Summer 2013 Rads

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  • sophie786
    sophie786 Member Posts: 83
    edited May 2013

    Whats the standard amount of radiation necessary?  I was told during chemo that I would be needing radiation even after a mascetomy bc of chest well infilitration.  of course the breast cancer is on left side.  a RO (family acquaintance) mentioned the IRMT technique.  I've been reading about ABC technique.

    I am wondering how much radiation I would need?  I was told 5 or 6 weeks.  Another RO told me she likes to do 7 weeks which I figure might be 33 and actually 6.5 weeks.  It really stinks this whole breast cancer.esp for a person who was otherwise healty.  I hate to take any medication and chemo has been really rough.  kind of upsetting since my daughter is graudating from HS later this month and I've been away from my family (kids ,1715,13) so I could be with family.  at the end of the day I want to do everything to avoid recurrence and be able to tell my kids that I did everything in my control.  The risks are horrible....even worse for left side breast cancer patients but what choice do we really have?  You don't want to regret not doing everything possible.  I pray to god for minimal damage and side effects....but we are all well aware that the risks are very very real.

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    Had my simulation yesterday and an ultrasound today.  The simulation went just like most, the CT scan, tattoos which felt like bee stings and pictures.  I walked out of there feeling like a piece of paper you doodle on.  I start on the 21st which is 3 weeks 6 days out of chemo. Still feeling pretty tired but also like I'm moving on

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Well, met with my RO for the first time yesterday.  He was very kind and very thorough.  Spent about an hour with me explaining exactly what we'll be doing, drawing pictures for me, etc.  I had some of the same worries as you, sophie786, since I, too, had a left-sided cancer plus I also have a history of some heart issues (atrial fibrillation).  In the diagrams that he drew for me he showed me how they can actually bend the radiation beam so that it avoids the heart tissue, which was pretty reassuring.  I wish I could remember enough to explain it well, but it has to do with these little "leaves" (I think that's the term he used?) they can open and close or adjust at the point where the radiation leaves the machine.  Plus when they do my CT scan and 3-d diagraming, they will have me hold my breath for some of the imaging to see if that helps lift the chest area even further from the heart.  If so, I'll need to hold my breath during certain parts of the radiation treatments.   He did say that it was pretty unavoidable that they'll be nicking a teeny-tiny portion of the lung, but said it's really, really rare for it to cause complications.  He's been doing it for about 30 years and has not yet had anyone have lung issues but needed to tell me it was a possibility.  

    I'll probably be having the rads for 6 weeks, but depending on what they see when they do the CT scan, I might not be getting the final few days of boost directed at the lumpectomy site.  Because of the fact that I also had oncoplasty, a lot of my breast tissue was rearranged so it might not be really clear where exactly that site is anymore, so waiting to hear about that.   I was hoping to do the shorter protocol, with two zaps a day, but unfortunately am not a candidate for that.  Oh well.

    So on the 30th I get my scan and tattoos. Yippee? 

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    One more thing... my RO told me at my first consultation I would probably be doing 4 weeks of radiation then told me two days ago that 4 weeks were coming up with more recurrence.  So I decided to research it because he changed his mind?  This is what I came up with

    http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-radiation#top

    this was updated in Feb 2013 now I'm curious why he would tell me differant

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited May 2013

    3 weeks post surgery and I think I hurt worse now then before....more feeling happening.



    Where can we learn about tattoos vs stickers, etc?



    Also...I actually will be having chemo first but not sure how much...ugh



    How is everyone doing?

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Hi ChickaD.. seems like each RO is different.. I think you have to ask them what their procedure is.  Sorry to hear you are feeling bad, I hope you feel better real soon.  Also sorry you have to go through chemo.. not news anybody wants to hear.

    Melody that's exactly how I felt too!  It took forever to wash the "drawings" off! I'm not sure why your RO stated 4 weeks... I was previously told 5 and ended up that I will have to do 6.

    Nyama, your RO is pretty thorough, that's great. 

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    Has anyone else discussed the shortened rads with their RO? I've been doing alot of research and found this article from Hopkins among many others

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/radiation.html

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Interesting article...  My RO never brought up shortened rads, it doesn't appear to say why Canadian and US are different lengths of time.

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  • AnnieLane
    AnnieLane Member Posts: 856
    edited May 2013

    I'm glad to have found this thread. I told my MO today, after four TC chemo treatments, that I didn't want to follow through with the last two he had planned. He was fine with that and I don't think I needed to do six anyway. I'll need some recovery time from last Thursday's infusion; then it's on with radiation for me.

