MARCH 2010 Rads Group

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  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited March 2010

    Hi Pink Peeps.  I will go for my CT and tattoos tomorrow.  Not sure exactly when the actual treatments will start.  I hope soon as my surgery was January 8th.

    I've agreed to become part of a special study for radiation treatment.  There will be two study groups (I don't know which one I will belong to yet) and one group will have radiation to the whole breast, once a day for 6 weeks.  The other group will have radiation done twice a day but only to the affected area and only for one week.  There is enough evidence (apparently) that supports only radiating the cancer area is as effective as doing the entire breast.  I know that breast cancer research has come a very long way as a result of pink sisters agreeing to be part of a study...so here's to them and here's to this new study.  Let's hope it reveals useful data.

    Personally, I am hoping I get into the twice a day group.  It would be nice to get this all behind me and start moving forward.  I am on tamoxifen already and have not had any side effects that are noticeable.

    I will keep you posted as to how I do, and side effects etc of the radiation.  Good luck everyone.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    Linda - I was also offered the opportunity to participate in that study.  In the end I decided to go with the regular treatment.  It did sound good if you get chosen for the short arm of the study.  I figured I'd end up in the long arm and have to fill in paperwork for years. Good luck with your CT and tattoos tomorrow.  I go on Wednesday for mine.  I've never had a CT scan so I'm a bit nervous.  I hope it's not too scary.

    Sherri 

  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited March 2010

    I've had CT scans before...they are easy-peesy.  No problem-o!  We can do this easy thing.  We've already had the hard thing...like the needle in the boob for preparing for the sentinal node identification and removal??  LOL

    I was told that I couldn't drive tomorrow...and that surprises me.  From what I've been reading at our site, driving to and from radiation appts is no biggy.  I wonder if it is just for the initial one because it includes CT scans?  Or, on the other hand...maybe it's for insurance purposes and the hospital doesn't want to get sued if you have an accident on the way home after the appt.  Hmmmmmmmmmm....I wonder which one it is.... LOL

  • MarieK
    MarieK Member Posts: 911
    edited March 2010

    Linda I have driven to all of my appts including the initial CT scan, rad planning and tattooing! 

    Are you travelling a long distance to your treatment centre?  I'm driving from West Vancouver to Vancouver and it takes me about 40 - 60 minutes door to door (depending on the traffic).

    I wonder why you were told you couldn't drive?

  • Cinnamon69
    Cinnamon69 Member Posts: 12
    edited March 2010

    Hello Ladies, I am six rads in and I am so tired I could cry!  I thought the SE's would hold off a couple weeks!  I am so frustrated!  Well day one I did wake up to no power (storm), a cold and my period but I am over all that now and still tired!  Took three days to get the power back.  Rads so far are very quick and easy with no change in my skin however, the doc says by the end of this coming week that story will change. 

    Thanks for all the lotion notes, my team says Lubriderm, Dove, Neutrogena, Aquaphoe, Aloe Vera and VItamin E.  Also no deodorant though I am kind of ignoring that on the weekends.  I am using an electric razor.. hair is still growing and that is just gross.

    Have a great week ladies.  Hopefully the couch at work is comfy!Laughing

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    I'm planning to drive to my CT appointment. I told my DH to go to work that day because I found out he'd just have to sit in the waiting room anyway. 

    Cinnamon - sorry to hear about your side effects.  Well, the good thing is...the chances of having no power, etc. again are low!

    Sherri 

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited March 2010

    Starting rads on March 10. Glad to meet all of you here.

  • vitasfan
    vitasfan Member Posts: 3
    edited March 2010

    I started mid-February and will finish 3/22.  It has not been bad so far.  My skin is a little pink.  I am tired, but not sure if it is from the radiation or just life.   I start chemo 3/24.  They usually do first, but they just got me into the oncologist.  She was on vacation.  We thought I would have 5-day Mammosite radiation and be done before the oncologist, but it did not work out.  They could not put the balloon in because of a hematoma.  So now I am on Arimidex until radiation ends, then Taxotere/Cytoxan, then back on Arimidex and Herceptin. 

  • LINDAGARSIDE
    LINDAGARSIDE Member Posts: 345
    edited March 2010

    Hi there...can I ask you what is the "balloon" that is put into your breast if/when mammosite radiation is done?  What is mammosite radiation...I've heard of it before and wondered if it is what I'm going to be in a test group for.  But the balloon thing is new...nobody said anything about a balloon...yikes!

