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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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Aug 23, 2021 09:09AM Calinana4 wrote:

Happy Sunday. Completed 9 of 28 radiation sessions on Friday. Just wanted to let you ladies know how much I enjoy reading your posts! I’m not much of a poster, more of a stalker on the forum, but your humor always brightens my day. I’ll continue to follow everyone’s radiation journey - hopefully smooth sailing!

Take care

Dx 2/23/2021, ILC, Right, 2cm, Stage IIB, Grade 3, 3/5 nodes, ER+/PR-, HER2- Surgery 3/29/2021 Mastectomy: Left, Right Chemotherapy 5/10/2021 Radiation Therapy 8/10/2021 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 23, 2021 10:22AM Serendipity09 wrote:

Jasmine - I'm glad I have you all as well! Thank you! It's not easy, I miss mom and there are days where I wish she was here rubbing my head, but the reality is is that she has a very negative effect on me, so it's probably for the best that she's not around right now. We've never really had the greatest mother-daughter relationship. But she is my mom and I love her to pieces. She's not well either, so I feel a little guilty for not reaching out to her, however, I know the effect she has on me and I can't, physically or emotionally deal with it. My brothers, well that's a different story. Both are narcissists who only care about themselves. I will always love them, but them staying away is a good thing for me mentally. Sad isn't it?

Both times it was very hard for me to tell my son. I just didn't want to see the hurt and the worry in his eyes. Broke my heart both times. Not only do I "fight" to live, for lack of a better word", but I "fight" to live for him. He is my world and I want to be around to see him achieve his career goals, get married and be the amazing father I know he will be one day.

Ok, no more sappy BS.

Jen - my hot flashes are not as bad as they were when I was AC&T. They had gone away for a couple of months early spring , but have come come full force. It's been very warm and humid, so I turn the AC on so my son is comfortable, but even with that all of a sudden I'm to turn on my airport fan, the hot flash passes and I get cold and have to cover up. It's quite comical. Come on Autumn! LOL. Oh, and chemo fog/brain, I think it's here to stay for me. I'm a year and a few days out from my last IV chemo and there are many times a day I forget the point I'm going to make in the middle of a conversation, or I'll ask my son the same question 3 times in a 10 minute span. Sometimes I feel like I'm going crazy.

Mich21 - This time around I feel like I can open up about my dx a little more, but I'm still very reserved. As mentioned before, I was very ashamed of having bc. Whether it was because I didn't want to appear weak; because I looked very different, because I was sick all the time?! I'm not sure, but it was a real emotion I wish I didn't have. When I had my exchange I posted it on social media, that was the first many people knew of it., but at that point I thought I was at t he beginning of the end. But here I am again, I haven't told many people and I'm keeping quiet about it. My uncle always scolds me about being so private, it's just not something I feel I need to share...right now.

Esther - how did those enchiladas come out?

Have great night you lovelies!

Ivy



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 23, 2021 10:42AM MaineJen wrote:

I'll write again soon but I just had to share this. Today a long-distance friend texted me and asked if chemo is over. I said "yup." And this was how she responded: "YAY! You're done with chemo and I've heard radiation is a walk in the park - only 5 minutes a day, right? Super easy. Congrats!"

Not. Even. Kidding.

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Aug 23, 2021 01:11PM - edited Aug 23, 2021 01:18PM by Esther01

Yes!! Bring on Autumn and Jen's red tree. These hot flashes are r i d i c u l o u s. From hot.. to cold.. really gets old! They wake me up at night. I'm sorry everyone else is going through this too but it is comforting to know I'm not alone.

Hey Jen, Happy 22nd Anniversary!!

LoveTheSeventies: HAPPY ANNIVERSARY BALLOONS!!

I"m so glad you had a happy day! xoxo to infinity. Your day at the beach sounded wonderful, especially the candy store, probably because that is forbidden fruit for me right now. I am picturing one of those Rocky Mountain Chocolate Factories with the hungover looking bear in the chair outside, just the lovely Maine version. I love Maine, visited Bar Harbor once.

