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January 2021 Radiation Club

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My radiation is scheduled to start January 21 with simulation and the actual actual treatments will start January 25. The plan is to do hypofractionated radiation over a 3 week period with 4 boosts to lumpectomy sight the next week. I am definitely nervous and anxious because they plan to radiate the lymph nodes even though they were clear. My concern is lymphedema and all that it involves. I will be doing it at the Mayo clinic in Rochester and I was told that I could take advantage of their lymphedema clinic if I feel any fullness at anytime. So I am thankful for that. Prayers for all who are heading into this next course of treatment. Lord does it ever end?

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Comments

  • harley07
    harley07 Member Posts: 320
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    Hi Iamloved

    I will have my simulation on January 8 and once that is complete the treatments will be scheduled.

    I must have a Covid test today and then isolate at home until the appointment on Friday. I've asked if another Covid test will be needed prior to treatments and if I must isolate for the entire time however I have not received an answer.

    I will, of course, do as instructed although I had planned to continue working in the office during radiation treatments. I am.curious how other facilities are handling the Covid situation?

    Best wishes to you during treatment

  • mindig66
    mindig66 Member Posts: 41
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    Hi there! So glad to see this group! I’ve been reading but not posting. Lots of great info and encouragement out there.

    I am set to begin radiation next week. I had my simulation/mapping done yesterday and that went well. I am ready to get these sessions going. I know I will do 33 of them but really unsure of the details other than the area that will be done.

    I had a mastectomy in August and reconstruction. I finished the 4 rounds of CT chemo and after radiation I will be on hormone blocking drugs for 5-10 years.

    For what it's worth Iamloved - my RO was discussing with me that when I had cancer in 2003 and at that time I had 2 positive nodes (1 this time) that protocol was not to do radiation unless there were 4 or more. He said they standards are changing and now they do it if you have 1 positive. He believes a day will come when if you have BC and no nodes you'll still be encouraged to have radiation. So, your treatment lines up with that.

    I figure I want to throw every weapon possible at this!

    I'm ready to get it started and praying for minimal to no side effects! I'm glad you started this group!


  • iamloved
    iamloved Member Posts: 197
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    MindiG66 and Harley07 Well we will definitely be able to compare notes during our treatments. As far as covid at Mayo I had to have a text before surgery but they did not schedule one before my simulation. They go through the usual questions when you enter the buildings and you just go about your appointments. My husband was able to be with me at the time of surgery so that was nice. And the lym is h node seems to make sense. The radiation oncologist said it is to get any cancer cells that might be just too small to detect. What the heck...I am this far in I might as well finish strong. I say finish because I am about 80% sure I am not doing hormonal therapy. Going to really research it during my radiation vacation😜! Best wishes and prayers for both of you as we head down this path.🙏

  • mindig66
    mindig66 Member Posts: 41
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    Iamloved - definitely good to have others walking the same path at the same time! I didn't have to covid test before simulation either.

    I was prompted (internally with my own thoughts) to call my surgeons office yesterday. My husband had mentioned few weeks back that I was to get in and see him tho he didn't remember why. Thought just to touch base. Anyway, I called and his asst said he likes to see his patients after chemo before radiation. So I am seeing him Tuesday and he will either confirm what the plan is or adjust it. Either way I have full confidence in whatever he says to me! I am thankful for another great set of eyes on my case to make sure we are doing everything we need to and the way we need to! I'll update after Tuesday.

    I'd love to know your thoughts and info on the hormone therapy. It never really dawned on me not to do it, but I am always interesting in information! Also, I see you had 2 dx. Is yours the same type tumor?

    Mine are completely different. In 2003 it was ER- and Her2nu+. This tumor is ER+ PR- and Her2nu-

    Harley..hope you will update after your simulation!

    Keep fighting! Finish strong for sure!

