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Topic: Starting Radiation August 2021 - Anyone else?

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Jul 30, 2021 04:20AM - edited Oct 12, 2021 04:43AM by MaineJen

MaineJen wrote:

Edited on Oct 11, 2021 to add: If you're about to start radiation, this thread is a good one to read from start to finish. Lots of info and a lot of humor and love throughout. :) I hope I'm not duplicating efforts here. Couldn't find another group under this heading. Anyone else starting in August sometime? I just finished my final round of chemo and am not looking forward to starting radiation so soon. But that's life. Anyway, anyone else?

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Jul 30, 2021 02:45PM Esther01 wrote:

Hi MaineJen,

My surgery was June 10 but I changed my radiology oncologist to what I feel is a better radiation center so it has delayed my start date. Looks like I'll be joining you in August! They fit me in last week for the CT scan/mapping session so now I am wearing stickers over black markers all over my chest like a treasure map. I hope they don't wait too much longer to begin my 35 sessions, because I don't know how long these stickers will stay on.

There is a lot of helpful information in the Radiation 2019 thread. It really helped me understand what we have ahead of us. You may also want to check out the July 2021 radiation thread. I just posted there. I have a feeling there will be several more of us beginning together in August.

I have started stretching my arm so it will be flexible for all of the radiation sessions. It's still stiff from surgery. I've also started lubricating my skin to keep it moisturized. I picked up some calendula cream and some soft camisoles that I won't mind getting greasy with lotions and ointments during radiation.

Like you, I'm not looking forward to radiation, but sure looking forward to having it in the rear view mirror!

Blessings,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Jul 30, 2021 10:09PM MaineJen wrote:

Hi, Esther,

Thanks for your note! Rear view mirror indeed! OMG! That's a perfect way to put it. I had 2 surgeries in April and May and then chemo... I'm so glad chemo is in my rear view mirror, although I'm still experiencing horrible side effects - it hasn't worn off yet at all as it's only been a week since my last infusion. I don't know much at all about anything re: radiation - so reading your note felt like learning a different language. Yikes! I've got to get up and running on all of this. LOL

I have my mapping on August 19th, and I did have my husband purchase all of the skin products for me a few weeks ago after my "orientation" with my radiation doc - but honestly I was so sick from chemo I didn't focus at all - and so as I start to come out of this chemo fog, I guess I'll have to start learning. What are stickers for? Aren't they supposed to put tattoos on us or something (yikes)? Why stretch your arm? I had 5 nodes removed and breast surgery too - so I'm sore even still (figure I will be forever?) - but what does stretching do? And I hadn't thought about soft camisoles? Do you not wear regular bras during treatment? Is that because of the skin irritation? Oy! I have a lot to catch up on. Thanks for your note and I'm glad you found a new doc you're more comfortable with.

Normally I'd say "welcome to this thread!" but really? Who wants to be in this thread? LOL. We're all stuck, I guess. So at least we'll be here to support one another together. Thanks for posting.

- Jen


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Aug 2, 2021 01:36PM Esther01 wrote:

Hi MaineJen,

I hope you had a good weekend and that you're feeling better as the days pass from chemo. And two surgeries, you have been through a lot. The soreness lasted a l o o o nng time, especially under the arm where the nodes were removed. I still have tenderness when I massage the bumpy scars from reconstruction but at least I don't look like the bride of Frankenstein anymore as I did a month ago. How great that your husband has the lotions you'll need. It will be interesting to see which ones we like best as we go through this.

Some radiation centers let you choose between stickers or tiny tattoos. If you choose the stickers, you have to do your best to keep them on when showering, because they need to line up with the position you will be in for each radiation session. They replace them for you when they do come off. Mine are still on after 10 days and they haven't even given me a start date yet. My fault, not theirs. I changed radiation centers the same week I had surgery and it took awhile to get in to be seen by my new RO. The stickers constantly remind me of what's ahead.

I didn't notice stiffness near my underarm at first, but now I do. The PT says I have a little bit of cording and that she'll work on it with me. I am faithful to do the exercises each day, and am stretching because in most cases we'll be laying down with arms above the head every day for 15 minutes and that can be painful if the arm isn't ready. At my mapping session, I had to hold that pose for a very long time but thankfully my arm fell asleep.

