Spring 2015 Radiation Sisters

DaisyQ

First day of radiation treatment today! 29 to go..

mhenz: I feel the same way.. My kids are 14 & 12. The past 6 1/2 months have been so hard on them. They need their mom present and healthy. I will do anything to make that happen, and my docs think this is the best insurance against a recurrence. In the meantime, I am making changes at home: reduced stress, healthy diet, exercise, better sleep schedule, meditation, therapy.. I all this helps protect against the negative side effects of treatment. We'll see..but at least I feel more in control.

Jean: I am doing a similar thing. I am a morning person so rads are pretty early. I am leaving the house early and driving through Forest Park on my way to treatment. I am taking a photo in the same place every day. At the end of my 6 weeks I hope to have 30 photos that show spring unfolding in St. Louis.

CoyoteNV

I followed the March Winter Warriors over to wish all you Spring Rads Sisters the best of luck.  For those of you who enlisted on the Winter Warrior topic, don't forget to let us know how it's going.  I'll keep an eye out to make sure your smiley gets posted.  Hugs to all. 

sybilskelton

My heart goes out to those of you with younger kids. Years ago I went through treatment for cervical cancer and my daughter was only 14 at the time. I remember the sheer terror in her face, the first words out of her mouth were "are you going to die". I told her "not today". Teenagers are not very good at verbalizing their feelings, or anything else for that matter, but I saw how scared she was and it killed me to not be able to do anything about it. As parents we often want to cushion the hard edges of life for our kids, and sometimes that's not possible.

My daughter is now 25, and I know she's still that scared kid inside when it comes to her mom having cancer again. And while it still breaks my heart, at least she has more life experience to deal with it. And fortunately for all of us, cancer is not the death sentence it was once upon a time.

amylsp

Thank you Coyote. I am so thankful for all of winter warriors and being able to read through your experiences. Hopefully the spring sisters will be able to offer the same comfort and assistance to those who will receive rads in the summer. And we'll all just continue to pay it forward.

I had my 'dry run' yesterday, and will start radiation this Monday. I almost laughed when one of the techs hovering over me asked one of the other techs to move the table up 2mm! It was comforting to know they want to get the positioning right down to the last mm.

ElaineTherese

amylsp,

I know the positioning has to be very precise, but it can be trying to be lying on the table having the techs pushing and prodding my body into position. I always leave rads a little sore, mostly because the techs put me in a position that isn't very comfortable.

mysunshine48

DaisyQ - did your RO talk to you about the effects of RADS on your expander and skin? I am going to have a BMX in a couple weeks and have expanders too. I am also wondering why you need radiation after BMX. I thought that you only needed radiation after a lumpectomy. ? That is one reason I am choosing MX over lumpectomy. I have read so much about radiation shrinking your breast, making skin a mess (have seen awful pictures) and long term effects. Anything you can share would be helpful.

ElaineTherese

mysunshine48 -- Whether or not a BC patient is recommended radiation depends on a number of factors. A patient who gets a BMX might still get radiation if her cancer is locally advanced and there is nodal involvement. I was diagnosed with an aggressive form of cancer (Grade 3), had a large tumor (5 cm.+) and had nodal involvement, so even if I chose BMX, my MO and RO would still have recommended rads.

Hopeful82014

Thanks to those of you who chimed in with suggestions for dealing with the seat belt - I really appreciate that.

Coyote, I've read some of your posts on the winter thread and truly enjoyed them. You captured the beauty of that region and overlayed that tough radiation saga with nature's majesty. I found them very healing and uplifting. Thank you for taking the time to share with all of us. I hope you're doing well and will continue to do so.

Hopeful82014

Mysunshine - Elaine is so right! Mx or bmx never guarantees that radiation won't be necessary. Please have a thorough discussion of that topic with your surgeon before you make any decisions based on that assumption. I'm so put off by the long-term side effects of radiation that I'd seriously explore MX if it would mean I could avoid rad. but that's not in the cards. I guess the upside is that it's one less decision I have to make.

