SEPTEMBER 2009 RADS

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  • brookside
    brookside Member Posts: 77
    edited August 2009

    Hi

    May I too join in?  I see the rad guy on Monday and will be scheduling the sim thing and all I guess next week and then start in Mid September I guess.  I don't know.  Are any of you getting tomotherapy radiation?  What did they say regarding this versus the regular radiation?  I will get tomotherapy and am curious.  Thanks.  Guess I'll probably be here AND October.  Whoppee!!

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited August 2009

    Betsy, what an amazing post! I am not having rads but miss your postings so came to pay a visit! I am pleased you managed to get away and sounds like you are eating almost normally? That is great - I am so happy for you!

    Titan, how are you doing?

    Thinking of all of you, Judy x

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited August 2009

    Shelly,

    I had a BSGI test prior to surgery. It is specifically used to rule out additional tumors in the breast. I'm not sure it's offered everywhere and it's pretty new in the use of breast cancer diagnosis.  It's like a reverse x-ray. They use a nuclear contrast and you have to lay still with your boob on a plate for 5 minutes per side. Basically your boob radiates the film or board. A digital monitor blacks out the screen if there is cancer present. My tumor looked like a black hole in my chest. But it cleared me of an additional cancer in my other breast prior to surgery & chemo. It has given me peace of mind.

    Betsy  

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  • ccbaby
    ccbaby Member Posts: 985
    edited August 2009

    Hi everyone! I am going to join this group also. I have been posting in the August thread, but I think I should switch to this one since we all will be starting about the same time frame. I had my SIM last week and today I had my first rad treatment. It was excruciating only because they did my markings first and then my radiation afterwards. Usually they don't start rads until the next day, but they wanted to start early on me. Anyway, I had to lay on the hard board with my arms above my head for about 2 hours total!! They let me get up once to get some feeling back. They kept reassuring me that it would not be like this from now on....only about 15 minutes. I got my tattoos after it was all done, 4 of them.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2009

    Christy - I had my fourth rad today (started on Monday). The tattoos and sim were last week. They took much longer. The first one did take a little while but each day it has gotten faster and today, I was on the table and back off before I had a chance to blink.  It  seems to me that the machine does 4 radiations at about 15 seconds duration, and maybe 15 seconds between them. So about 2 minutes total. Plus about a minute or so to get me situated on the table in the proper position when I get there. So probably 3 min all told. 
    I promise it will get faster. Don't worry! My arm was sore the first time too. But now it is NOTHING.

    And so far, after 4 days, no noticeable side effects at all. We'll see how it goes from here.

    Good luck to everyone. We will press on through September together and by mid October many of us will be finishing up. We will cheer each other on and celebrate our milestones.

    Glad you are here!

    Amy

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited August 2009

    ljh58 - I spoke with my rad onc today about the study you found re: wine & rads. He said it was in the journal he normally reads but just hasn't gotten around to it. He said after our visit he would go read the article. He basically gave me his blessing because it was the Journal of Radiation Oncology Biology Physics. He even said two glasses would be ok...I knew I liked that guy the first time I met him. :)  Although, my onc said no more than one glass a day and I can live with that.

    Also for those of you on tamoxifin. He indicated old studies showed that tamoxifin interfered with rads. But he said more recent studies indicate there are no adverse effects combining the two treatments. So he also said to keep taking my tamoxifin.  

    I am 8 rads down 25 to go. I'm even getting use to the aquaphor. I use it at night with my special sleeping shirt so it doesn't get all over the sheets.

    The sim and first treatments are the longest. After that it goes very fast.

