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will be starting soon...now I'm nervous

Hi All. This whole thing still has me in disbelief. I seem to just be trudging along the path. and hoping. I am so very lucky, it was early, it was small, two surgeries but now have good margins. So the next step is radiation and talk to oncologist about hormone therapy? I am still learning terminology, still confused, still in a fog.

DCIS, the papilloma was positive for cancer cells. First surgery was excision to remove bad duct and take biopsy. I truly thought it would be fine. ER/Pr 100% and 95% I don't know HER. Second surgery was lumpectomy.

I had an excellent Dr for surgery. But in seeing some of these posts I am now scared abut radiation. Are the techs disinterested? Do you have to hold your breath while they do it/ Do you really blister from it/ do you lose hair?

I know we are each individual and different on this journey. But we have a common connection and it's a path others are not traveling. we're like tourists in another world...and each sees the sights in their own way.

If I googled info I get overwhelmed. so, while I am waiting for my first appointment to be scheduled...Advice? Guidance? What questions should I ask? Can I still drink my wine?

I did read the initial post about what to expect, but this doesn't seem like fun.

This whole site has been a "hero" to me. I have limited support system. I have connected with a couple of members here who have been angels. I am forever grateful.

Thank you

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Comments

  • lw422
    lw422 Member Posts: 1,399

    Starsnow--sorry you find yourself here, but then I'm sorry that all of us find ourselves here. Radiation treatment wasn't too hard for me; the most annoying part was having to travel to the medical center every day for 6 weeks. I did not have blistering or any other skin breakdown, though the radiated area did get discolored. The reaction to treatment is different for each of us so it's difficult to say how your treatment will go.

    For some zaps, the techs will have you take a deep breath and hold. At the facility I went to, there is a laser gadget that they put on my abdomen and a display where I could see when I was "in the range" for the breath. The machine would not radiate the area until my breath had my chest in the correct position, if that makes sense.

    Your team of techs will guide you through the process, and yes... you can have your wine. Good luck to you.

  • starsnow77
    starsnow77 Member Posts: 55

    Thank you IW. It's going to be a challenge as I have a hearing loss and won't hear the "hold your breath, breathe". It will be interesting

    I'll have about a 30min ride to the place. So that's not bad and it's not into the city.

    Thank you for your perspective, sharing info, and support!

    after this it will be some type of hormone therapy... so much to learn....

    we are all weary travels....

    Wishing you the best!!

  • kotchaj
    kotchaj Member Posts: 209

    Hi Starsnow77, welcome to the club that NOONE wants to be in. I had to hold my breath for my radiation treatments as it was on my left side. My skin got moist and uncomfortable after I was finished. They say that your skin will 'peak' about two weeks after radiation treatment stops. I have minimal hair growth under my left arm now. Yay to not having to shave much there. Your radiation oncologist will give you something to put on after treatment which helps with it. They all pick different things based on their own treatment plans and they all seem to work pretty much the same or close to it.

    I finished radiation in March of this year after chemotherapy and sometimes it still hits me that I went through that and still am. I'm on Arimidex for life now and Verzenio for two years. It still feels unreal to me.

    Sending you hugs,

    Amanda

  • starsnow77
    starsnow77 Member Posts: 55

    Thank youAmanda


    just knowing others are forging ahead, or have visited this place...no matter to what degree, helps. I find some strength in each response. Pretty amazing how that happens


    Wishing you the Best..and Thank you again

  • kotchaj
    kotchaj Member Posts: 209

    This place has been a wonderful addition to my treatments. I feel as if I can come here and someone "gets it" and understands what I'm trying to say. That means so very much and still does to me. We are all cheering each other on. Just know we are here for you.

