Starting Radiation August 2021 - Anyone else?
Comments
-
Sunny33 - I was floored! I was so angry. I cried in the car, but that wasn't until 3 hours later as I had just started my infusion and I was not alone in the room.
Esther01 - so happy to hear it went well! Hoping that it goes good for all of you rads! I'm looking forward to reading your post.
0 -
Hi Jen, Ivy, Sunny, Cammyquil and thank you Grandmaadam for your wonderful advice.
Welcome, LauDea! Congratulations, as they say in horse racing, you "beat me by a node."I had 11 removed. 😊
LauDea, when you go in on Monday, I would ask what kind of radiation they are giving you. I hope it is 3D/IMRT.I would ask if they will be using Deep Inspiration Breathing (DIBH) which makes sure the radiation beam is not on when your heart is in the way.The technology is really quite remarkable.
Once past the mapping/xrays/planning session(s), the actual radiation sessions are very fast. They handed me a 7-week schedule at my first radiation, showing all 33 of my sessions and at what time each day. Today was my second session and it went just fine. I have to lie on my back with a pillow under my knees, with my arms up over my head, my chin up and turned to the right, while gripping two poles (at least until my hands fall asleep).They tell you to "Breathe in… and HOLD" and then you hear the machine go on. I like to think of that sound as blasting cancer stem cells into oblivion, knowing that my healthy cells will recover but cancer cells sure won't!
About your first session… the position you are in that day will be the exact position you'll be in for every treatment, so don't let them map you until you're as comfortable as possible. For some reason, they put my hips at a weird angle at the first session, and now I'm stuck in that silly pose for 7 weeks! I was laughing tonight just thinking about it.. you can't make this stuff up! I recommend asking for a warm blanket not just for your legs but also one for your hands.
For the first week, they are working me in around their existing patients. Within the next week, they will have me coming in at my preferred time. It's funny that we were talking about male technicians, because I have a team of two male technicians for the first week and they're wonderful! I actually like them far more than the comparatively cold woman from my mapping setup who I think I'll be back with once we're at my preferred times. These two are kind, gentle, understanding, supportive, and exceedingly respectful.They make each session a breeze.
Grandmaadam, thanks for sharing about the creams! So far I'm using calendula cream right after the session, and topping it off with Aquafor when I get home. (Boiron calendula cream or ointment, or California Baby calendula cream are good).I was told to apply it everywhere on the left side of my chest all the way up to my throat, and on the left side of my neck (because they are including my supraclavicular nodes). They also told me to apply cream on the back of my shoulder because the beam will go through to the other side. All good so far.
Oh, and I would recommend wearing long sleeves for the drive home to keep the skin out of the sun. I forgot to do that yesterday. It's a new experience but I promise once you get going, it will not be so daunting. I know redness, peeling, blistering are probable with so many sessions to go, but I read today that one woman who used calendula cream never had any blisters or peeling whatsoever, and she went through 31 sessions! 😊
Blessings, you're in my heart, too Jen! You all are. I'm lifting you up in my prayers daily. Sleep well, we need good rest,
Esther
0 -
Esther you are so informed. I feel like I don’t ask any questions or know anything at all - I have no clue what kind of radiation I’m getting or how much area to cover with lotion! Luckily I meet with my RO on Monday and I’ll have these questions in hand! So, thank you!
Also, they gave me 5 tattoos but still mark me up and put the stickers over the marks lol - I was so scared of this treatment and so far I just find it funny. I guess that’s the silver lining and me keeping my spirits up. I have no grace in form trying to get up on the table and onto my stomach, I have no luck trying to get back up while covering myself back up, I have marks all over me, tattoos and I am greasy greasy greasy. Did I mention greasy? Haha!! This too shall pass.Thank you ladies for all being so wonderful, my spirits are definitely lifted. I hope you all have a nice weekend ((hugs))
0 -
Esther - thank you for all this information. Like Cammyquil, I don't know yet what type of radiation I'm getting and I had no idea as what questions to ask, but you've helped me start a list.
