Starting Radiation in May 2017

Options
11112131416

Comments

  • ML1209
    ML1209 Member Posts: 241
    edited July 2017

    Mexicoheather - you are beautiful ♡. I started chemo just a few weeks before you, so mine is just a bit longer. Miss my long hair.

    I am having a little freak out moment. Felt a lump right under my incision today when I put the gel on after radiation. Honestly, i haven't felt around much since LX because it was swolllen and tender. I have a biozorb prosthesis and was told I would feel that, so hopefully that is what it is. I see my LEOT on Monday and she can get NP if she thinks it is somethimg.

  • Connie1230
    Connie1230 Member Posts: 192
    edited July 2017

    Mexicoheather, when did you finish chemo? Your hair is longer than mine I believe and I finished in March. It looks great! It's hard for me to tell because I have so much white in mine that it doesn't show up well. I believe I will look like a skunk because the sides are totally white with more dark hair on the back and top....sigh. This is the first time I've seen my real hair color in many years

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited July 2017

    So back from Vegas with my kids, so nice to not have to set alarm to get up for treatments. The Lymphedema place called and I have an appoinment on Thursday to see what they say about me flying.


  • LLS1993
    LLS1993 Member Posts: 7
    edited July 2017

    Hi, I hope all went well for you. It is July 16th now and I'm scheduled to see my radiologist on 8/8/17. I was diagnosed in May and had a lumpectomy and sentinel node removal on 6/29. I will most likely need 5 weeks of radiation. The thing is, my wife and I have long standing and paid for plans to vacation in Provincetown Columbus week. We have not had a vacation in 3 years and have had a very rough go during that time. I need this vacation for my spiritual well being. Do you think my doctors will consider this when scheduling me for treatments?

  • Jenmia2002
    Jenmia2002 Member Posts: 20
    edited July 2017

    LLS1993 I actually just got back from Cozumel. It was a trip that was planned and paid for before my diagnosis and my RO said it was fine for me to go. I had completed my 27th treatment out of 33 when I left. I left on a Saturday and came back Wednesday evening and went to radiation the following day. She said she wouldn't encourage me to book a vacation in the middle of treatment but since this was already planned and it was at the end of treatment it would be okay. It worked out pretty well since my 27th treatment was my last whole breast radiation and my last 6 are my boost rads.

  • LLS1993
    LLS1993 Member Posts: 7
    edited July 2017

    Thank you so much and congratulations on completing your radiation. I'm so new to this site. I'm trying to figure it out, but so happy I found it.

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    Just got home from my weekend with my now 15-month-old grandson and his parents. My DH urged me to use the cancer card and I did - asked to preboard both flights as I had just completed radiation treatments for breast cancer. The gate attendants were very nice. The young woman this morning even wished me good healing! Getting on the plane first (behind the wheelchairs) meant I got a window seat so I could protect my treated side and not risk anyone bumping into me. I don't like to ask for special treatment but I'm glad I did.

    BTW - I had a fabulous visit! Miss that little tyke already!

    MJ

  • CeliaC
    CeliaC Member Posts: 1,320
    edited July 2017

    LLS1993 - When you visit the RO on 8/8, be sure to tell them firmly of your plans. Maybe you won't need 5 weeks (i.e., 25 treatments). It took a couple weeks after 1st RO visit for work up of treatment plan, setup & "dry run" before rads started (had 16 "regular" + 4 boosts to tumor bed). With Columbus Day being 10/9, am hoping it will all work out. Your much needed vacation sounds lovely - should be a nice, quieter time to visit Provincetown.

    Gentle hugs and uplifting thoughts to all!

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited July 2017

    I'm back from my trip. It was good to step away from being a patient for a while. Tomorrow will be my first week home without an 8 a.m radiation. appointment.

    Still dealing with how to live without estrogen, but on a stranger note, I have developed...

    Pillow phobia! 33 trips in the radiation tunnel have made me have suffocation phobia. Breast cancer had multiplied the number of pillows in bed, but now, if I have my head falls between pillows during, ahem, play, I am thinking about radiation, suffocation and basically losing control! I am basically telling you this because there's not a pillow phobia thread and it's because of the emotional impact of the treatment.

