Spring 2013 Rads

tuxtails

Thanks for all your kind words! I'll be checking in here to see your progress and I'll be thinking of you all.....it will be emotional watching each one of you cross that finish line. I had a hard time sleeping Friday night, some pain....but the redness at the top is starting to fade a bit and under my breast, the redness/irritation has gone down alot. I am replacing my radiation count down calendar with my count down to hiking in Washington state with my son. We did the Continental Divide last year before I was diagnosed, my life has changed alot since then for sure.

So hang in there,  I'll be waiting at the end of your finish line!

God bless you all!

MMSS

Cindy, thanks for starting this group. I managed to negotiate a break between my surgery and radiation and spent some time in Florida enjoying the sunshine and building strength back. With a total knee replacement and a BMX within 8 months I had had it with treatment for a while but I am now ready to finish the task. I got great results from the hormone therapy and had an Oncotype DX of 6 so I escaped chemo for which I am eternally grateful. I am a bit apprehensive about the radiation but know that I have no choice but to do it. Have my second and final planning session this Tue. and will find out then how many sessions I have to do. I had someone else drive me to the first one so I could go fortified with some pain medication because with shoulder arthritis holding my arms over my head for a half an hour at a time is NOT fun. Thank God for left over pain pills. I thought you just got a few small dots drawn on but my chest looks like a preschool art project gone wild. Hopefully this is temporary because it comes off on my clothes. I had to try on foobs over a tee shirt to protect their bras. Good to hear from you again after our surgery group. Good luck to everyone!

tjwest

Had lumpectomy

2 weeks ago and should start radiation treatments after healing. Ok, someone tell me what to expect!!

lemon68

tjwest-

I had lumpectomy on 12/31, SNB on 1/24. Did you have the Sentinal node biopsy yet or will you? Many have the node biopsy and lumpectomy at the same time. I then was told 1 month to heal then radiation. But I had BRCA testing( took almost 3 weeks) done so that delayed the rads for me until 3/18. So for me time between Lumpectomy and rads was 3 months, seemed like forever.

After SNB I was sent to a medical oncologist and radiation oncologist on 2/15. Has that been set up for you? I would image if your not having a SNB and your healed fully you would start fairly quickly.

Hope this is helpful as far as timing.

RMlulu

Welcome tjwest! (((Hugs))) to you and healing:). You will do great in Rads. Expect...prepare your skin, hydrate, exercise, rest, & laugh!

Your BS will tell you when to meet with RO to schedule your rad time.

Meet with RO to discuss plan...this site has great questions to ask take appt buddy

Rad setup...each center is different but they will have you lay in position&take measurements

Rad simulation will cross check setup simulate rad ensure alignment and mark you...most give tiny freckles 3-4 like tats and stickers to ensure alignment.

Rad course begins...they help position you 5 min, they cross check 5 min, then rad external beam one direction for about 1 min max and the other direction zip zap you are done...they will help you up. And you are out of there 1st rad done:))) it does not hurt just healing light:)

Each week you will see your RO...if you have any questions or concerns ASK RO, RN, techs want you to do well!

You spend more time getting undressed& dressed then you do in room. They may offer you cream...so ask what they would like you to use...I use aloe miaderm & aquaphor.

Good luck to you enjoy your healing time family laughter...Best medicine.

Serious laser tag ...

Cindy

RunFree16

Healing light--I love that RMlulu!

tjwest

Lemon68, I did have node biopsy and lumpectomy 2 weeks ago. Surgeon is setting my appt with radiologists, should hear this week. What is BRCA testing? RMLulu, thanks for the encouraging words.

BookWoman

Lemon68, maybe I should have told my rightie to behave--when I was diagnosed this time I would tell people that rightie was feeling left out and wanted some of the attention that leftie had recieved.

The waiting does seem like forever, I had my lumpectomy Dec. 13, then had BRCA testing, SNB was Feb. 7, then I had to wait for the oncotype results to get back. I finally started RADs on March 11. Three months between for me as well.

april485

Lemon, in most cases rads cuts recurrence rates by 50%. Mine goes from 15% down to 8% and then if I can tolerate or decide on tamoxifen, I get another 40-50% reduction the MO told me.  I will be in the neighborhood of 4-5% after that. I think you need to know your individual odds of recurrence for your cancer stage/type before you can know how effective rads are? Not sure...

