Summer 2013 Rads

CLYDAY

Yay for you girl...your right behind me!!  I am so raw under my arm from holding it up for so long! On my chest it it splotted red/pink/brown...lol. I am so glad to give that part a break...that makes sense about the boosts. I see my RO tomorrow and am going to ask her...I'll let you know if she has anything to ad! Hang in there!!

melody46

That is my understanding also that if it comes back it tends to come back in the scar tissue so thats where the boosts are done

sciencegal

Annie congratulations!!!!! I am SOOOOO happy for you!!!!!!!



Clyday I also really wondered WHY do we have to do this?? And tried to get out of it.

But, even after our mastectomy and chemo there could be sneaky cells hiding out in our skin or any tissue that is left, and radiation kills them off, along with our "Good" skin cells unfortunately, But the normal cells migrate back in to fix the damage from the clean areas of skin that did not have any cancer cells, and did not get zapped.



Clinical trials have shown that adding radiation increases our chance of being done with this forever. So now I am all for it, after I saw those studies. I am looking at that big zapper as my friend.



Anything to fight this beast!!!!



Good luck to you, and to everyone.

GoWithTheFlow

sciencegal, funny you say that the big zapper is our friend.  My rad tech said that to me today, but I struggle to feel that way.  Although I don't hate the zapper as much as I did in the beginning, I'd say we're being socially polite to eachother meanwhile really aren't going to cry when we part ways. 

sciencegal

Haha I will quickly "unfriend it" on August 2 when I am all done!

shmabby1098

hi, first post here - brand new member.  Hope I'm in the correct thread.  Today was supposed to be my first radiation (triple +, her2+, lumpectomy twice then surgery for an infection) but I postponed because I'm going nuts on IMRT v. 3D. 

Nothing I read is telling me definitively one is better for ME than the other.  I recently read about how radiation increases risks both short term and long term (up to 20 years) for heart disease and I have several factors that increase that risk.  This causes me to prefer IMRT but then I started reading how some people not only think IMRT exposes more tissue to radiation but because it's newer there are user error that while not common can and have led to horrific deaths.  Also apparently there is no outside 3rd party that provides oversight to places with IMRT and the financial incentive is just too tempting for providers to not jump in.

Also, my insurance, Cigna denied the RO's request for IMRT so I requested an appeal (due to my elevated risk of heart disease) and now I'm freaking out over user error which I guess is less of an issue with conventional 3D because it's less complicated for the technicians.

Clearly, I must have radiation and SOON and I'm mentally stuck.  I postponed the treatment because my RO happens to be on vacation this week and the temp RO did not want to get involved in the appeal (and I can't say given his position I blame him).

My first thought was do an expedited appeal since apparently Cigna is known to routinely reject IMRT on the first, thinking perhaps they'd approve it on second attempt and if not, I'd just go with traditional.  Now I'm just confused.

Robin3

Congratulations on finishing Annie and congrats Caitlin, you're almost done! :-)

AnnieLane

shmabby, Welcome. I have just finished 25 radiation treatments. The study showing that radiaiton causes heart damage that has been in the media a lot lately is based on very old data from when the delivery of radiation was not nearly as precise as it is now.

Heart2930

Shmabby- Welcome! Like Annie said, those articles are based on very old studies. My RO and I discussed at length the article in the JAMA. These studies are based on radiation levels women received in the 70s, and it is much higher than the radiation we receive today. Today we receive lower radiation in much more precise areas.

I had left side radiation, and we did some imaging studies to see if we could buy my heart some room using a breath hold method. We could. By holding my breath during rads we were able to get my heart about 99% out of the field. Now not everyone can do this due to personal anatomy, but I can hold a fairly large amount of air, and that inflation brought my whole chest up and away from my heart. Has your RO mentioned breath hold radiation to you? Breath hold radiation is not terribly more difficult that regular. I used a snokel like device and basically video game glasses. The glasses had a graph on them, and after taking measurements  based on 85% of the air I could take in for about 70% of the time I could hold my breath, I just had to take in air until I hit the green bar on the graph, and hold it until my tech told me to release (about 28-35 seconds). The snorkel measures air going in and coming out. If I had an issue where I had to release my breath during treatment, the machine shut off and we re-started.

Hope this helps!

beachbound009

After DD ACT, I had a bmx with expander placement in February 2012 followed by final implant placement in August 2012 and have had a recurrence this year.  I started radiation yesterday and I’m so fearfully of what the rads will do to my skin.  I work fulltime so the plan is to have my 33 treatments first thing in the morning and then go to the office.  I need advice on creams/lotions that work well and that will not ruin my suits and dresses for work.  I can use the ointments at night when I get home but I need something to put on after radiation that won’t cause me to need a whole new wardrobe for work.  This cancer is expensive enough as it is.    I'd also like to hear suggestions for the evening....basically, anything that is working for you.  I don't want to want to have a burnt/crisp titty (as my coworker says LOL). 

