Winter rads 2014-2015

CoyoteNV

It looks like we all took the weekend off from dealing with all things "treatment".  I hope it was a good break for the rest of you too.  Today I will be back to the 3 hour commute to the clinic. It will be the end of it this week for a few of us this week and next.  My skin did get a lot more sensitive over the weekend, so I'm hoping it will hold up to these last treatments. I never would have thought all that numbness under my arm from my surgeries would have a benefit.  I really feel for those of you whose skin hits the skids right out of the gate. 

Anyone's ribs ache?  Sometimes it feels like I just got hit with a baseball bat. 

Nancy6540

Hello Ladies,

I go for my radiation consult this Friday. I am hoping to do a partial breast in a prone position but I had my left shoulder replaced after a fall this August and now I cannot put my arm above my head! It should be interesting to hear my options!

Nancy

Cath57

well, ok then.... Just waiting to hear about my rad plan after having my sim a week ago. I feel like such a whimp as I read through many of your comments & see that most of you have had chemo & are such troopers as you're venturing into the next stage of your journey. I did not have to have chemo... My Oncotype was 10. I had a lumpectomy with a second recision to get clear margins. I' m taking Arimidex with very few side effects so far. I should feel ever so greatful that I haven't had to go through chemo yet I started crying while they were doing the sim. I really don't want to do radiation & have been vacillating between opting out & doing alternative methods, but after looking at all the numbers, I feel that I need to do this. I think the reality of this whole year has finally hit me face on . I was dx in March of this year , & finally had my 2nd surgery in Oct. (long story) . I am ready to be done with this & am grateful for this community to vent to. Blessings to you all!

Carynbrit

4th rads done (after a weekend break). Today was 'dr skin check' day.. I have a lovely seroma in my breast,that came up after the reincision.. (unlike the stick of butter thats out under my armpit,aspirated twice since the first surgery).. and where it is the skin is nice and red, orange peel in texture. it had leaked for 4-5 days about 2 weeks before rads started .. so keeping an eye on that one .well both of them now...he said they may get bigger as they get irritated and 'may' just leak.. oh the joy. It's not too bad going to the hosp for rads, not too far away but I'm already a bit 'over it'. Putting aloe on and I have a bag of powder in my car (I keep to the speed limit.. lol.. I was amusing myself with the thought of being pulled over and explaining that the other day). that I use every day since the first day. Doing okay really..as of now . I'll take it.

I cant remember who posted this but I had to laugh about the hijacked song of 'this breast is on Fiiireeeeeeeeee'.. yup I've found myself humming that now and again.

Pita119

Cath57,

I too feel very fortunate that I didn't need chemo...oncotype score was 9. I had my 11th rad today with 9 more to go then I will be on Arimidex for 5 years with the possibility of another 5 years on a different AI. All of these women on these forums are amazing...each one traveling their own, very different journey that they are willing to share to help others and I really do appreciate it. It is a place to ask questions, vent, rant, and yes, even bitch but it has given me a sense of peace to know that I am not alone. It has been a very long 5 months for me and I hope that once I'm done radiation and start the hormone therapy that I don't have to deal with BC again.

Cath57

yes, Pita119, I was just discussing that with my son.... We are not alone! I hope you are doing well on this leg of your journey! Keep us posted! I've only been on Arimidex for 2 weeks.. So far, so good except that I dealt with insomnia which is a side effect, so started taking it in the AM. I've had a little joint pain , but manageable. So far no hot flashes!

CoyoteNV

The round trip commute was longer than planned because of work being done on the highway.... it added an hour.  Boy am I glad there are only 4 more round trips!  Today I discovered in my consultation with the RO that I am experiencing side effects to the radiation that I didn't know were side effects.  Apparently the tightness in my arm - all of the way to my wrist is most likely lymphedema.  The baseball bat pain can most likely be attributed to the radiation also.  I did not know until today the complete area of the radiation.  We had discussed generalities such as lungs, heart and thyroid issues - lungs and heart are not an issue of concern for me.  My radiation takes in an area that includes my right collarbone to the outside of my neck, my side from my breast to under my breast to around to part of my back,  my armpit and up into my upper arm.  I know a lot of you have  full breast radiation. Do they do all of the area I just described too? 

 

Reader425

Hello all, had my sim today and will start rads January 2. My left side ribcage hurts from holding the prone position so long I think but otherwise was ok. Was emotionally not as good today. I said to my DH I'm already tired of this and it's just starting. Need to pray for perseverance (for us all). Whine over. Onward...

Hope50

I'm down to just 6 boost to go and then Merry Christmas and Happy Birthday to me!!

My underarm is so red and my nipple is so sensitive. At times it about has me in tears and I'm not a whimp usually. I got some new cream today that they said would help numb it but it hurts to even put it on.

Not wearing a bra the rest of 2015!! Last night it hurt when I pulled my sheets and blanket up on me. Hurts for anything to touch it.

Done 2 of 8 boosts and started itching again. The end is insight. Still adjusting to Arimidex. These days it's so hard to tell what is causing what symptom. I just want to feel good, really good. I know that will come in time.

