Spring 2013 Rads

RMlulu

Lemon - my auxiliary area is swollen too. Just noticed last night...Rad Techs said to tell RO on Monday. Looks funny. I stopped shaving my left side 2 wks before rads...ugh, but I think the aloe works to hide any odor. Techs said hair will fall out. I'm concern with sweat glands...will they be fried too? Will LE become issue. Not sure if there something I should be doing to my baby roll...any idea?

How's your skin? Hope healing...

jayjayc

hi,



I'll be joining all of you lovely ladies when I start my rads on April 15th (25 and 5 boosts)... I'm already jealous about some of you only needing 16.... I begged my RO to do less but he said he just didn't want to do anything other then standard treatment because of my "young" age..... first time 49 has ever been considered young.



I was wondering what type of bra or cami you guys are wearing?? I need to get some cotton ones and I don't know which are best.



I also appreciate all the info on lotions..... but I have a sort of stupid issue.... I can't stand touching my lumpectomy scar..... both the scar and the surrounding tissue feels really weird and just plan creeps me out...... I don't suppose anyone else has had those types of issues??

april485

Lemon, mine is 7.8 x 5 days total. It is a lower dose overall but more milligrays per day. I have the rads 2 x a day for a total of 7.8 which is divided into two tx's of 3.85 each or 38.5 total for the entire course for all 10 tx's. It is 10 tx's, not ten days though. It is less than the standard 50+ over the 33 tx protocol overall but more intense per day, as is yours.

april485

Oh and thanks for the article. I have read many as well and because of my age (over 50) plus my small lesion (5mm or 1/2 cm) and wide margins (all over a cm) PLUS the stage 0, I am pretty confident that I have a great chance of this working out the same as full breast rads. Mine will be concentrated within 1 cm of the are of my lumpectomy only. It is partial breast irradiation. With DCIS, cause it is confined to the duct, the chances of it recurring anywhere away from the original site are really really small as is stage 1 or even stage 2 so with the studies they have done, it is a tx protocol that makes sense. Since my boobs are small, partial for me means most of  my boob will be radiated anyway as the RO pointed out..lol

RMlulu

Welcome Jayjayc- Congrats on moving forward in your treatment and joining us in Rads!

You will find info encouragement and a safe place to share.

Love being young...most activities at BC center I'm considered young lol! I'll take it:))

I wear an inexpensive cotton genie bra and danskin now front zipping sports bra both a couple of sizes larger from Walmart. Also some 100% cotton camis and tees.

Other items cornstarch and knee high or new blush brush to powder under breast and underarm. Don't shave at least a week before so your under arm area is not sensitive and switch to a natural deodorant like toms or crystal. Once start rads you will not apply there or shave. You will survive and be very European ha!

Begin moisturizing your skin...aloe is great...later in rads you may wish to add miaderm, jeans cream, my girls, aquaphor ..not all of these just maybe 1 or 2....for now use aloe and ask your RO what they prefer. Test area on opposite breast first before starting a new lotion...most can only be found on-line

Aloe I get at Walmart fruit of the earth $4 100% pure.

Now to the big issues...your lumpie...ya it took awhile before I was able to embrace the change to my body my girl...started with lights very dim to even undress...I'm a whimp...and I was grieving the change...now I embrace her...gently...before rads I was using mederma for scars and it helped soften and reduce the angry reminder that somehow my life had changed. I had a hard time even looking at her in the mirror, but now I'm glad she's still there and I'm giving her another chance...rads helps her to stay...

Not sure if that makes any sense...

By embracing her I embrace my life...

You will do fine warrior (((hugs)))

Cindy

april485

jayjayc, you are not the only one who doesn't like touching the area. It feels strange to me too. But, like RMlulu pointed out, I have made peace with it and realize how blessed I am to still have my breast. Mine is very minimal in the scheme of things as it is not all that big of a lumpectomy area but it is still not the same as the other breast in looks or feel. I am good with all of it and continue to feel so blessed each day. Hugs..we will get through this!

RunFree16

Hi Lemon--My original RO (I switched to get a closer hospital) told me I'd stop growing hair under my arm on the treatment side.  Fine by me too!  Sorry to hear about your swelling and also your other SEs.  No fun at all.