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    MexicoHeather, it sounds as though your linear accelerator was quite different from mine. I didn't have a tunnel. I lay on a table and a large arm rotated over me. I would definitely not liked being in a tunnel. It's funny how different our experiences are.

    What if you get big body pillows so you can't fall between smaller ones?

    MJ

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited July 2017

    Tapper Mom Yes, that's what I have now, a big long body pillow at the top of the bed. 😀 And a little travel pillow. All is well.

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited July 2017

    Had my appointment last week with the Lymphedema specialist. I was right, I dont have lymphedema or swelling. He said the first year it can happen at any time. I have been getting a massage once a month for years, so I say that has helped me to not have any issues. He said I was fine to fly, I don't need a sleeve. He did give me a compression band, similar to ace bandage just in *case* something happens. He said it isn't the going up that causes it, it is when the plane starts preparing for landing and we are coming down. So off I go on Friday. One week after rads my skin is looking much better, A little redness and peeling still around the scar area but much better.


  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    That's all good news, Goincrazy8! I was going to ask our RO about lymphedema when I see her in a couple of weeks. Guess I'll still ask but it doesn't sound as though it's a concern for me. Glad your skin is looking better. My redness has almost completely faded. My breast has been sore the past couple of days - don't know why. I have an US on Thursday - my surgeon felt something under my arm and wants to see what it is. He thinks it's a seroma (in which case it will probably have to be drained).

    MJ


  • ML1209
    ML1209 Member Posts: 241
    edited July 2017

    Mexicoheather - maybe you should start a thread lol. I bet you would find you aren't the only one. Living with no estrogen is not fun.

    Tapper - where do you feel something? I have a lump under my incision. My LEOT felt it and thinks it is the biozorb prosthesis, but I was wondering it if is a seroma as well. Of course lumps scare me to death.

  • TWills
    TWills Member Posts: 679
    edited July 2017

    Hello everyone,

    I'm in the July Rads group but I thought I'd ask here too since y'all are ahead of us and have been through it. If I shower at night and apply any of the suggested lotions, gels or what have you, should I shower again the next day before treatment to wash them off? I've read here to not apply anything four hours before treatment so maybe that means it just needs time to absorb. My RO office gave me a sheet with care tips and what I can use but it didn't say anything about time frames of use. TIA

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    ML - I didn't feel anything. When my surgeon was checking me at my three-month checkup, he felt something. I've written before that I have a bizarre bulge under my right armpit - it's developed breast tissue from meds I took years ago. The surgeon is well aware of that but said it was something else. He wants to make sure it's only a seroma.

    TWills - my rads were in the afternoon so the RO nurse told me I could lotion up after my morning shower. Just had to have that four-hour window before treatment. So you should be fine putting your lotion on after an evening shower. Best of luck to you!

    MJ

  • RoseRN1
    RoseRN1 Member Posts: 153
    edited July 2017

    Twillis, my rads were late afternoon. I work from home, put cream on at 8AM took shower about 12 and applied cream. Took cream with me to rads and applied right after and then again before bed. Good luck with your treatment!

  • TWills
    TWills Member Posts: 679
    edited July 2017

    Thank you for the reply Tappermom383 and RoseRN1, I thought that might be the case but input sure helps. I got my Miaderm yesterday in the mail and I gathered up a few more of the suggested topicals. I'm ready to start and even more ready to finish. Thanks again y'all!


  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    Oof - I'll be three weeks out from rads tomorrow. Today, as I was riding back up the mountain from having an ultrasound in the right axillary area, I had a whole series of severe stabbing pains in my treated breast. Fortunately I was only with my DH, who ignored my jumping and exclaiming. I have no idea what that's all about.

    The ultrasound was because my surgeon felt something at my three-month checkup. Thinks it's a seroma abut he wanted to be sure. We'll see.

    MJ

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    Got turquoise highlights in my hair today to celebrate the end of rads! My DH's reaction: "Why is your hair blue?" Doesn't matter - I love it!