When you say tattoos, are they permanent? Sorry, had to ask.
Once I know what is what, I'll be purchasing some calendula cream.
I'm so grateful for all of you!
0 -
Hi Ivy - They are permanent and I found out while on the table during the mapping session that they were giving them to me! But, they’re tiny small dots, like a freckle. I didn’t see them get done but it felt like a quick single needle stab. I have one on the center of my chest, one on the center of my back, one on my rightside and two on my left side
0 -
Thanks Cammyquil!
0 -
Cammyquil, you have such a great healthy attitude about it. Laughter therapy is a good thing. I have the same problem getting onto the table to lie down, and I can never remember if the gown is supposed to open in the back or front. How many rounds will you need? And, do you keep the skin greasy greasy greasy all the time or just after the sessions? I"m trying to figure out how much ointment I should slather on
I like the scent of the Boiron calendula cream. They have it everywhere (Target, CVS, Walmart and Amazon). I forgot to buy the gentle soap they recommend we use in the shower so I'll pick that up tomorrow. It's sure nice having the weekend off.
I was worried at first that the stickers would come off, but they are pretty sticky! If anyone is still deciding about whether to do tattoos or stickers, there are pros to both. With tattoos, you can lotion your entire skin area. With stickers, you have to apply lotion around them. I read where one woman said some skin came off with the little sticker later in treatment. Well, at least it heals quickly.
I pray that each of you gets the information you need from the RO so you feel comfortable and at peace with what they are doing. I didn't have that peace until I researched it which is why I did. I was so unsettled until then.
I listened to another podcast today from Dr. Anderson (integrative oncologist) about how important it is for us to stay positive. Cammyquil's resilience and humor is a great example. That - with a clean diet and quality sleep - will help build our immune systems and sustain us through everything we're going through right now. And, we have support from each other!
Love and blessings,
Esther
0 -
Hi Esther
I am pretty greasy all the time. The lotion I have is a 2x/daily steroid. I’ve been doing that in the morning, then I shower about 2 hours before my evening appointment - When I get home I use the lotion and aquafor, so I am really greasy at night, but I figured since I’m sleeping I won’t notice. I’m a stress eater so I’m working on the clean eating, doing good so far. Baby steps still move us forward
0 -
Hello ladies! I'm really enjoying the "greasy" conversation. I love the humor you all have. It helps me a lot. You're all so wonderful and hilarious. Esther01 I'm so glad you like your first week team! And thanks for the tips about positioning while mapping. OMG you are so funny about the silly pose. I'll keep aware as I do mapping t- thank you for the heads up on that! LOL. I may just go with tattoos in order to avoid having management issues with stickers, etc. We'll see. I'm not sure I'll even have a choice - they've simply told me I'll have tattoos.
I'm about to go have some family time with the hubby and kids. I just wanted to check in and thank you all so much for being here with me - it helps a lot psychologically. And while I'm still having loads of side effects/problems from chemo, today was the first day in many, many months when I was able to drink water and not gag from the taste. So, it's small, but water tastes normal again and that's VERY much a relief. And a small baby step away from chemo. Believe me - I"m so glad. And although I'm not looking forward to radiation, I know I'll make it through with you all right here and that's hugely helpful
More soon. Sending my warmest thoughts your way - and Esther-01 - assuming you're going in tomorrow again. Holding you in my heart. Is anyone else doing radiation tomorrow or is Esther01 our first?
Jen
0 -
Cammyquil - wait, you're also going in already, right? Sorry. I've been interrupted by my kids a few times while reading/writing. Tomorrow I'll try to catch up without interruption. If you're going in too - thinking of you too! Sorry everyone!
0 -
Hi rads sisters,
How nice to have weekends off. I see a three day weekend off from rads coming up in September (Labor Day Monday). Woohoo!
Jen, I"m SO happy you can drink water again without that awful taste! That's wonderful! Sounds like a real turning point and I'm so glad. I'm praying that your immune system gets stronger every day. In fact each of you are in my prayers each day.
