November Rads 2009

amlg1
amlg1 Member Posts: 596

I will be starting Nov.3rd.Had my simulation on Monday.Does everyone get the same amount of areas to be targeted?I had many positive nodes,and have 5 marked areas to be targeted.I will be glad when this is all over.

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Comments

  • Christine2000
    Christine2000 Member Posts: 176
    edited October 2009

    Hi-- had my simulation today and am starting nov 4Th! Got 3 tatoos, looking at 28 sessions--

  • Sunone
    Sunone Member Posts: 151
    edited October 2009

    I started in October Rads, today was day 2 of 25. I will join you all in the Nov. rads group as most of my treatments will be in Nov. I believe each person has a different treatment plan depending on your diagnosis. I have three tatoos and think I have just two areas that are targeted, as the machine starts radiation on one side and then moves just once to the other side, but I had  DCIS, no invasive areas, and my lymph nodes were clear.

  • justpayton1
    justpayton1 Member Posts: 786
    edited October 2009

    I think it all depends on your dx and your onc.

    I finished 33 rads sessions at the start of Oct.

    I had 4 tats and 7 areas targeted. I also had a masectomy in July.

    Only 2 + nodes remained after 8 rounds of dose dense but given my family history and dx I believe they hit me as hard as they could.

    Big Hugs to you

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    Hi all,

    I had a unilateral mastectomy with TE June 5 and I just finished TAC chemo last week.  I will be starting rads somewhere around 11/4 as well.  I haven't gone for my simulation yet but they are telling me they will do radiation to my breast (foob) and up to under the collar bone.  I was surprised they weren't going to radiation to the axilla but he said it increases your risk of lymphedema.  I had 4 positive nodes though.  I think lymphedema would be a lot less concerning than a reoccurrence right?  Anyone had their RO say the same to them?  I think I want to ask my regular oncologist about this.  The nodes were N1 and two of them were micromets but still...

     Would love some input on this?

  • KQuigley
    KQuigley Member Posts: 17
    edited October 2009

    Greetings, Ladies,

    The past 10 weeks have been such a blur that I feel as if I'm just walking in a fog.  I had my simulation and two tattoos on Wednesday.  Some sort of x-ray on the 28th, and then radiation starts on the 29th and run through December 16 (33 treatments).

     Good luck to us all.

  • Solarbeam
    Solarbeam Member Posts: 23
    edited October 2009

    I just got out of my third surgery 2 days ago.  I'll be starting radiation in about 3 weeks.  My lymphs were clear, the tumor was removed completely, and went back for a full mastectomy anyway.  I went through 4 rounds of TC and I'm free and clear, but my oncology team wants to treat with 6 weeks of radiation anyway.  I don't really know what to expect, but I'll be looking forward to the reconstruction part of this whole thing.  God Bless. 

  • cherneski
    cherneski Member Posts: 726
    edited October 2009

    Hi All!  Let me just get it out of the way now.  I will be the bi$chy one! LOL.  I mean well, but I hate this DISease so much I find it hard to be all cheerful and positive.  I hate what it does to us, I hate what it does to our families.  So with that being said, I hope you can all tolerate me.

    I see my reg. onc. tomorrow and will be refereed to rads onc. to start rads in November.  I origanaly was told by onc. I will be getting 6-8 weeks, then she told me 6-7 weeks, so I am hoping for only 6 weeks.  I will probably start November 9th, as I am going away the weekend before.  I just want to forget about all of this for a while.

    I have questions too.  Do they radiate the breast or the under arm?  I had 7 positive nodes.

    Anna, thanks for starting the group for us!

    Christine2000, What is simulation?  Is that what they do to show you what it is like?  So glad to see you here.  Look we met on stage 3 and now we can hold hands through rads.

    Justpayton1, Thanks for looking in on us.

    Kime, Does it hurt at all?  Tingle?  

    Lauren, I understand wanting to get it all gone, but Lymphedema is can be very serious.  I am fortunate that mine is so mild, but not pleasant and it hurts sometimes.    Check with your Dr. so that you get what you feel is best.  We all know that by now to go with our gut.  I dont want them to radiate my breast at all as I want recon one day (I think). I live in NJ too! 