And Jen.... that text message. I'm sure she meant well, but...Singing

Hi Calinana, congratulations on having 9 rads out of the way! I think you'll be finishing a few days before me so I'll be thinking of you as you continue. I'm glad you're here with us.

Michele, I forgot to tell you, I loved your photo of driving on the coast. Those skies were dark and beautiful. And your spring cleaning bug was contagious! Today I finally felt inspired put together this light grey file cabinet. Until I opened the box. It has been sitting in our garage for seriously way too long because I knew it would be a bear to put together, and it was. There were like 100 tiny little pieces of wood in there. I'm surprised they didn't just ship me the tree and make me saw the wood down, too. Felt such a sense of accomplishment though when I was done, so I'm rewarding myself by lounging in my recliner watching the new Aurora Teagarden mystery on Hallmark Movie channel. I know... life around here is ultra exciting when I'm not radiating myself.

Ivy and Jasmine, I'll probably still be doing rads when you start and maybe even after you finish. I just glimpsed my calendar. I won't be done until the 21st, which I think is a few days after Calinana.

Ivy, what an understandable feeling to miss the comfort of a parent during all of this yucky stuff we are enduring. My mom has dementia and has no idea what I'm going through, so she can't be there for me as she once was. There is a sweet online group at my church called Cancer Companions where just a few of us are in treatment and the rest are survivors cheering us on. It's encouraging to know you can get super sick and become healthy again.

That reminds me of chemo brain fog you are describing. I feel badly because they didn't give me chemo and I don't know how bad it all was for you and how it can linger. I can't imagine losing my sense of taste like Jen has had to deal with. I know there are nutritional things and IV therapies that can help but for the life of me I can't remember right now what those are! I guess I need it, too.

The enchiladas were good, but next time I am adding way more cheese!

Sleep well!

Love, xoxo

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 23, 2021 03:44PM Mich21 wrote:

I’m so sorry about your family Ivy. I am basically on my own, so I can somewhat relate. I was adopted as a baby and 7 years ago I found my birth mom. I tried my hardest to live out all my mother- daughter dreams and even had a cruise booked for us in 2020. She and I got along well but she’s a very bitter woman by nature, I never really understood a gossip monger before I met her. She thrives on toxicity. She made fun of my sister in law for getting bc and losing her hair to chemo last year. When I got my ex, she was the first person I called, it was that primal need for mom — And she couldn’t care less. She was distant and flippant & I really don’t think she cared at all. I made the decision that I’d tried long and hard enough & I blocked her number. (My adoptive parents have both passed). And telling my kids was no walk in the park either, my oldest didn’t like how her sister reacted so they got into a fight and aren’t talking. Ugh.

Sooo there’s that. It’s so hard for me to be open and vulnerable but I am fighting the delete delete delete urge!!

Esther - your send the tree comment had me laughing out loud! I love it. And so glad you showed that cabinet who’s boss!!

Welcome Calinana!!


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 24, 2021 04:05AM - edited Aug 24, 2021 04:12AM by LindaD3

Hi Everyone,


Thanks for all your kind responses. Sorry I am so delayed in rejoining this group but I have been a bit overwhelmed. My sister found this great product for me called the comfort cup and she found through Facebook.

I received it Thursday in the mail and after wearing it my pain has gone from unbearable to hardly noticeable. I can't believe it! What a life saver. I wear it under my bra so it stays in place and nothing touched my freak'n nipple all day! Yay! So I could move about without pain. I'm going to show it to my radiation oncologist because he was very concerned for me but didn't really have anything that would help.

Hope everyone is getting through the best you can. My treatments all in the early mornings after I drop off my daughter at school then I go to work (part time thank goodness), pick her up and take a quick nap.