    Amanda

  • spookiesmom
    spookiesmom Member Posts: 8,167

    I’ve done rads twice. Each side. Yes, the techs are uninterested, but nice. They’ve seen it all, done it all. You won’t loose your head hair, under your arm probably. It may also destroy your sweat glands. I haven’t needed deodorant in 10 years. Your RO will let you know what to use, or not, on your skin. As for your hearing loss, let Dr and techs know, I’m sure this has come up before too. Your wine should be ok, but ask just to make sure. I had about a 20 minute drive. It’s going Every.Single.Day. For ALL the zaps necessary. It’s not a one and done thing First time was 35, second was 30 for me

    Dr Google is not your friend. He is full of outdated, misinformed information about cancer and treatments. Come here, or go to reputable sites like American Cancer Society.

  • alicebastable
    alicebastable Member Posts: 1,934

    I had 33 sessions. The initial set-up takes about an hour and is boring. The actual sessions took about five minutes, maybe 10 on Mondays when I'd talk to the RO afterwards. My skin got slightly pink and dry, plus my clavicle on that side got red because I had a wider swath due to a positive node. The technicians were very professional and kind where I went, only uncovering me long enough for the daily line-up or recalibration. My place has nice thick cotton front-wrap robes, and they'd just pull it aside for the quick check, then replace it before the zapping. They'll explain everything at your initial appointment and at the set-up, and talk you through it at each session.

    I briefly stopped at a favorite park after each session, or for a treat like hot chocolate. Before the whole thing started, my husband bought me a pack of dollar scratch-off lottery tickets, so each day I'd cross the date off the schedule the RO gave me, and scratch my ticket. I didn't win anything except an occasional free ticket, but it was something fun to do. We also took lots of outings and day trips during the whole thing, like before and after surgeries, tests, and doctor visits, and a short vacation right before starting radiation. It helped tremendously to intentionally stockpile as many good memories as possible - and I remember those better than the medical stuff almost five years later. Good luck!

  • starsnow77
    starsnow77 Member Posts: 55

    Thank you! Love the idea of little reinforcers.......there is a wonderful bake shop along the route that I have to drive...that's probably not the best idea though lol Thank you all for your support this site is a sanity saver

  • quietgirl
    quietgirl Member Posts: 165

    I think whether you find the techs as indifferent depends on a bunch of things. Part of it is patient expectation and some of it is what they need to do as a job. For some techs being matter of fact might be their way of trying to make someone feel more comfortable in other words if they treat your body as if they have seen a thousand like it is it because they are indifferent or is it because they want you to feel more comfortable like it’s no big deal you are laying there partial nude on a table. Honestly I did not find my techs indifferent. Efficient yes indifferent nope. (I got a gift of chapstick on St Patrick’s Day it was so random I was trying to decide whether they picked a random day each month and give the patients something or whether they got a donation of lime flavored Burt’s bee chapstick because everyone got one)

    One thing I learned is if they offer you a warm sheet for your arms or legs take it. I think for me having the warm sheet on my arms made them less stiff from being above my head in some weird position. It also gave me something to focus on. Of course by the last treatments I also made them put on super loud music (Meatloafs Paradise by the Dashboard lights is longer then a radiation treatment but not a good choice when you are suppose to be lying still).

    Hold your breath is only if you are getting radiation to your left side (sorry I can’t remember where your surgery was). Right side there is no need for that. (Probably the other reason why I could have loud music no one had to talk to me).

    Something I wish I had known although logically it made sense. Once a week during radiation I was suppose to meet with my radiologist after treatment. Since I worked through all my treatment it meant I had to change some work things around after planing out the whole three weeks. Also half way through I had another long planning session because I had 15 whole breast sessions and then 4 targeted sessions. So they replan before the 4 targeted sessions.

    I’m just rambling now with my typical mostly useless information. Some folks have a dedicated time for their whole treatment plan I didn’t which worked out okay for me but can be a pain so see what is typical for where you are going.