Thanks Cammyquil, that's so helpful. I wasn't sure if I was supposed to stay greasy all weekend or just on weekdays. I probably didn't put enough lotion on today but now I will when I go to bed. It's challenging showering thoroughly enough to remove layer upon layer of lotion while being extra gentle on the skin. I'm usually a stress eater, too! My cortisol stress level went from super high at diagnosis (27) to only half that this past month. I think a lot of it is our positive attitudes and great humor like you and Jen have. I know how vitally important it is for us to stay even keel and upbeat.I didn't realize how tiny the tattoos are. Sounds like you can't really go wrong either way.
Jen, if I don't have scoliosis now, I will after they make me lie like that for 7 weeks. You should see how ridiculous the pose is! That kind of thing always happens to me. Did I tell you I also broke their camera? Not sure if all places do this, but they tape a camera to your stomach to measure your breathing (for the breath hold) and they couldn't get it to work on me. I said it must have not liked what it had to photograph... (me). They had the whole department coming in all trying to fix the camera while I'm lying there half dressed. I thought it was tremendously funny. I'm glad you're enjoying some quality time with your husband and kids. That is the best therapy and I know you are absolute joy to them, I know just from knowing you a short time
I'm going in tomorrow again in the afternoon so I'll have the team I like. Cammyquil, I hope all goes well for you. We're getting through this!
Love and blessings, sleep well-Esther
0 -
Hi there! I recently was diagnosed with a recurrence of the cancer I had in 2014. First time around had double mastectomy and DIEP flap reconstruction. No radiation or chemo. This time, lumpectomy 7/22/21. I have been referred to and will meet with RO on 8/11/21 as well as my regular Oncologist, not sure what to expect so checking out all the options as they told me to expect to have 2 adjuvant treatments this time. My original oncotype score was 12 so I didn't have chemo and they have not mentioned it this time. I did take Arimidex for about 3 months but the side effects were so bad the Dr. took me off of it. Not sure if we will be trying again with another type? The waiting is one of the hardest parts! I will have more info Wednesday but it sounds like radiation will be the next treatment. Happy to have found this group for August! Nice to have people to ask questions to and lift each other up! So far you guys have given me a lot of information and the questions for my RO are already going into my journal.
A couple of questions:
How long after your surgery did they start radiation?
How long after your 1st RO appointment did they start the process?
Did you work a regular schedule while in treatment?
Thanks in advance!
0 -
Welcome Marlade. Saying "welcome" in a situation like this - well, it's strange, isn't it? I mean, this is not quite a group a person would want to join - but since we're all stuck in this situation, at least we're stuck in it together. So - welcome, meaning: glad you found us so we can be here to support you as well.
I'm sad you have to deal with all of this after everything you went through in 2014.
Sounds like you still might be recovering from the lumpectomy from late July? - I hope you're feeling ok-ish today? And yes, waiting is one of the hardest parts for sure. I'm so with you on that. For me - I had 2 surgeries and started chemo 3 weeks after the last one and I was still wearing a surgical bra when I went in for my first infusion. And it looks like I'll be starting radiation somewhere between 4-5 weeks after my last chemo infusion. Although that's really not relevant to your question. Sorry about that LOL. Unfortunately, I've been working full time through everything - and will continue to do so. Somehow. Thankfully I can work from home and do everything online - so no one has to see me (I've been quite the sight to see - yikes! I used to have tons of wild, curly hair - really long and crazy - my kids always said my hair was a living creature - separate from me- living on my head - because it seemed to have a life of its own LOL - and now - all gone. And that's just the tip of the "what I look like now" iceberg - sigh) and often I work from bed, which isn't ideal but the work has to get done. And - I've made more strange mistakes in these months than ever before. But I have to forgive myself about that - it's been horrifying at times - like "OMG I NEVER made mistakes like these before" - but really, I'm in cancer treatment for goodness sakes - so what can be done? I simply cannot take the time off. I've said it before: only in the USA do we come home from chemotherapy infusions and major surgeries and get back to work a few hours later. I lived with my family overseas - in Europe - for 7 years and this kind of insanity just isn't even a thing there! They think we're nuts. I think we are too, but what's the alternative.It's just the way things are at this stage in the USA. Maybe by the time my kids are grown up, things will be better? Anyway, I plan to continue this insane routine throughout radiation, which will start in the next couple of weeks. I have mapping on the 19th - maybe they'll give me my schedule then? I did, however, just say "no" to most of a major volunteer project I was running - it has been too much on top of being a Mom to 2 kids and work and family life all while enduring this nightmare. I couldn't say no to the whole thing - they need my help. So I'm still writing and disseminating press releases for them in the next few weeks. Still, that's something I can do from bed. The rest of it was in-person stuff - so, nope.