Beachbum1023

Welcome Spring Rads Sisters!! I just finished as a part of the Winter Rads Group yesterday. I did have a mastectomy and rads, and other than all of the usual skin issues, I think I am doing well. Some do better than others as always. My skin has peeled in some areas, but not in others. The armpit and my side are the worst. The scar is a little darker, but it fades over time. Just follow all of the instructions from the RO and nurses and you should be just fine! I feel like it is just added insurance to get past this and move on. I do NOT have any place to be on Monday, a super good feeling.

Just remember that you are never alone here, we all walk together at some point, and let us know if there is anything we can do to help along the way. I'll be waiting for all of you at the finish line! Best of Luck, Cheryl

Hopeful82014

Cheryl, Congratulations on finishing! Enjoy your day at leisure on Monday!!

NurseShark

I am having radiation after bmx. I had grade 3 triple negative tumor with lymph node involvement.

I had lumpectomy and axillary nodes removed before chemo. Then found out brca 1 so decided bmx was best.

I had bmx with direct implant nervous about how implant will hold up. . Was planning on doing rads locally,i live about an hour from Boston where I received chemo and surgery but traffic can make trip up to 2hours one way sometimes. second guessing decision after f/u with plastic surgeon who said she wouldnt recommend going outside facility bc results vary(cosmetically). Driving into Boston daily would be very inconvenient and stressful especially since I have a 4 month old as well. The rad onc and facility(which is affiliated with dana farber) was recommended by my breast surgeon and only 12minutes from my house...I was completely comfortable with decision until ps said that... kinda pissed me off because I told her before surgery my plan and she didn't mention anything about wanting me to come to Boston.

Any body have opinion about going to local radiation centers vs big medical centers effects on outcome ???

Beachbum1023

Hopeful and Nurseshark, Thank You! One of the ladies from my rads group at the cancer center had TE'S and the other implants and they are past the halfway mark without issues. I hope you sail right through!

ElaineTherese

Nurse Shark,

I could go to a nearby city and use a well-respected university cancer center, but I'm fine with my regional hospital. It turns out that my RO works at both hospitals and has the same equipment at both. He actually likes working at the regional hospital better because he gets to spend more time with his patients there. I wouldn't write off the local facility yet if I were you. At least meet with the RO and discuss your concerns about your reconstruction holding up.

DaisyQ

mysunshine48: Rads were part of the treatment plan from the very beginning since my tumor was 2cm and HER2+ with a cluster of cells in my sentinel node. pCR and BMX did not change the plan. Like others, this is an insurance policy that I am willing to have despite the potential down sides. I am glad to hear that others with TE's haven't had problems. I hope to have the same experience. My PS said we have to wait at least 3 months for exchange surgery to allow by skin and body to recover from radiation.

Sybilskelton: I am sorry you are dealing with another cancer diagnosis. And your words about our children..that's exactly how I feel. By the way, my son is an avid soccer player and fan. Not a day goes by that the ball isn't on his foot. Everton is his team so, of course, your avatar caught my eye! During my chemo recovery days we spent so much time on the couch watching soccer game after soccer game together. It was his way to be with me through all that tough stuff. Last weekend was the first time I saw him play since October. Since my dx he wore a pink athletic shirt under his jersey so I could be there with him. Our children are sweet gifts.

NurseShark: 2-4 hours a day RT for rads sounds horrible--especially with your baby. I agree with Elaine's suggestion to discuss your concerns with your RO. While I like my PS, he is very protective of his work and the optimal conditions needed. Neither are very concerned about long-term issues caused by rads.