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  • caphan
    caphan Member Posts: 23
    edited August 2009

    Shelly~ The surgeon said I didn't have to do any other treatment just follow-up with regular mammos.  He told me they actually got all the cancer with the biopsy and the lumpectomy was to remove all the surrounding tissue to make sure I had clear margins; which I did.  But, he recommended seeing a med. onc. as a follow-up.  The onc. couldn't give me any clearcut answer as to why Tamoxifen would be beneficial and actually stated she didn't know what she'd do in my shoes.  I researched it and actually the side effects outweigh the benefits in my case so I opted not to take it, but then she recommended a rad onc.  The rad onc. agreed that taking Tamoxifen is to risky for me (I had a stroke 13 years ago) but that radiation would zap any cancer cells that may be lurking--especially on/near the incision.  After much thought and research and speaking with other people who had BC, I was actually too scared not to get radiation.  One woman told me she had a lumpectomy, no rads, and a couple years down the road had BC again.  She felt if she would have had rads it would have diminished her chances of getting it again. 

     I just finished treatment #8.  Skin is holding up okay, but I feel sore from under my arm to nipple area (especially where the incision is)  I'm also getting indigestion, especially when I lay down.  Any one else have this problem?  It's very annoying.  So far though, so good.  I'm scheduled to go back to work next week and the whole "fatigue" thing has me worried.  I work with 5-7 year olds and I just can't "take it easy" when my energy is low.  I'm hoping I can work through it. 

     Take care.

    Chris

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  • SueInOhio
    SueInOhio Member Posts: 29
    edited August 2009

    Hi all!  I would also like to jump into this group as my rads will go until end of Sept. I see some of my friends from the August 09 Rads group feel the same way! The camaraderie is wonderful!

    Today was #16 of 33 for me. I am pink..not burning at all. I, too, feel that tingling when the zapping is going on...thought it was all in my head!

    I was told to pick one cream or lotion with aloe. At the drugstore, I found an inexpensive brand that makes a cream and a lotion (Fruit of the Earth). Stay with one brand because the ingredients in one lotion may react with those in another (so I am told!). If and when I have skin changes, they will tell me what to use next. So, I have been slathering on this stuff after treatments and before bed and whenever else I happen to think of it. I actually like the cream in the jar better. And, my hands are very soft now!

    I have 2 of the front closing bras from Walmart...one black, one white...Great deal @$7.00 each. Get a size or two larger than you normally wear. I also have a couple of those Barely There from Kohls. They are so comfortable. But right now I prefer the front closing ones. (Hate to admit this but I have been known to unclasp that bra on my way home from the office...Ahhh..such relief to release that swollen boob!)

    Hugs to all,

    Sue

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  • stephanie1
    stephanie1 Member Posts: 131
    edited August 2009

    Hello September Rads Group

    I just finished up AC and Taxol treatments last week and know that my next "project" will be rads starting in September. I don't have my date yet. I will be meeting with my oncologist on Monday and I am sure he will be sending me to see my radiation oncologist in the next week or so. I just wanted to get myself introduced so when I start to have questions you will know who I am. :)
    Some of the girls from the April chemo group will be joining too I assume and I look forward to talking with you all.

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  • lollys
    lollys Member Posts: 205
    edited August 2009

    Hi to all the newbies  on this site--and to all who have been on this journey since February March and April--we are all getting through this and will stay strong--I met with a lymphedema specialist just to have a base line of measurements and suggestions on ways to prevent it--I had 30 nodes removed with my mastectomy so want to try and prevent the possibility of problems she was great and suggested some arm exercises --said to do things slowly and during rads to make sure you drink a lot of water and lather up with cream all the time--avoid the sun and heat-- may need to wear a compression sleeve when I fly. so far i have been ok but we will see--there is a lymphedema thread on this site if anyone has any concerns-- starting rads this monday --just want to get it done!!!hope everyone is having a good weekend and will have a good week--stay strong--stay well Laura

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  • aris
    aris Member Posts: 124
    edited August 2009

    Betsy, I love that story. It's so nice that someone was being so thoughtful. It really speaks to how a relatively small act can truely be so kind. I'm glad you had a good trip with your husband too.

    Thanks for all the tips. What type of bra did you get? And why do I need to get a new bra?

    Get some rest, I'm sure you are tired.

    Pam

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited August 2009

    Pam - the bra I've been using most often is the front clasping Fruit of the Loom bra I got at Walmart. It's so easy to put it on and take it off. I have a soft generic sports bra that I use on the weekends.