    Kquigley, I too feel like I am in a fog.  I am 3 weeks out of chemo tomorrow.  I did 6 rounds of Taxotere and Cytoxan.  I had every side effect in the world I think.  I sure hope rads is better to my body.

    Solarbeam, Wow 3 sx's.  I too am very confused about all of this and recon some day.  

    Does anyone know if we still go on Holidays?  Like Thanksgiving?  

     Much love Deb

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    Deb - let me know what your doc says about the area of radiation?  I definitely don't want lymphedema, I was just so shocked to hear they wouldn't be radiating to the underarm area with 4 positive nodes.  The doc made it sound like it's never done that way, so I'm really curious.

    I had recon already and I will be getting radiation to the breast.  I just have to wait 3 months after rads are done for my exchange so the skin can heal.  If I hadn't done rads I could have had the exchange almost right away. 

    Mine is closed Thanksgiving and Christmas.  The nurse said it's important to have at least 4 visits in per week though so if we were for example snowed out another day the week of Christmas, they would open over the weekend to get everyone in.

  • amlg1
    amlg1 Member Posts: 596
    edited October 2009

    Deb..simulation will include making a mold of the upperhalf of your body,do you are in the exact same position,every tx.They give tats,where they are radiating,it is a very precise ordeal,I was there 1 1/2 hrs.Not bad at all you will be going in and out of ct machine to make sure everything is set up correctly.I too had many pos.nodes,but they did not do under my arm,but 2 on my  back near side and near under arm.and 3 other sites.

    I am  worried about lymphedema,Lauren is so right Lymphadema would be so less concerning than reoccurrance.Oh my dry run is Nov.3 and I start Nov. 4.They told me at least 3 is fine,my first week,they wouldn't do less.

    Stay strong All !!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    I'm with Kime.. I thought I was to start rads in early October, but won't start until October 28. I've had my simulation and go for my trial run Thursday then begin treatments on Friday.

    I'm not looking forward to this leg of the journey.

  • shelleyr25
    shelleyr25 Member Posts: 107
    edited October 2009

    Hi Lauren and Deb!!! Good to see my NJ friends in the house!!!!

    My surgery was almost 2 weeks ago and I go on Thursday for my rad consult. I should be starting in November so here I am...

    As far as the holidays, I was told they close on Thanksgiving, Xmas and NYears day..never 2 days in a row.

  • Solarbeam
    Solarbeam Member Posts: 23
    edited October 2009

    cherneski - Yes, it is a lot of surgeries, but I'm hearing that many women don't go through with all the reconstruction.

    My first was a lumpectomy with 10 nodes removed.  The margins weren't clear, but my nodes were. 

    I was back in for a second surgery 3 weeks later for a subcutaneous mastectomy.  Margins were clear that time.

    Then I had 4 rounds of TC.

    After the chemo, I was back in surgery for a third surgery for a full mastectomy.  I decided keeping a nipple wasn't worth the risk even though margins were clear.  I had invasive ductal cancer.

    I'll be in radiation in about 3 week or so for 6 weeks.

    Once I've healed from that, I'll be in my 4th surgery.  I'm having a mastectomy on the other breast (which is medically unnecessary, but psychologically and cosmetically to my benefit).  I'll also have tissue expanders put in at this point.

    My 5th surgery will be to replace the tissue expanders with implants.  

    My 6th surgery will be to have nipples put back on.  Yippee!  How exciting that will be!

    Of course, once I heal from that, I'll be back in for the colour.

    I was warned at the beginning of all this that it would be a long journey with many steps.  However, I'm looking forward to the big journey being so much longer - the journey we call life.

    God Bless.

  • Sunone
    Sunone Member Posts: 151
    edited October 2009

    Hi Deb,

    Today was my third treatment and I don't feel a thing during the radiation. Although the simulation took a while, the treatments themselves are very quick. I'm not in the treatment room for more than a few minutes.

  • EngTchr
    EngTchr Member Posts: 184
    edited October 2009

    Hi everyone, I belong here, too.  I had my ct simulation last week and have X-rays on Nov. 2 and first rads Nov 3.  When I originally met with the rad onc she told me I'd have 30 treatments.  The day I had the ct scan the techs said they blocked out my time slot for 36.  Hmmm.  I'll find out more about that next time I see the doctor.

