Anybody decide not to do chemo and radiation

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aMtn4me
aMtn4me Member Posts: 34
edited September 2014 in IDC (Invasive Ductal Carcinoma)

I was hesitant about committing myself to radiation therapy after speaking to my BS nurse and she informed me that if my BS had known that he would have done MX. 

I am so lost and I don't know how you ladies handle all this. I am thankful for this site and have been learning so much from others posts! I wish I could make this go away for us all. 

I can't help but wonder though, if BS took it all out and got clean margins and nodes are neg why do the radiation and possibly chemo?

See the BS on Mon for followup to lumpectomy.

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    I can't help but wonder though, if BS took it all out and got clean
    margins and nodes are neg why do the radiation and possibly chemo?

    Because they're not 100% sure and for some of us, those cancer cells are still there.

    I've been diagnosed twice--the first time I had radiation (and surgery) and stayed cancer free for 13 years.  Clean margins, no node involvement, no mets.  

    The second time, I can't have rads since I've already had them to the same area, but I've had chemo twice, had a mastectomy.  Now, the nodes have lit up from time to time and I have mets to my bones.  

    All this started from clean margins and negative nodes. 

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  • aMtn4me
    aMtn4me Member Posts: 34
    edited September 2014

    I guess I just needed to hear it from someone who has been there. I am ok one min then I start with the denial again. Thank you for your reply alexgram. I see everyones dxs and txs and wonder how the heck can I possibly do this? 

    I also think that this is just the tip of the iceberg and if I do have rads now, if it comes back then that won't be an option. It's a whole bunch of crappy decisions either way you go.

    I don't mean to whine, I understand I've got it good compared to most. I just don't have anybody who can understand what I'm talking about . Thanks for sharing your very personal experience with me.   Debbie

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    Dear debbie,

    I know what you mean about keeping something in reserve.  Perhaps I would have been better off to have had chemo and not radiation (the first time).  But like most of us, we're more afraid of chemo than radiation, so I didn't do chemo.  Now that I've already been on and off chemo a couple of times, I'm not so afraid of chemo.  In fact, I'm not afraid of chemo, rads or surgery, having had a bunch of all of it.  Just 'fix me up, doc'. 

    I don't think there's a right answer for sure.  I wouldn't stress out too much trying to find the absolutely right answer for you.  You'll never know.  If you trust your BS, I'd follow his/her advice.  I suppose since you've already had surgery, it should be your oncologist's opinion that's most relevant now. 

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  • aMtn4me
    aMtn4me Member Posts: 34
    edited September 2014

    I am going to at least discuss it with the MO and then make a decision. I had an "ON-Q" pain pump placed after the LX and while it was great for the pain in my breast I'm now dealing with burning and redness and peeling skin above my breast and up on my neck.

    Got to thinking about some dental work I had and after multiple novacaine injections a few days later same kind of response with my skin.

    So I'm thinking radiation probably won't be any kinder!

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited September 2014

    Google the 20-year study of mastectomy, lumpectomy, and lumpectomy with radiation in the New England Journal of Medicine.  It shows recurrence in the same breast for those with lumpectomy alone is 39.2%.  Add radiation and it drops to14.3%.   

    Strangely enough, sensitive skin does not appear to be a factor in determing who will have a rough go of it with radiation. I, for instance, have very pale and wimpy Irish skin, yet, as my RO predicted, I and had a  very ho-hum time with rads.  That doesn't mean I didn't hate it, dread it, and resent it (and whine and complain all through it), but, despite my assumption that my princess-and-the-pea skin would sizzle, my progress was perfectly normal. 

    You will meet with a radiation oncologist, who can explain why rads is important (or not) in your particular case, and will also address skin issues for you in particular.  Do absolutely thoroughly grill your BS on Monday, and also the radiation oncologist and medical oncolgist you'll be meeting soon.  They know none of us would choose to do any of their treatment options, and are well prepared with statistics and studies and handholding to help us understand the why's and what's of their recommendations.


     

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  • PRB1956
    PRB1956 Member Posts: 444
    edited September 2014

    It is such a personal decision, and everyone has to make their own choice.  I find it crazy that the doctor's leave most of the heavy lifting to us... ie.. what path to choose for our individual treatment.  Lumpectomy with rads or mastectomy were my choices.  I wasn't sure what I wanted, but I knew I wanted the cancer removed...so I opted for what seemed to be the 'easiest' choice... lumpectomy with rads (2 different surgeons, 2 different RO's, and my MO recommended the lx with rads).