    I've had 9 rads and just this morning my boob is red all over. Initially my scars pinked up and my nipple turned a disgusting color. I asked the rads nurse about the discoloration and she said it's normal...no worries. Today it looks like I have a slight sunburn. I've been doing ok with working full time, when I come home I'm pretty tired but it's nothing like chemo fatigue. Last night I also felt a slight tightening of the node area. Between the port hole healing up, a hot boob and hot flashes - I was up most of the night. Thankfully my dh let me sleep in until 9:30. I haven't slept that late for years. Guess I needed it.

    On the August Rads board there has been a huge discussion regarding nausea and heartburn. As some of you know I had a terrible time on AC/T with heartburn. Judy - I know you are right there with me. So I've decided not to read that board anymore. Hopefully none of the first group of us walking through rads on this board will have much to report on this front.

    I'm sticking with my glass'o wine a day...and soon the Rads will go away!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited August 2009

    I can report about the same as you, BetsyBuzz, after 5 Tx.  Luckily, I have not tightened up along the SNB/armpit area.  That area got tight after surgery, but I stretched it a lot very early on before the stitches disolved even.  (Not recommending to other here...I am impatient and foolhardy.  No need for anyone else to follow along.)  I'm just wearing my regular bra so far and it's not bothering me yet.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2009

    Well, I am sitting here wearing my new Fruit of the Loom bra as per your recommendations! Thank you so much. I went last night and bought 2 of them.  $7.50 each - cheapest bras I ever bought!

    Anyway, I have done my first 5 rads and no SEs at all that I can tell yet. So far so good! Betsy - I agree with you - I don't want to read about the nausea/heartburn stuff either. I know it can help to be prepared, but it also can make one unnecessarily fearful and anxious. So I am taking each day as it comes and seeing what happens.

    Good luck to all the new ladies starting this week. We will all get through this together.

    Amy

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited August 2009

    Hey Amy & elimar - you two sound like you started rads at the exact same time. Amy, I'm glad you liked the bras. I think they are very comfortable and you can't beat the price. I may quit shopping at Nordstroms for my bras and start shopping at Walmart. I actually had never been to Walmart before I went looking for the bras. Now I see why it's so popular. What great prices.

    I was hoping the discomfort by my SNB would subside before starting rads again tomorrow, but it still feels very tight. I think I'm going to ramp up my stretching exercises. elimar- I too started exercising right after surgery. I worked an hour in my garden today..a first after chemo. I was so nice, but I can really feel it. I guess it's a slow steady process...I just need to remember...baby steps..no need to push at this stage.

    There is a good exercise book out there called "Thriving AFTER Breast Cancer". Laura - it has an entire section on lymphedema.

    Titan- good luck tomorrow. Haven't heard from you lately...I hope that means you are feeling good and enjoying life.

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  • kawee
    kawee Member Posts: 324
    edited August 2009

    Well, girls, I guess I'm jumping over here too.  I've had 10 rads.  No sign of it on the breast, but I'm really getting tired.  I couldn't find the Fruit of the Earth brand of aloe as my onco suggested, so I called the company and she said she would let me in on a little secret.  CVS brand is really Fruit of the Earth with CVS name on it.  So I was happy to find it, thought it was nice of her to tell me.

    I wonder, once you start getting tired, does it just keep getting worse or remain about the same?  

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  • MTG
    MTG Member Posts: 646
    edited August 2009

    Hi Ladies - I guess it's time to officially join this club within a club. My simulation is tomorrow and I'm hoping they can get things started pretty soon afterwards. I just want this behind me !

    Betsy Buzz & AmyisStrong -I had to smile at your exchange about the bras. Although I'm a major fashion addict, I'm a definite Walmart fan (great exercise clothes !!!!) as well as Target shopper. In fact,  my bras are always from Target;  my friends who know laugh at me. Huge selection -  of styles, brands and most importantly, sizes (I'm a 38A or B; go try to find that in a department store. When shoulder pads were in fashion, I looked like a linebacker unless I removed them. ) and the prices are great!  Although, they dont have a very good front closing sports bra selection, Target may be worth checking out for those with expensive bras who dont want to get them greasy or potentially inked up. Personally, I'm heading down there to stock up on Men's Undershirts as my bra alternative.