Thanks for "clearing it up" (pun not intended)about the aquaphor!

Destina

Cindy,

Your positive attitude is a blessing for everyone. 

I wanted to let you know that I, too, have kept a loose photojournal of my experience. I don't really know why I started. It wasn't an intention, just felt natural. I started photographing the day of my surgery in my surgical waiting room and have continued periodically throughout. I photographed the places I visited and also documented through photography the healing process of my breast. That felt empowering because I could see in photos what my mind hadn't caught up to. I never photographed the radiation room/equipment though, and that might be worth a short return visit. Not yet though because it's too fresh. I just finished last Wednesday and I am enjoying what feels like newfound freedom without the daily trips.

I wrote before that my rads experience was pretty good with relatively minimal side effects. But, I wrote that before my last few days and while I'm still grateful that I came through it as well as I did, I want to be careful not to minimize the experience...both for myself and for others. There are side effects, both physical as well as emotional/mental/spiritual. It is challenging to go every day, day in day out and I was fortunate to have excellent techs, nurses and my doctor. I had to gear myself up to reframe this as a healing modality, not damaging radiation. When I first walked into that room on day 1, I cried (in front of the techs, no less, a moment of public vulnerability) because everything in me was saying that radiation is harmful and to be avoided. So, I chose to visualize during every treatment that the radiation was removing that which didn't belong and sparing the rest, cleaning out the cobwebs so to speak. For most of my treatment, I did do very well. Towards those last 4-5 treatments though, I did struggle somewhat with going in because I was noticing more effects (fatigue got big for me) and my breast was experiencing nerve pains (zingers, they call them). After my 3rd to last treatment, I noticed that my breast became a great deal more red than previously. I asked about this the next day (2nd to last treatment) and they told me that side effects would likely worsen for 7-10 days post treatment and then begin to get better. Something about the effects being delayed and worsensing with the cumulative dose. Honestly, that almost made me cry. But, it also prepared me. And I guess it makes sense. Radiation does mess with the healthy cells, too, and it takes time for them to heal themselves and regenerate. 

I'm 5 days post treatment right now, and so far, yesterday was the worst in terms of skin effects. Today feels slightly better. My skin did redden more daily post treatment and pain & itching increased. One day I rubbed a small area and the skin came off and it was raw. That tiny spot has been the most itchy & sensitive. So, despite any itchiness (which I'm choosing to see as a healing phase), I am only moisturizing and breathing through it. I certainly do want to keep all the skin intact!

I've also had swelling on that side, the whole breast and more pronounced near the lymph node incision site. Seems to be worse as I approach my menstrual cycle. After buying a small variety of bras post surgery, I found that the ones that offered the most comfort, by far, are the cheapest Walmart cotton sports bras. Too bad I didn't start there. Yesterday for Easter, I had the white one on under my top, and it kept riding above the top so you could see it a bit despite my layers. It seems small, but it was really bothering me to have it show. A friend told me that really it just looked like stylish layering. That kind of friend is a keeper. But, afterward, I realized that it bothered me because it was evidence of the breast cancer I'd rather believe didn't really exist. Or that, maybe it did, but now I had dealt with it, was done with it and could just move on. Except that I still have the reminders of a red, painful breast, tatoos, and scars and on top of it, and a cheap white cotton Walmart bra peeking out. So, it did happen and I'm still walking the terrain, still deciding whether to embark on the 5+ year homonal therapy (ufda).

I was fortunate enough to be diagosed with a "good" cancer at an early stage. So, I think that even I tried to minimize what I was dealing with. But my truth is that getting this diagnosis scared me more than almost anything else in my life to date and it afforded the opportunity to take a good hard look at my own mortality. And a look at just what I'm doing with my life, where it's wonderful, where it's less than that. I know in my heart of hearts that that is a blessing, perhaps the silver lining, through the lens of this cancer. But, it hasn't and doesn't always feel that way. Therein lie the emotional/mental/spiritual side effects. And I have the feeling that those will last quite a bit longer than the physical side effects.