    I did a lot of research after my lumpectomy.  I have always been afraid of radiation, so when push came to shove, I really didn't want to do the 33 rad treatments...and I really didn't want a second surgery for the mastectomy.  Trying to build my case for no rads, I found a study that said for women over 55, the women who didn't have rads did just as well as those that did.  When I showed it to my RO, he said the study was very small and you can't go by one study...that in the past when they did just the lumpectomy without rads, the cancer returned.

    I suppose a lot of all this has to do with how much you trust your RO.  While I liked mine, I found him selectively telling me what he thought I wanted to hear.  He poo-poo'd my notion that there were side effects from radiation...yet it doesn't take a rocket scientist to find many women who have had some serious problems from radiation.  I also have mild LE..and I was concerned about scar tissue.  Again, he said that wouldn't be a problem.  Do most women just say yes and move on?  I don't know.  

    I suffered from a lot of anxiety for those 3 months.  I felt like I was in some kind of sur-real life that wasn't mine.  I wasn't sleeping well, and time was slipping away at a rapid pace  I believe my RO was tired of talking to me about it and one day simply said that something had to be done.  Either I started rads or I needed to schedule a mastectomy.  I scheduled the mastectomy...but 2 weeks before the surgery, I decided I owed it to myself to try radiation...after all, who wants another surgery?   So I tried it, one time...and that's what it took for me to realize rads were not for me.  If you'd like my rational for that decision, I can PM you. 

    So, 4 months after my lumpectomy, I had my mastectomy, and I am very happy with that decision... I just wish I could have looked past my fear and chose the mastectomy right out of the gate.  Ironically, I have a good friend who's sister had BC and her advice to me when this all started were those exact words "she wishes she had done the mastectomy first".   Fear is a very paralyzing thing, isn't it?

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  • aMtn4me
    aMtn4me Member Posts: 34
    edited September 2014

    BrooksideVT thank you for giving me another perspective and I am trying to keep my anxiety from taking over any logical thought processes I might still possess! 

    I'm pretty sure I'll be kicking and screaming the whole way!

    PRB1956 thank you as well. I think I must have been totally deaf when the BS had the tx options discussion with me cause I don't remember him stating that if I didn't want rads then I should have MX instead of LX. I do remember him telling me that MX did not increase survival so in my mind I somehow thought that I was gonna have to have rads even with MX. That had a lot to do with my decision to have LX. I don't really know what the heck I was thinking. 

    I was told by the BS nurse when she called to give me the neg nodes report that I might be a candidate for the 10 day/tx rads instead of the full 36 that had been discussed. She also said they didn't have the results of the HER2 test that was repeated. I don't know why but she said it was gonna take a few more days. The first one didn't take as long. 

    Yes fear is very paralyzing! I just wish I could get over this damn feeling like I'm constantly walking around in daze and questioning my own sanity.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited September 2014

    aMtn4me - please do NOT assume that choosing MX will mean no rads.  Discuss with your BS.  Depending on your c your BC team may require rads...not an option.  There are many here that have gone through rads with MX...you may or may not.

    My BC team said that due to the location and pathology rads would be require...LX, MX...didn't make a difference.  So I choose the lease invasive option and did rads.  I was concern with the reconstructive outcome with rads and all the additionl surgeries....just didn't have the desire to endure all that...everyone is different, but please ask... Don't assume having MX means no rads...ask!

    Best Wishes to you...the waiting and coming up with the right plan for you is the hardest part.

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  • aMtn4me
    aMtn4me Member Posts: 34
    edited September 2014

     RMlulu I will be going for my follow up tomorrow and hopefully things will be a little clearer. I will ask about the rads thing for sure. I'm probably going to do what they suggest whether I like it or not because I'm not ready to die yet! I am probably going to complain the whole way though. It's the only thing I have any control over at this point and I'm really good at it!

    The "tumor board" met on Thurs and I'm certainly anxious to find out their recommendations (I think). I'm gonna try to be patient and take it one step at a time. The waiting is awful and I know all of you have endured this and my hat's off to you all. 

    Thanks for letting me vent and for answering my questions. I wish you all well hope that tomorrow is a better day for us all.

                                                                                                             Debbie

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