Posts before us have mentioned soft camisoles and many said wearing a bra could be painful so I have pulled aside some gentle cotton tops that should work. One suggestion I liked was a soft cotton bandanna for under the breasts to keep that area from rubbing since it's one of the areas that can peel from radiation burns.

Well, I hope to be started soon so I can tell you what it's like and how it's going. I hope they call me this week with a start date!

Blessings,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 3, 2021 04:27AM - edited Aug 3, 2021 04:30AM by grandmaadams

Hi ladies. My last treatment was October 31, 2018. It's in the rear view mirror but as a sexual assault survivor I found requiring me to be naked to the waist, told not to move and male therapists more traumatizing that the actual treatment. Please, whatever you do, advocate for yourself. If you're not comfortable emotionally/mentally, ask for/demand help. Being told to leave your modesty at the door is not an appropriate response. When I explained my issues the treatment center worked with me and I got through it.

I had sharpie marks and clear stickers. Just be careful in the shower and they'll stick. From start to finish I only had one sticker look like it was beginning to come loose. I just clipped a piece of band-aid to hold it in place until my next treatment and they put on a new one. I'm so glad I had sharpie marks and not tattoos. It's just one thing I don't have to keep looking at while putting everything in the rear view mirror.

As for your questions about bras, one of the worst places for radiation dermatitis, if you're effected, can be the fold under your breast. A bra band might rub that area and make it more uncomfortable so a lot of ladies prefer camisoles. Good luck to all. As my mother used to say ... this too shall pass.

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Aug 3, 2021 10:56AM MaineJen wrote:

Hi, Grandmaadams, Thank you for your reminder to self advocate. I appreciate that. And thanks for the info about the sharpies and stickers and also about the camisole. Makes sense. Appreciate your thoughts and reflections. :)

Hi, Esther01 - I didn't realize you could choose between stickers and tattoos! OMG. I'll find out about that soon, I guess. I hope I get a choice? I figured the tattoo thing was just part of the deal. Good to hear. And I guess I'll start thinking about what to wear in place of bras. My surgical bras were quite good with no underwire (of course!) - but maybe even those will be too much. I hate going bra-less, but hey, I'll do whatever I have to do for comfort during that time, I guess. Keep me posted about when you start and how things go. I'll be holding you in my heart.

I'm glad I have some time between now and my start date to recover a bit more from the chemo nightmare. Ugh. I'm only now just starting to feel less flattened. Each day I wake up, it's a day further away from that last poisonous infusion, so that's good. But also, it's a day closer to mapping and so on, and frankly, I'm feeling so over all of this crap that I'm really dreading more. Even though it won't be chemo, it's just a lot. Feels like it's all just piling on. Plus surgeries again after radiation, so I'm trying so hard to focus on the present moment and not get too overwhelmed/daunted by the big picture. All we have is right now. I keep telling myself that.

Blessings right back at you,

MaineJen

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Aug 3, 2021 02:53PM Esther01 wrote:

Thanks Grandmadaams for your advice and wisdom. So helpful! I'm going to remember your idea about shoring up the stickers with an edge of bandaids, because I already have one sticker threatening to come off, and I haven't even started yet.

Thanks for the kind thoughts, MaineJen. Part of me wishes they might forget to call me and I won't have to go through radiation after all. But, I am determined to do this.

I forgot to mention deodorant ... some radiation centers won't let us wear deodorant during treatment. Mine is letting me use Tom's or Native deodorant, which I just switched to. I assume if we're only radiating one side we can always wear it on the other? Some also don't let you shave. The nurse said, after several treatments, the hair will stop growing under the arm anyway.

As soon as I'm done with all 35 sessions, I am going to focus on rebuilding my immune system and detoxing from radiation. I was listening to podcast interviews over the weekend with Dr. Paul Anderson in Seattle (integrative oncologist) who mentions how weak our immune systems become due to chemo and radiation and how important it is for us to actively rebuild them after treatment so they'll become very strong. He mentioned three things: Diet (clean eating), Movement (exercise and rebuilding muscle), and Mind (positive thoughts and outlook, stress reduction and good support system). All good things.