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Hi AnnieLane.. I'm glad to hear that you are done with chemo now, that must be a relief.  I start radiation in 2 days.. nervous about it.. but can't wait to get this part over with!

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    I received the call today scheduling my first radiation treatment for Wednesday, May 15. A part of me really wants to get this over with and a part of me is quite nervous about it. I have already dealt with a lot of treatment and am going for weekly Herceptin infusions through November--you'd think that nothing could phase me at this point but it does (sigh).

    Idesim--I will be thinking of you Wednesday as we both begin radiation. Looking back, we have traveled a very similar path with this disease. The finish line is in sight, though I have been having a lot of pain from the Herceptin so the path is a bumpy one. I am now trying Turmeric to see if it can help relieve my joint pain/inflammation.

    I have permanent marker lines and criss crosses. They assure me that they can be removed in the future without too much difficulty.

    Here's hoping the next six weeks pass quickly and uneventfully for all of us.

    Hugs

    Linda

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    I had my first treatment today.. it took longer than it will everyday because they had to measure exactly where they want me and write all over my breast and chest..also they did tattoos =just dots here and there, I did say at least you could do flowers.. LOL It took quite a while getting the measurements just right and all that time, I just had to lay still with my arm over my head.. after awhile I thought my arm fell asleep - and just when I thought I can't hold still any longer, they began the treatments - 2 zaps in one direction and 2 zaps in the other direction..Going to be getting the treatments from now on early in the morning before work - hopefully after the treatment, I can put deodorant on for work.. My breast feels hot now but other than that I feel fine.

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited May 2013

    Everyone seems to be doing ok..as ok can get at this point....



    Nancy..glad you are okay and hope your hot stuff goes away quickly

    Lin..good luck tomorrow



    Peace

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    IamNancy.. congrats on getting your first one over with...big hugs....  I was dragged in twice now just to have done what you got done today and I don't get my first radiation until tomorrow.  The whole time I was laying there today, I was thinking what a waste.. I could have already had a treatment over with :(  Thanks for sharing your experience.. hahah.. my arms were falling asleep today .. I wiggled my fingers off and on to keep feeling in them, it's hard staying in one position for so long!

    Lin43.. good luck tomorrow, I will be thinking about you too.. we got this!! Big Hugs!  I feel the same way, I am scared, but I just want to get it over with as well.  I'm sorry to hear you are having trouble with the Herceptin, I hope the Turmeric works out for you and I second your motion of a quick and uneventful six weeks.

     Hubby got me this Crystal deodorant stuff.. not sure if it works so great yet.. I'll let you guys know.

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited May 2013

    Idesim...good luck tomorrow too! Hugs

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    Idesim - funny your experience was so much like mine today.. fortunately the treatment takes less than 5 minutes.. they said I should be in and out within 20 minutes.. anxious to hear how the crystal deodorant works for you - I was thinking of getting Tom's... I just can't go without anything..  :)

    Lin43 - good luck to you too..

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    Is everyone doing the 6 1/2 week treatment?  I'm seriously thinking about doing the 4 week protocol.  Monday is my first treatment, thanks for letting me know what its going to be like Smile  I've got the crystal deodorant ready to go too

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    Interesting that treatment times can vary so much. My RO currently has me scheduled for 6 weeks. As much as I'd like to shorten it I want to make sure I give myself the best odds for a life free of breast cancer. I see her Thursday and we will confirm the plan.

    Idesim--I am sending good thoughts and hugs your way. ((((Idesim))))

    If anyone had told me a year ago that on May 15 I would find myself on a table with my chest all marked up, getting zapped, I would never have believed it.

    Nancy--You are our trailblazer. Hugs to you also. My chest still feels a bit hot from nerve damage and PT. I guess rads may add to the heat, huh?!

    I bought some Tom's deodorant. It will be 100 degrees here tomorrow. I am thankful that my treatment is at 8:20am! Still, it will be a test for any deodorant. Ha!



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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    The 4 week protocol delivers the same amount of grays as the 6 1/2 week one.  You get more grays at each appt and the last week is the boost to the tumor area.  I read that if breast cancer comes back its "typically" in the same spot thus the boost. Still need to talk more about it with the RO but I've spent 3 days doing some in depth research and the results of 4 vs 6 1/2 seem to be the same.