MMSS

Lemon, I live in Dayton. Where is the study that you are a part of being done? How on earth were you ever diagnosed with an ILC that small? That is so rare.

One of the good things about getting older is that I haven't had to shave under my arms in several years. Now if that would just move on down to my legs I would be happy but so far not even the AIs have accomplished that although I do have to do it much less often. Ironically ever since my mastectomy on Jan. 21 I have not had to use deoderant. It was forbidden just after surgery and then when it would have been ok I just noticed that I didn't smell anything and since I knew that radiation was coming up I just let it go. So far no one has complained and my family is not shy about letting me know when I need to shape up in some area.

whonu

Hi all --

Just finished my first week of rads -- 4 more to go.  Like most of you, hydration was emphasized by the radiation staff and my naturopath.  Both said I need to be drinking 64 ounces a day.  That's really a stretch for me as I don't drink much water at all (tho I should), but I have been making sure I get all 64 ounces every day since I started rads and a few days prior.  It's difficult, but I can see how hydration would be very important to you during treatment, both for cell hydration and for flushing toxins.  I feel like I'm drowning and yes, peeing constantly   it's going to be a loong 5 weeks!  Hopefully I'll get used to drinking more water and I'll continue after rads, that would be a good thing!

Like you, Lemon68, my RO is dud.  I figure I'll just bite the bullet for this short time period and be done with him.  I figure he's good at the scientific part, the human element isn't his thing.  It's the scientific part I need.

I've been slathering myself with aloe, wait for it to dry then a slathering of Miaderm, which is what my clinic recommends.  I slather it on before I leave the radiation clinic and do it again at least twice more during the day.  I throw on a slathering of Eucerin for good measure before going to bed.  I should get some Aquafor but haven't yet so Eucerin it it.  Working hard to make sure I eat right, plenty of colorful vegs and fruits -- berries are a must daily, staying away from processed foods and sugars as much as possible.  I'm really concened about burning and blistering, hoping to avoid as much as I can.  I've also been feeling really tired the last few days; I think it's too early to be from the rads though.  I hate these things (pain twinges in my breast and tired) that make me wonder, "is it my head or is it for real?"  So love the psychosematic part of me!

MaisyDaisies

Hi, everyone. I've been on another rads thread, but am new to this one. I'm 8/33 and just starting to feel SEs, mostly big fatigue and some swelling.



Jayjayc, I had some trouble touching my lumpectomy and SNB scars too at first, but since I've been putting on the moisturizing cream every day, the scars feel softer and not as different as they had been.



Can anyone recommend a good source for reading about Grays? I read so much and asked tons of questions at every other part of this journey, but this thread is the first place I've heard about Grays.

new2bc

Hi everyone,

I finished radiation last week and here is my experience. I alternated between aloe vera gel and the juice from real aloe vera. I did not use aquaphor at all because I read it is hard to apply. By the end of radiation, I had brownish burned looking area which started peeling close to my under arm. The doctor and the technicians had a surprizing look when they saw my left chest. The last day of radiation the technician suggested using aquaphor and gave me some samples. This past week aquaphor has helped me with peeling the old skin. Since it is hard to apply and greasy, anytime I rub it on my skin, some of the old skin comes off easily. Now I have 3/4 of the area showing new skin and 1/4 is still brownish. I did not have pain in this area during radiation. I wish everyone will have a smooth journey during radiation. Now the hardest part is taking Tamoxifen.   

RMlulu

Hi y'all



R&R and then it's Monday...emu oil was my salvation this weekend. Instant relief my incisions don't look angry! So thankful makes marching into battle easier ...

Whonu - yeah, week 2 here ya come . Hydrating means running...so timing is everything. Just keep lubing the skin and resting ...helps with the mental part of this battle

Lemon - hows the skin. Keeping my fingers & toes crossed for healing! Stay strong...you're so close. How did the 3rd boob do ugh LE ...making RO look at mine it's not good.

April- Make a BDay wish...the BDay fairy is granting wishes...just for you:)))



Good Night...(((hugs)))

Cindy

lemon68

Hi, Hope everyone is doing well this weekend, well Sunday late night.