    I had a lumpectomy on each breast--two completely different cancers.  One IDC, triple positive, and the other DCIS, triple negative.  I did 6 txs of taxotere, carboplatin, and herceptin, (last one was Sept. 30)  and will continue herceptin until next June.  They will radiate each side.

    I didn't have any kind of mold made.  Instead, I lay on a "breast board" with both arms over my head in little arm rests.  Got three tattoos.

    Nice to have others to compare notes with.

    Becky

  • Sunone
    Sunone Member Posts: 151
    edited October 2009
    I didn't have a mold made either, I have my arms over my head in the arm rests. 4th treatment today.I originally had three tattoos, and two lines that were covered with tape. After two weeks the tape was getting loose so I asked them to reapply the tape today, they did to the line on the center of my chest, but got rid of the other line and added a fourth tattoo dot.
  • debnyc
    debnyc Member Posts: 111
    edited October 2009

    I will be officially joining you guys on November l0th. I lay on my stomach with my left boob hanging down to get the treatments. I didn't get a mold either. I have 5 black freckle tattoos--2 on my boob, 2 on my side and one on my back. I'm doing 33 txs and will be done just before the holidays. So glad to be starting the new year with the worst behind me.

     Deb

  • cherneski
    cherneski Member Posts: 726
    edited October 2009

    Lauren, it is kinda funny I want them to do my armpit to make recon easier.  But looks like I wont be getting that from what everyone is saying.  I understand the fear of recurrence.  I am scared.  I go for 2 different U/S on Monday to double check.  I have a 4.3 cyst on my ovaries, normally I wouldnt be worried as I have always hads cysts there.  But I was told I had "cysts" August 08 and then 6 months later I am here Stage llla.  The other u/s is on my thyriod. 

    Anna, thanks for the info.  Sounds quite complex and interesting. I didnt even know we had that many nodes in our armpit! 

    Swapy, let us know how it goes.

    Shelly, I meet my rads onc this thurs too!  

    Solar, yeah a lot of sx's.  I will be doing recon after rads (hopefully).  I plan on doing DIEP and cant wait to have something that resembles a boob.  I met a few women that did it and was told it can take as many as 5 sx's to get it all right.  I will be getting tattoos for nipples I think.  Yeah it will be nice to leave this journey and move on to the journey of life and live to be 130!

    Kime, thanks for letting me know it doesnt hurt.  It sounds like it will hurt dont you think?  Are you tired from it?

    Becky, WOW you have an interesting case.  It amazes me how complicated this disease can be.  I thought mine was interesting with ILC, IDC and DCIS.  They just gave you cancer soup.  Did the tattoos hurt?  I dont know why I am asking as I have a few on my own, but I am such a wimp lately.

    Much love all Deb

  • cherneski
    cherneski Member Posts: 726
    edited October 2009

    Hi Deb, Amen to starting a new year!

  • debnyc
    debnyc Member Posts: 111
    edited October 2009

    Hi Deb!

    The tech did my tattoos with a syringe. The one on my rib cage hurt the most... note to self, do not get tattoo on side :) Barely felt the one on my back and the boob ones were fairly painless. Just a prick. They also said I could bring my on cd's (who has cd's anymore???) to listen to during treatment. Unfortunately, they won't let me use my iPod. Also, be prepared for the tech to draw all over your chest with a sharpey during the initial set up. That actually tickled. I had to laugh when I looked in the mirror. My body looked like a sci-fi treasure map :)

    To 20l0!!! The best year ever!!!!!!!!!!!

     Deb

  • Sunone
    Sunone Member Posts: 151
    edited October 2009

    Deb(NJ), the rads do sound like they will hurt, but don't. When they give you the tattoos it is like a very quick pinprick, not terrible, but you do feel it, but it is also over very quick. I am not feeling tired or having any skin reactions so far. (I used to be a Jersey girl)

    Swampy, hope your trial run and fist treatment go well.

    Kim

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    I go for my simulation in the morning!!!  After all I've been through, it's kind of funny that I'm REALLY nervous. 

    Deb (NJ) -- good luck on Monday, I'll be thinking of you!