  • iamloved
    iamloved Member Posts: 197
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    MindiG66...I have read a lot of stories of women who struggle on hormone therapy. With a history of psoriatic arthritis I am very concerned. I want to work my Naturopathic dr on the hormone issue. I know our bodies need estrogen and to shut it off must have consequences. Yes my cancer was the same type. Triple positive. It was a very large tumor that some how...in my opinion was missed the first time. I do not dwell on that. It is gone now so yeah!;

  • harley07
    harley07 Member Posts: 320
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    I am also strongly considering not taking an AI. I'm post menopausal and have osteoarthritis in my knees and back so I am concerned about the AI side effects of.osteoporosis and joint pain. I used the PREDICT calculator suggested by Beesie and it indicates an AI won't have much impact in terms of the years I live. I do realize I'm risking a recurrence but I'm comfortable living with that risk

  • mindig66
    mindig66 Member Posts: 41
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    Interesting that you're both considering not doing the AI! I am going to visit with my Breast cancer surgeon Tuesday to confirm the plan for radiation - I trust him and am thankful I can get his eyes on it to make sure he agrees with the plan and I will also address AI and get all his thoughts on it as well.

    I am a big proponent of naturopathic options and try in so many areas to go that route! Doing chemo and radiation goes so against that train of thought! But, I'm 54 and this is my 2nd cancer dx and I want to do any and all - including naturopathic options!

    I am like you - can't look back and dwell. I wanted a double mastectomy first go round to eliminate the stress of mammograms and another dx but didn't and here we are. But, we just don't know that making diff decisions would change anything anyway. So, can't worry about it. Gotta play the hand.

    I need to look at the PREDICT calculator.

  • iamloved
    iamloved Member Posts: 197
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    MindiG66...Absolutely gotta play the hand. I know people have asked me why I just didn't have a mastectomy the 1st time and now with the 2nd dx why I didn't this time. My breast surgeon both times along with the primary doctor both believed the lumpectomy was the way to go. We live with our choices. Are they wrong? No one knows but worrying if I made the right choice serves no purpose. I am trying to live in the present.

  • dockmur
    dockmur Member Posts: 2
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    I had my simulation done last week and am waiting for the scheduler to call with the date I am to begin radiation.

    I decided to have a bilateral mastectomy instead of a lumpectomy to reduce the chance of cancer coming back and to eliminate the need for radiation therapy. But that is not how things panned out. The final pathology report showed some cells in 1 of the 2 sentinel nodes that were taken during surgery. Again, I am shown that I am not the one in control.

    I will start my therapy soon. I too, pray for minimal side effects for all of us! I am thankful to have a group to walk through this with!

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48
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    Hi Ladies! :) Mind if I join with you guys in January? I'm in the December group too, as I started my radiation treatments on 12/8, but I still have a ways to go as I don't finish until 1/21. I have 9 more treatments to go and I'm so looking forward to finishing!

  • mindig66
    mindig66 Member Posts: 41
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    Hey there Mama2Four - I also have 4 kids! Almost all grown now, some how :/

    How's radiation been for you? I'd love to hear some feedback! I have had my simulation done but am meeting with my surgeon Tuesday to get a confirmation that he agrees with the number of treatments. I think he was thinking 3-4 wks and the RO said 33. I'm great with whatever is best and hopeful side effects are slim to none!

    Glad you're here! Well, you know what I mean - wish none of us were on this site but sure am grateful for this community and all the great info and support!

    Mindi ~

  • mindig66
    mindig66 Member Posts: 41
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    Hey Dockmur~ Sorry I didn't read up far enough! Welcome! I also had mastectomy and knew I'd need radiation due to the 1 positive node. I'm glad for all the weapons to fight the beast from every rearing its head again!!! I had an Oncotype of 23 so fell in the grey/unknown benefit group but my Oncologist and my husband and I thought it best to take the chance! I sailed through chemo and glad that's done - ready to begin the radiation and settle in to some 'normal' again!

  • harley07
    harley07 Member Posts: 320
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    Mama2 - any feedback and tips from your experience is most welcome. How are you feeling at this point?

    Dockmur- Welcome!

    From my side, I had the simulation today and was in and out of the building in 40 minutes. My RO recommended an accelerated radiation schedule of only 5 treatments of partial breast radiation. I start on January 19 and will go every other day. While I appreciate the short time frame, I’m a little worried that it won’t be sufficient especially because I’m not planning on taking an AI. I’m guessing the RO’s decision is based on the fact that it’s an early stage cancer and I’m 63. Fingers crossed.