My last day is tomorrow. I see the RO I am fairly sure I will not get my final zaps tomorrow. My skin has officially decided to open up underneath my breast, its painful as hell. And my nipple, aerola are peeling away revealing tender pink flesh. I also now have little tiny blisters in my underarm area extending to my back. Also shooting sharp pains, I assume these are nerves being irritated? Well they are irritating me now. Nice eh?

Once again my gut feeling was wrong. I was not afraid of radiation, chemo yes but this no. I thought it would be easy. Its not easy and it sucks. I do not want to be insensitive to anyone that didnt get a choice to keep their breasts so dont get me wrong in some sick twisted way I do know how lucky I am. I do not feel lucky with this mound on my body tonight. Going to try to get the Tenderwets or mepilex as recommended here, thank you.

Now dont let me scare anyone who is just starting or hasnt yet. We all react differently. I am olive skin and tan so there is proof that has nothing to do with it. I have sensitive skin and at times have hives and am prone to unexplained rashes. I just dont want anyone to feel any anxiety because I am having these issues. This too shall pass.

HUGS to you all.

adagio

lemon68 - is it possible that if you don't get your last treatment that you will have had enough radiation to do the job intended? You sound really sore and it terrifies me because I am just approaching halfway mark of 20 treatments. I hope you get healed up fast. Let us know what happens tomorrow when you see your RO.

april485

uAwww Lemon, so sorry honey! That really stinks. You were really in the home stretch and then pow! It sounds absolutely horrible! I am very nervous about my week long protocol twice a day at high milligrays, but I can't let that stop me, just like you said. I have olive skin and it is also sensitive and prone to breaking out from certain things. For example, I can't wear ANY costume jewelry or even silver because of the nickel. I am highly allergic to it. My jewelry has to all be 14K or above (18 k is better cause no nickel at all) so consequently, my jewelry box only has a few things in it. But, on the other hand, I always get nice gifts from the hubby..lol

Hoping that the doc says you are done like adagio mentioned. Perhaps they will let these last tx's go? Either way, they will have to let you heal up first!

I am off work today cause it is my Birthday! It is my first day off when I don't have any doctor appts in I don't know how long (except holidays of course) and I am going to enjoy it!

Cindy, you are amazing! You tirelessly respond to everyone on all threads we share. You are the best cheerleader anywhere!

Have a great day my friends. Together we are stronger than this bitch cancer! We will beat her back as a group and she won't have a chance!!!!!!!!!!!!! xoxo

Leigh22

Hi ladies!  I'm over 2 weeks out from my BMX and am seeing the RO this Thursday...  I am being sent to the RO because I'm in the "grey" area.  I was told by my Onc. that I was "high risk" for a recurrence before the chemo (mostly because I'm HER2+ on the left side)... but now, after the chemo, I am told I'm in the "grey" area... not a low risk but more "intermediate". 

Both of my breasts were involved with two tumors in each one... well actually, after the pathology, it was actually one big tumor in my left at approx. 4 cm.  It shrunk to 2.5 cm after the neo-adjuvant chemo I had before my surgery, so it's ER+, PR+, HER2+; 2.5 cm.; IDC with ILC features and grade 1 on the left.

This is the weirdest breast cancer I think they've ever seen!  On the right side, it's 2 tumors, 1.2 & 1.3 cm each, grade 2, ER+, PR+, HER2-.

Any other mastectomy ladies needing rads?  I'm worried because in my left arm, they did a SNB and one node tested positive with a scant amount of cancer cells, and then they did an Axillary LNB and took out 7 nodes and all were negative and my bs told me the radiation will dramatically increase my chances of getting lymphedemia in my left arm... (  My margins were clear and I had no vascular invasion in my breasts.

I have a strong feeling the RO is going to recommend the rads.  I'm a bit scared.  Should i be this scared?!?!  If all 7 of my axillary nodes were negative, will they still have to radiate them or can they just radiate the breast?  I have so many questions for the RO.  I have TE's in now but my PS isn't sure he'll do implants if I get rads. 

I also wonder now that I'm a stage 1 in my right breast and a stage 2a in my left breast, if the RO will have to radiate both sides or just the stage 2 side?  I don't know much about radiation as you can see! 