Thanks for any suggestions you may have.

Heart2930

Beachbound- Welcome but sorry you had to join the club. I had found that Aloevesta worked will and sunk in fairly well for the daytime. I used aquafor at night, because it is very greasy. I don't want to be a downer, but I think we have all discovered (and many of our ROs told us) that you are either going to have problems or not, but lubing up might not prevent the problems if you were going to have them anyways. It might just help with the symptoms. A couple of women in this thread (myself included) really were very rigorous about lubing up but still had significant breakdown. The other side of this is a lot of women had no problems at all. Luck of the draw I guess. I worked throughout my rads too. If you do have breakdown there is stuff out there to help. Mepilex is a silicon bandage that covers the breakdown area to make it more comfortable. I believe Nancy was prescribed silverdene cream. I know Linda used a whole bunch of different things to help with her breakdown. I think Biafine was a godsend. I was actually prescribed this by my dermatologist after rads had ended. I had a lot of broken down skin. Enough that I was taking prescription painkillers on a daily basis. The biafine really helped things start healing in just a couple of days.

Most of the SEs are pretty easy to solve....itching (mix hydrocortisone with the aquafor or aloevesta), minor redness and soreness (OTC antiinflammatories seem to help). My RO told me there is no way to tell who is going to have serious skin issues from rads. He had told me not to worry about it until it happened. Did that stop me from worrying?....naw...but that is what he told me.

Hope this helps and is not too much of a bummer. Just my two cents......

sciencegal

Thanks Heart again for your wisdom. How are you healing???



Shmabby I am doing the breath hold technique as well. I am at risk for heart damage due to the herceptin and a family history of heart disease, but they are able to get my heart out of the field with this. Thanks to taking turmeric capsules I no longer have asthma so can take huge deep breaths and hold them without coughing- yay!!



Beachbound I work full time too and have to wear nice clothing to work so I scheduled my appointments at the end of the day. Is there any way you can do that????? The rooms are usually busiest early, at least in our center, so you might be able to easily switch. I really like going straight home affter I get done, and lubing up there.



I bought some cheap dresses at Ross that have top ruffles for the few days when I do have to go to a meeting after my afternoon appointment. I can put on my emu oil and not wear a bra thanks to the ruffles. and since they were only $12 if they get greasy it's all good. The strategy is working well for me so far!



Good luck to all!!!!!

ldesim

Congrats AnnieLane!!!!!!   A few others of you are so close too!!!

How are you doing Heart?

I'm  2 weeks out tomorrow and my skin is almost all healed.. in the last 3 days it has been healing at a very fast rate. There are a couple of tiny "raw"  areas  and there are also small areas that still need to peel, but other than that I am almost at the new normal.

*hugs*

AnnieLane

Beachbound, my treatment center gave me Medline Remedy Skin Repair Cream with Olivamine, which is also available on Amazon. It absorbs quicker than emu oil and isn't greasy like Aquaphor. I carried it in my purse and put it on after each treatment before I got dressed to leave.

Aloe vera gel (alchohol free) is also good and leaves no greasy residue. I used Forever brand Aloe Vera Gelly, which is also available on Amazon.

Biafine is fabulous, but is only available by prescription and it's an expensive prescription. It absorbs quickly and isn't greasy at all.

CassDugan

I started rads yesterday and am scheduled for 6 weeks, until mid-August. I had a partial mx in mid-May and SLNB (negative) in mid june. I too am doing a breath hold technique, but with nothing like the snorkel or glasses mentioned up thread.



After I got home today, I changed and noticed that the treated breast felt noticeably warmer than the other breast. This was about 2 hours after treatment. I reviewed the handouts and could not find this listed among the SE's. I'm not worried but am wondering if anyone else has noticed this?

AnnieLane

Cass, I noticed that after my treatments. I do think it's pretty normal, but I never asked about it.

pattithenurse

For me---after a treatment breast was warmer. I spent that first day putting on more lotion. I'm running out of miaderm. I'll continue for a couple of months with aloe. Massage therapist told me to follow up with putting something on because of the slow warmth. I noticed 5 days after finishing I experienced fatigue! Whew! That was something. I almost fell asleep standing up. I think I needed to up my protein and drink more water! I think it makes a difference. Good luck to all.

Annie-your hair is...........gorgeous. Topless for sure,right?

Heart2930

Sciencegal & Idesim- feeling much better. Thanks for asking. My skin is mostly healed. Still have some soreness and a little raw area in the boost area, but much better. Now that the skin is healing I am noticing that I have really painful lumps throughout that breast. Hoping it is just scar tissue. Since I was never able to get clean margins surgically, this has me a little worried. I know there was cancer left behind, which the rads was supposed to kill, but the lumps are concerning. Next mammo and possibly MRI is in October, so I am hoping the pain goes away and I am not stuck worrying about it the whole time. Like we don't have enough to worry about huh!



