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May 2020 Radiation

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quinnie
quinnie Member Posts: 113

I start radiation May 15th so thought I would start a new thread here. I have my mapping on May 7th. This is my second time here. In 2008 had radiation on the right breast for DCIS without any real problems. Some skin issues that resolved within a month or so. I had 30 treatments. This time will only have 15 for L breast IDC. RO said radiation technology has improved since 2008. Just looking forward for this all being over. Its hard enough to have cancer but during this pandemic it is more stressful. Chime in any May rads. Good luck to you all.

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Comments

  • bbbddd168
    bbbddd168 Member Posts: 14
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    starting on May, 5th, I did mapping already on April, 27.

  • texasmama
    texasmama Member Posts: 129
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    Hello! I’m scheduled for mapping on May 7. I’ll start rads a week or two after that. I’m also looking forward to this all to be over.

  • quinnie
    quinnie Member Posts: 113
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    Hi texasmama and bbbddd168, hope all is well with both of you. Good luck with your radiation. Hope you can enjoy some good weather days to get out of the house. Walking outside is so relaxing for me. I miss seeing my grandkids the most. My grandson said he can't see me until the "sickness in the air is gone". I wonder what kids think about all of this. He is almost 4. Ohio governor has issued stay at home until May 29 but we can go out to the store, etc. Still no salons! My roots are really getting long.

  • sunshine99
    sunshine99 Member Posts: 2,693
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    I had my mapping session this week and they just called to schedule the radiation sessions. I missed the call so now I'm playing phone tag. I'll be having radiation to my spine and hip. When that's finished (I believe it's only 3-5 sessions of palliative radiation), then they'll map and radiate my femur. That is supposed to be around 10 sessions. Once radiation is finished, I'll begin the oral chemo drug, Ibrance.

    Will be checking back often to see how everyone is doing.

    All the best to everyone!

  • dots74
    dots74 Member Posts: 23
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    I believe I will have mapping on May 7th. I had an appointment last month, but developed a tissue expander infection and had to go through an emergency surgery. I called to set up this appointment and they said after he decided to go ahead with the treatments they would go ahead and do my ct. is that the mapping? I’ve already had a ct to look for mets. Another question...my medical oncologist started lupron shots and letrozole last week. He mentioned I may need to go off the letrozole during radiation. Is that normal?

  • sunshine99
    sunshine99 Member Posts: 2,693
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    Hi Dots, since this is my first experience with mapping/radiation, I believe the CT is the mapping. The CT for mets was a difference procedure. For the mapping they put you on the table, and put the mesh form on you. Then you go into the CT machine and after you come out they put your tattoos on. I think they also called this a simulation session.

    Anyone else have better explanation? I didn't have radiation the first time I had cancer, so again, this is all new to me.

  • quinnie
    quinnie Member Posts: 113
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    dots74. My MO said not to start the letrozole until 3 weeks after radiation. Of course she explained why but I forgot. And yes, CT is the mapping. Have you had any SE's with letrozole? I am not looking forward to taking it but know it is for the best.

  • dots74
    dots74 Member Posts: 23
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    Thank you quinine and sunshiny99. I wonder if I should even be taking this letrozole yet? I got my first shot of lupron on Thursday. My oncologist wasn’t able to see me that day. He had already called in the letrozole so I just thought I was supposed to start it. I may end up calling the on call doctor tomorrow to see. It has already caused some significant muscle pain and tiredness.Of course, that could also be coming from the lupron shot. Who knows at this point??? I’ve had 4 surgeries due to an infection after my initial surgery on Valentine’s Day. Everything has already been pushed forward so much. I definitely don’t want to do anything that will cause me to have to wait longer.

  • callmetenacious
    callmetenacious Member Posts: 22
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    I'm going for my simulation on 5/7 and will start radiation (16 sessions) when my plastic surgeon gives me clearance. I had a partial mastectomy and oncoplasty (reduction/lift) on 4/1. I'm not sure that I'm really recovered enough from the surgery but the recommendation is to get the radiation started quickly. I have the impression that the rush is less about medical urgency for me and more about the current availability of radiation slots with a signficant backlog of patients whose surgeries have been delayed!

    Also met with the medical oncologist last week and she prescribed tamoxifen for after the radiation. I'm post-menopausal and have osteopenia so she things this is a good first choice. My tumor tested 100% estrogen positive and I had bilateral Borderline Ovarian Tumors (a form of ovarian cancer) last year so hormone therapy is highly recommended. Not looking forward to that.

