Quitting rads to get mastectomy instead?

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Raili
Raili Member Posts: 435

Has anyone ever quit radiation partway through to get a mastectomy instead?  (For those of you who were told that lumpectomy + radiation was equivalent to mastectomy; I know it's not true of everyone's case).  And if so, how did you make that decision?  What made you decide to quit radiation?

I'm 10 treatments into radiation and still hate it, and have been having one problem after another with it.  Every day, I have to talk myself out of skipping, or quitting entirely.  I'm so stressed out by having to go through this every day that part of me is tempted to just have both of my breasts removed and get it all OVER with, once and for all.  Another part of me thinks I'm being a baby for not being able to just tough this out for another month, because 4 weeks of difficulty should be preferable to a lifetime without breasts.

Comments

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2010

    Read all the reconstruction threads and see how much of a hassle/surgeries/pain/time (way, way more than one month of unpleasantness) they have to go through just to get boobs back! If you are that upset, you should really ask for some anti-depressants to help you get through this stage, it is only one more month out of the WHOLE rest of your life!! (Which is what a BC friend who didn't have the option of a lumpectomy told me when I was feeling shakey and had the whole radiation thing ahead of me.) Good Luck! Ruth

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited April 2010

    If you are having problems with rads and your gut says to stop, go ahead and stop.  I didn't listen to my gut, wound up dealing with pain/infections/rotting breast for a year from the after effects and had to have a mastectomy anyway.  The rads complicated the mastectomy and will complicate the reconstruction.  If I'd stopped half-way trough I would be so much better off. 

  • jacee
    jacee Member Posts: 1,384
    edited April 2010

    Raili-  I had the mast. then chemo & rads. So not the same situation as you. And I've only been on this journey for a year. What I've learned though, is.....for me, it is very easy for me to get discouraged in the midst of treatment and surgery recovery. After mastectomy, I felt such a loss and wondered if I made the right decision. (Yes, I did). During chemo I was so, very sick and really at that point, could have easily given up. The hardest 6 months of my life!!  I did not want rads at all..hated it....but pressed on. Finished 3 weeks ago, have healed nicely, even though I was burnt and blistered and in much pain.  Now, I'm having terrible joint pain with Femara that my onc wants me on for 5 years!! Trying to work through that. For me, no stage of this journey has been easy, and I've questioned myself many times on whether I'm doing the right things. But, after I finish each stage, I realize I'm stronger than I thought and yes, I can do this. I get alot of hope and comfort knowing so many have gone before me on this path and are now doing fine.

    I do feel we have to make alot of decisions when we are very unprepared. No wonder we second guess ourselves. Best wishes to you as you make this decision.

  • Raili
    Raili Member Posts: 435
    edited April 2010

    Thanks, Ruth.  If I chose to get a mastectomy, I would not choose reconstruction; I would not put myself through any more surgeries than are medically necessary.

    Thank you, NativeMainer and Jacee... it IS a difficult decision, as your complete opposite replies illustrate!  One may end up with rotted breasts from radiation that then need mastectomy anyway, while another may plow through radiation despite the difficulties and then be glad for it.  It's the gazillions of UNKNOWNS with BC treatment that overwhelm and paralyze me.  It's so difficult to make decisions when time is limited. :(

  • ElaineD
    ElaineD Member Posts: 2,265
    edited April 2010

    I haven't had rads, so can't relate to your fears and upsets on that score (came across your post via active topics). But I have had two mastectomies (the first with a primary, the second as a prophylactic after being diagnosed BRCA2.) What I would suggest is that you think long and hard...which you seem not to want to do at the moment, so this advise is not too helpful for you-but it's nonetheless something which I think I should say.It's such a  drastic step,and one with which you will have to live forever, so even although it sounds contraditory to what you want/need to hear-slow down! I'm happy with my shape-no reconstruction either ("what you see is what you get"). I'm not a particularly girlie girl, so found my new flat shape perfectly acceptable. But it does take a long time to get used to. I wonder if a surgeon would even consider your requests on these grounds? Please try just to go with the rads-it's "only" another few weeks. Should you get matectomies, you will live with the consequences forever. Although I don't miss my shape, I do miss the sexual pleasure they used to give-another aspect which needs careful consideration-once they're gone, they're gone! Good luck.