I may call the radiation center tomorrow, just to be assured they haven't forgotten me. :)

Blessings,

Sleep well,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 4, 2021 04:22AM MaineJen wrote:

Hi, Esther01,

OMG Deoderant too! OMG! Seriously. OMG. My hair is all gone and stopped growing months ago from chemo, so I guess I don't have to worry about that for a while. LOL. But - deodorant!? Oyyyyyy. Makes sense, but glad you mentioned it. It helps to get a "feel" for what to expect. I'm so grateful you're sharing.

And those 3 things are so huge, aren't they? Before I was diagnosed, I was walking for years - 1-2 hours/day. Helped me a lot through covid, I have to say. I have younger kids (12 and 14), so when they were home full time, I reallllllly needed those walks! That said, since chemo I've not been able to walk more than a block or two each day. But I've done whatever I could - just to keep moving, even if I'm waddling slowly. I'm slowly building back up a bit at a time now. About to go out there and see what I can manage today. Just still so weak. But determined. Because I know it's so healthy and it's all I have any control over right now, in terms of my body. That and healthy eating - I admit I had a bag of potato chips today. But honestly, I was so happy to be able to taste them that I couldn't stop myself LOL. Everything generally has tasted like black pepper on fire - including water - since chemo. So a little bit of change is exciting. That said, yes, I'm 100% on board with trying to feed my body things to give myself a "leg up" in terms of healing/cleansing. I'm with you on that too.Stress reduction - yes. Interestingly, I've had so many good friends who live away from where I am - wanting to visit and "take care" of me during this time. I'm blessed to have a loving/amazing husband and kiddos - but also, when I have visitors, no matter how much I love them - I end up feeling stressed and compelled to host. So I've said no to visitors since my diagnosis - and people have had a realllllly hard time with that! They're used to me saying yes to everything. But the stress of hosting and taking care of others is too much right now. So in that sense, I'm trying really hard to set boundaries. Kindly. But anyway, I apprciate your input on this. I agree: all good things!

I hope they haven't forgotten you! LOL. You've got this. If I can make it through this horrible nightmare of chemo that I just went through, then you and I can definitely do this insanely challenging radiation thing. I don't know how, but we'll do it. I'm glad you're here sharing, thank you. And I'll be rooting for you every step of the way. Thinking of you - holding you in my heart. Keep me posted.

MaineJen

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Aug 4, 2021 05:00AM Esther01 wrote:

Hi MaineJen,

I so understand that! You are so wise to have healthy barriers and not push yourself to host which does happen when friends come by and we're just not up to it after very long. Such a blessing knowing your friends want to be there for you. My next door neighbor couldn't figure out what to do to help me, so he calls every week to tell me he'll be dragging my trash cans to the curb for me on trash day.

Well, I jinxed it :) Radiation just called and now they're ready for me. I go in early-early a.m. tomorrow for a final 45 minute prep session so they can make sure they will have me lined up properly for the machine. Then, on Thursday I will begin. My RO originally said 33 treatments. I sure hope that number isn't going to rise. Did I tell you, I have my wall calendar ready to start making big X-s through the days. I haven't done that since a teenager.

You're doing great with your walking. We have to slowly rebuild and you're not pushing yourself too hard all at once. You'll get there! I am loving the opportunity to eat things I never got away with before bc as I rebuild my immune system - tons of avocados, olive oil and butter on everything, macadamia nuts, walnuts, pecans. I'm very low carb but found that I have a better appetite if I crunch on something. I also found some good protein bars. I am starting gentle hand weights because then your body uses the protein you just ate to repair and build muscle instead of just adding on fat which is pretty much what I did prior to bc.

I spoke with a friend today who revealed she had gone through stage 2 triple negative cancer many years ago and chemo. She said the wall exercise really helped get her shoulder range of motion back. The one where you put your hand on the wall or doorway and take a few steps forward and stretch. She said she could not tell it was working but did it faithfully a few times a day and it did work! That wall exercise is the one that seems to feel like it might do the most good.

Thank you for being there for me and supporting me as we begin this next phase of the adventure. I will be here for you, too and cheering you on. Have a blessed day today!

Esther


Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 4, 2021 07:31AM MaineJen wrote:

Esther01!

OMG you're going in this week! Let me know how it all goes. I'll be thinking of you constantly.

I love that your neighbor does the trash for you! That's the sweetest thing!