I know you said you are healing Idesim, how about you Sciengal? Still doing ok?



CassDugan- it's pretty normal I think. Some of the women on this thread use the Frogg Toggs chilly towel available on Amazon. I just turned the a/c up in the bedroom at night.



Now that my skin is finally healing, I started the next part of this journey this week.....trying to find a bra that fits. I had a LOT of tissue removed. Basically I am a D on one side and barely a C on the other. I am trying to avoid having to wear a prosthetic filler though. Sick and tired of my old bras collapsing and looking wrinkly on one side. Also tired of wearing just sports bras. After a lot of frustration and a crying session I finally went to a professional bra fitter today. Success! Not the pretty, lacy pastels I am used to wearing, but doesn't look like my Grandma's bra either so I am satisfied. In case anyone is in the same boat after a lumpy, the brand is Anita and the style number is 5490 & 5493. These are soft stretch microfiber bras with underwire or without. I went down a size to fit the smaller breast, but it still stretched enough so it fit well on the larger breast. It seems like such a small thing, but getting a bra that actually fits seems to help me mentally get one step back to normal or start achieving a new normal anyways,

regbeach

Today, the nurse and techs told my mom that her skin looked "amazing" and "incredible" for having only ONE more treatment left on the accelerated Canadian regimen (higher daily dose of rads).  But, one red spot has shown up in the crease.  The nurse said to alternate the Miaderm lotion we have been using and cornstarch.  I just tried to put cornstarch on and made a mess!  I used a paper towel and tried to dab it on but it went all over her shorts.  Any ideas for getting cornstarch into the crease when she is sitting up?

I am my mom's caregiver and, of course, I am headed out of town for 3 days (for only the second time in a year).  So, I need to write some instructions for her aides after I figure out how to do it.  I am praying that it doesn't open up this weekend when I am not here.

Thanks.

Sharon

IamNancy

beachbound-I always got my treatment on the way to work..because of that, I used aloe gel during the day -none greasy and quick drying - no mess.. but as soon as I got home I put aquaphor on -very greasy but very soothing.. eventually under my arm and on my side started peeling and felt painfully burny and thats when they gave me silvaden cream - that was soothing and wasn't greasy - I still use it as my skin is still healing there..but its much better..

Still not using deodorant under that arm.. its still peeled and dark... and since I am using silvadene I can't think about using deodorant.. doesn't sweat and there isn't any smell..

Heart-glad your skin is healing and you are able to wear a bra...

Regbeach - cornstarch is a mess - just like powder but I use it under my breast and use a powder puff..

GoWithTheFlow

regbeach, I've used a face powder brush to apply it.  Put a little in the lid, daub the brush in it, then apply.

AnnieLane

Regbeach, I use the cornstartch baby powder (talc free.) I just sprinkle it in one hand, lift the breast up with the other and sort of pat it in place. I've also applied it lying flat on my back on the bed. The powder puff or brush sound like good ideas though. Glad your mom has done so well with the rads. I think you made the right decision in skipping the chemo for her. I didn't want to come out and say so at the time, but I think it would have been too hard on her.

Heart, thanks for the info about the bras. I was also a D cup, but think I'm a C on the lumpectomy side now. I'm tired of stretchy, shapeless bras, but I'll wear them a little longer until my skin is healed. Glad you're healing up after your awful ordeal.

I also have painful hard lumpy scar tissue, but since I had clear margins, it hasn't worried me. I'm assuming the pain will go away when I'm completely healed and hope the lumpiness will decrease also.

sciencegal

http://www.amazon.com/Biafine-ACT/dp/B008CP6UJA



Is this the Biafine that you guys are using or something else? I dont have a prescription but was looking for it and saw this one on amazon. maybe something different?



AnnieLane I love your new avatar- you look great!



Heart I am so glad you are healing and starting to move forward from this. Especially after all the "free-boobing" required during rads that new bra must be great. Congrats!



I have scars inside where they did pocket work (the ps let me know where they are) and they are more painful during rads. I thnk it irritates the healing process. Hopefully that is all that is going on for you too.



Yes my radiated breast is much warmer, especially right afterward. I think this is expected.



I am only on day eight so time will tell- thanks for all the tips everyone!

Hugs

Heart2930

Sciencegal- that is the non-prescription version on Amazon. I assume it's weaker. If you can, I would ask for the prescription Biafine. On the other hand, since you are not having major issues, the non-prescription might be fine. I had heard that the prescription was very expensive. Even my dermatologist said it would probably be $75-$125 dollars and that insurance usually doesn't pick it up. However my insurance did pick it up, and all I had to pay was the tier 4 copayment of $40. Still expensive but much better than expected. I think they might have covered it because one of the prescribed uses is to treat radiation wounds, and my dermatologist usually prescribes it for other things. For instance she used it because the day before her wedding she ended up with a waxing burn on her face. The Biafine cleared it up enough to be covered by makeup by the next day. So that might be why she said they usually don't cover it.

slv58

I had my third treatment yesterday and warm breast also.