    Anyway, I love the idea of having all of you ladies around for advice and companionship as we go through this.  

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  • Titan
    Titan Member Posts: 2,956
    edited August 2009

    Back from my first rad...it was so easy and quick!  I closed my eyes the whole time! 

    Haven't bought any sports bras yet...my daughter has a couple old sports bras I could throw on if I need too...I don't want that Aquaphor to ruin my clothes.

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  • brookside
    brookside Member Posts: 77
    edited August 2009

    I'm going in to see the rad onc in about 30 minutes for my consultation.  I am scared.  I know it will be a breeze.  I just hate showing my boobs to so many people as I'm a shy catholic girl (even at age 57).  I had the last reexcision July 17.  I started this mess in May.  I probably won't be done (if ever) with radiation until the end of October.  I want this done and all i ever have to do is rechecks!! wish me luck. Why am I scared?  This is a walk in the park from everything I've read here (except for burns and fatigue) 

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  • hoping4answers
    hoping4answers Member Posts: 14
    edited August 2009

    Another newbie here!  I had my first treatment today...24 to go!  I was told to wait for redness before I apply aloe vera, but that was from a nurse.  Everyone I have talked to who has actually gone through this says to do it now.  I'm headed to my support group tonight and hope to get some input from those who are just finishing their rads.

     I'm most nervous about the impact to my TE and future reconstruction.  I just keep hoping it will be like my chemo - I had very few side effects!  

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  • kawee
    kawee Member Posts: 324
    edited September 2009

    Hey, everyone, I have a question.  I'm on day 11 for rads don't see any redness, but I have a few little red raised bumps on my breast.  Whatta you think, rads or allergy to aloe I've been using?

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  • sly20
    sly20 Member Posts: 30
    edited September 2009

    Hi Ladies,  I too am just starting the radiation Journey.  Had my consult today and will have my first treatment Thursday.  I am 5 weeks out from bi mx and have TE's.  My ps and onc. think it will be fine to have the radiation with the te's since we have filled already.. We did it quick though and I am still very sore so having to lay flat on my back with my right arm over my head was very painful.  But I am so glad to be starting this that I just went with the grin and bear it philosophy.  I am going to be such a tough gal when this is all over.   I have always been the prissy sissy in my family.  Chemo really toughened me up.  Now these horrid TE's.  Thank goodness they are not permanent.  I am thankful for this site and all the ladies who share their experiences.  It helps SOOOOO much.  

    Sidenote:   I visited the Portland Oregon area 2 years ago and just loved it there.  It is such a beautiful place. 

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  • brookside
    brookside Member Posts: 77
    edited September 2009

    Hi

    I went for my consult.  I will only have 28 days because it is tomotherapy and I was told I have a boring cancer.  YIPPEE.  He told me I have a 4 per cent chance of it returning.  I'll take boring any day.  I am scheduled for the sims thing on the 8th and I look forward to ending this chapter in my life.  I thank God every day that I have this boring cancer and nothing more 'exciting'.

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  • lollys
    lollys Member Posts: 205
    edited September 2009

    Checking in with everyone--Last sim today and first rad today--glad to be done with the sims --I found it really difficult--the numbness in my arm and hand seemed to really bother me--I dont know why this is freaking me out more than chemo did--maybe because it was a choice to do the rads--anyway I had this "bolus" done which i really didnt know about--they put this fabric or telfa or something over my breast to increase the effect to my skin they will do this every other day --he said this is usual with mastectomy and is also done everyday  with lumpectomy does any one else know about this--anyhow I am lathering up with biafin and also got this other stuff called sween cream that is supposed to be good--I dont have TE-- I have implants and have prepared myself for it being totally ruined by this process--maybe I will be one of the ones that it wont  happen to --thanks to everyone about the bra advice--I have already stained my good bra with the magic markers--so now will switch to the cheapies and save the good ones--Thanks Betsy the info on the book--I will pick it up--