  • kmid
    kmid Member Posts: 23
    edited March 2010

    Aloha, everyone! I was diagnosed after a fairly large excisional biopsy Dec. 7.  Results Dec. 15.  Totally unexpected for all.  Had lumpectomy Feb. 5.  Went to a temporary med. onc. last week and he said 4/3 chemo, plus radiation, etc.  I was stunned!  No one had ever mentioned this. This past Fri. I got the Oncotype results from rad. onc.: 17.  Interesting that original report said Prog. 0 and Onco says 7.5/12.  Inclination is to bypass med onc. (he is leaving in 3 weeks) and start radiation. Have simulation scheduled this week.  After looking at numbers for Mar. chemo group, I am getting concerned.  Why are people with such low scores getting chemo? Trying to make a decision and am located where it is hard to even get a med. onc., but great rad. onc and center. Can anyone shed light on this?  I appreciate the support of this group.

  • kmid
    kmid Member Posts: 23
    edited March 2010

    Aloha, everyone! I was diagnosed after a fairly large excisionaly biopsy Dec. 7.  Results Dec. 15.  Totally unexpected for all.  Had lumpectomy Feb. 5.  Went to a temporary med. onc. last week and he said 4/3 chemo, plus radiation, etc.  I was stunned!  No one had ever mentioned this. This past Fri. I got the Oncotype results from rad. onc.: 17.  Interesting that original report said Prog. 0 and this was says 7.5/12.  Inclination is to by pass med onc. (he is leaving in 3 weeks) and start radiation. Have simulation scheduled this week.  After looking at numbers for Mar. chemo group, I am getting concerned.  Why are people with such low scores getting chemo? Trying to make a decision and am located where it is hard to even get a med. onc., but great rad. onc and center. Can anyone shed light on this?  I appreciate the support of this group.

  • cabmom
    cabmom Member Posts: 388
    edited March 2010

    kmid, my onco score was 19 in the gray area and I could have went either way but since I had an inter-mammary node involved but no axillary, I choose to do chemo just as a precautionary measure.  I had told myself that if I was in the bottom range that I would not have done chemo but this is totally a personal choice.  I had issues with putting all those toxins in my body but felt that I had to look at things from an OVERALL stance and that's what I did but it really is a personal decision.  I was also in my early 40's when diagnosed so I just wanted a little added insurance that this wasn't coming back but I would not agree to TC, again a personal decision and went with a chemo that is tried and true but an older version.  All the oncs want to use the new stuff, which I'm sure is fine but it only improved my numbers by 2% reoccurance and that to me did not outweigh all the negatives associated with TC so I chose based on the numbers and my feelings to choose something else.  I'm still pleased with my decision and even though chemo was not easy by any means, it was doable and thankfully OVER.  After looking at your stats.....my only assumption is the onc is basing chemo on the size of your tumor not your stage, grade and node involvement.  They could also be looking at it based on your age as well......not sure why that matters but for some oncs it does.  Good luck with your decision....I know it's not an easy one to make.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    Hi - I was surprised when my onc offered me chemo as my tumor was small and my nodes were negative.  I was also in a gray area. In the end, it was my choice and I decided to do it.  I had four rounds of TC and had no problems with it. While it's no fun, it's doable and I tolerated it well.  I finished four weeks ago today and am so glad I did it for peace of mind. Good luck with your decision!

    Sherri 

  • MaryNY
    MaryNY Member Posts: 1,584
    edited March 2010

    kmid: it seems as if you got the Oncotype score after you say the med onc. Would it be possible for you to speak with him again over the phone and ask if the Oncotype score would make a difference in his recommendation.

    My Oncotype score was 18, but unlike you I had two positive nodes and tumor grade 2, so made the decision to have chemo.

    There's a thread Oncotype Dx Roll Call Thread where people post their Oncotype scores and talk about their decisions on chemo. You may find more info there. It would be nice if you could get a second opinion but it sounds like you live in a remote area. Maybe you could discuss this with your rad onc and see if they could suggest another med onc. Maybe a phone consult would be a possibility?

  • LNFletch
    LNFletch Member Posts: 28
    edited March 2010

    To those of you who have the tatooes, what do they look like? Are they permanent? I forgot to ask these questions when I met with the Radiation Oncologist. 

  • June2268
    June2268 Member Posts: 1,202
    edited March 2010

    I just had mine done on Friday and they are so small like a pencil dot (but I guess that depends on who does them too).  I have 6 of them 2 on the sternum top and bottom and 1 under each breast and 1 on the side of each breast......pinprick, but still hurt a tad........yes they are permanent.....when are you starting?