I have only had 2 treatments. Next week is my first full week. It is a long haul, but we can do it!

sybilskelton

Daisy, that is so sweet of your son to remember you during his games. And he's a Blue! Yay. COYB

Neither of my kids played soccer, always baseball and basketball, so I never developed much interest in the game. For some reason during the World Cup I got really into it and discovered that I really enjoy the game. Since NBC bought the EPL games and show ALL of them I set out to find a team and get into it. During the weeks of chemo when I felt like death warmed over, I would lay on my couch Saturday and Sunday mornings and watch all the games. They start so early in the morning and that was great since I wasn't sleeping much. Now that I'm feeling more like a human again I may go back to watching the games up at the pub with other supporters. Very fun.

Nike

Hi Spring Rads Sisters. Thank you for creating this thread! I haven't started yet, although I had my lumpectomy January 5. I developed a hematoma that bruised my entire upper half and finally exploded, and then an infected seroma in its place...so now have a "hole" in my breast that needs to heal from the inside out, and I'm packing it daily with Dakin's solution-soaked gauze. Once that is healed and closed up I will be able to start radiation. Not going as fast as I'd like but I'm still hoping to start in Spring. I haven't really started thinking about it yet in terms of how it/I will feel, straps on seat belts, bras, etc. but after having unexpected complications after what was supposed to be an "easy" lumpectomy, I figure I better plan this part out a little better! Looking forward to getting to know all of you.

Joanne

Beachbum1023

Hi Nike, I have my port on the left, and rads and mastectomy on the right. The seat belt strap drove me crazy. I have a little brown stuffed puppy that I put under the seat belt and it works great. Stuffed animals are cheap. and oh so cute. And it's good for a laugh. Others use pillows, but I couldn't find a comfortable one, all too big, too stiff whatever. I hope you find something comfortable!

MombieZombie

Never joined a discussion board before, but I'm jumping in. Not sure whether I belong with the Winter gals or the Spring gals since I started rad on Feb 17, but don't finish until April. I'm half way through. Skin isn't showing too much trouble. My lumpectomy scar is under the breast right where breast meets chest. That's where I'm having the most skin trouble. Any favorite ways of dealing with that? Also, is there anyone who is completely uncomfortable with being exposed, having pictures taken while you are unclothed and such? I have some emotional scars from my past and this part of rads treatment is giving me the worst anxiety. I can barely stand to go in each day. I thought I would get used to it, but I'm not. I have lots to live for, so I pick myself up and go because I want to get well. But I understand there will be more pictures taken when it's time for the boost days.

ElaineTherese

MombieZombie -- my RO prescribed some cream called RadiaPlex to deal with skin issues. But, I've only done one week so far, so I haven't had any skin problems yet.

I can see why rads is a struggle for you, given your past issues. This treatment isn't always kind to human dignity. For me, I no longer care who sees my boobs or touches them. Every MO appointment, every time I visit with my surgeon, and now rads -- it's take off your top/bra and slip into one of those front-opening smocks. At many of these appointments, someone is going to grope me and prod me like a piece of meat. My surgeon was being shadowed by an intern, and he had her feel up my boob after neoadjuvant chemo -- "No more lump! It's like normal breast tissue again," he enthused. (He asked my permission first.) So, the exposure, the pictures -- it's just one more part of how BC treatment can be dehumanizing.

Best wishes to you -- hope you make it through rads anyways.

MombieZombie

Elaine Therese, thanks for the encouraging words and sympathy. I'm glad your skin is OK so far. My skin stayed pretty good until I got half way. Things still aren't too bad yet for me as far as pain and skin go. I can count my blessings there. I'm sorry you were stuck with an intern along for the ride. You sound like a better trooper than me.

The only place I have felt more at ease was with my surgeon and the outpatient surgery center. They were super kind and respectful of my past. Everyone went out of their way to try their best to keep my anxieties at bay.