    I know it seems scary and overwhelming but eventually you do come out the other side of active treatment. Doesn’t mean it stop’s completely being scary. So if you need bakery food every day for three weeks of radiation have it. Give yourself permission to do something for yourself because you do deserve it

  • josieo
    josieo Member Posts: 140

    all of these very good comments are similar to my experience. I went at the same time each morning, and on the way home stopped at the gym, so then I came home, showered, and went about the rest of my day.

    The techs at my facility were kind and friendly. They had a different music cd each morning, and I looked forward to hearing all of the different music choices.

    Once weekly I met with my RO. An incredibly smart and kind man, he was always encouraging.

    Did not lose any hair on my head, but did lose my underarm hair. My tumor was on the left side, but at my initial setup the RO checked and then decided there was so little difference in holding my breath that I didn’t need to do it.

    Driving there, undressing and then redressing took more time than the actual treatment. Because I did mine early in the day, I then had the rest of the day to do whatever I wanted/needed. My treatments were in the early summer, so weather was not a factor either.

    When I have the opportunity, I try to share my experience so those who are afraid or unsure have a resource and a comparison. This website and the comments here are great for that as well

    I was always comforted by the thought that I was eliminating “stray, rogue” cancer cells and greatly reducing my chances of recurrence. I would not hesitate to do it again if I had to.

    Courage...it will be ok.

  • veeder14
    veeder14 Member Posts: 269

    My experience was similar to Josie. I had early am appts same time each day. I walked over from the hotel to the Radiation clinic. I stayed in a hotel for a month since the hospital was far away from where I lived. The treatments were actually quick each time except for days X-rays were taken to make sure the radiation was accurately targeting the correct spots. Then just a couple of minutes longer. The RO appts once a week helped in answering any questions I had, and he advocated for me all the way through. Since I needed pain shots in order to treat my back and neck pain unrelated to cancer, he arranged for that with my primary care Dr. I had radiation on my left side but was prone on the table. My skin handled the treatments well. Make sure you follow the instructions for putting on the lotions it really helps the skin. IM sure you will do fine

  • starsnow77
    starsnow77 Member Posts: 55

    Thank you everyone!

    I kinda feel like Dorothy, in the Wizard of Oz, when they step into the haunted forest. It's scary but I feel like I have a team with me, who understands what that feels like and ..you all are truly helping me cope, be brave, and not give up. I feel like I am not walking into something blindly.....and I know I will envision each of you there with me. Thank you for sharing.

    a friend wanted to discuss all of what was going on with me. I really didn't want to because I knew she wouldn't, and couldn't understand. It's different being on the outside looking in. She was supportive in her words, which I appreciated. But for me, for now, it's YOUR words and understanding that are the light in the fog.......thank you all

    waiting for the call to schedule...I'll try to make a little routine at the end of treatment, to reward myself. I'll find what lotions I will need, and think of a PacMan battle going on inside my right side...just one little stray bad guy could really mess all of this up so go get 'em

    Please know, all of you, please know how very much I appreciate this group

  • alicebastable
    alicebastable Member Posts: 1,934

    There's a saying on this site: You don't have to be brave, you just have to show up.

    It's really that simple. Don't overthink or overplan, just go when the appointment is set.

  • maggie15
    maggie15 Member Posts: 843

    If anyone has to have radiation far from home (like over 100 miles) check with the hospital to see if they have low cost accommodation in the neighborhood available. Your doctor has to recommend you but daily radiation for a month always seems to be approved. I had a room with a private bath and there was a common kitchen and laundry room which saved on food and laundromat costs. While each room was professionally cleaned between patients as well as the common area daily, we each took care of our own space. I was teaching online at the time and my students were none the wiser. Most places are good about making appointments for a time that fits your work schedule. For those who were commuting by car there was a break on the hospital parking fees.