  • pj12
    pj12 Member Posts: 25,402
    edited April 2010

    And keep in mind, some women who have a mastectomy still have to have radiation due to close margins and other complications. It's not common but does happpen.

    pam 

  • Raili
    Raili Member Posts: 435
    edited April 2010
    Elaine, I'm not sure why you think I don't want to "think long and hard" about things... That is exactly what I WANT to do - have more time to think things through, research my options, ask the doctors more questions, find ways to cut through my fears and anxieties so I can listen to my inner logic and wisdom instead, ETC.  What I meant by not having time is that I am currently in the middle of radiation treatments, with 10 down, 23 more to go.  I have less than 24 hours to decide if I'm going to my radiation treatment that's scheduled for tomorrow afternoon.  This has nothing to do with me "not wanting to think" about things.
  • GryffinSong
    GryffinSong Member Posts: 439
    edited April 2010

    I don't have any advice. Just hugs and encouragement to talk with your surgeon about this idea. I think given time and the difficulties you're having, your surgeon is the fastest, best way to give you some ideas on pros and cons.

    For me, I chose the bilateral mastectomy with no recon and I'm very comfortable with my decision. I haven't missed my "girls" at all. Part of my decision-making process was that I didn't want rads. Unfortunately, I had node involvement, so I wound up with chemo and rads anyway.

  • cary1
    cary1 Member Posts: 372
    edited April 2010

    Nobody can tell you what is best for you, but I would just say the problems you have had with radiation (I went back and read your past posts) are all (most likely) temporary discomforts and annoyances. Incredibly irritating to you, but still temporary. The burns will heal, you will eventually not have to see the radiation oncologist you hate, the daily burden of showing up will end, you won't have to wear the gown, etc. A mastectomy is forever. It is also major surgery that takes a lot more time to recover from and has its own potential lasting complications. For me, the time off work would have been a problem, and the fact I do a fair amount of manual labor, that would have been a problem too. There is also the sexual aspect that was brought up. So I was relieved to have the option of lumpectomy.

    Is there anything you can do to make the radiation go more smoothly? Can you change your appointment time? I did mine early morning before work each day. Are there other radiation oncs at the facility you might like better? Are there any female radiation oncs? Can you just lie back and think of England? (Don't know if you know that reference, but honestly we have such a great capacity to compartmentalize and being half naked on a table with a bunch of strangers is a great time to use those skills). For me radiation was made easier to endure because I had just finished chemo and that had *&^#ed with my brain (and still does). I was relieved to be doing a treatment that no matter how unpleasant, would leave my mental faculties intact and have damage that would be 99% likely to heal. Recently when I had to have a biopsy on the same breast for a suspicious area I felt so sad that mastectomy would be my only choice if it turned out to be a new cancer since you can't radiate twice in the same place. Although on the other hand, I felt strangely tempted to get a mastectomy on both my "busy breasts" because I knew this biopsy is probably only the first in a long line of biopsies to come, every year, like clockwork because I have so much going on in the tissue. Still I was relieved not to be forced into the decision. So, *only because you asked us*, I would say tough it out. Leave the more drastic options, god forbid, for later. 

  • Raili
    Raili Member Posts: 435
    edited April 2010

    Thank you, Gryffin.  I have indeed emailed my surgeon, the hospital social worker assigned to me, and a therapist friend of mine...and plan on talking to the rad. onc. tomorrow, and tracking down my med. onc. as soon as I can... trying to get lots of info to help my decision.

    And thanks, Cary.  I do have multiple problems with rads and not all of them are ones I've written about in the forums, but nonetheless, I see your point.  I'm definitely at the point where it's hard to even listen to my intuition because its voice is muffled by the depression & anxiety that's creeping in.

    This rad. onc. is the only one (in my hospital's network) that's within 90 mins of me, and I can't afford the gas money (nor the time) of driving 90 mins every day to see a different rad. onc...