Wall exercises. Hmmm. I'm trying to visualize that in my head. I"m going to read and re-read what you described and see if I can imagine it? :)

I'm with you - when I'm at my best, I'm very low carb too. I'm going to try to keep things that way at least a bit. Although I'm trying not to be too rigid with myself these days. :)

I love that you have a calendar to mark X each day that it is done. That's fantastic. I may have to do the same!

I'll wait to hear from you - when you're ready to share - about how it's all going and what you've thought about and learned along the way. Baby steps. One bit at a time. Just know you're in my heart.

Here we go! Thanks for sharing and for being willing to go first. :)

Jen

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Aug 5, 2021 06:28AM Sunny33 wrote:

grandmaadams

Your words resonated with me regarding the male therapists. I finished radiation back in April and I am still dealing with the trauma of how the staff members treated me. On particular trauma involved a male therapist reprimanding me in front of three other therapists (who were all about to see me exposed) when I brought up a concern of mine. Degrading doesn't begin to describe how I felt in that moment. The treatments didn't physically faze me too much but how I was treated scarred me emotionally and mentally. Currently, I am undergoing EMDR (Eye Movement Desensitization and Reprocessing) therapy which has greatly helped me. Actually, it's been a lifesaver. Luckily, I was able to have a meeting with the Director of Radiation where I underwent treatment and let loose over the things that happened to me and went into detail regarding how they treat patients need to change there. Cancer is hard enough without having to deal with abuse from those supposedly helping you.

So, you're absolutely correct! Advocate for yourself and, if something feels wrong, speak up. Thanks for letting me vent. There are days where the pain of what I went through seems unbearable but being able to let it out helps. Thanks for listening.

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Aug 5, 2021 09:35AM MaineJen wrote:

Sunny33 - OMG I'm so sad to hear that happened to you. It's horrible. TRULY horrible. I had a horrific experience with a chemo nurse during my 2nd infusion and I was so vulnerable that I wept instead of self-advocating. Then, after I started to recover my senses, I contacted the Director of Nursing at the Chemo place and like you, gave her an earful. I resolved to never let anyone mess with me in a medical setting again. The problem is that we're so vulnerable to start with, it's hard to have perspective in those moments. In any case, I'm SO glad you are taking care of yourself after such a terrible experience and thank you for sharing. I'll be on high alert and no one is going to mess with me without getting a huge response. :) Sending my appreciation and I'm happy for you that your radiation regimen is over.

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Aug 5, 2021 11:28AM Mich21 wrote:

I just went in for my first actual treatment today. They told me it would be a longer than normal appointment because they needed to make sure I was positioned correctly. They also told me that they would be moving me and the table around for positioning, possibly marking on me (I have the tattoos already from the SIM appointment) and taking some images to make sure I was in the right position.

I am doing my sessions face down, so I literally can't see a thing. I could hear the machine make some sounds now and then and I'd feel the table move a bit. I thought they were still situating me and suddenly they came in and said I was done.

There was absolutely no pain or sensation at all. That took a great bit of my anxiety away. I wanted to share for those of you who still haven't started. Hoping for mild (to no) side effects, but my skin is so sensitive that I can't even keep a bandaid on overnight without a rash. They gave me a prescription cream to use twice a day, hopefully that helps.

Jen - It's funny I was just talking to my husband about "Hosting" today. I love when my kids or friends visit, but then I feel like I have to be "ON" and I want to just take this time to be "OFF" and relax. Not worry about my hair or my house or give up the comfy spot on the couch lol. So, I'm definitely working on my boundaries and my no this month as well. I am working remotely, but I volunteer to go on campus a couple times a month to grade or proctor tests. I let my boss know I am taking the month off from doing this. That was a huge step for me :)

Dx 3/8/2021, LCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/8/2021 Lumpectomy: Left Radiation Therapy 8/3/2021 Whole-breast: Breast Hormonal Therapy 9/14/2021 Arimidex (anastrozole)
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Aug 5, 2021 12:39PM - edited Aug 5, 2021 12:41PM by Serendipity09

Wow! I'm so glad I decided to search for an August group. I had my consultation with the RO a week ago tomorrow and because it was my 3rd time meeting with him, nothing he said surprised me. The only difference is I had my exchange surgery on 7/9, which is when a “blemish" I had was biopsied and came back positive and here I am again. We discussed possible outcomes with implants. I had an excision last Tuesday and need to get the clearance from PS (scheduled for a week from today 8/11) to start rads. RO told me to be ready because as soon as he gets the go ahead from the PS, he will be working quickly to get me started. I anticipate to start rads in 2 weeks.

