Summer 2015 Rads
Comments
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Normal to mope. A support group might be good, or a counselor.
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So today was my 9th treatment! The guy who came to get me from the waiting room was like, "you are the only person who jumps up, smiles and comes straight back like you just got called onto the Price is Right". LOL!! I figure it doesn't make it any better if I mope about it and these techs are doing their job day in and day out. The least I could do is give them a smile! It is funny to me to watch how different techs align me on the platform. Some are super quick at it and are like boom, bam, here we go. Others are slower and have to fidget a little to get me "just right". But I trust them all to do their jobs. I can see on the monitor when they have me lined up because all of the lines are green not red. It's kind of like a video game. I'm getting used to it all. I find that I am not at all bothered by anything cancer related anymore. I have (when do I get to say had?) cancer. It sucks but I'm finally getting close to the end of treatment. It has been a LONG time coming. 5 months of chemo, 6ish weeks for surgery/recovery, and now radiation. I can see the light and am thankful for my treatment team! I have started exercising again and that has made a big difference too. It's exciting . . . almost like waiting for Christmas as a kid. Just a little bit longer! I'm speaking at a conference this weekend. We have a panel of breast cancer survivors discussing body image related issues. I'm excited about that too. I'm just all excited today for some reason!
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I consider that I do not have cancer since surgery. All this other treatment is to underscore to any stray mutant cells that they aren't going to get a chance to mutate further.
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Oh wow, Frefluterb, I am not a fan of your aunt. She is mean, and Sweethope is right--and she's misinformed about radiation after lumpectomy ... it is mandatory because it reduces recurrence risk. I'm so distressed for you and wish there were someone else who could give you a gentle, helpful ride every day instead of berating you. Really, I am so sorry you are being mistreated, and I hope she will start behaving like an adult.
Sweethope, I had a change of heart, too. The day after I cried during radiation, the doctor asked to see me (she had just seen me two days prior), said everyone told her I had been upset, wanted to know how to help, etc. I had about 15 questions written down, and she answered them all. I'm like you; I could not relax without more information. I didn't like being told by a technician that I'd have to have a bolus--I wanted the doctor to explain and describe it. My RO has had cancer, too, and she has lymphedema. She said, "You're right. It's scary," and we talked about how the worry doesn't really go away, even years later. Somehow I felt much better.
The cancer support center's social worker this morning was awesome. I told him what a coward I had been, sobbing like that, not able to control my fear. He said there's no shame in being scared. And being vulnerable is brave. I don't really buy it ... I don't feel brave at all; I feel terrified. But after the conversation with my RO, I do feel better, and even a little cared about. Even if these technicians don't truly care about us--and they don't, really--at least they care about doing their job well.
And KnittingPT, the Price is Right comment is hilarious. I am going to smile from now on. Thank you for posting that story!
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Regarding bras, so far I am wearing my regular bras, underwire and all, despite what the Rad nurse said. I am larger busted and it is too painful to not wear a bra, and one with little support or too much compression hurts too. Someone else lined the cup with super soft flannel, which is what I am doing--finally pays to be a pack rat, as these are the very washcloths I made for my kids 23 years ago! 8 treatments so far, skin good and no fatigue. Miaderm after treatment and before bed, shower next morning. Fingers are crossed! Good luck everyone!
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even tho we all were diagnosed with BC. We are all different. Different diagnosis and different treatments.how many people just assume all cancers and treatments are a one type fits all because they just don't know? for your aunt to say a treatment isnt necessary may have been right for her individual case but isn't necessary an educated statement for anyone else. You Don't deserve to be bullied. listen to your body and be kind to yourself .
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Thanks ladies. I am working on getting some women friends together to rotate taking me to my rads. Today was a couple of great women, they will take me on Fridays what a great way to end my first week. I have another taking me on Monday also to my CT for my eyes. My aunt seemed very upset that I am doing this ( I could go on an on with that conversation but I won't). It's about taking care of me with a gentle heart. She refused radiation as was her right, because it freaked her out. Oh well ...
Thanks so much for the validat
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Frefluterb,
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Frefluterb, I agree with Sweethope. There are agencies who can provide a ride to your treatments. She isn't helping you.
I didn't think I was going to need radiation and in fact was very angry when I was told I world need it. But once it was explained that the pathology from my mastectomy showed I still had active cancer cells after chemo, I had no choice. I know someone who needed no chemo or radiation, just mastectomy. Everyone is different and she needs to realize that.