I had to have a colonoscopy couple weeks ago because something showed up on CT scan prior to chemo. Well they removed a polyp that was the cancer causing kind and a few other issues. It really did a number on me. I'm just mentally and physically worn out and reality hit again and I hate cancer!!

Some days are just easier than others. Sorry to seem like a downer and complainer. That's not typical me. Just hard when no one around understands what we are truly going through. I'm so glad I have you guys to help me through.

Keep a going ladies. You all are very radiant!!

eileenpg

Hope=Oh No!!! stay strong. Glad you got the polyp removed.

Birdgirl11

Coyote - sounds like you may be getting a bit extra. Maybe because you had a positive node and reconstruction, so they want to be sure to get all surrounding tissue. Mine is full breast, but doesn't reach all the way to my collarbone, just about half way up and then not all the way around to my back, just about halfway into my armpit there too. Hang in there, you are almost done! Then time to recover and enjoy some rest.

Hope - I hear you. I'm not much of a complainer usually, but this whole thing is just too much some days. And then some days are fine. My poor husband never knows which woman he will wake up to each day. Even the ups and downs are exhausting.

Reader - sounds like we have a very similar DX - welcome to the group!

Cath and Pita - congrats on your low onco scores! Great to have an encouraging report in this journey.

Pita119

Well girls...I think the fatigue has hit. Today is #12 and when I got up this morning, I could barely get out of bed. I have never felt anything so intense...it's going to be a long week

CoyoteNV

Pita: I'm going to toss out my thoughts on treatment caused fatigue.  It's not exactly a shocking conclusion, but here it is.  You will pay tomorrow for what you over do today.  That old adage that you need rest to heal really is true.  I am a person whose nature is to burn the candle at both ends.   I can't get away with that the way I used to.  I seriously have to visualize that I have a battery pack with a gauge that shows if I'm "charged"... and the battery discharges fast.   Sometimes, you gotta do what you gotta do, but know there will be a price.  Oh yeah, "over do" now may very well be what you previously did every day.  Think battery gauge.  

Hope:  I think you are referring to that polyp as "non-cancerous" right? 

MagicalBean

Done, Done, Done. Tomorrow I can sleep in. All in all, this adventure was not as bad as I had feared. No fatigue-just sleepiness off and on due to disrupted sleep patterns. Mild skin issues but nothing that could not be tolerated. The staff had a Christmas buffet today and invited all of their patients so I had quite a send-off. Yummy.

Next month I will have appointments with both my RO (followup) and my MO. Looks like I'll have 6 month follow-ups for the next 5 years. The anvil hanging over my head is a tiny bit smaller today.

meanmomto3

Congrats, MagicalBean! It sounds like your experience was really great. You've probably posted before, but how many treatments did you have? I'm DCIS, too, and I'm doing 27. 9 down so far. The original plan was for 25, plus 5 boosts, but my boob is very fibrous and they couldn't map out a boost that wouldn't create a significant hot spot.

I just had to edit this post bc I had put "19" down so far. That's some serious wishful thinking on my part!

meanmomto3

Hope: I'm only 9 rads in, but my underarm and several small spots below my breast are on FIRE! I have super-sensitive skin and I've only been able to tolerate mediaderm. RO said to keep using it for a month or two AFTER rads finished, bc the skin damage takes a long time to heal. Yesterday, they gave me Solarex Radiation Relief -- a lidocaine lotion. They wanted me to test it overnight on my arm first. I woke myself up in the night, moaning from the underarm itch and burn. I got up and applied the lidocaine lotion. It was just short of a miracle. The pain and itched stopped almost immediately and I slept well the rest of the night. Give the lidocaine another try. It might hurt for a minute, but then, hopefully, you'll start to feel less pain.

meanmomto3

"You're left breast is definitely swollen, and it has really reddened up. Looks great!" -- Before rads, words I never imagined I would hear a doctor say...

PoppyK

Magical, Congratulations! Happy Dance time!

MeanMom, Love your name. My 3 boys used to call me the meanest mom in the world... now 2 of them are teens, so now they just roll their eyes. LOL Thanks for the tip about lidocaine lotion. I have a lidocaine cream that I used to numb the skin over my port prior to chemo. Now I'll check with my RO to see if it can be used on me when I start rads.

After reading all of the posts about fatigue, I'm really concerned because I am still so fatigued from chemo. I'm afraid of what rads will do to my exhausted body. I'm also wondering how my 38D boobs are going to do... especially if braless!

CoyoteNV

Yeah and Hooray! to MagicalBean.  I'm so glad you are finished and that it was not super hard on you.  Enjoy the Holidays. 

Here is an interesting tidbit for those of you dealing with left side radiation.  TomoTherapy radiation equipment alleviates the need for the breath holding because it is able to focus the radiation beams to a more finite area.    Has anyone requiring the breathing process ever been told that?  I asked about it today.  Maybe they weren't suppose to tell me.  This seems to be a pretty well kept secret.  If you are new and haven't started treatments you might want to find out if there is a clinic in your area that uses this equipment.