OMG I'm going on and on! Total chemo brain moment here. I'm sorry! I'm so chatty right now and my head is all over the place today. Also: my 12 year old son keeps coming in to ask me questions about nothing, so there's that too. Sorry ladies!
Esther - OMG I am laughing my butt off reading your stories about the camera and the daily pose! You are too hilarious for words! I'm so glad you're finding the experience a least a bit funny - I mean, we either laugh or cry (or both?), right? You cannot make this stuff up! I think you might be doing your session now or soon - hope it wasn't too hard and that you're ok today.
Ok -I'd better stop here. I'm not being useful at all - re: Marlade's questions. Sorry about that. Just sending my love and prayers to you all. Hugs too!
Jen
0 -
MaineJen - LOL! Thank you so much for the Welcome. The one thing I have found for certain in these groups is that there are a lot of great warriors in them!
I actually worked from home the first time around for most of my treatment and reconstruction. I hadn't been with the company very long and had no where near enough time to take off for all of the surgeries etc, I carry the insurance and am the main wage earner in our household so...
You are definitely going through a lot right now, so sorry you will have to also have radiation on top of everything else. I am doing better, still pretty sore from the lumpectomy but back at work. The tumor was very deep, down to the chest muscle. So I'm guessing it may be sore a little longer. Just getting nervous to have the radiation discussion and want to make sure I know what to ask ahead of time if possible. My doctors are all 2 hours away from where I live so I try to make the most of each visit and get as much info as I can.
Hang in there! I will update more after Wednesday's visit. Hugs to all!
0 -
Good evening Rads sisters,
Marlade, nice to meet you. I’m headed out to my 4th of 20 radiation treatments (Tonight’s is a late one) and so far I’m doing well and feeling fine, I know it’s still early but each positive day is something to celebrate 😊
My lumpectomy was June 9th, I first saw the RO mid July and had my mapping appointment on July 20th. Treatments started on 8/4, so it moved fairly quickly.I too am the wage earner and insurance carrier, so I HAVE to work. I didn’t have enough PTO to cover my surgery recovery but luckily I got state disability. It sucks that I have to work hard and conserve my days. I wish I could just rest more. Luckily I’m also working remote, in pajamas on the couch.
Gotta run, hope you are all doing well. More tomorrow ((hugs))
0 -
OK, you all are amazing, sounds like you're working through your treatment like rock stars. I know activity is good (the more we flood our cells with oxygen, the better), but not the stressful stuff. I'm glad, Jen, that you said no to the in person volunteering project since it sounds like your press release writing gifts will work way better in your schedule, and you can do that wearing fuzzy slippers. Once I forgot to change out of my fuzzies. I wore them to the post office. (I didn't go in, but I thought about it!:) Jen, I'm glad my mapping experience made you laugh. I still laugh about it, too. Judging by the amount of people surrounding me, I bet there was an announcement over the hospital loudspeaker: "Attention everyone in the building. Half naked woman in the basement radiation room. Come fix the camera on her stomach and win a $10 gift card."