Someone wanted to know more about my diagnosis so here it is: Diagnosed with estrogen/progesterone +, HER@ -, Grade 2A, Onca 5. Lumpectomy.

Have a great week!!


Hormone +, HER2-, Grade 2A, Onca 5, Lumpectomy
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Aug 24, 2021 04:20AM LindaD3 wrote:

I'm so sorry to hear about your lymphedema Jen. My sister is an occupational therapist who treats lymphedema so she had me doing the self drainage right after surgery plus stretches to open up the pathways. I think if it's caught early it's easier to treat and get over. Sending hugs your way!

Hormone +, HER2-, Grade 2A, Onca 5, Lumpectomy
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Aug 24, 2021 04:31AM LindaD3 wrote:

OMG Ivy I too have kept very private about my diagnosis. I think I got tired of people saying very unhelpful things that either scared the crap out of me or I ended up having to take care of them and tell them everything would be ok. My mom is also not doing well. I have 24 care for her in her home. Before my surgery and treatment I was going over to her house almost daily to check in and visit but I just don't have the energy. We aren't super close but she's a sweet person just emotionally distant. I can only manage to visit with her about twice a week. I think she understands but her dementia makes her confused and I just hope she doesn't feel I'm abandoning her. Her caregivers have been beyond amazing with everything. They really understand dementia and how to help both of us navigate the changes in her routine.


My sister is a full fledged narcissistic. I keep my distance from her. It's just healthier that way as I trigger her big time.


My hot flashes seem like I pull the heat out of hell for about 2 minutes then they are gone. If there's a medication or supplement I can take let me know ladies!


Hope your week goes well.

Hormone +, HER2-, Grade 2A, Onca 5, Lumpectomy
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Aug 24, 2021 04:34AM LindaD3 wrote:

Esther I need your enchilada recipe! Sounds yummy right now.


My hot flashes are so bad at night I sleep with a fan blowing on me. I can't wait until it's winter and I can sleep with the windows open and let the cold air in!


Take Care!

Hormone +, HER2-, Grade 2A, Onca 5, Lumpectomy
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Aug 24, 2021 05:19AM Mich21 wrote:

Good afternoon ladies - today was 14/16 :) Saw my RO for the last time today and she was concerned about a burn spot I have from treatment- she said it will most likely peel and sent me home with a burn ointment and numbing cream. Eek. I’m including a pic so you ladies know what to look for, it’s right next to my lumpectomy scar (also in photo)



Just a slightly darker area of the skin. Otherwise feeling fine :) welcome back Linda!!

Michele

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 24, 2021 08:23AM MaineJen wrote:

Michele - thank you for posting the photo - I'll be sure to pay attention. Ouch - you poor thing! I hope the cream and ointment help you feel better and heal fast! Also: 14/16!!! That's SO EXCITING! So excited for you to almost be done! WOOHOOO!!!! xoxooxxo

LindaD3 - "pull the heat out of hell for about 2 minutes" OMG I laughed SO HARD that is the PERFECT description of hot flashes!~ LOLOLOLOL. And: my oncologist recommended 100 mg (the lowest possible dose, I think) of gabapentin. I was like "really? That's gonna help with hot flashes? Really?" He said "there are a few different things we can try, but this is the most conservative approach first. (he knows I don't like being on loads of meds) We can always increase the dose." IT WORKS REALLY WELL!!! It's not perfect, but I prefer not to up the dose - and I take it at bedtime. I went from literally intolerable hot flashes in which I was 100% certain I'd spontaneously combust all night long and my husband would find a pile of ash on the bed in the morning - to a few hot flashes each night that are yukki but manageable. I know he said I could increase the dose, and I'm gonna keep that in my back pocket as an option - but I hate adding more meds to my plate right now - since chemo I've taken so many meds! Anyway, I would strongly recommend talking with your doc about this option. Especially if you are in hell! :) OMG you are hilarious!