MagicalBean

Meanmom- I had 28 whole breast and 5 boosts. Will you be doing any hormone blockers? I haven't decided about that yet.

PoppyK-I have knee-slapping 40DDs and braless wasn't too bad. I was glad it was sweatshirt weather though. T-shirt weather wouldn't have been pretty.

meanmomto3

Magical: I meet with my MO on 1/5. Last time I saw him, he said he strongly recommended tamoxifen if tests came back ER+. I'm not sure what I'm going to do. I have PCOS, plus endometriosis since I was 20. Factor in BC, and I'm at a higher than average risk for uterine/endometrial cancer. I had an ablation done about 10 years ago, but still had light periods afterward, so they didn't destroy all the endometrial lining. If I do tamoxifen, I'm considering hysterectomy. I've also got uterine fibroids and had an ultrasound last week. The report was good, but it just adds more to the mix. I'm sick of it all

Nomatterwhat

Coyote, I have the full breast radiation and I have the same parts radiated as you, except for the upper arm and armpit.  I finished #20 today and the only area that bothers me is my side.  The techs and I decided that my nerves have not rejuvenated yet from the mastectomy so I cannot feel the burn in what is left of my breast area.  My DH and I sculptured a foam piece cushion and attached it to my bra to keep the pain to a minimum and hopefully the blistering from happening.  I know it sounds silly, but it does help .  The only problem is that one foob is sticking out about 1/2 inch more than the other one.    

Magical, Congrats to you!!!!   

KatieC12

Congrats MagicalBean, it's exciting to be finished. I have to say I've experienced more sensitivity in my breast since I stopped rads - yesterday I mistakenly hit my nipple with a fingernail as I was getting dressed and the pain just shot through me! I was a lot more careful this morning! The itchy rash has calmed down quite a bit with the cortisone cream.

Nomatterwhat, silly doesn't matter - comfort does! Whatever gets you through this is great.

yikes1

to Nomatterwhat,

can you explain a little more about the foam cushion?

I just had #17 today.

Nomatterwhat

Yikes, it is a foam piece about 1/2 thick, kind of like a mattress topper.  I got it from my Occupational Therapist when I was thought to have Lymphedema and used it to wrap around my chest to keep things tight, since I don't like cami's.  Anyway, we cut the piece down to go from the hooks of the bra all the way up to the front lace part. We made sure it went under my arm and lifted the side of the bra nearest the arm and come out by the front lace part.  We wrapped it in a cotton compression sleeve and used large safety pins to pin it to the bra and keep it in place.  Since I had a BMX there is nothing in the way and it works well for me.  It won't win a fashion show, but at this stage, it is all about comfort for me.  If I could figure out how to post a picture of it for you, I would. 

HockeyCat

MagicalBean, congrats on finishing rad! Glad to hear it was tolerable for you. I had #10 today. It is getting pink and sensitive. Hopefully it won't get too bad. Crossing my fingers.

Poppy, I felt pretty tired on the first week. My RO told me it's probably because I haven't completely recovered from chemo, and it will get better. I wasn't sure about that but now I don't feel tired that much.

MagicalBean

Meanmom-Thanks for the info. My MO said I didn't need anything but she would RX if I wanted it. I am 100% ER and PR+, and am overweight. She said if I lost weight, that would be about the same as taking the med since fat cells also produce estrogen. My age factors in as well (67). I am not excited about the SEs either. My surgeon suggested Evista-which is for osteoporosis, but also blocks hormones and has fewer SEs. It sounds like a more viable option. Might work for you too. I can't decide what to have for lunch, let alone this.

Katie-I understand the sensitivity thing. RO says that will subside over the next few weeks.

Thanks to all for the kudos. You are fabulous.

InGodshands

---

Hi ladies,

It has been a while since my last entry. Just an update that I begin rads tomorrow Dec. 18th. I will have 30 sessions with the last 5 being boosts to the scar. To say I am nervous is an understatement. Terrified is much more accurate. I am so grateful to have this place and all of you wonderful women Feels less lonely and more doable as I read your stories thank you coyote for keeping up with everyone

Blessings

yikes1

Hi Nomatterwhat,

Thank you for responding, but not sure I can "see" what you are describing!

I was asking about this because of some issues I am having, but also I read in another forum about someone else and this sounds like something that can help that person.

I know others have posted pictures so I hope you will be able to figure that one out.

If anyone knows how to post a picture please let us know.

Hi InGodshands,

It is so scary and I was a wreck the first few days - about the thought if it all.

We have all had such different experiences, but it seems that everyone has made it through.

I am guessing you already had the simulation part?

Just remember to discuss / ask about what lotion they want you to use, if any.

yikes1

this is really, really scary:

This website is under heavy load

We're sorry, too many people are accessing this website at the same time. We're working on this problem. Please try again later.

This is what I found when I tried to update my info on the breast cancer.org website

which only means one thing to me -- there are just too many people dealing with this and that makes me mad -

yesterday I discussed the pink ribbon month with my RO -

Yes, we need to find cures, but we need to figure out how to prevent this from happening in the first place!

okay, I feel better for saying that.