Welcome, Marlade! Sorry but glad you're here in the boat with us
My lumpectomy was June 10, I flew to Hawaii two weeks later (for work until I extended the trip because I hadn't had any down time yet), and had my first visit with the RO on July 9 by Zoom while on the trip. My rads didn't start until August 5. When they schedule you for the 45-minute mapping session, it usually takes days after that to develop the plan so they can figure out how to zap what they need while protecting your organs. It took them almost two weeks to get my plan done, and then they whisked me in, handed me a calendar showing all of my treatment times through September 21, and we were off to the races. At first, they just work you in where they have availability, but then they will start working out the schedule to your desired times. I have a few more days at 5 pm and then I"ll be going in at my chosen time of 11:45 every day. I'm going to miss that afternoon crew.
Hey Cammyquil, we're almost on the same schedule. I'm on #4 today. I noticed a red spot behind my left shoulder while putting on calendula cream in the dressing room after the treatment, and it wasn't really where I'd been lotioning. I had been lotioning higher so now I'm going to cover that area too, since they say the ray can come out the back. The redness was gone by the time I got home so maybe it was from my bra. Seems too soon to have redness on the 4th day so I"m praying it doesn't come back.
Speaking of lotioning, I bought some Radiaplex on Amazon. Was it one of you sweet ladies who mentioned it? Someone did. I read that you don't even have to remove it before rads (we can't wear any lotion 4 hours before treatment or it could burn our skin more). I will be the guinea pig and find out. Hopefully I will not be the pink (or red) guinea pig.
That's it for now... Oh, and I haven't done my 8 minute pre-radiation sessions on the Bemer mat yet because I've been dashing from other appointments. (Bemer/EMF mats increase your microcirculation and a study came out showing that 8 minutes one hour prior to radiation enhanced the radiosusceptibility of the cancer cells).
Love and blessings on your day-
Esther
0 -
Marlade - your docs are 2 hours away? Does this mean you'll have a 4 hour round trip for radiation each day? OMG. Please tell me you won't be driving that much every time you have to have radiation? Am I reading that incorrectly? And I'm glad you're doing a little better, but it sounds like it might take a while to recover fully from the lumpectomy, given what you described. That had to be really upsetting and difficult. And I am so sad to hear you're still hurting at all. Sounds like it might take a while to stop feeling sore.
And OMG you have worked through it all too - what a thing. Drives me nuts that we all have been working so much through these experiences. I'll not go off on that topic again - lol - but just- argh! It's a lot to carry the weight of those responsibilities along with being in treatment. That's for sure. A LOT. Anyway, I'll look forward to hearing from you after you learn more on Wednesday. I'll be thinking of you!Cammyquil - I'm so glad you're doing ok so far! And thank God you're able to work in your PJ's on the couch - and that you were able to get disability, but oy! It DOES suck that you have to work hard and conserve your days. It really, really does. Grrr. This issue really drives me batty!
Esther - OMG you are too much! I laughed out loud reading that you went out in your fuzzies! That's such a Jen-move too! And although I do not currently own fuzzy slippers, you bet I will soon because now I HAVE to wear fuzzy slippers while writing that press release! LOL. And: "Attention Everyone in the building...." Oh. My. I soooo needed that. You are beyond!
Also: what's a bemer mat? And my computer keeps auto-correcting me to write "beer mat" LOL!!!
I'm feeling so physically crappy but my spirits are lifted by all of you - truly. When I created this thread, I wondered if I'd be the only one going through this in August. I wish for your sakes that I was - but I'm so thankful for you all. I'm having tiny moments of progress: so now I can drink water without gagging, which I've already mentioned but I'm still happy about. And today I tried a chocolate bar - nothing fancy, just Hershey's - and it tasted good! Not like mud or pepper. Although: maybe not so great that chocolate tastes good again?!
Small baby steps forward. My chemo brain is really dogging me today, though. I got into the car to run errands and had to choose which way to turn. Realized I couldn't remember where I was going and had to pull over and try to figure it out. I finally figured it out, but - really?!??! Sheesh. And the other day my husband got frustrated because apparently we had a conversation about 1-2 weeks ago - a big one! - about him taking vacation time or not. And I said to him the other day "so, let's talk about your vacation time and if you're going to take it." OMG. The look on his face! I had to promise him I wasn't messing with him, that I genuinely didn't remember the conversation, which was - well, according to him, extensive! I vaguely remember having a discussion but it was between infusions and - well, anyway, I said "how about if you just tell me what the outcomes of the conversation were - and we'll go with that." So he told me and it all sounded so reasonable and well thought out! LOL. But I can imagine that must have been very frustrating for him. And a bit odd for me - as I'm usually so on top of things. So looking forward to the effects of chemo wearing off! Sending you all hugs.