And: thank you for the hugs and pep talk about the lympedema. :) xo

Also: I will just add here that my biological Dad is a total, for-real narcissist nightmare and my biological mom is borderline personality disordered. Like clinically - for real. If you don't know what that means, you can google the definition of borderline PD and you'll likely be afraid - yikes! Don't google it. It's so horrible. LOL. So I feel profound amounts of compassion and empathy for anyone who has a sibling or a parent or a kid who is a true narcissist or who is personality disordered. The agony. It is so, so, so hard.

And we adopted both of our kids when they were little. My 14 year old daughter was in an orphanage in Kazakhstan for almost a year before we brought her home and my 12 year old son was in my arms on day #1 of his life - from the States. Just because you are born out of someone's body, it doesn't mean they'll love or care for you...that's what I've learned the hard way from my life experiences. My kids - I love them so profoundly and deeply - and with such intense devotion - it wouldn't matter to me if they came out of my body or not. They are so, so, so mine. My Mom - she doesn't love me and I came out of her body. Soooo many things to talk about and think about here. But I just thought I'd share that.

Ladies, my brain is so filled with poison still - I'm having a hard time keeping track of the details about who is doing radiation and when and how far along you all are and such. But please know this: I walk around each day in my life holding all of you in my heart with so much appreciation and I want you all to know you matter to me. I cannot believe how amazing this group is. You are all so funny, so real, so honest, so different from each other and so beautiful in so many ways. I'm sad we're all enduring such misery - but at least we're going through it together. I may be crappy with keeping up with details (yikes!), but you all matter to me so much. I can't believe we've only ever met online! Such a strange new world with social media as an option.

Sending loads of love to each of you. Glad you're all here with me.

Jen


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Aug 24, 2021 12:04PM Serendipity09 wrote:

Esther - my dad has Alzheimer's. I haven't heard from him in months; not sure if he even remembers me at this point. When I was dx'd last year he understood, but would forget. He lives in Puerto Rico and I haven't seen him since June 2019. When I saw him then it was still early, but nonetheless it broke my heart to see him that way, I don't know what the current situation is as his wife doesn't tell me anything and that side of the family and I aren't close anymore (I promise you all, I'm not a terrible person, I just don't put up with anyone's crap). I actually had my airfare to leave to go see him for Aug. 9th, but because I was dx'd again, had to have another surgery after my exchange, and because of the increasing number of covid cases where I live and in PR, my MO asked me to hold off. I miss him so much. He and I had/have such a special bond. He currently doesn't know that I'm going through this again.

Mich21 - I'm so sorry about your mom. I wish I could say that my mom and I got along, but I always felt like she didn't like me. Isn't that something?! I knew she loved me and did her best with me, but even now she plays favorites with my brothers. I'm all about the "delete, delete, delete." I had to LOL when I read that because I say it all the time. Hope the ointment works on that burn spot and that it heals well.

Linda - My mom is currently receiving dialysis and when she started back in May I was the one taking her to/from her appointments from the other side of town; I was taking care of her, doing her groceries, making sure she was eating, all while I was still trying to heal from the SE's of chemo that lingered in me.She became very demanding and everything was put on me being the daughter, naturally my brothers took advantage of it. My one brother (the narcissist) lives right down the block from her and did nothing for her; it was more important to go party with his friends than to help her. He and I will go years without talking and that's ok with me.

I have found myself having to console a few friends about my diagnosis. Then all of a sudden I'm the expert on all things bc so every time one of their friends is dx'd I'm asked to speak to them. It gets to be frustrating as there re times when I need to be consoled and I really don't have that, other than my sweet son; and he's the one I try to hide it from as he's had to deal with enough. It's an endless cycle. But, I thank God to have all of you!

Rant over!!

This is kind of funny...