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I will be joining this group within the next couple of weeks, too. I know I'm one of the luckier ones, in that I don't need chemo. Lucky especially since I have another significant (and rare) illness, so not sure I'd be able to tolerate it anyway. Imagine my relief at "only" needing radiation - something that has always scared the crap out of me anyway.
Reading this thread is helpful, as well as alarming. I'm learning really important information and coping skills, so I'm grateful for that. Not so thrilled about some of this, but trying not to let fear overwhelm me. I didn't know about all the markings, and rads affecting areas other than my breast, but I need to know these things! For example - do I discontinue Forteo, since it can cause osteosarcoma (although that's only happened in rats)? Will be contacting my endocrinologist this week.
Trying to maintain a sense of humor here. Dh doesn't like tattoos. I'd been threatening to get one for a while and now, apparently, this will actually happen. As I told dh - Winning! lol Ok, I have a weird sense of humor, but it helps.
My first appt. with the RO is on Friday, I guess I'll learn a whole lot more then. I do know that she recommends a white cotton bra, no underwire, and using aloe from the actual plant. And that they provide creams, etc.
I'm really, really not looking forward to a hot, humid summer, with hot flashes, and no deodorant. Ugh. (Sometimes it's easier to look at things like this, rather than obsess about cancer/treatment/side effects). I'm extremely worried about fatigue, since that is already a huge problem for me. Guess it's time to batten down the hatches... I'm glad this website and this thread are here, but I do feel like I've just boarded the crazy train:(
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Frefluterb -- My sister has been the main person helping me out through chemo/surgery/up-coming rads... Every now and then she will be totally obnoxious (although I'm sure she's thinking she's 'doing it for my own good'). It's mostly because we are both human and are in a stressful situation (she as care-giver, me going through all this crap)... and neither of us are perfect. I try and ignore what I can because she's really helping at other times... Anyway, I hope your aunt gets a grip and doesn't take out her frustrations on you!
The American Cancer Society has a service where they will try and match volunteers with people--to drive them to infusions and appointments and rads, etc. You can try them, also, to give your friends a break, if needed.
Metta -- you know, that thing about bravery is actually kind of true. They say that the bravest people are those who are very afraid but still do what they need to do! And that those who don't have fears aren't brave, they are just not thinking right, because to not have fear isn't really reasonable. So you actually ARE brave, even if it doesn't feel that way to you. Anyway--however you can get through this bad situation-- that's what you have to do. Screaming and crying or moping or just showing a pleasant face to everyone--whatever you need to do, that's how it should be! There is no right or wrong way.
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Finally got my start date for rads-- This Thursday! 7 weeks! Not looking forward to it, but it's gotta be done... no choice.. at least if I want to try and keep cancer away...
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I know nothing is normal, but after 4 treatments the fatigue kicked in hard this week-end. Radiation has been fine, but fatigue omg!
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I went for my simulation this morning - it is SO COLD in there! They tucked warm blankets around me but still. I am going to start carrying thick wool socks in my purse to wear during treatments! I will start next Thursday. So ready to get going.
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Molly, how long did your sim take? I go in in about 3 weeks.
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I was there for ages because it took them an hour to get back the pregnancy test results (they really should have just taken my word for it!). But I was probably in the room no more than 15-20 minutes. They just taped some wires to me, did a quick CT scan, and then took the wires off and wrote three X's on me in sharpie. I thought there was going to be more to it than that!
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Thanks, Molly.
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It's funny you say your room is cold. Mine is usually warm, almost to warm.
I'm very thankful that my techs are all very personable. I know not everyone is that lucky.
14 down, 11 to go
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The room I'm in is pretty comfortable temperature. My treatments are pretty quick too so it's not too bad. They have nice gowns for us to wear and I just slip my one arm out right before they zap me.
Molly1976, that was about how mine went too. The treatments don't take much longer than that either. I get on the table, they line me up (some are quicker to get me in position than others) and then they do a treatment from the right side, a treatment from the left side, and a treatment from right above me. Then I'm out!
I'm on 11/33 treatments today. It is going by pretty quickly. I haven't had too much fatigue yet just some reddening/itching of my skin. I have been able to exercise every day so I'm finally losing some of the weight I gained when I ate nothing but sweets during chemo :-) I am starting to feel like myself again. I'm hoping I can keep up the exercise.
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Is anyone else only doing 20 treatments? My RO said they have data that show it is just as good as the longer course and may even be better. She said she thought I would be a candidate for the shorter course but won't know until she looks at the CT. Fingers crossed!