    Is everyone out there doing some aerobics like walking or anything --i hope to continue doing that--just still dont have a lot of energy from chemo- I did have a busy weekend though --my daughter, son-in-law and 3 grandchildren came in from AZ.. Although my daughter and son-in-law have been coming in to be with me when they could I hadnt seen my grandchildren in over 4 months--I missed them so and it was great seeing them and getting my hugs and kisses in!!! but I pooped out a lot faster than I used to --really hope to get back to my old self again!! Thank goodness for this site and all the other sites to help us all get through this--hope everyone has a good week--stay strong--stay well--Laura

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  • lollys
    lollys Member Posts: 205
    edited September 2009

    oh I forgot--i had my first glass of wine tonite in almost 5 months and althoughI dont drink often I do like my red wine!! so glad to hear we can have it!!!!

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  • Titan
    Titan Member Posts: 2,956
    edited September 2009

    Betsy...I keep asking you which one is YOU in your avator?  Hee Hee!  Anyway, I have only one radiation but it was so easy..put the aquaphor on..good to go..I don't know everyone's age here but I wouldn't worry about getting burnt.  My mom was fried a few years ago but she was 70 years old...The nurse told me that I shouldn't have any issue with skin frying due to my age...She thinks I'm young even though I will soon be 50..but seriously..the younger your skin is the better it will handle the radiation.

    The nurse also said I could go braless....I don't think so..I am not Catholic like you are Brookside but I think going braless at almost age 50 would make me go over the top....not that I'm not almost there anyway!

    Good luck to everyone with their rads....at least we get to drink wine, it doesn't take very long and we may get a tan.

    My Rad onc said my breast would get tanner, firmer and smaller! 

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited September 2009

    Titan - I'm the bald one with no bird poop on my head.  :)

    Brookside - I was raised Catholic and use to be self conscious but not anymore. I think what the heck, most of these techs have seen their fair share of boobs or lack there of. I'm sure we all look the same after awhile. They seem to be more focused on measurements then us flashing them.

    My dh wanted to know if I wanted to take a walk last night. I had already taken my bra off, as my skin is beginning to feel a little sensitive. Kawee...no dots just redness and tingling. I had my 10th rad yesterday. Anyway, he says "lets go". I say, I don't want to put my bra on. He says "then don't". I said I can't walk without a bra! I don't want to end up one of those ninety year old women with one boob hang'in at her knee. OMG...just the thought is frightening for this 53 yr old. LOL.

    Kawee - I have an allergy to aloe so I'm not using it. If I were you I would have someone look at it right away. Good luck.

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  • kawee
    kawee Member Posts: 324
    edited September 2009

    Thanks for the info on the red bumps, I see the rad onc tomorrow, I'll ask him. 

     Got up this morning feeling so tired and really achy.  Anyone else achy?  What's that about.  I guess another thing to ask.

     I don't wear a bra when I walk or around the house, never have. (guess it's a throwback from the 60's.)  I love the barely there bras.  The ones that slip over your head.  Haven't been able to find any lately (you know what they say - as soon as you find something you like, they quit making it). 

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  • Titan
    Titan Member Posts: 2,956
    edited September 2009

    Ok..I think I can tell which one you are now Betsy!  Had to take my glasses off to see though.

    #2 Zap done today...On Tuesdays we get weighed and see the doctor so it takes awhile longer...

    I have a feeling that this will be easy!  I hope so!

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  • ccbaby
    ccbaby Member Posts: 985
    edited September 2009
    Lollys....They use the bolus on me too...I have only had 3 treatments so far, but I think they have used it each time. I will ask then about it when I go in this afternoon. I looked it up on google and it says that the purpose of "bolus" is to increase the dose to the skin in this area. So, I guess that means we will probabaly burn more in those areas. That's just great...
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