So I'm still wearing surgical bras and hoping to be cleared on Wednesday to wear regular bras, I went to the store today to try and find a couple and OMG, it was a daunting experience. I ended up getting a really bad hot flash and I actually started crying. I don't know how to buy a bra, lol. Here I was, a grown ass woman crying in the bra department...



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 24, 2021 10:23PM MaineJen wrote:

OMG Ivy, my heart ached reading this. I wanted to hug you and cry with you in the bra department! What a thing! The struggle is so real, isn't it! Between hot flashes and trying to buy new bras and just everything. And also, I'm so sad about you not being able to visit your Dad in PR. Alzheimers/dementia is the worst. It's just so painful. And your brother!

"I promise you all I'm not a terrible person, I just don't put up with anyone's crap." OMG! I am 100% sure we all see how wonderful you are and I'm so so so impressed that you don't put up with crap! It's SO hard to set boundaries with people who don't respect us. Anyway, I wish I could hug you right now. Sending GIANT hugs (socially distanced and safe, of course) your way today!

Esther - I never thanked you for your sweet messages! You are right: the Maine Candy store was magical - Maine-style. Huge hugs to you, too.

Gotto go wake my son. My daughter is already at field hockey. Taking him to the dentist this morning because strange things are happening in his mouth. Really? What do kids do? They sit there and weird stuff just happens! LOL

Love to all.

Jen

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Aug 25, 2021 12:22AM emotionalpond wrote:

Well I guess I'm not starting radiation until Sept 8th now. They called me and asked if I could wait a week because they have some emergencies. The really great thing about this is my mom will be here from Ontario (I'm in BC) so she can come with me for my first one :)

Dx 2/8/2021, IDC, Left, 1cm, Stage IIA, Grade 1, 3/16 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/2/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/7/2021 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 7/25/2021 Lymph node removal: Left, Underarm/Axillary Hormonal Therapy 8/30/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/7/2021 Whole-breast: Breast, Lymph nodes
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Aug 25, 2021 02:11AM MaineJen wrote:

Emotionalpond: So glad to know your Mom will be able to join you for your first session. That's really nice. Thinking of you! :)

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Aug 25, 2021 02:38AM swimgal wrote:

Hello, all. I just wanted to share some info I found out about yesterday. It eliminates the need for tattoos or stickers during radiation and it is available at a lot of locations. I am not having radiation until November, but I was so happy to find out my facility utilizes this for their radiation treatment. I hope this info is helpful. This link also provides a location finder.

https://www.saferradiationtherapy.com/radiation-th...


Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Aug 25, 2021 03:05AM Esther01 wrote:

Thanks Swimgal,

That new technology looks awesome. I'm glad you found a facility that has the latest and greatest. It adds a layer of comfort to an already stressful experience.

Emotionalpond, that is wonderful that the timing of your radiation will coincide with your mom being there to support you. It's funny, sometimes when I walk out of the hospital to my car, I feel like my dad would be sitting outside on a bench reading his newspaper waiting for me. He's in heaven now, but he would have done that if he were alive. Baaaaahhh (ok, I"m fine now)

I too wanted to hug you sweet ladies. I was thinking overnight about you all.

Jen, I hope your son's dentist appt is painless. Amazes me the gadgets they have these days where you can watch movies while having your teeth worked on. I had a ton of dental work right before the pandemic and watched the first half of about 20 movies. Never did find out how they ended. Haha!!

Well, one of my rad techs was a stinker yesterday and was a bit rude. He's young and has no idea how to speak to cancer patients. I am at a very good facility, but wish I had a team that was more supportive instead of just being robotic radiation techs and mechanically good at that aspect of the job. I guess that's more important, though, huh? I wouldn't want something radiated that's not supposed to get radiated.

Michele- ouch! Was there a sticker on the skin where you got the dark patch? I worry about my stickers, that I can't lotion underneath.