Anyway, I know this post is about much more than just radiation but then, again, so is cancer. And I think the side effects we experience on the outside can also be symbolic of the inner side effects that others don't necessarily see. As far as treatment, I did find radiation tolerable and worthwhile. I feel good about my decision to receive it. And, I'm very happy to have the active treaments behind me and moving into the tissue healing phase. Hats off to those of you embarking on this daily journey, my heart and prayers are with each of you.

lemon68

Destina,

I just arrived home from my rads tx. I am burning and really tired today. Reading your post was the best thing for me. I too have minimized this because everyone sees me as strong. And I have teenage boys, I wouldnt ever want see put them though any more worry than necessary. My DH is great but seeing the fear on his face and tears in his eyes was more than I could bear. Same with my parents that shouldnt have to see their daughter hurt. I know I have been harboring this all deep inside, I know once the rads are over I am going to feel the flood. These boards are the only place I really have let it out when I need to. I am also early stage, I always say dont feel sorry for me there are many others in worse shape than me, I didnt want the attention. I sit here now in my cotton hanes Wal- mart bra, and know just how you feel and totally understand. I am not sure if it makes me want to laugh or cry. Thank you for sharing what happens after the rads are over, I had no idea I would keep cooking so to speak. I did know that on Friday I seemed okay and by yesterday afternoon I was a hot, burning mess. I dont even want to look at it today.

This is real, although the past 5 months for me seems very surreal, like this just couldnt be happening. Thank you for reminding me that it isnt just going to go away after the last day of rads. I do know that I will walk away from this a different person that walking in. I will be forever changed but mostly for the better I hope. Destina, you touched me today and now the tears are pouring, thank you, bless you in your recovery. We are going be okay, we got this I just know it.

XOXO

AmyfromMI

Destina, thank you for the beautiful post. It touched my heart. :-)



Cindy, as ever, you are so upbeat and encouraging in every post! Thank you!



I finished 11/30 today. It still seems like I have such a long way to go. I'm hanging in there with not much more than a red, sore breast and hoping it remains just so. Sigh....



Kim, hang in there! You're almost finished, aren't you? You can do it!



Hugs to all!

Amy

april485

Destina, ditto what Amy just said. That really was a beautiful and heartfelt post! I got choked up actually!!

I just got home from my CT Scan/mapping/simulation/tattooing session. I start officially on 4/22. I have an appt on the 19th for a final check on all systems. Because I am having the dose dense week long 2 x a day trial, I will have a CT scan all five days. The worst part was lying still with my arms over my head for 20 long minutes. My left shoulder was frozen in place when we finished and numb. I have bursitis in that shoulder. It hurt like hell! But, thank goodness it will only be 10 txs over one week!

Hang in there ladies! We are gonna be healthy and cut that recurrence rate! I kept telling myself that when I was so nervous in the CT machine. I know I have to do this so just kept reminding myself that when I wanted to bolt for the door!

Hugs to all! xo

RunFree16

Destina, add my voice to the choir--you did us a huge favor with your openness and articulateness.  I have done 6 of 30 rads and so far I feel good, and my skin is fine.  But I'm having a hard day emotionally.  I'm very perky with my family and friends, in person and on Facebook, and most of the time that's pretty accurate--or anyway, it helps me to be really upbeat and summon that from others.  Then I have these moments of feeling overwhelmed, angry, antisocial, and wiped out.  It doesn't help that my husband and I have gotten awful financial news of a couple of different kinds in the last couple of weeks.  I have work to do this evening and my kids, bizarrely, seem to be expecting dinner.  All I want is to crawl under the covers.  I know this feeling isn't the whole story either; it's legitimate, but also it will pass.  I just wish all other crises would be suspended while I focus on this one, at least at these times when it really feels like a crisis.  I'm very grateful to be tipped off that the last day of rads is not the last day of side effects, inside and out. 

April, congrats on getting your plan in place.  It doesn't sound easy, but hey, it's only a week, and not all day every day even.  Did they suggest exercises for your arm in the next three weeks to make the overhead position any easier, or does your bursitis mean it's just going to hurt and there's nothing to be done?

RMlulu

Oh Destina - Your words have captured what is in our hearts...our spirits...I'm so moved and humbled by them ((hugs)). Thank you so much for sharing:)

Healing thoughts...

Cindy

RiverFlows

I also started radiation on March 25, so finished 6/20 today. I was hoping I would be like others and not feel anything until possibly last week of treatment but unfortunately I was feeling pain from day 1, and I always thought I had a high pain threshold.