I know I'm jumping the gun before I even see the RO, but I've seen ladies with pathologies better than mine who are getting rads. I just had no idea that you could still need rads after mastectomy; I thought the chemo and surgery would do the trick... guess I might be wrong.  Thank you for any help you can give me!!! 

Leigh 

RMlulu

Welcome Leigh22 - wow, what a journey! Congrats on 2 weeks out from bmx ... Glad you will see your RO on Thursday to help answer your questions. What does your MO advise? Nice to have a team plan:)

Everyone's cancer is different...try and focus on healing now. Breathe...don't get ahead of yourself...breathe. Try and put all energy into healing...you will have some answers and choices on Thursday. Then you can begin to make plans for next step in tx. If your tx plan includes rads, they are doable and you will be fine. Yes, others with mx&tes have completed rads&exchange. Hopefully you will meet them here...but that may not be your path.

Sending calming healing thoughts (((hugs)))

Cindy

braids3

April Happy birthday have a great one

lemon could u ask for silvadene for the burns i've seen other woman who got relief i've used it on reg. burns.

i'm still in holding pattern wed i start my week off of chemo before the cyberknife. then onto rads i hope to start on the 22 too. i've been trying to drink more and using emu oil my left nipple is itchy and sore i will be on my chemo when they do the rads. i have not had mx or lump because i was stage 4 from get go. love and blessings to all

chris

BookWoman

Leigh, I have a good friend who had to have radiation after mx and chemo but she was triple negative. So far she hasn't had any problems with lymphedema (she is about 5 years out) I 'only' had lumpectomy and rads so I don't have any knowledge about people in your situation. Hope you get all your questions answered.

I AM DONE! Had my last treatment this morning--had 20 (15 whole breast plus 5 boosts). They did say I could continue to get worse for about two weeks, but as of now I have been one of the lucky ones as far as the radiation goes.

mainegirl

I start radiation on 4/15/13.  Just finished 5 months of chemo and am enjoying a 2 week break.  Amazing how I feel so much better already. Getting Herceptin every week during radiation before going to every 3 week treatments.  So far no side effects from just this by itself.   I have heard so many suggestions for creams to use for irritated skin.  In addition to Aquaphor and Aloe Vera mentioned on this thread I've ready about hydrocortisone cream, Miaderm and Dr. Bronners organize bar soap.  Anyone try these? 

ChiefsFan

Hey RMlulu - thanks for the ideas. My kids' father became a meth addict which is why I had to take my kids and leave so no help on the dad front either.  I'm a teacher so we have a sick leave bank that will pay your salary up to a certain amount from which I've already withdrawn the maximum so I just have to suffer through.  I finished 19/33 last Thursday. I have a rash on my chest about 2"X3" that itches so badly it wakes me up at night. I've tried hydrocortisone cream, aloe vera, Aquaphor, emu oil - nothing calms the itch for more than a few minutes. I'm going crazy and only halfway through! My RO told me the radiation IS going all the way through at the top of my shoulder so the top of my lung is being radiated - that freaked me out and I started crying again - never been such a crybaby before. Anyway, then the next day I found out half my neck is being radiated and that freaked me out and I started crying again. Now my RO wants me to go somewhere else to finish treatment because I'm too emotional! I'm so tired of people expecting me to smile and be happy about all the crap I've been dealing with for almost a year now. If you can't be scared and emotional  at the doctor's office when you find out even more scary info.m then where can you be? Thanks for the support - this is about the only place I get it.  

Leigh22

Thank you Cindy and Bookwoman! Sorry I feel dumb but by MO do you mean my oncologist? If so, she has always said she really doesn't think I'm going to need radiation because she always felt it wasn't in my lymph nodes just by a "hands-on" clinical checkup. I actually haven't seen her yet since the surgery and pathology report that showed a little cancer cells in my left sentinal node only. I see her next week for my every 3 week herceptin infusion so I'll get her opinion then.



Thanks also for helping me to calm down and get my mind back to healing. It's like 77 degrees here today and I just walked 1/2 mile with my DH and my DS. Very nice.



And Bookwoman -- thanks for sharing info about your friend. That gives me hope!