  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48
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    Hi Ladies! Radiation has been fine for the most part. The going there ever day has been probably the most annoying part thus far 🙄 And I'm rather lucky because the center is only 20-25 minutes away from home. I've been putting Aquaphor on at night and Remedy lotion on during the day since I started the treatments. Probably around treatment 15 or so I started getting pinker, especially under my breast. The RO suggested to not wear a bra. I'm working from home and I only have a small C cup size, so it's not a problem to go braless and it definitely has helped. I just wear a tank top and roll it under so there's no skin on skin contact. I am a bit more red now after this week, but it doesn't hurt really...a little itchy maybe. My nipple is very sensitive and a little swollen and I do keep Aquaphor on that all of the time. I'll need new shirts after this is all done as that's greasy and stains, but it helps for sure! 😀

    I am rather tired, which seemed to start this week, so around treatment 17. But I've also been taking Tamoxifen since the beginning of December and that's definitely caused sleep issues, so I'm not overly sure the fatigue is from radiation or not.

    All in all I've found the radiation treatments completely bearable, albeit time consuming. I hope that helps ease your minds a little 🙂 Just buckle down for the next several weeks and just do this step and get it done and over with! And lotion/ointment/cream proactively, don't wait until your skin looks like it really needs it!

  • Glendacog
    Glendacog Member Posts: 3
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    Good Morning All,.

    Just need to vent a little bit this morning. I started radiation this week on Wednesday, just three treatments so far and I already have a raging case of radiation dermatitis. Since my lumpectomy on Nov 3, I've have had cellulitis, a seroma that needed draining, and now this! Its so frustrating because I have experienced atopic dermatitis/eczema my entire life and have repeatedly told the medical team about this, but no one really listened or prepared me that "radiation dermatitis" is a thing! Devil



  • mindig66
    mindig66 Member Posts: 41
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    Good morning!

    Harley - glad the situation went well! It's interesting and oddly reassuring to me how many variations in treatment there are! I am starting maybe a few days before you so it'll be good to see how we both fare! I'm expecting the SE to be slim to none!!

    Mama - good tips! I hear aquifor is a game changer and since reconstruction has started I could def go w/o a bra and I'm also home most of the time! I will remember the tank tip. Glad you're doing so well so far. Like you, think the time consuming part will be the thing I notice most. It's a 30 min drive to the cancer center for me but I'm not hating it! I'll stick in a good podcast and grab a sonic drink on the way home and call it a treat HA! How's the tamoxifen been for you? I will be doing Femara since I'm postmenopausal. Hoping for little to no side effects from that too!

    Glenda..I'm so sorry to hear of the dermatitis! I'm not exactly sure what that is!?! Can they give you something for that? Those unexpected bumps in the road can be aggravating! I am sorry! I'd be irritated too. Just dealing with the big stuff is emotionally draining and anything additional sometimes is just too much. Hang in there!

  • grandmaadams
    grandmaadams Member Posts: 39
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    Hello all. I am wishing you the best. I finished my rads two years ago. I occasionally post here for the ladies who are having a difficult time with radiation therapy. Most providers seems to be considerate and caring, some are not. Where I went for radiation, there was only one female radiation therapist. That machine ran for more than 40 hours a week so quite often women were in that room with only men. Once you were on the table with your arms over your head, the RT pulled your gown down to the waist, completely exposing you during setup and left you that way for your treatment. For a lot of women being in that position they feel exposed and I heard the words "on display". For women who have been sexually assaulted, being in this position, completely exposed, told "DO NOT MOVE" and surrounded by men will be traumatizing. It was for me. When I discovered the situation I broke down in tears. The only female tech was going on vacation my first day of treatment. I told my RO that even though he didn't have a gun in his hand, that's what it felt like. They delayed my treatment for a week until the female RT returned but the whole process was torture. During the delayed week I devised a "modesty band" that I insisted on wearing. It was simply a small tshirt cut so that my markings were visible. I also told my RO that if I got to the treatment center and the female RT was not there, I would turn around and walk out. When my treatment started, I was surprised to learn that the female RT would be the only one in the room with me. She exposed my right breast long enough for set up and then covered me back up. AT NO TIME was it necessary to uncover my left breast. I have to say she couldn't have been kinder but the process was definitely set up for their convenience and not for the comfort of the patient. You have a right to your personal privacy and you can stand firm without being ugly about it. You can refuse tattoos even if they tell you they have to ... you just have to be very careful with the stickers. You can refuse pictures ... even though they will tell you they have to take them. I even started taking a genie bra to my weekly RO exams. He just wanted me to open my gown from a seated position so he could look at my skin and I felt like I was flashing him. The next exam I slipped on the genie bra while I waited and then I was able to pull aside the elastic without being overly exposed.