  • kotchaj
    kotchaj Member Posts: 209

    Starsnow77, one thing I didn't add on here, you never know how people will take it warped humor, and mine is, but here goesL

    I named my tumor Earl. If you're a country music fan and have listened to any old Dixie Chicks music, they have a song about an Earl. The song was about a bad guy named Earl who had to die. My warped sense of humor got me through every dang treatment. One day I was there and in the middle of it, that song came on the radio. I started laughing, the girls stopped my treatment and wanted to know why I was laughing, so I told them. We then ALL laughed. Use whatever it takes to get you through!


  • starsnow77
    starsnow77 Member Posts: 55

    Just got call from radiation. They can't get me in until the 30th? Is this common to have to wait 2 weeks? I don't know about others but I just want this over and done with....I know there is now rush, I guess but 2 weeks? I feel like I have to stew with this over the holiday.....I'm sorry but this sucks. Plain and simple. They said they would get me in sooner if possible. Am so ready to say the hell with it


    Thanks for letting me vent

  • maggie15
    maggie15 Member Posts: 843

    Starsnow77, I had to wait 8 weeks for radiation to start. One good thing about that was my surgery incisions were well healed. Once you start there is no problem with the individual appointments since they are prescheduled.

  • starsnow77
    starsnow77 Member Posts: 55

    Maggie Thank you Do they realize how brutal it is to be "waiting"? I swear if I was not insane before this I will be now


    I am so glad I have you guys...this is my only support and so appreciated

  • alicebastable
    alicebastable Member Posts: 1,934

    starsnow77, I had my lumpectomy on July 11, 2018, a re-excision to take care of grubby margins on August 8 (I think), a much more invasive surgery for an unrelated cancer in September, and didn't start the breast radiation until around Halloween. So two weeks is not a major delay at all. And in between all those things, I took day trips and short vacations and enjoyed the heck out of them. And those trips and other fun things like a fabulous concert (the day after the biopsy) and going out to lunch with friends (two days after the lumpectomy) are what I remember most from that year. Please try to find (or resume) the things in life you enjoy, and do some of them. "Stewing over" a short delay is a choice.

  • kotchaj
    kotchaj Member Posts: 209

    I really don't think they understand that whole waiting thing we have to do. We wait for diagnosis, we wait for the tests, the results, the surgeries and treatments.

    It's so very hard to do. Hang in there. I did my radiation during the winter months and I have an hour's drive each way to where I had to have it. I had 3 of them cancelled due to snow and ice last year. It almost put me over the edge to have to do that.

  • starsnow77
    starsnow77 Member Posts: 55

    Kotchja thank you! this has been a whirlwind....and I guess I expected it all to be like that remember I am learning this path and the confusion, disbelief, and other emotions take over. and for some reason my boob hurts today. 2 weeks past 2nd surgery...but the thing has been through a lot so...guess it's expected

    I finally had that good cry that good deep sob. I felt I had to keep a stiff upper lip...show Hubby I was strong..and positive. It finally got to me. All of it.

    each one of us is different. each has their own perspectives. Not knowing what to expect, what is happening, what is a decent wait time is not stewing..it's a mild freak out call for help for somebody to please hold a flashlight along the dark spot of this path. Because I don't know.

    Thank you friends


  • quietgirl
    quietgirl Member Posts: 165

    Two weeks is probably pretty good. Even if it wasn’t the holidays. Just be prepared that might be a lot of hurry up and wait during this phase. I think I had 2 weeks between the first meaning with the doctor and the first scan and then at least a week until radiation started because they were backlogged so yeah it’s annoying but it’s not as though they are not trying to get people in but it still is annoying. Hang in there hoping you have something fun to do during these next two week

  • margecandoit
    margecandoit Member Posts: 131

    starsnow77- waiting is diffidently the hard part. I had a 6 week wait between chemo and surgery had to try my best to keep my mind busy. I am with you with radiation wait I have my appt on wed and I am 5 week from my lumpectomy and reduction. Kinda scary but ready to get this phase in the journey done. We can do this!!