Radiated breast is very hot, red with swelling, tenderness, deep tissue soreness, shooting sharp pains (did someone call them zingers?). I can't wear my sports bras anymore (too tight) but not having support is also very painful, so started wearing camisoles with a shelf bra but inside out so that the elastic isn't directly on my skin. My RO said I could use an ice pack so I've been doing that in addition to moisturizing and taking Advil when the pain level goes to 7, although it mostly is manageable (2-4).

Sleeping as others have noted is difficult. For some reason lying on my back hurts, anyone else have the same problem? Inclined on my back, or on my left (non radiated) side are the only comfortable positions.

I wonder if I may not have hydrated as much as I should have last week so this week I'm going to be more mindful and see if that helps with the pain levels. I continue walking 2mi per day despite the discomfort. I thought I would be able to do yoga during treatment but it was too painful last week. I'm going to try it this week and see how it goes!

Thank goodness for 2-day rest on the weekend, and for kind caring medical staff! I just gotta hang in there for 3 more weeks. Good luck to everyone else doing Spring rads!

RMlulu

Hi y'all



Our treatments are all so similar and different...thought I would try and get a perspective of tx:

Correct if wrong...no particular order...some shorter sessions some with boosts all zap in c to the dark side of nowhere!



3/. Bookwoman. 15/20
Momtotenkids March

3/06. Josie123. 18/33.
MMSS. 4/3 start

3/14 Cindy. 13/33.
April485. 4/22 clinical trial 5x double duty

3/18. Lemon68. 11/16.
Tjwest. April

AmyinMIn. 11/30.
Jenjenl April

3/25. RunFree16. 6/30.
RiverFlow. 6/20

Adagio. 6/30
Timbek2. 19/28.

. Lovestorun. April

. SherylB. April


And more to come!



Heros completed - TUXTAILS, Destina, Gemini4 & more ))



If I have missed you or got your countdown wrong please correct & so sorry.

What a valiant group of laser tag warriors we are...some days charging into battle others days wearily dragging ourselves, but together we stand strong!

Thank you for standing with me (((hugs)))

april485

 Cindy..you are a sweetheart! xo

lemon68

Thanks Cindy, I am 11/16, 5 fricken more! I have stopped wearing my Hanes cotton sports bra and have on a light tank. No support for my big Cs, small Ds not a pretty picture.. I napped 2 hours and I am cranky and irritable. I dont think I should be having any human contact right now. These rads are really messing with me!

Riverflows- you have described it perfectly add the itching and I am there. I am afraid if I itch the skin will come off. I know I read that on one of the threads. See my RO tomorrow, I dont want a break but I may be getting one. Just seems inhumane to see a obviously sore breast and continue to make it more sore, feel sorry for the techs. But I feel MORE sorry for US!

April- Hang in there, I know the waiting is horrible. You will be fully prepared.

Thanks all of you for "getting it"

Timbek2

I'd like to jump in here. I'm on the downhill. 19/28. These last two weeks seem the toughest. I have my implants in so am afraid of the rads destroying them and needing further surgery. Today's rad got cancelled due to machine issues. His is the second cancelled. Anyone else have such problems. It's mentally exhausting and the fatigue is really setting in. Best of luck to everyone!

adagio

I am going for radiation #5 tomorrow and I am already dreading it. I have had 4 days off due to holidays here in British Columbia. My skin is not red although it is a bit itchy. I stand in awe of all you ladies battling through this horror of radiation. Did someone say that  this was easier than chemo? 

SherylB

Hi ladies,

I would like to join this forum as I start my rads next week. I had my CT simulation yesterday and go back Monday. I am having realistic fears of the discomfort that may or may not occur. I can tolerate pain but it really messes with my mind. I got really depressed with the SEs from the chemo especially the neulasta shot and am still having some SEs as my last chemo was 3/14 and the peripheral neuropathy has been pretty bad. I have my creams and I drink a gallon of water each day so I am trying to be proactive and get ready for this. Have alot of fatigue from the chemo so I am hoping the rads doesn't wipe me out to much more. Thanks for all your sharing, for me knowing things that may or may not occur is what I need.