I am so happy you're almost done. Can I be done with you? Happy

Love and hugs today to each of you sweet ladies, xoxoxoxoxox

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 25, 2021 03:48AM MaineJen wrote:

Hi, Swimgal, thanks for posting that - that is COOL! I clicked and found that they don't have that technology where I am - but also, phew! It would have been a few days too late for me. LOL. I just got tattoos last week! I love that there is an alternative you can use. Here is what I discovered when they gave me the tiny dot tattoos: in case I was wondering if I'd ever want to sit and endure the discomfort of getting a really pretty tattoo...I wonder no longer! NO WAY, thank you very much. LOLOLOL!

Esther - you're hilarious about the movies and not finishing them. Well, now you have a bunch of movies to finish if you ever need to fill up time while sitting still again. LOL! And it sucks that you had a bit of a stinker for a radiation tech yesterday. :( I'm with you - I'd rather him be good at his job and be rude than be nice and suck at his job, though, LOL! That said, wouldn't it be better to have someone who is good at his job AND is well behaved? :) Anyway, that's a bummer. Goodness, people need to be trained re: how to engage with cancer patients while treating them in various situations. Grrrrrr.

xoxoxoxox

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Aug 25, 2021 05:05AM Marlade wrote:

Hi all! I didn't mean to be gone so long, got caught up in the whirlwind! I have enjoyed catching up reading all of your posts.

I went for my initial consultation with my RO on the 11th, I really like her, she has a great "bedside manner". She took the time to explain things and let me ask all the questions I had. Since I live 2 hours away from the cancer center where my treatments are being done, they got me in the same day to do the mapping! I was a little nervous but all went well. Many of you have mentioned the tattoos, you're right that seems to be the most painful part, but it was not bad. Of course, keeping my arms above my head for 30 minutes was definitely a little difficult. They were sound asleep LOL. Got through all that and then had to wait for the "call" to start treatment. In the meantime, my husband and I were trying to figure out where I would stay for the duration of the treatment, it is not feasible to drive that distance each day especially with all the road construction in our area! I am having 16 "double strength" treatments, my RO explained they have had much success doing stronger doses for shorter periods of time. So instead of the 6 weeks I will be doing a little over 3 weeks. We have a fifth wheel rv that we love to camp in, it is like a second home, we and were finally able to secure 2 spots for 2 weeks each at two different parks. They are literally down the street from each other so that will make it a little easier. We both have relatives in the area, but, I am always uncomfortable staying for long periods of time with other people. Especially when you are not sure how you are going to feel and are still trying to work. MaineJen my drive will not be the 2 hours back and forth, thank goodness, it is only about 20 - 25 minutes depending on traffic. My husband goes back and forth 2x a week, once during the week, he picks up supplies for the bakery he and his brother run back home and then he comes back on Friday and spends the weekend.

I was really nervous the night before treatment started, I could hardly sleep. 1st treatment was on the19th and have completed my 4th treatment as of today! I have to say that I am feeling a little more tired today than normal, but it could be just getting used to a new routine? My crew is really great, all female. We have a few laughs each morning before we get started. Those tables are really not comfortable but at least it is not for too long. The last couple were "normal" short sessions. The first two took quite a bit longer, they had to readjust on the second day because the RO wanted more coverage. Should be set for now.

The very first treatment I had two of my docs call with concerns over the whole breast radiation vs targeting the treatment site! The plastic surgeon that did my DIEP flap called my breast surgeon and everyone had lots of questions and wanted a second opinion. I mentioned that I had addressed the concerns about damage to the flap when I met with my RO. Talk about freaking out on the first day! I was sent to another RO who was also very nice and went over both pathology reports from the 1st cancer diagnosis and the current recurrence. All is well I am getting the correct treatment! It was a little scary for a while but I think they are all on the same page now. Although, my PS will be monitoring me starting on the last day of treatment for at least a year.

This will be the first full week of rads we'll see how the end of the week shapes up, I will be almost halfway through! Hope you are all doing well!

