Summer Rads 2014

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  • ktfelder
    ktfelder Member Posts: 45
    edited June 2014

    jbokland - it looks like you have an amazing support group. Congratulations!

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    I do!!!  Thanks!

    I spoke with a friend of mine in Italy recently.  His wife just went through a BMX and they did the radiation during surgery, before they closed her.  That is her only rads.  Has anyone heard of this?

  • tekwriter
    tekwriter Member Posts: 216
    edited June 2014

    No that is a new one for me.

  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014


    It is done in this country.  I wanted IORT during my surgery but the insurance company said it was experimental.  I found 6 years of trials and my team suggested it.  Oh well.......

     

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited June 2014

    Hello ladies,

    My friend in England had the radiation and surgery at the same time and that was 3 years ago. They just popped it in and she was done so I guess they do things differently.

    My MO rang last night with my oncotype score earlier than expected so no chemo and can get on with the summer rads. We nearly didn't answer the phone when the name came up unavailable! 

    My simulation was already booked for Thursday so I don't have to delay and will be starting around the 24th. I already had my first visit and they gave me a brochure with a lot of info. and told me I should make use of the free massage and other similar things that they offer. That was weird, like going to a spa, except that its for torture. I have a sore muscle in my right arm, the treatment side so I guess I will find out how it goes with having to keep that arm up in an odd position.

    So glad to read that swimming is allowed but I will have to ask as we do not have a pool and swimming will be in the town lake so fingers crossed. I am thinking that a thick tee, 2 tees? may work to keep off the sun.

    My MO is not starting me on hormones, AIs as I am 59, until the rads are done so I don't have to see him for a while. I was so surprised by the call that I forgot to ask why I don't start them at the same time as rads but its good I guess, only one thing to deal with at a time especially if they cause joint pain.

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    lizzysmom...sunguard shirts with SPF protection is what I will swim in...I have a high neck long sleeve one from target...I will wear a 2 piece suit under it...not my usual tankini as I will be totally covered with a shirt....My neighborhood pool should be ok...I just worry about the chlorine and ph balance ...but even if I can just walk in the low end for mild aerobics on legs I will be happy for now!!  

    My MO will also wait until after rads and gynocological visit ( test to see if I am truly menopausal as I was not before chemo...54 years old)...also a bone scan..to make a decision on what drug I will be on.  Looking forward to this next leg of the journey as we will be closer to being done...for now!  Rosie

  • ktfelder
    ktfelder Member Posts: 45
    edited June 2014

    Lyzzysmom, I just finished my first week of radiation. I too found the arm positioning tortuous. The technicians suggested that I take ibuprofen well before the treatment and that has made it somewhat bearable. I also found that my hands were freezing due to numbness so now they drape my arms and hands prior to starting treatment. This has also helped.

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Ladies with arm pain: I am undergoing PT right now, don't start rads 'til chemo is done in July. I was thinking that my arm pain, tingling and numbness was one thing, but it was actually as a result of the surgeries and 'adhesions' from the stitches, among other things. If you're having arm pain, while a pain reliever might get you through, but definitely consider going to a BC specialist PT - - it has really done wonders for me. I'm getting back to having a full range of motion - I hadn't even realized how bad it was. 

    Happy weekend all!! 

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    jhodro...glad you posted this! I was just ready to call for pt before rads...start June 23...set up appointment is June 16...I am still recovering from  final chemo so not sure if I will get a session in.  I seem to have ok range of motion but my right arm is numb at top from surgery...also get webbing at times...not painful but uncomfortable...it's good to know pt will help!  I will call Monday...maybe get there at end of week if I feel strong....just so wiped out from chemo! Thanks! Rosie

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Glad I could help Rosie! I was just trying to exercise thinking it would 'go away' and finding I had more and more numbness and tingling with the slightest movement - but like you said, more uncomfortable than painful. I've been going 3x a week for two full weeks and the numbness and tingling is almost completely gone. Hope you're feeling much better soon. I just scheduled my sim appointment and it will be 7/30 if my chemo goes as planned. *fingers crossed*