  • april2010
    april2010 Member Posts: 21
    edited March 2010

    Hi Everyone! I have had three treatments and 25 to go. I have a question for anyone who would answer for me. When you have the actual radiation treatment. How many seconds does it last? Like for example they radiate me on both sides for about 40 seconds each side. My husband thinks that it is a really long time? He wanted me to go on the posts and ask the ladies. If anyone is willing, could you share how long the machine shoots the radiation a one time. Like on my right side it goes 40 seconds and then a short 2 or 3 second shot. Then the machine moves to the left side and does the same thing. Then I am done. I would appreciate anyone that would share their treatment with me. I know that each will be different but I am just trying to see if the 40 seconds is an exceptionally long time? Don't know for sure if that is somewhat standard? I did ask my doctors PA and she let me talk to the Physicists (? however you spell it) he said that It was a standard treatment for breast cancer. Just not sure yet. Want to see if you all are getting the same standard treatment?

  • c2will
    c2will Member Posts: 91
    edited March 2010

    Hello again.  I completed 6 of 21 today.  No redness yet, but an occasional twinge.  There is definitely discomfort when there's a little pressure now, so my sleeping positions are limited again.  I had a vacation day to burn, so this was a wonderful day for that.  Hubby and I went for a walk in the park to enjoy this early spring weather.  It's great after all the snow we had.

    Daysone - I'm not sure how long the zap is - I was thinking about that today while I was on the table.

  • TreadSoftly
    TreadSoftly Member Posts: 192
    edited March 2010

    LNFletch - I got 3 tatoos, one on my sternum, and one on eather side of my breasts.  As June2268 says, they are pencil-dot in size, I barely notice mine.  They did kinda hurt getting done, a sharp pin-prick.  And they are permanent.

    daysone - my treatment is like that too, i.e machine starting on my right side and moving around to the left.  I think it lasts approx 30 seconds, I will time it tomorrow!

    5/33 done, so far so good!  

  • MaryNY
    MaryNY Member Posts: 1,584
    edited March 2010

    daysone: I'm getting my treatment in the prone position so can't check my watch. Also didn't realize that the machine is probably zapping me from both sides. I have my head turned to the right, and can see the machine when it comes around to that side only. I asked the tech how long I'm radiated for and they said it goes by dose instead of length of time, but they said it's usually about 40 seconds. I presume they meant the total length of time. I will ask tomorrow.

    LNFletch: the tatoos are like tiny freckles. Mine didn't hurt at all as they were being applied. I really wasn't aware of where they were and still haven't thought to use a mirror to check those on my back.

  • txstardust
    txstardust Member Posts: 599
    edited March 2010

    I got my tattoos on friday, four of them.  One right between my breasts, one on my stomach, and one each on the outside of my breasts, well a little lower than my breasts but on the side.  They are very small, like the others said, about the size of a pencil point.  The one between my breasts is slightly larger, i don't think on purpose but oh well.  It didn't hurt that much, just like a hard pinch.

    I don't know how long the rads stays on - I haven't started the actual tx yet, but that's something I will ask the doc when I see him for my simulation on Friday.  It's great that you were able to talk to the physicist, I wonder how often they actually talk to patients?

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited March 2010

    to the person getting the CAT scan on Wednesday, don't worry, its not a big deal.  Unlike an MRI where they stick you in a tube, a CAT scan is more like a halo that goes around the platform you are lying on.

    I had another CAT scan today in connection with the set-up for radiation.  I also got my tattoos--3 stupid little dots.  I pushed for stars instead and tried to get the techs to admit they were bored with making dots on people but no luck.  The tattoos did not particularly hurt. I do not have lines drawn all over me---just 3 ink spots and 3 xs.  I was told that the extra ink should come off in the shower tomorrow.

    Anyrate, they were REALLY fast at looking at my results and, Lucky Me!, I get to go back tomorrow because they will need to use the breathing machine on me. . . boo hoo but not that unexpected.  Does anyone know if I will need more tattoos if I am using a different machine?

    I was interested in hearing there is a prone position.  If the prone position requires larger boobies, as some have indicated, that explains why no one mentioned it--big was Never a word to apply to my chest.  Heck the only good? part about the fact that I've gained nearly 20 lbs in the last few years is that its "poofed" out my front! Wink  For my rads, I am lying on my back with knees up and both arms above my head. 

    My first treatment is set for March 23 and the last for May 7--33 hits.  There is a lag between the start and the stop because I am going away for a 3 day weekend with my kids and didn't want to cancel it.

    And thats it. . . . .

  • SW7
    SW7 Member Posts: 12
    edited March 2010

    I was told each cancer is a bit different for every woman who gets it - . I am a 25- er  11 days in and  it's 30 sec each side. I asked the RT tech and he said it is usually less than a a minute for most patients.