I knew nothing of stickers/tattoos. I'm sure they'll come up on my next visit with the RO.
Can someone tell me what creams/lotions I should be purchasing?

I have no idea about bras or camisoles as I'm still in a surgical bra. Ha….I don't even know what size I am right now.

I didn't think of ROM, but I'm still healing from surgery and it was already somewhat restricted from the BMX. I do the wall exercise and it has helped.

Grandmadams - Self-Advocating is so important, thank you!

Sunny33 - so sorry you had to go through that experience. I had an experience with a Nurse Navigator who tried to belittle me while I was receiving my infusion.it took everything in me to restrain myself from jumping out of my chair and knocking her out. I'm not an aggressive person whatsoever and I have never physically harmed anyone in my life, but I was enraged; not to mention embarrassed as there was another person in the room getting her treatment.

Esther01 - Funny you mentioned deodorant. I just mentioned, not more then 25 minutes ago to my friend that I haven't used deodorant since April 2020, when I started chemo because I haven't needed to.




Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Aug 5, 2021 03:15PM Esther01 wrote:

Well, Jen, Grandmaadam, Sunny, Ivy and Cammyquil, you all would have been proud of me today, because I had to do some serious self-advocating at my SECOND 45-minute mapping/prep session. Long story... but hopefully it won't happen to any of you. I "officially" start tomorrow with 33 sessions but I put a big huge X on my wall calendar to give myself full credit for today's drama trauma.

Cammyquil, how wonderful that you qualified for the prone position instead of supine. That's fantastic. I read that I am not eligible because I had lymph node involvement. Lying on my back on that hard table for so long (again) today was quite painful on my left shoulder and because I'm underweight, it seriously bruised my tailbone. I have an idea. I'll bring a folded pair of Depends and stuff it down the back of my pants to cushion my tailbone. I practiced at home while lying on a tile floor. It helps! I wonder if they'll let me get away with that.

Ivy, I'm glad you're here and I'm sorry that happened. I hope that comes together quickly for you so you can get started with a minimum of delay. I'm glad the wall exercise works for you. That encourages me to keep doing it, even though I can't see progress yet.

As for creams, I have no idea which will work well or best, but here are the four I have: (1) Calendula Cream samples from the RO's office, (2) 98% Aloe Vera gel from Alba Botanicals (Sprouts), (3) BeeCure Radiation & Laser Skin Care Cream (Amazon) recommended to me by a fellow rads survivor who said it worked better for her than any other cream, and (4) Melatonin 200mg Theracream by Zetpil which was way too expensive (that means it works, right?) so I figure I won't open that one unless I really need it.

Oh, and I'm not sure how long all of your drives are, but I'm already getting tired of the drive after only going twice (ha!) so I'm going to bring CDs/music and books on tape so I have something to look forward to on the drives in order to get my mind off the treatments. Also, I recommend wearing a dark color to your first/mapping session since they'll likely be putting pen marks all over your chest. Today they chose a green marker on me.

Blessings and sleep well-

Esther






Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 5, 2021 06:04PM Serendipity09 wrote:

Esther01 - Loving the Depends idea, lol.

Thanks for the information! Would you mind reporting back when you use the creams? I ‘ll be doing 25 rads sessions and I’m planning on having a calendar and “X-ing” those days away. I’ll give myself some sort of a small reward at the end of each week; nothing crazy and expensive (although I’m known to get carried away at times); maybe something from Starbucks or ice cream, just something a little special that I normally wouldn’t get, could be a Starbucks or ice cream. Just something to celebrate getting through the week

My drive is about 15 minutes each way, so not too far.


Praying all goes well for you tomorrow ((hugs))

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Aug 6, 2021 12:25AM MaineJen wrote:

Hello everyone! Well, I'm sad you're all here with me - wish none of us had to do this. But also grateful to be going through it all with you - it helps to have you all to share this with.