I wish I felt like you--that so many people have seen me and touched me that I would become desensitized to it. Sadly, the more people who see me, the worse it gets. This radiation center is set up in a coed setting, which isn't helping. The men and the women use the same dressing rooms and waiting room. I can hardly stand to be there when there's men in the waiting area. I am permitted to wear a bulky sweater over my hospital gown, which helps me some. But the other day, I was brought back to the treatment room too soon, before the previous patient had left, and I saw them on the video monitor in the radiation room. Now I wonder how often they make that mistake. They did finally realize how paralyzing this is for me and they put a cover over my breasts after positioning me each day. I am going to ask if there is any way they can do my boosts without the photos. I WILL finish, however I must, but it might be at the price of needing another kind of therapy when it's over.

DaisyQ

Mombie: I was slow to join the discussions here at BC.org, but sharing my experiences and reading the wisdom of others has helped me so much with the emotional burdens. I am never alone. Although my experiences are mine alone, I believe each one resonates with someone, and we are all connected by little, invisible threads. So welcome. I hope you find the support, wisdom, and genuine caring that I have found here.

I am sad that BC and rads are poking at some emotional pain from your past. I am angry that you have to face it along with all the other emotional junk a cancer dx brings. When I went in for my simulation I thought how uncomfortable I would be in that situation if I still had my breasts. Does your cancer center / hospital have counseling services? I suffer from occasional anxiety and have been seeing a counselor since November. It has helped me stay centered. I still have my freak-out days, but better days always prevail.

Nike: That sounds awful! Speedy healing for you.. Stick around and please let us know how you are doing.

ElaineTherese

MombieZombie -- my rads center is co-ed, too. My appointments seem to be between those of two older men. So far, we've just been "ships that pass in the night" -- I just see them in the waiting room really. Wow about the video monitor! So much for patient privacy.

I actually have a male rads tech in the room from time to time. The other techs asked me if I minded and I said I didn't. The male tech and I talk sports; it reduces the awkwardness a bit.

Well, at least your techs are trying to be sensitive to your concerns. Hope they do let you do the boosts without the photos!

PerAngusta

Hello! I just had an appointment with my radiation doc on Friday. I had a bilateral mastectomy with no recon on December 3rd. I had 24 lymph nodes removed and only one node had cancer. I've been having chemo since January, lost my hair, feel sick and know that I am triple positive (Estrogen, Prog, HER2). My tumor was app. 2.5 cm. I was diagnosed this past summer, at age 48. Ho history of cancer in my family.

I don't normally use these discussion boards to make decisions beyond clothing, creams or helpful tips. I talk to my docs if I have any questions about diagnosis, prognosis, treatments. THEN, I met with my radiation doc who tells me that "radiation is entirely up to me - do I want to proceed? - please decide and get back to him as soon as I can.". What? The? Heck? ME? I'm supposed to figure this out? How do I do that?

Okay. If it's up to me and all the rest of the non-medically trained folks to decide then......hmmmm....whadda you ladies think? I'm looking for reading material or something that might indicate why there is no clear path - radiation or no radiation - for my particular circumstances. Have any of you been in this boat? What did you decide and what rationale did you use?

I sure could use some help. I will meet with my medical oncologist (she DID tell me that I would be having radiation???) on March 20th....and believe me, I will ask all the questions I can think of....but at this time, I'm not sure I have any intelligent questions. Clearly, my simple, non medically educated mind is directing me to choose "which way will help me to avoid DEATH AND SUFFERING?" Radiate or not?? That IS the question!!

Heeeeeeeeeelp?

MombieZombie

Thanks for the care and advice Daisy Q and Elaine. DaisyQ I think I talked to you in another discussion thread too. Don't know if you noticed that--in the poll about Herceptin stuff. You and I seem to have things in common in diagnosis and treatment history.

Well, I don't want to be ALL gloom and doom. So I will say again that I am grateful to be half done with rads and skin damage is minimal as yet. And I have managed to meet a gal in the waiting area that will probably be a life long friend. And I was blessed to be able to comfort another gal on her last day. She was worried that God was punishing her. It broke my heart. So glad I got to share my thoughts with her. She told me how grateful she was to have met me and said I made her feel better. On my worst days of anxiety in the rads room, I try to think about these good little things. It helps sometimes.