I know we all have friends who have "disappeared" once we were diagnosed or started treatment and I am truly saddened by that and honestly at times a little mad! But I am so glad to have groups like this where we can support each other, vent, scream, cry, whatever we need! Happy to meet you all rad sisters! We will get through this!

Hugs to all!

Marla

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Aug 25, 2021 05:16AM Mich21 wrote:

Hi ladies - Happy taco Tuesday :) my fiancé has to work tonight so one of my friends is driving me to Rads tonight (15/16!!) I’m on the fence about it, it’s very sweet and I appreciate it but I don’t want to be “On” so I may fake a fatigue nap on the way home. Isn’t that awful? I just always feel drained after late appointments (7pm tonight). I’d drive myself but our other car is in the shop.

Esther- No stickers. That skin is fine but all stickers are on my side where I’m really not even red, so they may be in a “Safe zone” thanks for mentioning your dad, it gave me warm fuzzies & I believe my dad would be waiting with his paper for me too.

RO told me 1 more week of the steroid cream and then I can stop. And she gave me the green light for shaving and deodorant. Little by little normalcy will return. I can’t wait to face the faucet in the shower and wear a real bra!! This sports bra bouncy uni-boob look is sooo not a good look lol

Xoxo- Michele

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 25, 2021 07:53AM Serendipity09 wrote:

EmotionalPond - I'm so happy your mom will be able to be with you!! Sounds like we may be starting around the same time. I go in this Friday and will start 5-7 days later. I'll probably be a few days ahead of you.

Swimgal - It makes sense now! My oncologists nurse called this morning to set up up my appointment for Friday (YAY).I asked about the stickers/tattoos and she said they wouldn't be using either. I was running late for PT and couldn't ask anymore questions and thought maybe there was something new or different he would use on me. I clicked the link you provided and searched locations and sure enough my RO uses this method. I will know more on Friday and let you all know. Thanks for the information!!

Esther - sorry you had to endure the rudeness of the new tech and especially during a procedure of this nature. I hope I don't have to deal with any of that. I have been so fortunate with everyone that has treated me thus far. I don't know if I'd have the patience to deal with someone rude, I'd really have to restrain myself from telling someone off, seriously, when I said above I don't put up with people's crap, I don't. Happy

Marlade like you, I'm dealing with a recurrence after my exchange surgery. My PS will be monitoring me throughout, if my implant/foob becomes deformed then after all is said and done I'll do a DIEP, but that's a last resort. Glad rads is going ok for you.

Mich21 - one more to go after today!! Wooohooo!



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 25, 2021 09:24AM swimgal wrote:

Serendipity: Glad you will have access to the AlignRT. I'd love to hear how it goes.

So this is one of my questions for my RO, but since I won't meet with her until September 29, I'll just throw it out here for all of you "doctors" Winking. Since my lumpectomy surgery had clean margins and no lymph nodes involved, how do they determine where to do radiation? Is it where the tumor was?

Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Aug 25, 2021 02:21PM Mich21 wrote:

Hi Swimgal, Dr Michele at your service! I also had wide clear margins and no lymph node involvement. They did radiation of my whole breast (but not up toward armpit or clavicle since no lymph nodes). Then I was going to have 5 boost treatments where they would have focused on the lumpectomy and scar area. They decided I didn’t need these extra boosts. Hope that helps answer :

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 25, 2021 02:51PM Marlade wrote:

Hi Swimgal, I agree with Dr. Michele! My situation is a little different since this is a recurrence, but this time I had a lumpectomy with clean margins the first time and no lymph node involvement. They are radiating the whole breast.

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Aug 25, 2021 03:01PM Marlade wrote:

Serendipity - I did the DIEP, it was a hard surgery but I have mostly been pleased with the results. Sucks that we have to go through this again! If my flap fails which is unlikely, or becomes deformed I am trying to come up with an alternative plan. I know I should just say screw it and go flat on one side, but don't think I am strong enough to do that. Not that I am so vain but there are just so many reminders of all this x2. At least now my previous scars are light so it's not so bad and I have foobs so I mostly look normal. Hopefully neither of us will have to go through another procedure!

