May 2012 radiation

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    I did not have a mold either...just 4 little dots. It was all over in 30 minutes...the rads themselves were a breeze.

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    i actually am doing so much better than thursday. i can now laugh about my insane day! glad to know someone else did not have a mold.



    dizzy, how did your appointment go today.

  • Dizzy215
    Dizzy215 Member Posts: 74
    edited May 2012

    Hi Mckenna, my first appointment went well.  Just an exam and a chat with the RO - she's very nice & treating my surgeon's wife who also has bc, so she comes highly recommended!  I have my simulation with CT/mold making booked for Thursday and hopefully I will have my first treatment Monday.  She says I need 33 treatments, so that will take me almost to the end of June. I forgot to ask about tattoos and the Glaxol cream but she did say she recommends Aquaphor.

    Glad to hear you had a better day today! Is the infection clearing up? 

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    dizzy, glad to hear all went well.  over the weekend i thought the infection might be better but now i just don't know.  i am hoping to be seen tomorrow by the ro (he is out today) and if he can't clear me tomorrow for rad on monday i am going to ask to be admitted for iv antibiotics, i am on day 11 of antibiotics if they aren't working by now, i just don't think they are going to magically start working in the next 6 days :)

  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    I hear a lot of people talking about simulation..Im not sure what that is exactly..I went in one day and spoke to my RO...they took me into a room and molded me..tatooed me and I was in the CT scanner for a few minutes...the next time I went in they told me was to take some final measurements and I was laying in the mold on the table with the rad machine and when I was through they said I had just had my first treatment..that was a week ago Thursday...was that supposed to be simulation?  Im trying to understand all the lingo and such here and I wasnt familiar with the term simulation. 

    Thanks

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    my pre treatment was called "mapping"

  • Spokanellie
    Spokanellie Member Posts: 46
    edited May 2012

    mckenna - Sorry I sort of "wrote and ran" back on April 30. I'm doing most of my reading of these boards on my Kindle Fire and turns out I can't post from there. Finally have a few minutes at the good old PC so I can pop back in to say "hi."

    dizzy215 - I'm happy your appointment today brought no new excitement!

    My initial RO appt is tomorrow morning - very curious to learn which of all these various permutations I'll be having - simulation or not, custom mold or not, tatoos or not. 30 treatments? 33? 25? I hope only the breast and not the underarm, since all the axillary lymph nodes are gone, but again, we'll see. Smile

    Question: Do any of you have any evidence of lymphedema? I'm worried I might have some VERY EARLY symptoms and I have an appointment tomorrow afternoon with a physical therapist who specializes in LE. Anyone know if radiation is contraindicated if there are signs of early LE?

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    spokanellie, i only have access at home from my kids' kindle fires and  i thought i was just doing something wrong as to why i could not post :) thanks for the info.  good luck this am, i can't help with the lymphedema question because i did not have any lymph nodes removed.  from my marks it does look like my arm pit will be radiated though. 

     let us know what they say after your appointment today

  • etherize
    etherize Member Posts: 423
    edited May 2012

    Spokanelle, I have early signs of LE, confirmed by a physical therapist and yet my RO claimed I didn't have it ... I think that's fairly common.  I guess they're not trained to know what to look for -- and since radiation increases the risk of getting LE, maybe they (ROs) don't care all that much if you have it going in. (Sorry, I'm not feeling too positive about radiation)

    Nevertheless, I'm getting radiation to the armpit AND the supraclavicular nodes.  Just had my first treatment yesterday.

    I don't know why it's affecting me emotionally so much.  I guess it's feeling like a slab of meat, with a bunch of guys walking around my half naked body, drawing on it, moving it around ... the lack of control and power I feel.  It's just depressing to me.  And I've only had one tx. :(

    edited to add:  as far as I know, radiation is NOT contraindicated if you already have LE.  The attitude is that more LE is still better than a bc recurrence. 

  • Peacock
    Peacock Member Posts: 86
    edited May 2012

    I'm happy to join the group. Simulation and mapping was this am, so I'm ready to go.

     I'm sorry that the markings seem to make you conspicuous. I think that after months of being bald and puffy from chemo steroids, perhaps this seems like less of a problem. 

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    Hi there,

    I'm not sure if I should be adding myself to this group or not.  I found out for sure today that I will have to have rads.  I've met with a RO last week for a consultation, and have the measuring appointment on May 30.  The first week in  June is when I'll really start the treatments.   

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

     welcome peacock and neeners

    peacock do yo have a start date?  how many weeks do you have?

    neeners,

    we are all starting in various points and will go into june so this is probably the right place.  how many weeks will you do?  your diagnosis seems very close to mine, how old are you?  they said due to my age (38) i would need rads but 5 rather than 6 weeks. 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Amen peacock...welcome to the next phase.

    Hi Neeners - welcome to you too

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    Hey McKenna - I'm 45.  I have to have 30 treatments.  Thanks for the welcome!

    Hey Kelloggs - thanks!  Glad to have other people going through this at the same time.  Looks like you're almost done? 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Neeners - I wish I was done, just had tx #6 today out of 35 (28 regular and 7 boosts).  I have been through the proverbial wringer though, 2 surgeries and finished chemo on 3/22, started radiation and Tamoxifen on May 1st.  So glad most of you ladies don't have to go through all that.  It makes radiation seem like a breeze although I know it's not a breeze for everyone.  But we will all get through it together.  BTW, I'm 45 also!