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    I did my sim last week and got my tattoos. Since I will be getting left side radiation, we will be doing it with a breath hold technique. Basically I hold my breath at a certain level for 20-30 seconds, and it buys us an extra coupe of millimeters of room for my heart. It is actually kind of cool. I wear these glasses that are kind of like a video game, and they show me where to hold my breath to. The snorkel I have to use is not super comfortable, but kind of a minor inconvenience in the scheme of things.

    Thankfully the lump in my leg is just a cyst, and the general surgeon I saw thinks we should leave it alone since it is in a tough area to heal. Yeah!!

    Going to try the Tom's deodorant, but a little sad to not be using my Secret especially since the weather is getitng warm here. Hopefully I won't stink at work.

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  • slv58
    slv58 Member Posts: 1,216
    edited May 2013

    Deodorant recommendation, I've been using " lavanila the healthy deodorant "which you can get from sephora. I love it and won't go back to antiperspirants. It lasts a long time,I'm still on first one purchased in January, I know it's expensive, but my health and peace of mind are worth it. It really smells nice and leaves skin soft.

    Melody, please let us know what you find out about rads. I will be staring that in July and am curious as I live 2 hours away from hospital.

    Heart, good news about cyst, I'm sure you will do fine with rads!

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  • Tinkerbellzcharm
    Tinkerbellzcharm Member Posts: 4
    edited May 2013

    What a perfect thread for me to join! I finished chemo mid April but am now going to get my bilateral mastectomy in a couple of weeks followed by 6 weeks (tbc) rads beginning mid July. I'm wondering if anyone has had tissue expanders in them WHILE getting rads? I'm almost confirmed to be getting the bilateral with partial recon done at the same time so as to avoid another major surgery and being put under again.

    I've been to three plastics surgeons and two said that nothing could be done for me and I should come back in a year after all rads completed and they'd see what they can do for me! But then they didn't tell me what was available! In their opinion, I was only suited for the DIEP recon method which uses autologous tissue to transplant, however they also said I didn't have enough fat to make an "a" or even maybe a small "b" ! Im currently a DD! an "a" would not work for me and the risk of the surgery too great in my opinion. (12 hr surgery, 3-5 day in hospital stay, major scar at tummy with potential for infection, as well as rejection of skin transfer plus infection at the breast sites) i want to be smaller but not that small on my frame. This is why I reached a third plastic surgeon to get his opinion. He said my two options were to do the lat flap ( I'd rather not lose the use and mobility of my right arm and back strength), or tissue expanders where he'd insert them in at the time of mastectomies and then fill them weekly until rad are to be measured and tattooed. After all rads are done and I am 4 months minimum out of healing, the implant exchange would take place. Stretching the skin out AFTER rads is too risky. Anyone doing the tissue expander before rads method? or had this done?

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  • LakeGirl2
    LakeGirl2 Member Posts: 68
    edited May 2013

    Melody46 - would you mind sharing your research links if possible? I meet with my RO next week for the first time. Not even sure if shorter protocol is an option.

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    Here's hoping everyone's treatment went smoothly today!

    I had my first radiation treatment this morning and discovered that my RO is using bolus every time to focus the radiation closer to the surface of my skin. The tech told me the doc will stop when I develop a skin reaction. Hmmmm..... I meet with her tomorrow morning and will clarify that. There is so much to learn for all of us--first chemo, then surgery and now this for me. I am tired of the whole routine as I am sure many of you are. I was saddened to see a very sick woman in the radiation waiting area today, receiving palliative radiation for stage 4 esophageal cancer. Any time I start feeling sorry for myself I have to remember that it could be so much worse.

    I am making a special colorful calendar so I can cross off the days as I complete them. My daughter suggested that I get a little treat to celebrate making it through each day. She is coming up with all sorts of inexpensive and free ideas and goodies. So sweet. :-)

    I bet many of us are facing the choices of DIEP or lat flap after radiation. I go to MD Anderson for my care and neither plastic surgeon I spoke with will do expanders if radiation is to follow, though I have heard of it done elsewhere. I also know of women who have had DIEP and are very happy with the results but wow... the thought of that major surgery is overwhelming to me right now. I won't be facing any decision until early next year as I already had my mastectomy without expanders. The doctor left "dog-ears" for reconstruction. I feel for you,  Tinkerbellzcharm--so much to think about and tough decisions to be made at such a stressful time. I hope you get the answers you need to make the decision that is best for you.