    EDIT: I wanted to add that you also have the right to not have "extras" in the room if it bothers you ... students or any observers. You definitely have the right to not have people strolling into the simulation or treatment room delivering folders, etc. You have a right to your personal privacy.

    I have read posts that ladies have been advised to leave their modesty at the door or that "they see boobs all day long". Please be kind when some of us post about how uncomfortable we are. Thank you and good luck to all of you.

  • grandmaadams
    grandmaadams Member Posts: 39
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    To Harley07. I am postmenopausal and have osteoarthritis in my knees and shoulder. I started with Anastrozole and was tormented with insomnia. They changed me to Letrozole which I've been taking for two years. Luckily so far I haven't had any side effects and it doesn't seem to have effected my osteoarthritis at all. BUT everybody is different.

    Neosporin with pain relief ... I rubbed a little on that crease under my breast where I had the worst skin reaction and it helped tremendously.

  • harley07
    harley07 Member Posts: 320
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    Glenda - radiation dermatitis sounds miserable. I hope you get some relief very soon. Keep us updated on how you are doing.

    Mindi - I'm hoping for slim to no SE's for everyone. Fingers crossed.

    Grandma - what a difficult situation. Glad you stood up for yourself. During simulation, both techs & the RO were female. I'm hoping that continues. Thanks for positive news about the AI. A friend started on AI and is experiencing nausea - I didn't realize that was even a side effect.



  • mtspacekace
    mtspacekace Member Posts: 123
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    Hi ladies, it looks like I get to join you this month. I met with my radiation oncologist on Friday, and he said considering my age, type of cancer, I still had 1.1 cm of cancer left after chemo, and it was very close to the skin (less than 1 mm) he was recommending radiation. He also stressed it was my choice. But I’m going to throw everything at it...I don’t want to have any regrets down the road. He did mention radiation could cause problems with reconstruction, as I have tissue expanders in. I’m hoping everything goes well and there are no issues.

    I will go the 20th to get set up, and should start on the 25th... he is recommending 5 weeks, but said there is a trial going right now and people are only doing 3 weeks...is anyone doing this?

    He can’t give me much info or stats, he said my case is fairly rare and not many are in this situation...it makes me worry a bit.

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48
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    Glenda - ugh, I'm so very sorry to hear about your skin problems so early on. That's a tough thing to deal with! I know some of the ladies in the December group had some issues and their RO was able to give them a prescription that seemed to help a lot. I had a seroma that needed to be drained twice and it was painful for sure. I still have a little swelling, especially after radiation started, but not like when the seroma was full. Hang in there...I hope the RO can give you something!

    Mindi - Glad the hear you have a shortish ride too! I usually make personal phone calls on my ride. Between working and the 4 kids I'm rarely alone enough to have a 15 minute chat with my family without hearing "Mama, mama, mama!" the minute the phone touches my ear 🙄. The tamoxifen is ok, not terrible. I didn't feel well the first couple of days. It does affect my sleep, but I'm hoping that it's partially the radiation fatigue and that it will go away eventually when I stop that. I'm also a little more cranky/emotional...but that could be the fatigue too. I'm very interested to see how I am on it after treatment. I have a MO appointment on 1/19 and he wanted me to make a decision on ovarian suppression or oopherectomy. I'm going to do OS for about a year I think and then oopherectomy once my littlest guy doesn't want to be picked up so much. So not sure how the side effects of OS will factor in with the tamoxifen 🤔

    Grandmaadams - ugh, I'm so very sorry about your difficulty with radiation. I'm glad you shared your story though, as I think that will offer validation to others going through treatment.