Ivy09 - I love the idea of a reward at the end of the week of driving. I love the Starbucks chocolate frozen drinks (whatever they're called LOL) and I rarely allow myself to have them because they're so bad for me! But maybe I'll get those! And I have purchased a few creams, etc. but I have no idea about how they all work or not yet, as I don't start until a couple of weeks from now. I was told to get "Celor" aloe vera gel and aquafor and 1% hydrocortisone anti itch cream. So I've stocked up but we'll see what actually works. How are you doing re: healing from surgery? I hope you're feeling on the mend a bit before they throw you into radiation.

I have a 1/2 hour drive one way, which I'm dreading. Between the radiation and the hour of driving plus it all being just after I finished chemo, my guess is I'm going to be wiped out. My friend, who did radiation a number of years ago - said that she literally kept a fold-out chair in her car and on the way home from radiation each day, she'd stop at a park and nap in the chair! She was in Los Angeles - so it is sunny year round. That said, it is summer time now, so, there's that. I remember when she told me this, I thought "gee, how does someone get that tired!" and then I had chemo...so now I know. LOL. Anyway, I think that's a cool idea so I may do it. I'm a bit paranoid about falling asleep in public settings, but it's a nice idea and I'll have a chair just in case. The other night I was driving behind my husband to drop off my car to be serviced and about half way there, I was overcome with exhaustion and when we arrived I said "omg I almost had to pull over" - I was afraid I'd get into an accident falling asleep at the wheel! Yikes. The fatigue is real.

I'm really sad and angry to hear that we all have stories about really rude or disrespectful or inconsiderate or inappropriate nurses/care people - it's so awful! Really!? What is wrong with people! Esther01 good for you for speaking up - whatever it was. Sheesh! Grrrr.

Esther01 - I think today is the day you officially start? Or was it yesterday? I'm losing track of time. So sorry about that. Please let us know how you're doing and how it went.

Cammyquil - thanks for sharing about the first day experience. That alleviates my anxiety a lot, actually. I so appreciate it. And yay for you taking the month off from going to campus! I like the way you use the language "ON" vs "OFF" - that is exactly how it feels.

Sending big hugs to you all, wherever you may be geographically and in this process.

- Jen

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Aug 6, 2021 03:20AM Esther01 wrote:

Wow Jen, you have the same drive time as I do. A 30 minute one-way commute. CoastieMom (another thread) has a 1.5 hour one way so we could have it worse! I wonder how she is doing. I hope she got a driver to take her at least some days of the week.

LOL about sleeping in public. How I would love to do that. But, I'd have to chain my purse to my neck and wear a sign that says, "Don't call 911. I'm not dead!" I'd wear the same sign if I nap in my car. :) That's what I love about hotel pools. You're in public but you're expected to doze off.

I'm sorry about the fatigue from chemo. I pray it gets better and better as you get away from the treatments and your immune system rebuilds strong. There are lots of tools in the toolchest for rebuilding our immune systems after treatments end which is a huge part of the healing with longterm benefits. I'm kind of starting early because I have that kind of doctor and this is her wheelhouse.

Well, I get zapped today at 4:30 but meet my RO at 4 to officially protest that he didn't inform me they were going to radiate such a large area to include my supraclavicular nodes way up at my neck (since there was NO cancer there). Last minute info is never well received because we aren't given time to process it and make an informed decision. I did have a whopping 5 nodes involved though so please don't worry that you'll have the same extensive treatment I apparently need. I pray you'll all have WAY less of these issues.

OK, I'm off to figure out which of the 4 lotions I'm supposed to put on at 1 pm (we can't put any lotion within 3 hours before rads) and to figure out which to take with me to apply right after the first session.

We'll ALL get through this and into H E A L I N G

Love and blessings,

Esther






Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 6, 2021 03:22AM Esther01 wrote:

P.S> Jen, it just seemed like I started yesterday. I gave myself a big ol' X for enduring the mapping session.