    Deb (NY) -- 2010 woo hoo!  I'm already trying to decide how I will ring in the New Year.  Or should I say, how I will ring OUT the year from hell...

  • cherneski
    cherneski Member Posts: 726
    edited October 2009

    Yes to ringing out the year from he!! 

    I think I will get very drunk and laugh a lot.  I miss my wine.  I havent drank anything since I started chemo.  I know we arent supposed to but I thought I would want to.  No desire to at all.  So I hope I want to have a few drinks and just laugh and really let go. I would go topless if I had boobs~ Sorry I just had to go there.

    New years eve is my birthday too!

    Good luck tomorrow Lauren!  Where do you go for tx?

    So now there are 3 of us from NJ here, Kim got smart and left.  Wow

  • debnyc
    debnyc Member Posts: 111
    edited October 2009

    I haven't had a drink since September lst. That was the day I was told I needed a re-excision because they didn't get it all. That was the first time it hit me. I also went hardcore on my diet. No dairy, no red meat, no sugar and only organic. My birthday's on Friday, and although thoughts of a  red wine and mac 'n cheese have been swirling around in my head, I'm not sure if I'll do it. I know eventually I'll need to live a little, but now I'm still freaked out now.

    Off to do jury duty today. Fun.

  • Christine2000
    Christine2000 Member Posts: 176
    edited October 2009

    I have also gone hardcore on my diet since April diagnosis--no wheat, dairy, sugar or red meat (I eat a little organic beef or lamb once in a while)  I DO still drink red wine, but not like I did before. I have lost 60 pounds on this diet-- I think I will be on it for the rest of my life.

  • amlg1
    amlg1 Member Posts: 596
    edited October 2009

    Welcome all ...Deb NJ..Good luck on all your tests,I was told we all have a different amount of LNodes.I found another tat 6 of them.

    Becky..we will be on same scheduale for Rads and herceptin,Guess we will both be finished the same time next June.

    DebNYc..are you going to Sloan?I am using them.

    Well after the holidays it's major weight loss and vacation for me !!!Wish I could be that strict.Christine 20,and DebNYC.

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009
    I haven't drank since before my surgery so I'd say May was the last time I had a drink, or maybe even earlier.  I miss my red wine too.  Once I'm through tx I want to modify my diet too.  No white bread, sugar or caffiene (already gave up the caffiene).  I think I'll let myself do red meat and a drink or two about once a month.  No way can I give up dairy though... Frown
  • debnyc
    debnyc Member Posts: 111
    edited October 2009

    hi anna,

    i'm not going to sloan. i tried to get a 2nd opinion there after surgery but after faxing all of my records over, they wouldn't see me because i didn't need chemo. whatever. i'm doing radiation at beth israel in union square. it's only a few blocks away from me and so convenient. and am now seeing a medical onc at nyu.

    wow christine2000. 60 pounds is amazing!!!!!!!!! you should be SO proud of yourself. i've lost about l0 so far. i hope to lose another 5 or maybe l0 more. i started tamoxifen l0 days ago and so far no se's. i'm really hoping if anything, i'll be on the weight loss side and not the bloating weight gain.

    lauren3, it's actually easier than you think to change your diet. i thought giving up cheese would be impossible.  the one positive about bc i've found so far is that i have all of this willpower that's never been there before.

    so cool to have free wifi in the jury pool.

    deb (nyc)

  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    I had my rad simulation this morning.  It wasn't bad, my under arm was a little uncomfortable from holding my arm up but not a big deal at all.  I'll be starting next Wednesday.

    I think I could give up cheese (although pizza would be hard) but no idea how I could give up milk and yogurt!?!?!?

  • Christine2000
    Christine2000 Member Posts: 176
    edited October 2009
    Hey Lauren-- the diet isn't necessarily right for everyone, I certainly don't mean to imply that! But I weighed about 225 pounds when I was diagnosed and I knew I needed to make some changes if I was going to get through this. My onc nurse actually told me it was a bad time to try to lose weight because I should not be stressing myself out (she has totally been cheering me on though btw!) but I needed to do it for myself. That was the method that worked for me.
  • Lauren3
    Lauren3 Member Posts: 289
    edited October 2009

    Changing my diet is definitely something I would like to try to do... it's something I can actually control which is rare these days! 

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