Leigh

Sneakychiquita

Leigh - I've had a UMX with TEs and have been recommended radiation as well due to several risk factors (extensive LVI, grade 3, < 40 yrs of age).  Yes, radiation increases the odds of reconstruction problems - at our cancer agency the risk approximately doubles from 15% without rads to 30% with rads.  My plastic surgeon has told me to expect, at the minimum, that my skin will tighten and shrink, which is why we've decided to overexpand me prior to rads beginning (at least as much as my body looks like it can take).  I have a pretty good PS so if things go to crap, I'm fairly confident that he can at least make me look normal in a bra, but I do want more than that... I want to still be able to wear summer dresses without a bra (I'm rather small in the boob department).  He mentioned that if there's a lot of skin tightening that he may harvest some skin/muscle from a lat flap, but still relying on an implant for some of the volume as I don't have enough fat on the back or the belly for a completely autogenous reconstruction, nor am I interested in harvesting from my legs.  Before leaving from my last appt with the PS I asked him what my chances are of being 'satisfied'.  He said that they'd recently done a study on this in British Columbia and that 70% of radiated ladies and their surgeons are happy with their reconstruction afterwards (these are predominatly implant reconstructions).  The majority of the unsatisfactory reconstructions were due to the PS not being totally happy... more than half of those patients were satisfied but the PS being perfectionists thought they could be better.  Here's hoping we're in the majority and have satisfactory reconstructions afterwards.  

As for LE, not sure I can help you out with this one.  I was quoted <5% risk of LE developing from axillary irradiation, but that was keeping in mind that I only had 2 nodes removed.  However, I have seen some unpublished data on how massage can help to break down the scar tissue in there which really helps to keep the lymph moving.  I don't mean that lymph draining massage that most people get... I mean really deep (and often painful) torsional-like massage.  I'm sure I'll have to take a break in massage during radiation, but when I'm able I'll be doing everything possible to break down that scar tissue.  

ChiefsFan - Totally shitty situation you're in.  My heart goes out to you.  Don't be shy about asking for help from anyone who listen to you.  People usually feel good about helping but often don't know how to go about doing this unless someone actually asks for it.  I have never asked for help from anyone prior to BC, but those few times that I reached out and actually asked for specific things during treatment I was completely overwhelmed by the support I received from employers, colleagues, friends, and even strangers. I've received everything from meal delivery, house cleaning, grocery store gift certificates, and even a ski/yoga vacation.  None of that would have come my way if I didn't ask.  I'll be thinking of you.

Sneakychiquita

Leigh - Forgot to mention, that because of the TEs our radiation department takes a more gentle approach by reducing the daily dose.  Withough the TE concerns I was told that I would get 25 treatments for a total of 50.4 Grays to the chest and 45 Grays to the axilla.  Because of the TE, my chest irradiation will be spread across 28 treatments (total would still be 50.4 Grays). The lowered daily dose being more favorable for reconstruction outcomes isn't actually supported by hard evidence here yet... it's just what the ROs have seen anecdotally so far.  But who knows, perhaps none of this will matter because you'll decide not to go through with radiation afterall.  I'm still on the fence, but leaning towards going through with it because it lowers my risk of recurrence from 10-15% to 2-4%.

Leigh22

Thank you Sneakychic! I'm kind of like you, still on the fence. I've started doing research on the rads. I know once I talk to my RO I will be able to make up my mind.... I just hope he says I don't need it so I won't have to make the decision. Are you still in chemo... I looked at the date you started and thought you might not be done.



If my RO tells me it will lower my recurrence risk by as much as yours, I'm pretty sure I'll do it. I don't want this coming back and will do whatever it takes to not go through this again.



My ps is great as well. He mostly only does reconstruction. He does a small amount of cosmetic, though. He's very cautious and said if implants don't work, there's lots of options for me. He said he can even take some fat from my tummy and put it under my pec muscle where the implant would go and then could do a lat. flap procedure. He said I didn't have enough fat on my tummy for a tummy flap procedure, and said I was too slim (I love him for saying that!) but I'm 52 years old so I know I've got a few extra pounds on me. He's just waiting to see if I need rads and if so, the reconstruction will wait.

lemon68

April- HAPPY BIRTHAY TO YOU!!! Thank you so much for caring, you are truly specail and soon we will all be right there with you. What kind of cake are you having?  I am also allergic to nickel, even have to buy a special phone without nickel. Yet another thing in common!