    Mtspacekace - welcome! I'm doing the traditional 6 weeks of radiation, so I can't help you with the 3 week one. I know in the December group there were women with shorter treatment lengths though...pretty sure someone had 15 treatments, which would have been 3 weeks, so maybe pop over to that forum and see if there's any insight.

  • brittonkb
    brittonkb Member Posts: 81
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    Hi Ladies! Looks like I'll be joining this group. I went for my simulation/planning this past week and will start radiation January 20th. I will have 25 treatments. There won't be a separate boost, this is built in throughout the 25 treatments. I'll be traveling 2 hours each way so still figuring out how much we'll drive back and forth, vs staying at a hotel. My treatments will be at noon each day so I can leave after my kids (teenagers) head to school.

    I will definitely be taking an AI due to my age and very high percentage ER+. I see several are potentially not doing this, but for those who are ... did you start taking it during radiation or are you waiting until radiation is complete? I meet with my MO this Tuesday and this is one item I want to make sure we discuss.

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48
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    brittonkb - I started tamoxifen 5 days before radiation started. Not an AI, but hormone therapy nonetheless. I'm questioned my MO when he told me to take it before radiation and he said that I shouldn't have side effects from it until about 2 months in since I'm younger (40). I had some side effects right away though. Nothing so bad that would deter me from continuing to take it, but adding to the radiation side effects makes it not too much fun. I guess it really depends on your tolerance for side effects if you're wanting to double down on both AI and radiation. Very doable IMO, but then again everyone's reaction is different.

  • grandmaadams
    grandmaadams Member Posts: 39
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    brittonkb - I started Anastrazole a few days after radiation was over. My RO said they usually advise to wait a week but I had minimal SE with the radiation itself. Immediately hit with insomnia. We gave it a bit to see if I would adjust then changed to Letrozole. No noticeable SE. Two years later I'm not noticing any issues and I am having an annual bone density test to make sure.

  • mindig66
    mindig66 Member Posts: 41
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    Good morning!

    Looks like a few of you are younger and wanted to encourage you! Don't let the fact that I'm dealing with cancer again be a discouragement! I was diagnosed at 37 with ER/PR neg and HER2nu+ in 2003 and had 4 children under 11. I did 8 rounds of chemo and a year of Herceptin. Though I had 2 positive nodes they did not radiate at that time as it wasn't standard of care. Glad that has changed!!!

    I had 17 healthy, cancer free fantastic years and expecting to double that going forward! I'm 54 now and want to live long - as all of you do as well! Thankful for advancements in treatment/cure and health!

    This has been what they call as 2nd primary- never knew of such a thing - completely different kind of tumor, but not a recurrence. This one is estrogen positive. Either way, it's been annihilated and while I hate it, I'm so glad to have all these weapons to fight it! And beat it! So, keep being strong!

    Grandma...thank you for sharing! I have to admit tho the 2 doing my simulation were female, it was a very vulnerable experience and I remind myself that the actual radiation will be quick and I'll be out of there!

    Harley...definitely praying for this group to have little to no side effects!

    Mtspace....curious if you don't mind sharing - so much I don't know/understand about cancer. Looks like you had mastectomy so wondering how is there 1.1 left? How do they know that and why didn't surgery remove that?? I may have more info on the 3 wk after Tuesday. Originally, my surgeon and my oncologist mentioned 3-4 wks of radiation. Then when I saw the RO, he said 33 treatments. I am seeing my surgeon on Tuesday to get his confirmation and such - I trust him so much and glad I can have another set of eyes to confirm or adjust treatment. It is hard to feel like you're 'rare' - I definitely felt that way in 2003. No groups like this, I knew no 37 yr old with cancer like mine (her2nu+) and I felt very alone, very scared and shaky! So, glad you have this forum and so much good info and support! Glad we all do! Don't let your thoughts destroy your peace of mine! :)

    Brit - welcome! My oncologist said I will begin AI (Femara) after radiation. But, like all of this, they are dealing with us individually. Glad you have a meeting set up and can get clarification! Be sure to let us know what you find out.