Jen
0 -
Fun fact - I got these hard bottom fuzzy slippers at Costco last year and I wear them all day around the house and I can even walk the dog outside in them. But, too many times I’ve gone out to the store or a Dentist appointment and realized I was still in them! Oops!!
I’ll need to check the back of my shoulder! I didn’t even think of that. Today is my first follow up with the RO, we’ll see what she says about my skin overall. I think it looks a little pink, but nothing major. Though, last night I felt a couple small stabs of pain. Nothing too bad, just got my attention. The tech last night mentioned fatigue and said it’s kind of like after you’ve had a bad cold and you just feel like resting and napping more and doing less but it’s not debilitating. I happen to be a fan of napping more, so I am A-Okay with that side effect lol.
I adore you all so much, thank you for the smiles0 -
Hello everyone, I'm so glad I found this thread. I have mapping done on August 13, verification on the 24 and begin Radiation on the 25th. Docs gave me a week off so I can deliver my daughter to college. I'm mad and sad the months leading up to this wonderful time in her life have been riddled with cancer, tests, dr appts surgery and now radiation. Here is one of my thousand questions...... initially they did not think I would need Radiation and they placed expaders to begin the reconstruction process and have been filling them with saline to stretch my skin. Now that I need radiation they are leaving the expanders in although I have a 60% chance the radiation will effect the tissue and I have to wait for 1 year for final reconstruction. The Dr's are so vague at what all of this means. I know I shouldn't care about what they look like, but, I do! I'm tired of not looking or feeling like me! Sorry all I'm having a rough day.....
0 -
Hi Michelle ((Hugs)) - I am also a Michele. I’m sorry I don’t know the answer to your question but I’m sure someone here will. I’m so happy that you got the week off to deliver your daughter to college. It’s going to be an amazing fun bonding adventure and that’s what she’ll cherish. Play the music loud, sing at the top of your lungs, have a milkshake and just enjoy life
That’s my best advice. 0 -
Hi, Michelle121 - welcome to our group. I'm so sorry you are having to do this radiation thing this month as well. It is a real, genuine bummer, isn't it. But we're here to support you - so glad you found us.
I can relate to what you said about being tired of not looking or feeling like yourself. wow that is a REAL thing isn't it. I look in the mirror - even now - having been diagnosed only a few months ago - and I'm still in shock. And I also don't feel like "me". - but at this point, I'm not sure I'll ever be able to return to that pre-diagnosis self. I just hope to feel well-ish again someday. I feel like I slipped on a banana peel (hearing I had cancer) and then every time I think I'll be feeling even slightly grounded, another banana peel comes and I slip again. Hard to feel like yourself when you're going through so much, isn't it. Anyway, I don't have any answers to your questions but I'm also very happy for you that you got the week off to bring your daughter to college. I love the other Michele's suggestion: sing at the top of your lungs and have a milkshake. Love that! I know what you mean about wishing your daughter's life - especially now - hadn't been impacted by cancer - I keep thinking about how hard this has been on my kids too. They're younger - 12 and 14 - and I think they should not having to be worrying about their Mom's mortality at this young stage of life - especially with Covid too. Our kids - they deserve to be free of worry. But sadly, that's just not how life has gone. Ugh. anyway, I do hope your time bringing her to college goes well and is super fun.
Cammyquil/Michele - OMG the photo of your slippers! AWESOME! You are wonderful! I cracked up reading that you have accidentally gone out to the dentist, etc. in them. Love it!
xoxoxoxo To All.
Jen
0 -
Michelle121 - Welcome, I'm sorry you're here, but as you can see it's a great group to be with.