Annie, love your pic! My hair is coming in white also and I like it! I just wish it was thicker, the top of my scalp really shows through.

I'm wondering how much my radiated breast will shrink. Right now I have a matched set (lol) always been a c cup, but even my BS said rads will shrink my breast.

Still trying to warm up to the black and gray zapper, I know it is decreasing my likelihood of recurrence, but I still can't stop thinking of all possible SE.

I'm 9 weeks pfc and find that I'm feeling much better, more energy, shortness of breath is almost gone, but I find my joints are so sore. When I get out of my car or just get up from sitting, I feel like I'm 100 years old-every joint hurts and is stiff. I've been walking 30 min. a day and once I move around it gets better, but I'm wondering is this the new me or will this go away with time?

shmabby1098

Re the study on increased heart disease for women receiving radiation for bc.  i read that even though it acknowledged that newer radiation uses lower doses ALL women receiving ANY radiation for breast cancer are at increase risk for heart disease.

My RO didn't discuss this with me (if she did, I don't recall) nor was the breath holding technique nor any of my other risk factors, treatment for Her2+, diabetes mentioned.I'll ask this when i see her on Monday.

thanks everyone

sciencegal

Thanks heart I was wondering. Great story about your doc and the waxing mishap! I am so glad to know that your skin is healing a bit better. Yay for you!!!



Slv I also had the severe joint pain from the taxotere and some days could hardly get out of bed or a chair without screaming- it would have been easy to fall back on the pain pills but I have been working throughout and had to stay sharp.



While I still get twinges four months Post-final chemo, it is MUCH better. I am back to working out and some days it doesnt even bug me at all. I sure hope the same is true for you!



Also, I used coldcaps to save my hair because I have had to hide my cancer at work, but it did get thin on top so that the scalp showed through in some spots and I was able to use the Toppik microfiber sprinkles sold in different colors at Sally Beauty and Amazon to cover any "pink" areas seen through the hair. I was amazed at how well they worked actally. Just wanted to mention.

Good luck to all going through rads today, and recovering from them too!

GoWithTheFlow

The hair on top of your head comes back more slowly than the sides.  The top is filling in now, although not as full as the sides still.

I feel pretty darn lucky that my ro gave me a tube of prescription biafine if it's that expensive.  Another reason to love my RO Yoda!

After today's treatment, I'm down to 11.  I will be in single digits by the weekend.  

Heart2930

So sorry you had to hide your cancer at work Sciencegal. Sounds like you went through a lot to keep it quiet. As if you didn't have enough to deal with!

beachbound009

Heart – Thank you for your honesty.  I’ve read most of your posts and hate that you’ve had to suffer. 

 Sciencegal – I may change my appointments to later in the day as my treatment progresses.  Right now I’m trying to keep up with MY LIFE and not let this cancer, once again, control everything I do.  I workout/run after work so the morning appointments allow me the ability to keep this up, for now.  I like your Ross suggestion, thanks!

 Annie – Thanks for the suggestions.  I have Aloe and have ordered some creams that should be here Friday.  FYI….the Target brand Aloe Vera does not contain alcohol. 

 Nancy – Thank you.  I used Aloe after my treatment this morning and will get greasy when I get home tonight.  J

 Today was my 3^rd of 33 treatments on my left breast.  I started having shooting pains in between my breasts and up on the 8 o’clock region of my left breast yesterday shortly after treatment.  It made me ditch my bra at work.  Just not fun.  It’s hard for me to pinpoint exactly where the pain is originating because I don’t have much feeling due to the mastectomy.  I mentioned this to the tech this morning and she said I’m kind of a special case because my skin is already tight and I may have SE sooner due to this.  It’s tight because God gave me A boobies originally but my prize for getting through chemo and the mastectomy was getting D boobies.  So I don’t have any breast tissue and the skin is pulled pretty tight.  This saddens me so.  My new breasts are so pretty (minus my new scar from my biopsy) and I can wear clothes that my A’s never allowed me to wear.  I’m scared lefty is going to get much tighter and maybe move and that just sucks!  Anyway, I was a little pink last night so I fear my thin skin is not going to hold up well.  When I express this to my husband, he thinks I’m overreacting.  My MO told us that I MAY NOT have any SE at all.  Well, my husband took that as I WILL NOT have SE.  Men…they hear what they want to hear.    He’s very supportive of me but he just doesn’t get this part.  I’m glad I joined this group.  It’s nice to read others experiences to know what I may be up against.  Thank you all for your suggestions and support.