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Aug 25, 2021 03:03PM Marlade wrote:

Mich21 - woo hoo! Happy for you, one more to go!

xoxo

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Aug 25, 2021 11:58PM swimgal wrote:

Mich21, a/k/a Dr. Michele: Thank you for that info! So glad for you you're almost done with the rads.

Blessings to all!

Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Aug 26, 2021 12:55AM Serendipity09 wrote:

Marlade - I have clear margins and no lymph node involvement this time and they will do the entire entire breast.

I will say it...I am vain; not terribly vain, but still vain. I want this beast gone from my body and will do what needs to be done, but I want my think, long, curly hair back (it's getting there slowly but surely) and to have decent looking foobs. There are definitely reminders; the scars across my "breasts", the lack of feeling on the back of my arm, the scar from the port, the neuropathy in my feet, I won't go on. We all deserve to want to look and feel good and as close to our former bodies as possible.

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 26, 2021 04:18AM MaineJen wrote:

OMG Michele you are awesome: fake a fatigue nap so you don't have to be "on" - OMG! I love it. I'm with you - it's so nice of people to offer to drive us - but it feels really hard to just let go with people we're not that close with. Even people we are sometimes fairly close with! I may use the "fatigue" nap approach! LOL.

Congrats on 15/ out of 16!!! Wait - does this mean, as I write this, that you're done??? OMG!

...and the sports bra bouncy uni-boob - omg you are HILARIOUS. I am so with you on that too! LOL!

And Marlade - omg thank goodness you're not driving back and forth 2 hours each way. Sounds like you have a really good plan for this! And omg you're almost half way through! That's AMAZING. SO happy for you!

Ivy - seems like you won't have to do tattoos or stickers and might use that new technology? That's awesome!!!

Also: I, too, want this beast gone from my body. I know we all do. :( I am thinking it's not vain to want to return to how we looked - or as close as possible to how we looked - prior to this nightmare - we do all deserve to feel and look as well and good as possible, given all of the side effects we've grappled with. I'm happy to hear your hair is growing back - mine hasn't started yet and I cannot wait. Yes, there are reminders - always. But I think it's really reasonable to want to reclaim some of how we looked before. I'm with you on that!

My husband keeps reminding me that it will all slowly (mostly) come back. I/we may be stuck with some nasty side effects - but someday we'll be able to look in the mirror and feel less sad/stressed. A neighbor of mine recently told me she went through all of this 11 years ago. I never would have known if she hadn't told me. She looks so well, healthy, beautiful - lovely hair, etc. So it will happen. We just have to make it through all of this insanity.

Love to all.

Jen



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Aug 26, 2021 05:03AM jasmine2717 wrote:

Hello and happy hump day!

I think I mentioned earlier that I had my appointment with my RO last Friday and yesterday was my simulation appointment. Swimgal I also had a lumpectomy with no lymph node involvement and I finally had clear margins after a re-excision. I'm having only partial breast radiation with a treatment called accuboost. I only have to have 10 treatments, which is amazing, and I sit in a chair with my breast in a mammogram type machine. Yesterday wasn't a lot of fun because of the location of the lumpectomy cavity but after 45 minutes of tugging and pulling the location for my treatment was finally determined. The other good news is that I get to start next Tuesday which is much earlier than I thought. It's good to have some good news for a change!!

The biggest blow to my self esteem yesterday was the reality that my poochy 63 year old tummy kept getting in the way of the machine!! OMG!! I'm definitely a gal who carries ALL my extra weight around my middle so to have the technicians keep having to move it out of the way got us all giggling. You gotta laugh or you cry moment for sure!! And guess who had a salad for lunch!!!


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