    My tattoos are blue pinpoints - 2 on my sternum and one on each side. Everything was done exactly as explained to me. My RAD  room has a  twinkling starlit dome -  I get to wish on a star every day I'm there .

    I'm not slated for chemo but I am for aromatase therapy. Frankly I'm not keen on that idea. Too many issues with uterine cancer.

    I was also told I will lose a section of my lung ( the tumor was right on my chest wall) and that's  one of the  reasons for being tired. I will find out tomorrw if the RADS are causing my thyroid to malfuntion - I'm not thrilled with the idea that the RADS penetrate even into the heart.

  • LNFletch
    LNFletch Member Posts: 28
    edited March 2010

    Well, I have to say I'm a little disappointed about the tattoos. I never thought of myself as getting a tattoo, but thought if I did, it would be more fun than little blue dots!

    June2268- I go in for the planning this Wednesday.

    I also get my port out Wednesday. My skin is thin and the stitches are poking through. Wednesday will be an interesting day. I suppose any day with cancer is an interesting day.

  • June2268
    June2268 Member Posts: 1,202
    edited March 2010

    Any of you ladies that have already started rads have a loss of appetite yet?  I hear that is one of the side effects as well as tiredness and hoping since I have to go through this hell that maybe I could benefit from something....lol

    Good luck LNFletch on Wednesday!

  • judalini
    judalini Member Posts: 1
    edited March 2010

    Hello all.  Thanks for being here.  I go in for the positioning tomorrow and will begin radiation treatment on Monday, the 15th.  I'm still wondering about the option of short term, more intense radiation dosage.  I think that would mean 3 weeks of whole breast radiation followed by a boost of 5 days.  Has anyone chosen this option over the standard. Or does anyone have information/sites to help me understand to benefits/ downsides of the two options?  I am thrilled to have you as part of my support during this time.

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited March 2010

    Back from Set-Up day 2:

    I did my best to comply with the techs request to "breathe normally" while they took pictures but in as much as I don't normally have a tube in my mouth and a clip on my nose while breathing, it was hard!!!!  As it turned out, I took deep breathes when they didn't say "breathe deep" so I messed things up and we had to do another do-over.

    For the curious, no additional tattoos.  Oh and I have 4 microscopic blue dots not 3 as I originally stated.  My 10 year old daughter, after I showed her last night, was decidely NOT impressed.  Quote she "thats it?"  After this morning, I can say that I understand how the tattoos are used--on either side of the room there is a strip of red lights [think laser tag!Smile ] and they line you up so your tats are hit by the red light.

    I have my schedule for whole treatment--dry run on March 22, starting on March 23, skipping on April 2 and finishing on May 7.  At least thats the schedule as long as I don't get sick or have to miss a day.  Timewise, its supposed to take 30 minutes.  The first 5 visits are at 8:15am, the next 7 are at 8:30 and after that its at 11:30am.  This should allow me to take the minimal amount of leave because I will just go on my lunch hour.  I'm not trying to overdo but I would MUCH rather use leave to hang out with my monsters in the afternoon than on rads.

    As for appetite suppression, one can only hope Wink , right? Honestly I'm thinking any suppression might be linked to just plain exhaustion so that you find yourself skipping meals and just going to bed.

  • SW7
    SW7 Member Posts: 12
    edited March 2010

    June2268 and FYI  to share from my experience -    I dropped  3 pounds the first week and no change this past week The "healthy" anti cancer foods - vegetables like broccoli and sweet potatoes , salmon, miso soup aren't that high calorie so when I indulge in ice cream it has balanced out.  My RO said that RADS take a lot out of you  to kill the bad guys so the body is burning extra calories to repair the damages. Ironically I could stand to lose some weight - never thought it would be this way!

  • c2will
    c2will Member Posts: 91
    edited March 2010

    7 down, 14 to go.   I was down two pounds for this week's weigh-in.  I haven't had a loss of appetite, but I notice that I'm satisfied with less food.  This is a side effect that I can live with!  Wink

     A little inflammation on the incision today, but not unbearable.  The nurse noticed some swelling as well.  I was also a little tired today.  I felt like I needed another hour of sleep, but I'm not sure that it would have mattered.  I'm hoping that it's not much worse than this.

    Judalini - I am getting the shortened treatment - 16 days 'regular', 5 boosts.  The oncologist originally planned to do 25/8, however he saw no reason to go with the shortened treatment plan.

  • June2268
    June2268 Member Posts: 1,202
    edited March 2010

    Good luck Carol and SW7 and thank you for the updates!  Pretty sad the weight loss is something to look forward too......ha ha .......I am so freakin out about next week and just reading these posts really seem to help, so thank you to all you lovely ladies out there.......

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