  • starsnow77
    starsnow77 Member Posts: 55

    Hi Marge..... Thanks for your comments. It's a comfort knowing others are facing, going through, trudging along with this.

    Hubby "missed" a phone call from Oncology..4 days ago! Sigh. He'll call today

    Yes, this is so tough...my mind feels like it is constantly on edge "are there lurking bad guys" in there....Let's just get this over and done with. But I am lucky and have so much respect for those going through chemo..and worse. I often struggle with feeling like i have no right to whine or complain. But still, it is cancer. I have a "smiling" boob now after lumpectomy...and I am still scared.

    Thank you marge wishing you the best

  • margecandoit
    margecandoit Member Posts: 131

    starsnow77- just had my appt with the Radiation oncologist today. He said I would need 20 treatment they Direct it so it doesn’t hit your lung and heart. Said I would get a CT scan first and then set up for me to have treatment. Around a week or so to get the CT scan and then start around mid January. One question I thought of afterwards was how he came up with I needed 20. I guess I can ask later but thought I would let you know if you wanted to ask. Back to the waiting game. Hope you are having a great day.

  • molliefish
    molliefish Member Posts: 650

    I just finished my second radiation treatment for a second primary. Some things to consider while waiting include:

    It’s not just you who is waiting - at my centre they juggle hundreds of patients while using 6 machines that run 18 hours a day. I’ve seen all the folks waiting while I’m there;

    You have to be sure your skin and scars are adequately healed before starting treatment and

    They don’t want to stop once tx has started, I.e. they want to follow the tx plan as rads continue to be effective or ‘work’ for up to two weeks after your last tx.

    There are a few other reasons and I feel our frustration, having now done 26 tx on the left and 16 on the right, you just want to get it done and over with. About 2/3 of the way through you may want to quit all together. You should also understand that 26 or 16 tx is weekdays, Mon to Fri and there maybe days missed due to machine maintenance. So 1 tx may stretch into a month, 26 tx may end up being 6 weeks. It can be exhausting and expensive. Buy a parking pass, expect delays on tx days and do your best to be patient. You are not alone. You’ll see everyone (and some of their families) who are going through the same thing. Be well, Merry Christmas

  • spookiesmom
    spookiesmom Member Posts: 8,167

    What Molly said!! I did sit there one day crying I couldn’t do it anymore. RO was patient with me, convinced me to continue. Oh, don’t party too hardy when the machine is down for maintenance 😂😂😂😂enjoy the day.

  • starsnow77
    starsnow77 Member Posts: 55

    Hi Marge Oh UGH...waiting can be so tough You feel like you carrying this heavy load and just want to set it down. I'm sorry about that.

    I go Tuesday for oncologist. not sure what to expect....just not sure of anything anymore.

    sending care and light to those facing the darkness


  • starsnow77
    starsnow77 Member Posts: 55

    Thank you Mollie Is the giving up part because of side effects or having to go through it or???

    I am sorry you had to face a second round of treatments. That is one thing that scares me, feeling haunted that there is something else developing on the other side.

    I have no idea what to expect when I walk through the door...I do know just getting into the parking lot is going to be tough for me...when Hubby told me my appointment and told me to go to the Cancer building it hit me hard. guess I'm still in disbelief.

    I am lucky I live about 40 mins away from the center.and it's an easy drive. just not ready to face this next part.....could be worse

    HUGS to all and thank you for your input


    Another question How do you handle telling people? I've avoided telling some "friends"...they are not close ones....I only have a few of those. I am embarrassed.

  • starsnow77
    starsnow77 Member Posts: 55

    I just read a few other radiation threads and now really don't want to do this...they restrain you? I'll get blisters? I can't go without a bra, am to large/floppy ugh..... I have to wait in room with other people waiting, looking at me? will I throw up? some techs are less than caring?

    oh goodness this is a scary path. I feel like dorothy who is about the enter the haunted forest or maybe I'm more like the scarecrow and cowardly lion combined