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Great job knitting! Hope you keep feeling better
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Molly I'm scheduled for 20 chest wall rads and then if my skin is holding up okay the RO wants to do a "boost" of 5 more treatments aimed at my scar. I guess that's pretty standard.
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Hi Ladies,
I am 17 days post op from my LX and SNB And just started back to work yesterday. I am feeling pretty run down as I have a long commute, and my breast is much more achy than it was last week. I am hoping it is just the switch from resting to working that is bringing me to a standstill.
I am meeting my MO tomorrow, but my breast surgeon told me she would be shocked if i Need chemo, so I am hoping that she will and me over to the RO tomorrow so I can get on with the radiation in the next couple of weeks. I appreciate all of the information being shared.
Thanks!
-Midgie
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Hi everyone , 2nd rad tx yesterday first time there with no tears. Cried through sim (30 mins). And dry run plus 1 st treatment , but yesterday I dozed off for the 8 mins, so progress !
RO told me yesterday that plain old coconut oil has had the best result in keeping skin healthy. Massage into area 3 x day. I had it from back when my hair was falling out and my scalp hurt. She said to carry aloe around in my bag for work if my skin hurts, and a little corn starch for chafing . Plus she gave me a referral for physical therapy , my right tissue expander is all scarred in ( capsular contraction). And painful and hard and mostly in my armpit not where it is supposed to be, frequent massage and some stretching may keep it from worsening so I Can get through rad txt and have the implant exchange in a few mos.
saw Dave Matthews concert. last night either he wasn't at his best or the rads are kicking in but I danced less than normally. Still a beautiful spring night under the stars at the beach so who am I to complain!,
A little yoga this morning. Try too keep energy up. Take care everyone. Linda Ps 25 treatment I think is standard for my treatment center
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Midgiemoon, My achy breast was caused by a 6 cm seroma after my LX...I held that poor girl for two months while riding in a car or sometimes just walking. A tight sports bra helped. Some here have had to have them drained by needle aspiration. Mine just dissolved on its own.
Are you getting your Oncotype score today? Hope your score is really low. Being in the medium range 18 - 25 is a real brain drain. Chemo? No chemo? Flip a coin!
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I asked for the shorter treatment course but was told I wasn't a candidate. If I remember it correctly, it was because of my node involvement.
I am today 11 days since my last rad TX and I am seeing an improvement in the entire area. They had told me it can take 2 weeks so I'm super glad to see it start to get better now. The worst area is still a bit weepy but so much less. Most of the dead tissue there is gone and I can see the pink new skin below. The other areas did not really get too painful - more dry and now a bit itchy. The moisturizer helps with all of that though.
It sounds like the areas they radiate are so different for each of us. If I had known more, I would definitely have asked more questions. I don't see my RO again until January 2016. I'm hoping this will all be a distant memory by then too!
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I made my own little formula. I steeped some lavender in a bit of water. Added some fresh aloe then mixed it with the coconut oil. I know water and oil don't mix but if you shake it up the essence of the lavender and aloe gets in the oil. Lavender is calming and has a natural antiseptic quality. Aloe is healing. Coconut oil is moisturizing. It has been working well. 7/33 done.
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i had an appt with RO yesterday. Guess I didn't ask enough questions because it was my actual Sim appt. I thought it was just an informative session.. So glad I had this forum that I've been following so I could quickly get my head into it. It was pretty quick and easy other than being cold and shivering during the scan process . Tattooing was simpler than I thought. You have to look really hard to see them. Like a freckle. I have a 3 week break as I'm leaving for 10 days with family for vacation then 6.5 weeks of mon-fri rads . Dr said to prepare my skin with gold bond sample they gave me. Once a day for now.
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had my sim appt yesterday. Three hours! With X-rays, CT scan, and they made a mold for me with foam. I think one of my tattoos wasn't deep enough. I cant even see it today. The center of my chest too! They'll prob have to do it again. Go back next Tues for first appt. 25 and supraclavicular too. That was a bit of a surprise during the consent process
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Sweet hope,
My Mo and I met today for the first time and we are sending a sample for the oncotype this week. I go back on the 24th to see what the results are, I also have the RO consult, so I feel like I will be into July before this all starts.
On my way out, I ran into this little girl! Nice way to finish up!
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OMG! What a cute puppy!
Gatomal, don't worry about the tattoo. The techs will find it and probably mark it with a magic marker every several sessions. They never even look at the tattoo that is in the middle of my chest. And since the first session they keep magic marking an X above my nipple.
Live deliciously, Have a great vacation!
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