  • ktfelder
    ktfelder Member Posts: 45
    edited June 2014

    Jhodro, you make an great point. My lymph node incision has not given me many problems, and my range of motion is very good. I'm sure my discomfort is from being out of shape and having to hold both arms over my head continuously for about 20 minutes. Most of my discomfort is likely due to being immobilized and poor circulation. I have considered how difficult this must be for someone who has arm pain as a result of surgery and cannot even imagine it. Your recommendation of PT is an excellent one!

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    definitely calling for pt appointment on Monday!  Mine is definitely numbness and tingling...just thought it was something I may have to live with...we are blessed to have eachother ! Thanks! Rosie

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    greetings from St. Pete Beach.  Sucking up some vitamin D and swimming in the Gulf.  First swim since surgery...the breast stroke felt very odd on my pecs!  Trying to enjoy a little outdoor time before Rads in a month. 

    It's GLORIOUS!!

  • Cannoli1
    Cannoli1 Member Posts: 49
    edited June 2014

    Hi everyone,

    Thought I would join this thread since I started radiation June 4th. I'll have 27 days of radiation. 23 days of "regular" rads, and, then, 4 days of something my RO called a "boost" around the area that my tumor was.

    ktfelder...I'm with you...the Aquaphor is out of control. The first time I put it on I put way too much on; not realizing that a little bit goes a long way!!!! My clothes were stuck to it when I woke up in the middle of the night. They also suggested, in addition to the Aquaphor, that I use 100% Aloe, so I purchased "Fruit of the Earth" 100% Aloe Vera Gel from Walmart.com.

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    jbokland....so you feel good enough to go out and swim? Yey!  You just finished chemo too... You go girl!!  Did you finish just taxol?  I just finished TAC AND IT WHIPS MY a**!!  I hope I can get to our pool next week!! Rosie

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited June 2014

    Thank you all, so much great advice. 

     I have just been checking out those shirts with SPF on Amazon.They seem to have a good selection. They are such a good idea and some are really nice even for wearing out of the water. I forgot about the bone scan. My MO did mention it so I expect that will be arranged once I see him in August before starting the meds.

     I will also make sure and take something for pain before the rad appointments. The nurse there gave me a couple of simple exercises that really helped after surgery.

    The arm pain I have now is totally my own stupid fault. Its nothing
    compared to what others have to deal with. I have been wimping around
    doing nothing much apart from work and decided that if you can make the
    effort to go swimming after chemo, I could try a few holes of golf after
    vegging. The arm was ok as I didn't have to reach up high. The golf was
    pretty bad but I needed to make the effort and exercise more.

     I can't complain really but should consider myself blessed for the cancer to have been found when it was. It was an odd chain of events that lead to its discovery and it could easily have gone unnoticed so the surgery really was not bad at all. 

    What is funny is that my husband, a 16 year cancer survivor after a recurrence , doesn't really say much at all if I mention mine BUT I went into the bathroom and there was a Toms of Maine Roll On in there. Unfortunately it was a scented one but its the thought that counts. I don't think I will tell him!

    Another totally off topic thing that happened during all this that my belief that there is such a thing as great customer service was restored! This week I got a message to call a company in California and press option 2. I realized it was the lab doing the oncotyping. I dialed the number and it said press option 2 for billing. My heart sank. What do they want? I hit 2 and the phone was immediately answered by a lovely lady who told me that the insurance company had approved the test and as I was so close to my out of pocket there would only be a relatively small payment for me, possibly nothing at all if I reached my limit before they billed. She also said that they had an assistance program for people that may not be able to afford it.

     I then asked if they knew when the test would be available to my MO as I was trying to juggle appointments based on results. She put me through to the lab after just a short hold. A gentleman answered who immediately knew who I was, who my MO was, when my sample was received, that my test was ahead of schedule and that my MO had an online account for immediate results. He then proceeded to explain the test, ask if I had any questions and tell me I could call again if I had more questions. 