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 6, 2021 03:34AM - edited Aug 6, 2021 03:35AM by MaineJen

Esther01: Oh! Thinking of you TODAY. This afternoon! Are you Eastern Time? I am. :) And I totally laughed reading your message about having to wear a sign that tells people not to call 911. Hilarious! :)

I, too, had nodes involved. So, I, too, will be having radiation beyond the breast. SO sorry they didn't inform you about that part before now. That's a bummer in a big way. I assumed they'd be marking me up during the mapping - which hasn't happened for me yet - did they not mark you up when you got mapped? (is that even a verb LOL?). Anyway, I'm reallllly nervous about the node/non boob radiation part because of the potential side effects from that...they told me that I'll need to not ever get blood taken in that arm again, no blood pressure taken in that arm again, wear gardening gloves to protect my hand on that side from cuts, etc. (luckily I suck at gardening, so that won't be a big worry LOL). Etc. I'm also trying hard not to worry too much about the onset of lymphodema, which becomes more of a risk too. Oy, like we don't have enough to worry about. I hope they'll inform you about everything today. Just keep in mind: as much as this is all awful, it's way better than getting cancer again. I keep reminding myself of this. At this point, I'm thinking: as long as I'm around to watch my kids grow older, I'll take whatever insanity I have to deal with.

And a 1.5 hour drive one way!?!?!? That's horrendous! Every day!? I don't know what I"d do! OMG!

Into H E A L I N G indeed! Love it.

Love to you. I'm with you 100% in spirit today!

Jen

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Aug 6, 2021 05:22AM Sunny33 wrote:

MaineJen

Thank you! You are so right about being vulnerable. We are conditioned to do exactly what the doctors and staff tell us because "it's what's best for us" and it may help us so we stay quiet and do what they say. They forget we are human beings going through such a hard time and they sometimes treat us like items on an assembly line. I hate that you went through such a terrible experience with the chemo nurse. There is absolutely no excuse for being treated that way. Seriously, regarding the medical staff, what you do or not do can greatly affect another person! But wasn't it an empowering feeling speaking up and letting the director know what happened to you? Kudos!

Best wishes to you and to everyone!

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Aug 6, 2021 05:42AM Mich21 wrote:

Esther - So proud of you for your self-advocating during your mapping appointment and for the big X you gave yourself. I hope today goes smoother for you :) And the don't wake me sign is hilarious! I need one of those, but more of a "Danger - Do not wake for your own safety" sign. My drive is 30 miles each way, and time is completely dependent on traffic. I head toward San Diego for treatment and am still learning the traffic patterns. Luckily my husband is able to drive me back and forth most days which is really sweet. I asked for the latest available appointments, so the majority of treatments will be 6pm-ish. I figured that way I could work during the day, shower, treatment, lotion, pajamas and bed! I thought once fatigue sets in that might be the easiest. I hope you get a good schedule too!

Jen - Mmmm Double-Chocolate chip frappe! So bad but SO good! You definitely deserve one!

Ivy - I was prescribed Mometasone steroid cream to apply twice daily.

Hugs to everyone, hope your day is great!

Dx 3/8/2021, LCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/8/2021 Lumpectomy: Left Radiation Therapy 8/3/2021 Whole-breast: Breast Hormonal Therapy 9/14/2021 Arimidex (anastrozole)
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Aug 6, 2021 08:51AM Serendipity09 wrote:

So they give you a time and that is the time you go for all you treatments?

Cammyquil - thank you!

I'm getting more nervous as I know the RO will be calling next Thursday to get things started.

Thinking of you all!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Aug 6, 2021 09:35AM - edited Aug 6, 2021 09:37AM by grandmaadams

Hi Ladies ... it does my heart good to hear you advocating for yourself. Take back your power. All this stuff we're going through is new to us and quite often when someone says "do you have any questions?", we don't know what to ask. Quite often you aren't given enough information to make an educated decision and you don't discover this until it's too late. My RO just said to me we're going to make little tiny tattoos you'll hardly see, OK? You have the right to refuse tattoos and get stickers instead. A response of "it's protocol" means it's easiest for us not necessarily what's best for you. You have the right to refuse pictures being taken of you naked. Be ready for real pushback on this ... you'll hear we have to, we need it in case of ........ And you have the right to have another female present. My facility's protocol was naked to the waist during setup and treatment, both arms behind the head and if the only female therapist wasn't there you were in that room with 2 or 3 men and no other female in sight. Well, I got sharpie marks with stickers, only one arm behind my head (osteoarthritis in my left shoulder) and surprisingly my RO agreed, I fashioned my own "modesty band" out of a thin tshirt, my left breast was never exposed and my right breast was covered back up after positioning AND I informed my RO that if I showed up for treatment and the only female tech wasn't there, I would turn around and walk out. Guess who got overtime during my treatment weeks. All of my advocating was done with firmness but no anger or hostility. I met another lady who had treatment at the same facility. I asked her if she ever had treatment with no female present. She said "yes, I was really uncomfortable but what are you going to do" I didn't tell her what I did, it was too late.