    I'm going to go to my scheduled appt tomorrow and see if I can force myself to just do the treatment...and maybe consider temporary anti-anxiety meds if I must, although I hate the thought of it. :(

  • ElaineD
    ElaineD Member Posts: 2,265
    edited April 2010

    Ahhhh-I see now! Your post sounded so desperate, that I got the (wrong) impression that you would take any option rather than proceed with the rads which are becoming intolerable for you. I'm relieved that you will proceed with caution-I just wish there was some way you could complete the course, as it ws presumably a decision with which you were initially comfortable-and one which was recommended for you. Bilateral without reconstruction is a life changing event,and I would urge you to avoid it-unless it was medically necessary-ie if you were high risk. I think Cary's first paragraph summarises it beautifully-take strength and courage from it if you can.

  • Raili
    Raili Member Posts: 435
    edited April 2010

    Thanks, Elaine.

    I went through with today's radiation, despite lots of crying... talked with a tech, talked with the nurse... I'm getting therapist recommendations... trying to just take it one day at a time...

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2010

    Keep hanging in there, you'll get through it!! Best wishes, Ruth

  • jacee
    jacee Member Posts: 1,384
    edited April 2010

    One day at a time...you can do this!!!

  • hymil
    hymil Member Posts: 826
    edited April 2010

    Raili, Haven't heard for a while, I'm wondering how you got on with this. You must be nearly thru with it by now anyway? I'm one of those who got mx with node surgery AND rads but at least it will reduce my risk of recurrence..... i suppose. And i figure it puts me in a stronger position when i get to argue the tamoxifen.

  • Raili
    Raili Member Posts: 435
    edited April 2010

    Thanks, hymil, for checking on me.  I think I have 2 weeks left of radiation?  I lost track.  I still hate it and I'm still struggling with it a lot.  Anti-anxiety meds didn't help, because they make me too woozy to drive and I can't take them.  I just need something to calm me down on the table for that 15 mins each day.  On good days, I do metta meditation while I'm lying there.  On bad days, I just cry and cry.  I finally got an appointment with a therapist for this Thursday... I really need it.  It's so emotionally draining to go to the hospital and be a cancer patient every single day!  I skipped Friday, just because I had too many other things to do that day and just flat out didn't want to go to radiation.  It felt great to skip, and I loved the 3-day weekend, but it made it even harder to go back today.  Over the weekend, my red breast turned to a tan and was starting to heal so well, and it pissed me off that I couldn't just let it keep healing - I had to go back and get it BURNED AGAIN.  I'm just so tired of it.  I still don't believe that I need all 33 treatments, or that anyone can really know that.  I keep wanting to believe that I've now had ENOUGH.  But as my surgeon put it, people around the world are hard at work studying whether or not radiation less than the standard 5-7 weeks would be just as good, but that at age 31, I'm too young to become one of those guinea pigs.  I get her point, and logically I understand, but my emotions aren't agreeing with my logical brain, you know?

  • hymil
    hymil Member Posts: 826
    edited April 2010

    One day at a time, Raili. LIke Jacee said. We can get through this. Logic doesn't answer fear, you need a hug! (((-Raili-)))  She's right, your surgeon, and it sounds like she cares too. Smile As for logic, the rads work whether we welcome them or hate them so just hang in there!

    I can't get mine to tan but at least i haven't peeled yet, though i sure am red and getting itchy. i figure we probably finish more or less together then. Just off to splash on some more cream...

  • Raili
    Raili Member Posts: 435
    edited April 2010

    Thanks, hymil!  Hugs back to you!!  I will take all the hugs I can get these days! :)

    Yes, I'm grateful to have such a sweet and caring surgeon.  She calmed me down when I was having my radiation freakout, even though she's not the one who I should have been going to for help.  She reminded me of what I had told her about why I chose radiation instead of mastectomy, and it was really helpful to have her remind me of my own words like that...sort of re-affirmed my decision.

    And good point, re: the rads working whether we like it or not!!  Hope your redness and itchiness feels better.  I should go put on more aloe, too...

  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited June 2010

    Right from the get-go, I was told I would have chemo, surgery and then rads for a 5cm IDC left breast.  Have completed chemo and uni-lateral mast surgery.  5 nodes taken - all negative.  First onc I saw post-surgery said only Herceptin for a year and Arimidex - no rads.  Met with primary onc - he said probably rads!!  Now what?  I don't want rads to the node area - risk of lymphadema increases.  Will meet with rad onc next week, but wouldn't a rad onc suggest rads anyways?  I'm confused.  But there goes the notion that a mastectomy doesn't require rads - I think it is more normal than people think.

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