    After screaming at the short term disability people who gave me the run around during the 4 days I was off work the week of the surgery this was like a breath of fresh air.  

    Goodnight all. Its like 3 am...

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    jbokland...thanks for the inspiration on getting some rays...just got back from my pool and walked, did some light strokes, leg work for an hour ( while talking to my sister...easy to stay in longer!)....legs ft like lead weight when I got out but really felt good to do something in the pool!!

    Izzysmom...was all covered up with that shirt from target....thought it would be hot but it was cool even outside of pool when wet....it is perfect...especially for rads and covering up...I felt really protected...I am going to see if they have any online...not sure how much they are....it's called  American sunshine...made in Bangladesh...90% spandex...I have big shoulders but am small framed and got a large which is perfect....tight around belly of course...not chest area as I am small!! I bet any sports shirt with spandex wi offer sun protection...here is a pic.: it is a comfortable shirt even when wet!! Rosie

    image

  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014

    Land's End has the shirts online and at Sears.  Pretty prints.  I think there is a 30% off sale, too.


     

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited June 2014

    I officially start on Wednesday.  Tuesday is the dry run.  My RO said put nothing on my skin unless he says.  Also, I was told to shower with my back against the water not to face the water.  I assume then that my RO does not want me swimming regardless of rash guard.  I'll just have to wait this one out I guess.

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    Rosie!  yeah!  Glad I could help! Yes, just finished 12 rounds of Taxol.  

    I did get too much sun this weekend.  I don't start rads for a month, good thing! I have appt with RO tomorrow, I'm sure he will not be pleased with my skin color!  I will claim it's early conditioning. 

  • mripp
    mripp Member Posts: 106
    edited June 2014

    Hi all! I will be part of this Summer 2014 rad team. My post op for lump &SNB is this Wed. Not sure when rad starts after surgery? 2 weeks, 3, 4....?? anyone know. The BS just said he recommends rad for 5.5 weeks after lump.And I dont have my pathology report back after lump yet either :(  Very, very anxious!! My best news after surgery was my SNB was negative. one other troubling thing is after my surgery the BS said he had to also remove some skin above the DCIS duct. what ghe heck does that mean? Any answers most appreciated.

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited June 2014

    Rosiesride - so glad you got to enjoy your pool. I ordered 2  long sleeved spf 50 tees from Amazon.   Got a white and a coral in large as I do not want them too tight. I should have checked with Lands end too as DH gets a lot from them. Its a gorgeous day here but he is waiting a few days to get the residents beach tickets as he turns 65 and will get the senior discount!

    Mripp, sorry you are in this anxious waiting period. I am still new to this but i am guessing that it just means that the area that needed removing was close to the skin rather than deeper in the breast as they like to have a margin of clear tissue. Its good news that your SNB was negative.

    Rads does not have to begin immediately. If they think that chemo may be beneficial they may decide to do that first. It is quite normal to wait a while for rads to start. I can only go on my experience which is rads starting 7 weeks after lumpectomy and RO and MO seem fine with that. I read somewhere that they want to start no later than 20 weeks after surgery which seems like a long time and I don't know if that is correct but there is some wiggle room.  

    Sending all good thoughts your way. Do ask your doctor for something if the anxiety is really bad. Just me personally, and others may prefer not to, but I find a low dose lorazepam (ativan) really helps and doesn't have side effects.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited June 2014

    CRAP..... Just got called. Rads machine broken so my 9:30 treatment is canceled until tomorrow.  I like a three day weekend as much as the next person but not for this esp considering that there is another 3 day weekend for 4 th of July. . I want to get it done.!! Now everything is just extended a day longer.  Would probably appreciate the. Break later in treatment but now only a week in and I do not need this now. 