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    I have to go on Tamoxifen, as well, but not until I'm through with radiation.  Sorry, by through I meant that it looked like once RADS was done you'd be pretty much through.  Girl, you HAVE been through the ringer!  I hope you have a huge party/celebration after.  Then you can add 'Vacation' and 'Celebration' Therapies to your sig!! :)  Big hugs.

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Thanks!  Since my DH and I got screwed out of our newleywed year by BC we are celebrating with a trip to Chicago in 2 weeks to see Jersey Boys and let loose!  Our one year anniversary is Monday.  I just added all that crap to my profile, didn't know it would read like that in my signature, it's a little busy!

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    Oh man!  You're a newlywed, too!  I like your sig because it shows how far you've come; sorta like a badge of honor in a weird way. You're a tough lady!

    I love Chicago!  Have you been before?  There is a champagne bar there that would be perfect for a celebratory drink: http://popsforchampagne.com/

  • etherize
    etherize Member Posts: 423
    edited May 2012

    neeners wrote:  I'm sorry that the markings seem to make you conspicuous. I think that after months of being bald and puffy from chemo steroids, perhaps this seems like less of a problem. 

    Maybe it is to you, and I guess I'm surprised as well by my reaction, considering everything I've already been through.  But I wasn't talking about feeling "conspicuous" per se -- I already look like someone who is very sick, and that doesn't bother me.  (And after all, one can always wear a wig to cover baldness.)

    It's more the objectification of cancer treatment, feeling vulnerable and powerless, and knowing all the damage that radiation can do ... Also, I guess I was a little more sensitive about being naked and helpless in a group of men since I was raped when I was young; I guess the simulation brought back some of those feelings.  

    Mostly though I'm just tired of cancer treatment.  I'm glad it's going well for you.   

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    Hi there - I didn't write that?  I'm so sorry for what you went through, though. 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Wow etherize...that is so awful that you went through that!  I can understand that the vulnerability we feel during treatment would be tenfold for you....{{{{HUGS}}}}

    I don't think anyone means any disrespect.  Those of us who went through chemo have very visible outward signs that we have gone through it.  Yes, we can put a wig on but most of us have lost our eyelashes and eyebrows too.  The point is not to diminish anyone's experience because at the bottom of it all....we have cancer and that is emotional for all of us.

    {{{{HUGS}}}} to all!

  • Peacock
    Peacock Member Posts: 86
    edited May 2012

    No, I wrote that in reply to McKenna. (But hide baldness? Not these missing eyebrows and lashes, unfortunately!)

    I was thinking about her comment that this was the first outward sign of cancer, which made me sad and envious. With a BMX, port, chemo face and baldness, I am sadly used to the outwards signs. None of them are easy, not for a minute. I thought the tattoos, which aren't visible unless I look, weren't so bad. 

     I don't have a single male doctor, so I don't know about that experience. 

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    I think treatment-wise radiation is the easiest for me.  However, up until radiation I dealt with only women doctors and nurses also.  Even though I am long past the point of modesty, it is no fun to be on the table uncovered while male techs position you and stare at the markings on your exposed boob!  I hate that part of it!

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    I've only had female doctors up until I met the RO last week.  I was actually worried about it, since I have only had female doctors, but I didn't feel uncomfortable with him looking at the incisions, etc., so I'm hoping I'll feel the same way on the table during rads.  My boob hasn't gotten this much attention, ever.  Sheesh. ;)

  • etherize
    etherize Member Posts: 423
    edited May 2012

    Sorry, neeners ... and peacock, thanks for clarifying.  

    Kelloggs, thanks for the hugs. :-)  I also went through chemo, but I was "lucky" enough to get CMF.  So I didn't lose all my hair, and I'm grateful for that.  I do understand how traumatic it is to have major body changes from medical treatment, though -- I have a co-morbidity that has permanently changed my face and body in drastic ways.  

    I apologize if I made anybody feel I was diminishing the impact of their treatment.  It all sucks, no matter what we go through, and I wish there was a magic pill that could make it less harrowing.

  • Neeners815
    Neeners815 Member Posts: 358
    edited May 2012

    Can you all recommend the following:

    • What you've been wearing during your treatment?  The RO mentioned lightweight cotton tops.  I'm lucky that I work from home usually and won't even have to have a bra on most times.
    • He also talked about not using any lotions (probably the wrong word) because they could have metal in them and make it worse.  He said if I do use it, I can't apply it more than 4 hours beforehand.  Did you guys get those same instructions?  Were you waiting until red showed up and then started using the lotion?

    For those almost done, how tired would you say you are?  He said that might be a SE, but would be later on in the treatments.

    Thanks a bunch for your help.  I want to order some tops before everything starts.  I have t-shirts, but figured people here would know the extra-soft ones that I should look out for. :) 

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited May 2012

    I am still having treatments - 4 left out of 25 ---

    I wear a bra and tshirt -- I also use Glaxol base lotion in a tub -- that was recommended by my RO -- cannot apply for up to 2 hours before treatment.

  • ltsering
    ltsering Member Posts: 4
    edited May 2012

    Hi. I start 25 sessions of radiation on May 14. Curious to know what it will be like.

  • ltsering
    ltsering Member Posts: 4
    edited May 2012

    I did the exact same thing. Yes you underwent a CT simulation.

  • ltsering
    ltsering Member Posts: 4
    edited May 2012

    Hi Schatzie, thanks for this recommendation. I'll get the Glaxol Base too.

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