for you a similarly cohesive group.

    sorry for rambling -- feeling the insomnia tonight,

    Joanne 

  • Joan811
    Joan811 Member Posts: 2,672
    edited November 2011

    Hi Joann,
    thanks for validating my thinking - and for telling me what I know - BC is BC and we are all dealing with the trauma, uncertainty, treatments and emotional ups and downs.  That, on top of real life (work, family, normal health issues, finances, etc. etc.)
    Women are truly forcing themselves to be "super women" through this - determined to keep up 'normal' life as much as possible.  But, isn't that all we really want?
    After my dx, I realized that I wanted nothing more out of life than to enjoy the things I always have.  That made it so simple....and do it the best that I can.

    Sorry to hear that you have been struggling with the Tamox and the cysts.  Wow.  Do you have an update yet?  Did you get the T/V ultrasound?  I had one years ago but found it only invasive to my privacy.  (I read your other post)
    I did go to multiple M.O.s and loved the 2nd opinion doc.  I thought I'd switch for rads too, but I decided to stay with Sloan for rads.  I am not sure which M.O. I will use - I am not scheduled back for about 2-3 months. 
    I had my planning session today and I made it through with a lot of help from my meds.  I am on my way to my treatment plan, even though it's 11 weeks since surgery and almost 3 months from dx. 
    Otherwise, life is "normal" and good for me.  I chose traditional 25 tx of rads instead of joining a clinical trial for 10 sessions of partial breast radiation. How was the mammosite therapy?  I do not know much about it.
    Best wishes to you, and I hope you are finding a way to get through the Tamox.
    Joan

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