  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited June 2014

    Hi all!  I've been consumed with a nice long visit from my sister and getting through the end of the school year with my kids.  So many posts to get caught up on!  I hear progress!  I have #12 today, and start my first full week.  My first 3 weeks have been partial due to starting mid-week, Memorial Day, machine repair… I'm a little nervous now to see how this week goes.  So far I've just had a touch of pink that turned to tan, some tenderness under my arm that went away after a couple days, and some weird pains through my breast.  Only using aloe vera so far.  

    Rosie & JoTro & jbokland - a super big Congrats for finishing chemo!  Not sure how difficult chemo was for each of you, but the worst of rads is so much better than the worst of chemo!  (I did meet a lady in the rads waiting room last week, who said chemo "agreed" with her, and she felt better during it than she did after it… can it be??)

    Lisa - I have to admit, it sounds like you have more marking than anyone I've read about.  I do hear variety in some of the ladies' descriptions, but yours takes the cake.  I'm sorry, I know I didn't like seeing the drawings in the mirror every day that I had the first week.  I guess each office does what they are comfortable with to make sure they line us up exactly.  I know I had to ask for my tats, they didn't offer them, which got rid of 3 of my 5 marks/stickers.  I see you already have some tats, but maybe just ask the question Is there anything I can do to get rid of some of this marking?  and see if they have any other options.  It does get harder and harder to put up with new stuff, doesn't it?  A few more weeks and we're all through the worst of it.  

    Have a good summer day, all!

    Mary

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Mary today was treatment 13 for me and my first full week due to the same issues you described! 

    No redness yet but I'm certainly feeling fatigued.  Of course that could be the tamoxifen.  

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited June 2014

    Mary, actually they were able to take away some of the markings after I asked if it was all needed. That was after I asked some of you women here if you had the same thing. They don't put anything over them so have to redraw each time. Some if you have tape or stickers over the marks? What kind? 

  • Cannoli1
    Cannoli1 Member Posts: 49
    edited June 2014

    jbokland,

    How are you doing with your tissue expanders? Mine are extremely uncomfortable...especially on the left side where I had my cancer and my lymph nodes removed. My expander is pressing right up underneath my left underarm and is very painful. Any suggestions on what you do to make yours not so uncomfortable would be appreciated. I have an appointment for a physical therapy evaluation Thursday. I hope this helps. I'm going to ask my radiologist today if it is ok if I go to PT while doing radiation since I will be doing radiation until July 11th.

  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    ktfelder and khodro

    Glad to hear I am not the only one who had problems with range of motion and pain lifting arm over head, months after surgery, as my surgeon makes it out like I am an anomaly. Granted I did not do any exercising while I was doing chemo. A week and a half ago, I could not even get my arm in position for the radiation simulation, I was in so much pain, much less hold it for 20 minutes. I had physio for 5 sessions and my range of motion is a million times better, and the pain vastly disminished. I would recommend PT for everybody who has had breast cancer surgery, especially if you are having radiation. I wish my surgeon had told me to do so a lot sooner. (However, most people seem to have no problem, so maybe I AM in the minority). Exercising on your own may help, but my therapist also deep-massages the entire chest/arm/underarm/rib area to "loosen up" adhesions from scar tissue, which made a huge difference to that tight feeling around chest and under arm

  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    deblc...I had surgery back in January and I only just now called for pt after reading posts on here!! I thought my range of motion was ok but, like you, my surgeon never mentioned it and I didn't do anything during chemo...I have my first pt appointment on the 18th but start rads on the 23rd...I hope I can squeeze a few sessions in as it seems to really have helped you and some others!! Rosie

  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    Rosie, I think the problem is, in my case at least (1) no follow up by surgeon to see where you are in your recovery (2) we ourselves do not know where we should be at a certain point in time. It was only because of radiation why I realized I needed to have immediate therapy. Otherwise, I thought I was doing OK, since I know at least two women who do not have full range of motion a year after surgery. Therapy did help me a lot, I tried to schedule it every other day, as I am very worried about delaying radiation.

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