  • Nancy618
    Nancy618 Member Posts: 374
    edited August 2017

    MJ: I had those shooting pains post rads too and the rad nurse said that is normal and it's the nerves that were irritated during radiation coming back to life and repairing.

    However, I've got a different issue with pain. I'm 6 weeks post radiation and I've been having pain the last couple days under my incision and in my armpit. It's not a sharp pain, but more of a persistent ache and kind of a stretching feeling. If I lay on my back, just the gravity pulling down on my breast makes it hurt. I can also feel a very hard area underneath the incision running the length of it, but sort of rounded. When I stretch my arm over my head, it also hurts, as does the area under my armpit. I'm thinking I should be totally recovered from radiation effects by now.

    I see my MO next Tuesday and I still have to make an appointment with my RO in September. I don't see my surgeon until November. I'm hoping I get some answers from the MO or at least a direction of where to go, because the pain is making me cranky.

    The good news is that the Arimidex is giving me fewer SEs than the Letrozole did. I'm still having massive hot flashes, but they are lessening in number. I've also been sleeping better. I guess I just have to accept that I can only sleep 6 hours a night...which is tons better than the 4-5 of very interrupted sleep I was getting. My hips are hurting, but I don't think much more than usual. I have been taking Ibuprofen at night, which I know shouldn't be done long-term, but if I don't, I don't sleep either. Other than that, everything seems to be ok.

    It was good to catch up with everyone...will try to read more often. Summer is busy!


  • Connie1230
    Connie1230 Member Posts: 192
    edited August 2017

    Tappermom, I'd love those turquoise highlights! Unfortunately, my hair needs to be more than 1/2 inch long to have them and it's growing back very slowly. That does remind me of when I went wig shopping though. I had short brown hair (due to the miracle of hair coloring since I was 66 at the time). I tried on a long blonde curly wig and texted the pics to my 3 sons and dils. My dils immediately knew it was a joke. My sons didn't know what to say, do, or think. Instant silence. They were texting back and forth with each other wondering if I had totally lost my mind. My dils never said a word. That was the most fun I ever had with this dread disease.

    Nancy618, hope you get some answers and relief from the pain.

    As for me, I had signed up for a lymphedema clinical trial last summer and met with them again this week. They seem to think I have pre lymphedema. I have read and read and cannot come up with a single reason they'd think this. While I know he's not a pro, my husband measures my arms each day morning and evening and we can't come up with a difference. BTW, this girl doing the measuring etc., wasn't any pro either. She's been doing it just since March, isn't a nurse or anything other than a hired employee. I was visibly upset when I met with my RO after that appt. and she was clearly skeptical since her nurse couldn't come up with differences from one arm to the other. They're to call from the trial next Monday an you can bet I'll have a list of questions for them. Frankly I was too shocked to ask them a thing at the time. That was the last thing I expected.

  • Nancy618
    Nancy618 Member Posts: 374
    edited August 2017

    Connie: What does your RO say about the clinical trial? IWho thinks you have lymphedema? Do you feel comfortable going ahread with it if they aren't finding any evidence of it?

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited August 2017

    WTG Tapper love the idea. Saw MO today he wants a PET scan to see how things are doing. Kinda scared.

  • Connie1230
    Connie1230 Member Posts: 192
    edited August 2017

    Nancy618, my RO just said that if there was any, it had to be extremely minimal as she could see no evidence of it. Ok, so there's a young 20something girl who's collecting the data for this trial. I know I just don't WANT to believe I have this but I do think I have very valid reasons for believing this. The way they're measuring is pretty basic and certainly not error proof. They have what basically looks like a long white acrylic cutting board with black magic marker lines on it. They lay my arm on it and make marks on my arm and then use the equivalent of a tape measure like I have for sewing to measure my arms. However, when they lay my arm on the board, They didn't seem to have a foolproof method to assure each arm was positioned the same distance from the end of the board. That's the first issue i have. She just kind of placed it with no measuring from fingertips, wrist, or anything.....just laid it on there. Then from all the reading I've been doing, it appears that specialists in this field don't consider this tape measure reading to be accurate because pulling it a hair tighter or looser makes a huge difference and readings cannot be duplicated accurately. We've been doing the same thing at home and cannot find a noticeable difference between arms. When I read symptoms online, I don't even have a hint of any of them.