I am curious how soon everyone is starting to feel fatigued if at all? I felt tired pretty fast. Three weeks in I fell asleep in the waiting area and jumped a mile when the tech woke me. That part was actually funny. (and the room was empty that day, so I was less anxious)

MombieZombie

I guess I'll chime in again PerAngusta. Did your doc give you no stats or anything to work with? Not good. My doc said it was up to me too. But I was fortunate with help along the way.

1. My surgeon--who has over 30 years experience with breast surgery alone, has seen and knows a lot. She was adamant that I do the radiation and told me that is reduces chances of recurrence by a good percentage. (I'm drawing a blank on the exact number)

2. My chemo oncologist told me the same thing.

3. My radiation oncologist showed me lots of statistics and then let me know that if I want to be covering all the bases, especially with Her2, that I would be wise to seek the treatment. It's a sort of insurance policy against recurrence in the immediate area. They are treating my tumor area and the lymph nodes above my breast because those nodes are the next place cancer recurrence would try to manifest.

On top of that, I researched a lot about Her2 stats. They are scary, though Herceptin and Perjeta is helping to change that. I decided that I want radiation in my defense corner. I'm also seeing a Naturopathic Oncologist who is helping me change my diet and other things. I actually didn't want rad treatment, but decided there was too much current evidence to support doing it. So here I am. Hope that helps.

ElaineTherese

PerAugusta: I was diagnosed with an aggressive form of cancer (Grade 3), had a large tumor (5 cm.+) and had nodal involvement, so rads was a no-brainer for me. My RO said that my chance of recurrence with just surgery was 30%. Of course, I also did five months of chemo, will continue Herceptin for seven more months, and am doing hormonal therapy (Aromasin) and rads. Those will reduce my chance of recurrence to less than 15%.

Some things to think about: what grade was your cancer? Have you had a PET scan to see whether or not the cancer was just local? What side was your cancer on? One BC patient I know decided not to get rads because her cancer was on the left side, and it would have been hard to avoid her heart.

Katluck13

Hi everyone I start my radiation on march 17, 2015. I have the markers on me and have my dry run tomorrow morning.

Very nervous about it. I'm still recovering from brain aneurysm surgery that I had Dec. 2, 2015. I hope I'm strong enough to be able to work.

MombieZombie

I'm left side, grade 3, her2+. I decided that radiation treatment was worth the heart risk. My tech team showed me how they can design things to avoid my heart with the treatments. I have to take a deep breath and hold for at least 20 seconds with each angle they treat from. (4 angles) This breath holding, raises the treatment area away from my heart. They also use CT scans, daily X-rays and five tattoo marks to map out exactly where my heart is so they can avoid it. In addition, their machine has blockers that move into place and shape the rays (beams?). I feel good about what they are doing in this respect. If your cancer is left side, DO ask lots of questions about how they can preserve organs from damage.

Katluck13--I'm sorry to hear that you had an aneurysm to deal with on top of everything else. Was that a side effect of your cancer treatments? Or just bad luck to get two dangerous problems at once? Either way, I hope you are recovering well. If it's any consolation, I have 15 of 33 rads left, I'm tired, but still driving myself everywhere, doing all my things as a mom and homemaker and carrying out volunteer things for church every day. We'll see if I continue to hold up, but so far, so good.

sybilskelton

PerAugusta

When I first met with the radiation oncologist I was so beat down by the chemo I immediately asked him outright if this radiation was really necessary. He proceeded to break out the white board and markers, drew graphs and pictures and told me about the studies and recurrence statistics. I was convinced. Perhaps you could have another meeting with the doc and have him break it down for you as it relates to your specific situation, the potential benefits vs risk, how much will it reduce the chance of recurrence, IF it will reduce the chance of recurrence. It seems to me that's what he should have done in the first place, isn't that his job?