Ladies ... if there are several people in the room, before you're exposed, ask who they are and why are they in the room. If they don't have to be there, you have the right to ask them to leave. I didn't want any kind of an audience and asked the students (male and female) to step out. They were a little surprised but they did so without any pushback. This applies to any medical procedure you're having.

Sunny 33 ... I've found it therapeutic for me to post my experience and encourage other women. I also went through EMDR therapy and found it incredibly helpful. Fortunately I believe most radiation treatment centers are more concerned with the well being of their patients.

Lotions/creams ... my RO never mentioned them. My surgeon told me to put enough aloe vera on my breast that I sloshed out of my bra. I did not like Aquaphor I thought it too heavy and greasy although it's great for chapped lips. Another trick I learned was Neosporin cream with Pain Relief. It helped relieve the discomfort when the crease under my breast became an issue.

One last thing ... the female tech who worked with me was wonderful, incredibly considerate and kind.


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Aug 6, 2021 02:49PM LauDea wrote:

Hi, I had my surgery at the end of June, Left side mastectomy with 12 nodes removed. I recently was told by my oncologist that I would not benefit from chemo as my MRI came back clean and my oncotype test score was an 8 (my new lucky number). I just started taking the hormone pill. I am meeting with my RO for my first visit on Monday and have no idea what to expect. So grateful that I found this group.

Dx 5/24/2021, ILC, Left, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2- Surgery 6/27/2021 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 8/3/2021 Femara (letrozole) Radiation Therapy
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Aug 7, 2021 02:14AM MaineJen wrote:

Hi, LauDea, welcome to the group. 8 IS a lucky number! That's so great! I'm relieved for you that you didn't have to do chemo. Believe me, after having just completed it - yikes! I'm happy for anyone if they don't have to endure it. Thank goodness for oncotype DX grading. It's a blessing! I'm having my mapping done on the 19th, so I'm getting a bit of time to recover (just enough, I guess?) from chemo - before I move forward to the next step. I start hormone pills after radiation and more surgeries. I hope the hormone pills don't cause you too much discomfort. Anyway, glad you found us. Hope you're recovering well from your surgery. It's rough!

Jen

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Aug 7, 2021 03:31AM Mich21 wrote:

Yay for that 8!! Mine came back at 12 so I also didn’t have to do chemo. I was so scared of it, I can’t even drink very much because the hangover makes me so sick. I’m sorry for the ladies that had to go through it - you are all super heroes in my book!!

Hoping everyone is doing great today!

Dx 3/8/2021, LCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/8/2021 Lumpectomy: Left Radiation Therapy 8/3/2021 Whole-breast: Breast Hormonal Therapy 9/14/2021 Arimidex (anastrozole)
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Aug 7, 2021 03:57AM Esther01 wrote:

Wonderful to see your posts this morning! I'm heading out to an IV vitamin c session but will report back on how my first radiation session went yesterday. Spoiler alert, it went totally fine.

Love and Blessings,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Aug 7, 2021 05:00AM Sunny33 wrote:

granmaadams...Hindsight is definitely 20/20 and I get so angry that I didn't value myself more and speak up the very first time I felt uncomfortable. I just hope that, by posting what happened to me, it will make others aware that they are in charge and don't have to necessarily do everything the medical staff says to do. I just don't want anyone to go through my experience. I'm glad to hear EMDR proved helpful for you. I'm in the beginning stages and I can already see that it's helping. Thank you

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Aug 7, 2021 05:07AM Sunny33 wrote:

Ivy09...there was no excuse for the behavior of the Nurse Navigator. Talk about bullying. I admire your restraint because I probably would have broken down and cried like a baby.

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Aug 7, 2021 05:33AM MaineJen wrote:

Esther01 - hooray! SO glad it went fine. Can't wait to hear more. Thinking of you as you get today's infusion. You're in my heart. You ALL are.

Jen

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