    Heart2930--I am happy you will have a breath hold apparatus to help protect your heart. So cool! I also miss my Secret. I have Tom's and may try the Sephora that slv58 recommended. I live in the Phoenix area and we are coming up to our hottest month. At least my head with its baby hair growing in won't get cold!

    Idesim--We have one down! Check it off the calendar and treat yourself to something good. 

    ChickaD--I am still having burning two months after surgery. It may be hard to separate this from the radiation burning feelings. Sigh

    Nancy--Hope you continue to do well. I don't have tattoos but I have so many marker lines including a new red one that goes way up around the top of the chest wall treatment area. It looks like a stripe from an awful wound or something, so I am trying to wear tops that button high to hide it. Not good timing given that it is summer. Oh well...

    Hugs to everyone

    Linda 

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    Lin43 - glad it went well for you today.. my husband suggested tonight that maybe I should do a calendar to mark the days off..

    Heart - they are working with you to protect your heart -thats awesome.

    slv - wish I could use that deodorant..

    I checked again today about deodorant and the techs told me I couldn't use it at all.. 24/7... I don't see how I can do this-its summertime! gonna check with the doctor on Monday - I work in an office for heavens sake!!

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Lin43, we did it! 1 down!  I don't know what the bolus is, but they put a towel wrap on me which I'll get every other day to bring it to the skin surface.  I'm a little sore in my armpit, but no redness... they gave me Eucerin Aquaphor to use.  

    I love the calendar idea.. and it will make her feel good to plan something a nice treat for you as well as give you something to look forward to.  Hubby made me a nice pasta dinner and I treated myself to some cadbury :)

    I agree with you, when I start feeling sorry for myself, I remember seeing some women in chemo that were not doing very well at all and I've also read stories on these boards and I know things can be so much worse and if they told me that I had to do this for 5 months, then I would in the hopes I would never get to the point where it could be so much worse.

    IamNancy, I asked my RO today if I could put deodorant on after treatment when I start on mornings next week and she hesitated and said no, that the area would be too sensitive.. I don't know what the heck I am going to do... I was sweating at work today and while I didn't smell anything.. I am still totally self concious about it and can't imagine 6 weeks of this... not to mention my clothes are going to stain I am sure.. sigh... I haven't tried the Crystal spray yet, I ordered it from Amazon, I also ordered EO organic spray.  Hubby uses the Crystal solid, but I don't like it at all.  Be careful with Tom's not all of them as natural as they suggest from the bit of reading I did on them. I read somewhere just plain baking soda made into a paste, but that sounds so unpleasant.

    Tinkerbellzcharm, welcome.. you'll get a lot of wonderful information here.  Congrats on finishing chemo!  I am not a candidate for recon at this time, so I don't have much input as I haven't thought about it much yet.

    Slv, thanks for the recommondation, Sephora usually had great products, but they are pricey.  2 hours is a long commute daily, I hope you can do an alternative treatment and make it easier on you.

    Heart, good news on the leg!!  Sounds like you're in good hands and I bet concentrating on the breathing will keep you occupied during the process.. it sounds interesting.

    Well ladies, enough for me today, I am going to get some rest... have a good evening :)




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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    Well I only have to do four weeks and I'm pretty happy about it.  I told him if you think 6 and a half gives me better odds then I will happily do that and he said I didn't need to.  All  My tumor was close to the surface so he wont be going near my heart. Welcome Tinkerbellz I think there are a couple of gals on the starting chemo Feb thread that are doing tissue expanders that might offer some insight. I was told no deodorant in that armpit but I can use crystal or toms without the usual suspects and he also gave me some powder called Sween Body Powder.  I just spilled it all over my black sweater trying to smell it. Not bad reminds me of baby powder but definitely doesn't go with black!

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  • klaudiak
    klaudiak Member Posts: 25
    edited May 2013

    Hello ladies, I am starting on the 28th, 28+5. I have been reading your post and they are all really helpful.

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Hi Klaudiak.. sorry you have to be here but welcome.

    2/30 today.. went very quickly and it was so gorgeous out today, I did;t mind leaving work early.  There is a huge row of lilacs as I walk from the subway to the hospital and they smelled so good and it was warm and sunny out.  Lilacs are one of my favorites, so it will give me a little lift everyday to walk by them :)

    Hope everybody fared well today.

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    so far so good.. a little sore on my side but nothing bad...been slathering on aquaphor at night - its too greasy for daytime use :) 3/30

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