    The pandemic is making this journey extra challenging for all of us!

  • ange743
    ange743 Member Posts: 69
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    Hi all. I start radiation on May 6, which also happens to be my 46th birthday. 🤪

    I will be doing 16 treatments. I am just looking forward to getting it done. 😊

  • texasmama
    texasmama Member Posts: 129
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    CallMeTenacious- Good gracious, ovarian cancer last year and breast cancer this year!! If you don’t mind me asking, do you have one of the cancer mutations? I have brca2. I’m hoping to have my ovaries and tubes taken out this summer.

  • sunshine99
    sunshine99 Member Posts: 2,693
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    Today is my start date. The scheduler told me each session would take about 45 minutes since they're doing the hip and the spine separately. I'm a little nervous since this it the first radiation I've ever had, but I expect it to go well.

    Cheers and Happy Cinco de Mayo!

  • texasmama
    texasmama Member Posts: 129
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    Sunshine99- Best wishes on your treatment today! Let us know how it goes.

  • callmetenacious
    callmetenacious Member Posts: 22
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    Sunshine99 and BBBDDD168 - Hope your first radiation day goes well!

    Ange743 - Happy birthday tomorrow! Hope you get to celebrate as well as radiate (that would sound really bizarre in any other time and place)

    TexasMama - I do not have BRCA issues. I do likely have some genetic issues that are the trigger for the cancers. I am a DES Daughter meaning that my mother took the drug diethystibesterol while she was pregnant. It was given to women to prevent miscarriage. In about 1970, daughters were found to experience abnormally high rates of clear cell adenocarcinoma. I was followed for a number of years as I showed some cellular abnormalities. By the time I was in my early 30's, I was told that all was well. Every time that I've seen a new gynecologist, I have mentioned the DES exposure and was assured that it was no big deal. Only after I had the ovarian issue did I start researching and discovered that DES Daughters are at increased risk of ovarian & breast cancer as well as cardiovascular issues. It is a poorly researched situation because it's hard to identify DES Daughters. Many women who took DES may not have remembered that they took it and never told their daughters so they were never identified if they didn't have issues in their 20's and 30's. Those of us who were identified were told to ignore it once we passed the age of issues. None of my current oncologists and surgeons are all that interested in the DES Daughter issue -- which is very upsetting! Given the pandemic, I am focused on taking care of my breast cancer and then will pursue the DES Daughter issue and connect with the researchers. I'm trying to put a positive spin on it that it didn't affect me until age 65 and I am otherwise in excellent health - some days that works better than others!

  • Pink4meAgain
    Pink4meAgain Member Posts: 18
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    I start radiation this month too. My simulation is 5/8. This is my 2nd go around with Radiation. 1st time was in 2004 to left breast triple negative IDC at the age of 33. Fast forward to today - 49 years old...Right breast Mucinous Carcinoma - Estrogen+, Progesterone + and HER2 - . Had lumpectomy with sentinel node biopsy on March 26th. Although I remember radiation the first time it was awhile back. Trying to remember things I may need now before I start but I'm guessing I will get more details during the simulation appt on Friday. Little worried about going out daily for these appts as I've been home since my surgery. Have mask and hand sanitizer...plus they let me know that they will give me that at radiation as well.

  • texasmama
    texasmama Member Posts: 129
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    CallMeTenaciuous- Wow! I’m sorry your doctors haven’t taken the DES Daughter situation seriously. Best wishes to you during your current fight and with connecting with researchers in the future.

  • bbbddd168
    bbbddd168 Member Posts: 14
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    Started my first session today. 16+4 boosts. 3D, breath holding, I feel very good actually. Breast feels a bit hot, so I have a lot cream now.

  • Tunik
    Tunik Member Posts: 13
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    Hello ladies,

    I have my mapping scheduled for May 7th and then the first session in May 18th. A bit nervous, particularly about my reconstruction, since I'm doing implants. I had my surgery on March 18th with TE placement.

    Please share recommendations from you ROs to reduce radiation SE.

  • quinnie
    quinnie Member Posts: 113
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    bbbddd How long do you have to hold your breath? I have been practicing yoga breathing and holding my breath but a little nervous that I can't hold it long enough. I see my RO tomorrow and will also ask her about how to reduce SE's.