Hugs, Sheryl

BrooksideVT

April, can you maybe work in a few visits with a physical therapist?  My bursitis was treated by a PT a couple of years ago and it made a huge, huge, huge, and permanent,  difference.  And maybe you could give your primary care a quick call--that twice daily painful position could irritate your shoulder, making an already problematic situation worse.  Possibly a temporary medication or injection can set you up for a pleasant-as-possible 10 treatments.  Yay for the five days and done!

april485

Thanks Brookside. Did not think of that...will call my PCP today and see if she can get me in for a few sessions of PT and or my ortho doc can give me a shot of cortisone in that shoulder. It used to work great for my bad knee...sadly now it only works for a week or two since it is bone on bone and I need TKR...sheesh, I am a hot mess! LOL

lovestorun

I start in about 2 weeks.  I thought I'd enjoy this downtime after lumpectomy / re-excision - a chance to heal, focus on feeling good etc. - but really I can't put it out of my mind.  It was almost easier when I was playing connect-the-dots with appointments and procedures.  Any tips on dealing with the downtime? I want to go into this strong and with as much positive focus as I can muster. 

RMlulu

Welcome Timbek2, SherylB, lovestorun, BrooksideVT!



Timbek2- yeah, 19/28 you are rockin rads onward:) Ugh, machine failure...so hard mentally, but does give your skin some R&R best of luck this week!



SherylB & lovestorun - prep your skin...hydrate, rest, moisturize, laugh and play!

Use your down time as a NO C time...just focus on today! You will be surprise how much it helps your heart and spirits:)).

Rads do not hurt. You just go in lay on the table think healing light and zip zap about 1 minute each direction and then you are out of there. If you like try meditation to help you relax and find your safe comfort spot before rads. But they do not hurt. Your rad team will be the best:). Ask them all questions they want it to be a good experience for you.

It is mental because of the daily grind of tx and physical care for yourself and skin, but you've got this!



Sending calming healing funny laughter! It may be serious laser tag, but we can laugh as we zap our way to the other side! LOL

Cindy

BookWoman

Welcome and good luck to all those starting soon. Timbek2 I had one of my treatments postponed because of the machine not working--no fun--they called me just as I was pulling into the parking lot and I have a 40 minute drive! I had another apointment in the cancer center that day or I would really have been upset. The previous day they had to restart the computer in the middle of my treatment--it didn't take very long but it felt like forever! It made for a humorous story at the tech inservice I was conducting that afternoon.

lemon68

Hi

I am not sure if this will make anyone who is in rads or just starting or going to start feel better but today I asked my RO about reoccurence, he said without rads 30%, with rads 5%. As I sat there with my burnt ITCHING boob, it seemed to make it about 25% better. I guess I needed to know I was making a difference in keeping it away. Its not pleasant but hearing the stats did help. I would love to hear if others have asked and what they were told.

Now if anyone knows how to stop the itch.. I am serious I might have to wear mittens to bed I am afraid I will itch in my sleep, its bad.

For those that havent started, I get 3 zaps from the left, 4 zaps from the right. I am on the table for 8 minutes. Dont feel a thing. Get some tanks or camis to wear. I wore a bra as long as I could, I then switched to a cotton Hanes sportsbra, now I am in a tank/cami which I hate but the band under the breast was rubbing me raw. Go to Walmart and get a few cheap ones as the creams/ointments is going to ruin them. I am doing 16 days, double dose each day. If given the option now I would have done the 33 I dont think it would have been so harsh.

Cindy- love the zapping our way to the otherside!

RMlulu

Hey there Lemon



1% hydrocortisone followed with aloe or miaderm & then extra strength Tylenol so you might knock yourself out or sleeping pill. Last night I used a 900 mg arthritis Tylenol from hubby's stash...slept the night without scratching myself raw...need a dog collar for boob...ha!

Fortunately I can lounge around in cami, no under band, with leftie exposed and lubed...oh how I long for day 33.

My schedule is 2 zaps one each way 1 minute max receive 1.8 Grays...your zaps:(( my skin would be redder, pinker, really angry:((. I'm 28+5boosts. RO said cuts recurrence rate significantly for me...30% reduction so ya zap me! Not so much benefit with hormone...still thinking on that...

Zapping along other side here we come:))

placid44

A friend recommended corn starch inside panty hose (use it like a powder puff) for itching. Maybe this has already been suggested - I haven't read every post as I just started radiation.