    She's supposed to be calling me this week. I intend to voice all of my issues. I really don't want to blow this off if there's any chance I do have this. However, wearing the sleeve is brutal for me as I have brachioradial pruritus in my arms which is an itching condition that doesn't have a cure. The only way I could ever wear it 12 hrs a day would be sedated. I can make it a max of 2 before it has to come off and I have to ice my arm and after 2 hrs, I'm ready to lose my mind. Generally I make it one hr. I've done 5 hrs total out of the 12 she wants. She's going to have to convince me that there's valid reasons to continue.

    I really wish I had kept my cool when she told me this. I was in such shock that every brain left my head. My husband is convinced that this is total BS and I have to admit that I really think so too. But I really don't want to be stupid about this as I know it can be a serious condition.

    I expected to be done and only worrying about this BC returning which is a real possibility with triple negative.....not lymphedema and neuropathy. I really try to keep my spirits up but this just really bites.

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited August 2017

    Connie, I do not have any signs of lymphedema nor any swelling or symptoms after LMX in Dec. with 12 positive nodes. I asked the surgeon about a sleeve, because a friend got lymphedema after BC. He said I wont need it. Use arm as normal. From day 1 after surgery I have had same ROM. Had Radiation, told the RO I was going to be flying, did I need a sleeve. Again I heard it may come later. She sent to a specialist. I told him I have no symptoms etc....I am going to fly and I want to be prepared. So he took a tape measure and measured my left side. He asked if I was R or L handed...I said R....he said in that case there should be a small difference on the R because that is my dominant side. He took several measurements and compared...He was correct the R side was a small difference bigger....NO sleeve needed, but he gave me a compression wrap, like ace bandage and showed me how to wrap IF anything happened on my flight....I have been on 4 planes up and down and I am home 2 days.....Not one issue....

    your comment: they think it is PRE lymphedema reminds me of my doctor saying I am PRE diabetic....aren't we all PRE till we have it?

  • Elastogelgirl
    Elastogelgirl Member Posts: 200
    edited August 2017

    sleeves! I complained heavily about the lymphedema sleeve choices! I don't have lymphedema this is just for prevention and pain. Finally my pt suggested REI bike sleeves. I love this option! I bought it really tight and had to carefully snip into the top band in a little zig zag pattern to loosen it. This because I wanted the sleeve tighter everywhere else.

    This one was...Ten bucks on sale. Make sure it's tight. I bought a co-op brand one and it's way too loos

    image

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited August 2017

    Elastogelgirl, the guy who helped me at the Lymphedema clinic wears one on his r arm, he got his at big 5. Said just make sure not too tight if I needed one. Love the design

  • Hanging_in_there
    Hanging_in_there Member Posts: 226
    edited August 2017

    Connie1230 - I have a lymphedema sleeve, just in case. I wear it for exercise and for traveling a long time in car and eventually a plane.

    But I had my arms measured before surgery. Here is how you can keep up with knowing if your arms are changing. I finally asked Lymphedema specialist how she determined where to measure. She said (taking a metric measuring tape). Start at the wrist where the bone sticks up. Put a mark every 10 cm all the way up the arm. Then measure at those places. Compare 1) other arm 2) past measurements of the involved arm.

    I asked the an appointment with the Lymphedema specialist on my own, I just wanted to be ahead of the game. I don't think I have lymphedema either, but I want to prevent it.

    Elastogelgirl - so you mean you cut it toward the armpit?


  • Elastogelgirl
    Elastogelgirl Member Posts: 200
    edited August 2017

    hanging in-the sleeve was too tight at the band. So I carefully cut slices the elastic that holds it up. I did not cutit entirely just made cuts to get it to stretch more.

Categories