I'm a few weeks shy of being a year out from my last chemo infusion. I had long, blonde, beautifully wild curly hair. The day it fell out I was devastated and inconsolable few weeks! I couldn't even look at myself without a wrap or a wig for months. Even now with my new hair I still don't feel like I look like myself, my hair color came back super dark, but just as curly as it was before. I had my BMX in Sept. 2020 and my exchange to implants on 7/9/21 and still have a hard time looking at them. They're not the same, I'm not the same. I mourn the loss of my breasts, what makes me really sad is that I lost the part of me that fed and nourished my son, granted he's almost 21, lol. I anticipate some changes with radiation. I find out tomorrow/Thursday when I will get may mapping done to start radiation after my recurrence diagnosis on 7/14/21. I, too, will have to wait a year after radiation to get any surgeries/revisions to correct any possible deformities I may incur from radiation or any revisions I may have needed anyways. My PS said it would have been ideal to have radiation prior to getting the implants, but just the same, she will make sure to get me where I want to be after radiation. the goal right now is remove this monster. I'm nervous about radiation, but staying positive; I can easily go down a rabbit hole and not come back up. Def don't want to do that. My son has been my rock throughout all of this and I'm just trying really hard to not add anymore stress to him as he enters his last year in college.
Cammyquil - love the slippers.
Esther - I left the house on several occasions during the colder months in fuzzy socks too, was pretty funny. I anticipate it will happen again!
Have a great night everyone!!
0 -
Hello
I think I'm starting my radiation this month too. I have my mapping today. I have also done chemo (which didn't work on my cancer) and 2 surgeries! I feel like I'm at the end of this race I've been running that I didn't sign up for lol! I will be on tamoxifen for about 10 years. I'm nervous about radiation and the side effects that come with it. My biggest concern is going to be lymphodima since I have a 20% chance of getting it now
0 -
Emotionalpond - welcome to the group, sorry you have to be here, but you'll soon see it's a great bunch to be with. I still don't have an appointment for my mapping yet, my PS did not clear me yesterday for radiation as I thought she was going to. Two more weeks of waiting for me. I'm hoping the RO will at least get me and the calendar for two weeks from today.
0 -
I am starting radiation next week. Simulation is tomorrow. I am petrified!
0 -
mslo100 Please be reassured. The mapping process is painless unless you get the tattoos. I understand they feel like pinpricks. I don't know because I requested/demanded sharpie marks and clear stickers. For some it may be difficult to lay still for so long with your arms over your head. You will be laying on a hard flat surface with absolutely no padding for your simulation and for treatments. You can take Tylenol or whatever you use before the appointment. The hardest part for me was having my breasts exposed to strangers ... having to ask for doors to be closed, having to ask to stay covered unless necessary, having to ask that unnecessary personnel leave (students, etc). You just have to advocate for yourself. This situation doesn't always happen but I've heard worse ... again advocate for yourself, if you're not comfortable with the situation ... say something. In my case all of my requests were honored without any pushback. There is no reason you cannot be covered during the actual CT scan or until they need to place marks on your body. I was completely taken aback by someone pulling out a camera to take pictures of my naked breast. They said they had to do it. This also happened more than once during the actual treatments. For some women this doesn't bother them, you know yourself better than anyone. The techs were very kind and listened to my concerns and answered questions.
Bottom line ... doesn't hurt, does not go fast, they will probably make a mold (in my case air sucked out of a "pillow" till the interior material fitted to my body) that went under my top shoulders, head and arms over my head. For the mold make sure you are as comfortable as possible, your body isn't twisted or like you aren't up on one hip. You will have to stay in this exact position for all your treatments, be as comfortable as you possibly can be. Good luck. You'll be fine.
0 -
I just finished 21 sessions (16 whole breast and 5 boosts) My center uses back boards that are inflated to support the position they put you in during mapping. Sorry to hear so many are left laying on the table without one. I think you all need to make a stink about it. They make a huge difference in comfort level.