Well, I did see the RO this morning and he said what I had was not the worst he had seen and if I didnt do it today I had to come back tomorrow. I didnt want to come back so I sucked it up and did it. Its not any worse now than yesterday. Its HOT and peeling, and the little blisters are up my underarm now. I took a tubesock of my DHs and ran it under cold water and put it under my boob. My boobs are pretty large (swollen too) and it holds it there perfectly. The only thing RO would give was the aquaphor ( does not help) and Smooth and Clear, it comes in a little packet, thicker than Aquaphor and a greasy mess. I like my all natural Aveeno, its soothes. I am miserable but know after the next few days I will start to heal.

Chiefs Fan- I am with you, the itch is about enough to put my right over the edge. I am so sorry for you but I am right next to you feeling your itch and pain. I have new itchies places, my old itchies are now sore as the skin just flaked away, I see new pink skin in its place. Try Benedryl cream instead of the hydrocortisone, the hydro make me burn ( no pun intended) the Benedryl will not. ((HUGS)) I hope you get some relief.

Cindy- You are the best cheerleader, always seeing the sunnyside, thank you for that. I am yelling FU cancer today so I guess we balance out the group nicely. XO

RMlulu

Yippee Lemon - Happy Happy Dancing:))). Ya did it! Wave your hands high and you may or may not use all those fingers...ha! Speedy healing... Calm cool thoughts coming your way.

Let us know how your hot boob recovers brave warrior.



Today is 18/33 pressing on...this weekend emu oil saved my leftie. She was about to be scratched off...RO said my 3rd boob is inflammation take aleve and not LE. Going keep my eye on it...better get smaller. Lemon your comments have helped me be more diligent in self care...

Best Wishes as you move forward in healing and that 5 yr tx plan.(((hugs)))

Cindy

AmyfromMI

Hi all! Just checking in. Welcome to everyone who is new to this thread. :-)



April, I hope you had a wonderful day! Happy birthday!



Cindy, as always, thank you for being so supportive and upbeat for everyone here! Your enthusiasm is contagious! xo



Kim and Bookwoman, congrats on finishing rads! I'm happy dancing with you both! Yay!!!!!!



I am 16/30. I asked my tech today what my gray was and its 2 per day for a total of 60. I'm hoping rightie holds up on me. It's red, tender, and getting a wee bit tight with a little itching here and there. All in all, I'm doing well and shouldn't be complaining. ;-)



Sending healing hugs to all. Goodnight everyone.



~ Amy

april485

Thanks for the Birthday wishes everyone! It was an excellent day. We went for a long ride in the sunshine (hit high 60's today and it was sublime!) and then we went to a few antique shops and I bought a couple of little things. Then we went out to dinner and came home about 6.

Lemon, YAY for getting it done! You too bookwoman! Yahoooooooo!

Chris (braids) I will be in your pocket with you for your cyberknife tx. I know that you are so brave and will do great!

Chiefsfan, hang in there sweetie!

Welcome to Leigh and sneakychiquita and mainegirl!

Amy, you are more than half way through...congrats to you!

Heading off to bed cause back to work tomorrow. Counting the days until I begin. The only good thing is how fast I will be done..other than that...well, you all know.

Hugs to all and Cindy, cheer up will ya? LOL...just kidding! You are amazing! xoxox

Sneakychiquita

Birthdays and rads graduation... parties all around.

Leigh - I had my last chemo on March 19.  They wanted me to start radiation next week, but that would interfere with some partying I had in mind for my own birthday on April 17th so I requested it get pushed back just a little .  Fingers crossed your risk of recurrence is low enough without radiation.  My risk of recurrence after chemo was estimated to be 10-15% despite the mastectomy and node negative status because of the extensive LVI and grade 3 in my pathology (being under 40yrs and premenopausal was also a smaller risk factor).  Radiation would drop that risk of recurrence down to 3-5%.  With discussing all these odds does anyone else feel like they're gambling when deciding on their treatment?