    Did any of you do Oncotype? I did. Mine was 23 and I fell in the gray area of it. They know 10 and under don't benefit from chemo. 26+ do and so we took a chance that it would be of benefit and I did 4 rounds of CT.

    Have a great day!

    Mindi

  • Glendacog
    Glendacog Member Posts: 3
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    Thanks for the support everyone - both my stress and my skin are better today! And thanks to everyone sharing their stories,

    For those who don't know, dermatatis is a rash that is both uncomfortable and itchy. I was instructed to use aquaphor as my skin treatment and it is possible that I had a reaction to it because it does seem uncommon to get radiation dermatatis after only 3 treatments. I have prescription steroid creams since I have suffered with this condition my entire life and it helped a great deal, the rash is already almost completely gone and I will not use aquaphor any more.

    Regarding hormonal therapy, I was also told that it would not start until after radiation. Grandma, thanks for sharing about your experience - I am a little nervous about the SE, particularly insomnia. I'll keep that in mind and push my MO for alternatives if that starts and does not go away quickly.

  • aviva5675
    aviva5675 Member Posts: 836
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    Just reading all your guys info. Ill have my lump removed this Thursday and then probably will have 3 weeks of rads. They will let me know. My tumor this time is also a new primary, 7 years after my original dx. First onco said Ibrance and FAslodex forever, just watch if tumor shrinks. New onco couldnt believe it and said lets get it out and get 'cured', so surgery and rads. Not too worried about either after what I went thru originally. Probably also Aromasin for at least 5 years. Not too horrible reaction to either the 5 years of Anastrazole or 7 months of Ibrance and Faslodex. Hopefully not bad se on Aromasin. My original oncotype was a 2. This tissue will also be tested.

  • iamloved
    iamloved Member Posts: 197
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    Glendacog...So glad to hear you are healing! My RO office said they would be prescribing the steroid cream right away. I have had psoriasis on and off in the past.

    grandmaadam…As a survivor of childhood sexual abuse, your account really hit home for me. At my first dx in 2018 I had a horrible experience with an ultrasound. I could not stop crying and the although the tech was a woman, the room was dark and I felt very vulnerable. I explained to her why I was crying and having trouble laying still. She was sympathetic and tried to complete the ultrasound quickly. I asked if my husband could come into the room and she said no. After the ultrasound was over, I met my husband in the waiting room and cried more. Later when relaying the episode to my primary Dr she prescribed some xanax for future tests. It has helped some. I asked that my history of abuse be noted in my chart for future tests but every time I have an ultrasound or other test that make me feel vulnerable I have to explain it to the attending technicians. It gets exhausting. So I will go through this with the radiation techs. Hopefully not everyday!

  • grandmaadams
    grandmaadams Member Posts: 39
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    lamloved ... I am sorry for your experience and the pain it is causing you now. Before you have your simulation, have an open frank discussion with your RO, set your boundaries and be firm. They have the power to help you. I was a little surprised at their response when I told them what I would and wouldn't do. I wasn't ugly about it but their "protocols" went out the window. They accommodated me in every way. Don't hesitate to ask for female therapists for the treatment and the setup. Make sure they understand you will expect personal privacy, no extras in the room if it makes you uncomfortable. As my mother used to say "This too shall pass". I also found a wonderful cancer support therapist who helped me more with the assault PTSD than anything else. Do what is best for you. Best wishes.

  • morningstardust
    morningstardust Member Posts: 21
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    Hi everyone! I go in for my simulation tomorrow. I had physical therapy this morning (bilateral mastectomy and reconstruction on Dec. 3) and they got me all stretched out so I'd be able to put my arms over my head more easily. It was wonderful, I thought I would have to do a workout but got a massage lol. I'm anxious about radiation but also very excited to complete this last step! (Not counting hormone therapy which will be forever since I'm 35, oh well.)