0 -
Hi, Emotionalpond - sounds like you and I have been through a lot of very similar stuff. And yes, running a race we didn't sign up for indeed! LOL! I've said that I feel like I'm a baton in a relay race, the runners are the docs and I'm being passed from one to the next. And I just have to cope with being passed around. Like you, I'm doing some sort of hormone pill (tamoxifen or whatever - haven't been told exactly yet) after radiation for 10 years - but more surgeries before that and after radiation (I've had 2 surgeries already). Like you, I'm nervous about the side effects of radiation - especially as I'm not yet recovered from chemo - and, like you, I'm scared to death about lymphodema - I was told the 20% number too. Oyyyyy. I just feel like - ugh, haven't we been through enough yet? Apparently not, lol. It's a lot. A LOT. By now you've had your mapping? How did it go? I have mine a week from today. I feel like I'm the last one to start in this group! I'm not in any hurry, but still.
Mommamoaster - thanks for the idea about back boards that are inflated. I've not done mapping yet, but I'll keep this in mind.
MSLO100 - I'm petrified too. I have literally found myself waking up around 2am every night and I'm just awake, like a deer in headlights. I know it'll be ok and won't hurt, etc. - and I'm SOOOOO grateful to this group for reassuring us and for helping us manage through the fear.(thank you so much Grandmaadams - you are so sweet to reassure us and to remind us to self advocate). But still, I think - omg how can I go through even more!? I just feel full of fear. It's not intellectual. What is so odd - I keep thinking about this: I was less afraid about my first chemo infusion and holy crap, now that I've been through all of that - what was I thinking? ! I should have been terrified! LOL. Too late now! LOL. Or - when they told me they'd have to inject radioactive ink into my boob - I wasn't scared. Why?! Well, holy moly I should have been! That was REALLY awful! So - here I am - anticipating something physically painless with absolute terror in my heart. It makes. no sense. Except maybe it's just all too much now? I feel overwhelmed and not physically strong the way I was the day before my first chemo infusion. I was still wearing a surgical bra, but I was much stronger than I am now - post-chemo. I'm so sick and weak. Anyway, I hear you!
Ivy09 - Hope you're doing ok. Just wanted to say hi.
Michelle121 - you're having mapping tomorrow, right? thinking of you. Let us know how you're doing.
Esther01 - thinking of you so much. xo
So on a totally random note, I got a care package from my childhood best friend yesterday. She lives in CA, I live in Maine. We're 52, so we've known one another for a lonnnnnng time.
Anyway, it was full of candy...and...drumroll please.....FUZZY SOCKS! LOL! Seriously!? She does not even know we're having the fuzzy slippers conversation! LOL! I'm not techno-savvy enough to post a picture like cammyquil did - but when I saw the fuzzy socks, I really laughed. Thought of all of you! (And I'm waiting til my tastebuds come back a bit more, as I tasted some of the candy - and - well, almost! not quite there yet.) But.... FUZZY SOCKS! Love to all.
Jen
0 -
Hi, Ladies,
Just a note to share that I did some research and found this really soft, comfy bra made by a company called "Makemerry." It just arrived and I tried it on - it is so lovely and soft and has no wires. It's wayyyy better than the surgical bras I've worn (too often and for too many weeks) and much softer and looser - in a good way - than a sports bra. Anyway, apparently the person who founded the company makes them for women who are going through radiation. I thought I'd share. The bra wasn't cheap, but I thought it was worth a try. I like it. I might spring for a second one.
Jen
0 -
MainJen I completely understand your terror, it's not imagined. I had a pretty big meltdown in my RO's office. He asked why I was so upset. I said "I know you are not holding a gun in your hand but that's what it feels like". That big machine will be shooting death rays at your boob and you have to trust that the techs are paying attention and watching, that someone has correctly entered the information into the computer. It's scary as hell. And then what are the after effects. I've been incredibly fortunate that after my skin healed. After the treatments my skin got worse before the healing started but then healed quickly. No lymphedema. BUT the idea is still there in my head ... did I do the right thing? what are the long term effects? It's scary.
0