  • quinnie
    quinnie Member Posts: 113
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    callmetenacious: My mom also took DES with my sister and she can't remember if she took it with me and my other sister. More studies need to be done with this. It is a very interesting subject. My sister has had some abnormal cells in her breasts but never cancer.

  • bbbddd168
    bbbddd168 Member Posts: 14
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    Hi dear, only hold for 4-5 times. Only one time is bit long like 20 seconds? Others are just very quick hold.

    I also checked gene and has RAD51D, one oncologist said it is associated with breast cancer but not as much as other major genes. I have family history of breast cancer and HCM heart disease also. I was told that my mother's parents married with blood relations.

    I did oncotype of two tumors actually, 1cm grade 3 one is 8, smaller 7mm grade 2 is 12( checked later two weeks later). That is why I decided to skip chemo and go directly to radiation



  • quinnie
    quinnie Member Posts: 113
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    I had my simulation today. bbbddd you were right on. I only had to hold my breath once for 30 seconds and the others were only for 10 seconds or so. They said I would be fine. I will start next Thursday the 14th. Happy Mothers day to all you mothers out there

  • texasmama
    texasmama Member Posts: 129
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    It looks like a lot of us had mapping yesterday. Mine was easy, but I realized that I’ll need to stretch my neck everyday to get ready for treatment. My neck got stiff from keeping it turned to the side. I have my dry run on the 19 and then begin 28 treatments.

  • Pink4meAgain
    Pink4meAgain Member Posts: 18
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    Well, I was supposed to have my simulation this morning. However, the doctor suggested if I wanted a breast reduction on my right side now would be the time. I had previously had a mastectomy 16 years ago on my left with tram flap reconstruction on that side 4 years ago. I was due to get a reduction shortly there after but ended up canceling due to an unexpected gallbladder removal. Decided at that time I didn't want to have any more surgeries unless it was needed. When I had my consultation with the surgeon who would remove my tumor on right breast I asked if I could have a reduction at the same time and they told me no as the margins needed to be clean. Well....5 weeks later about to start my Radiation and I may be going back in to get the reduction. Ugh frustrated but thankful she mentioned it this morning. She told me now is the time as after Radiation starts and ends most surgeons wouldn't be able to do the reduction. I wasn't expecting that this morning as I was all ready mentally for the Radiation.

  • texasmama
    texasmama Member Posts: 129
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    pink3meagain- Bummer! It is really hard to change gears like that. Good luck with your reduction surgery.

  • texasmama
    texasmama Member Posts: 129
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    A very happy Mother's Day to you! 💜

  • PMML
    PMML Member Posts: 18
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    I can officially join this thread as I got my call this morning to book my appointments starting Monday 18 May. I don’t want to do radiation. I also don’t want to take Tamoxifen. I’m at a point where I’m quite happy to just see what happens. But I won’t. I will have this damned treatment and take my damned pills and consequently take more antidepressants. I’m sure eventually life will improve

  • quinnie
    quinnie Member Posts: 113
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    PMML. I know what you mean. I don;t want to do radiation or take pills but I know it is for my benefit. Just found out I have osteopenia so will change what pill I take. Can't take tamoxifen due to history of blood clots so waiting to hear from my MO to figure out what I can take. God I sound like an old woman!! Other than all of this I am very healthy and active. I have 4 sisters who are also very healthy. My Mom had breast cancer 20 years ago and is still alive. I just got all the weird things I guess.I start radiation Thursday

  • callmetenacious
    callmetenacious Member Posts: 22
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    Just got a call that my radiation plan is ready. I go for a run-through on Friday morning and have my first session on Monday.

    Not sure that I'm really ready. I kind of feel like I'm still recovering from the surgery. Due to the reduction/lift portion, I'm still restricted to lifting 5 pounds per arm. Have a telehealth appointment with the plastic surgeon on Thursday and hope he'll clear me for activity.

    Question - what creams/lotions are you using to protect your skin? My RO said she will prescribe a steroid cream. I am happy to use it but would to also add something more natural.


  • texasmama
    texasmama Member Posts: 129
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    Tenacious- My RO has given me skin care instructions:

    When I return home from radiation, I'm supposed to rub green tea on the treated area and apply Triamcinolone cream (prescription).

    At bedtime I'll rub on the green tea and apply Oronine H (purchased from Amazon).