MARCH 2010 Rads Group

CTMOM1234

As I sloppily flip through old posts, the SLAM DUNK it appears began with Fan and AndreaS, but Raili I'm still crediting it to you because you seemed to be the center of the discussion!  Plus I do get a chuckle from your posts!

I SLAM DUNKED the heck out of the today's because baby, I'm NOW OUT OF THE TEENS!!!!!!!!!!!!!!

6 MORE REGULARS AND THEN BOOST ME UP SCOTTY (either 5 or 8 boost sessions, dr originally said 5 then wrote 8, then when I asked her she said she was flexible, whatever that means). Congrats. those who are through or starting the boost, wish I was already there and that my place was open tomorrow, because I'm getting a forced break and will just have to make it up on the tail end -- like a snow day when I was in public school but not quite as exciting.

grama5

16 down, 17 to go. Charmane, I use aloe, but cannot use silvadine. My tumor was at six oclock and would not stay closed. It took three months to heal and they gave me silvadine only to find I'm allergic to it. I was a horrible red ,blistered, itchy mess and went on benadryl to get over it. That is why I'm here with you ladies, originally i would have been dec rads and be done with this.Its been a long wait and I will be very happy to have rads behind me. SEE theres that patience thing again!

Flo

charmainejensenvoisine

Flo - originally the doctor had me using a cortisteroid cream and I do believe that I was reacting to that cream as I was getting pimples from it and itching like crazy and it would sting when I put it on too.  If I may ask re the Silver Sulfa, what type of reaction did you get from it to lead to 'allergic reaction'.   I am on to like Day 3 of using this and am still quite red from the RADS.  (he gave me a 2 week supply - 2 tubes and the first tube use for one week and throw away per pharmacist).  I do not believe that after 2 weeks the burns will be healed as got burned pretty back.

I have 2 tumors  (Ductal and Lobular).   Charmaine

Raili

The skin of my breast is now oddly SHINY.  I wonder if it's actually a build-up of dried aloe??  (And if it is a problem that I'm using 98% aloe instead of 100%?)  I have one of those circular clear stickers over my tattoo, and the rest of my skin on my breast is almost shiny like that sticker.  It's weird.

willheal

I was diagnosed with DCIS in January and had lumpectomy in Feb.  Had to wait one month to have follow up or baseline mammo.  I had CAT scan last week and went for simulation Tuesday.  Was told we would start treatment next day.  To my disappointment and surprise, the billing person had not been informed I was starting next day and even though I had spoken with her 2 weeks prior to this and asked they check everything out with insurance, nothing had been done.  So treatment is delayed.  I believe doctor will appeal.  I got a fairly inexperienced rad therapist.  When I went for simulation a more experienced therapist was telling her how to position me.  She had previously placed 4 tatoos during the CAT scan. During simulation the other therapist added a dot between my two breasts next to tatto. They put tape over it.  Did anyone have this experience?  (That besides the tatoos before the mapping, you got additional felt tip marker dots covered with tape?)

AndreaS97057

Oh yeah, I made it to Friday!  And my poor swollen breast gets a break.  And I'm into double digits: 10 down - 2 weeks - 40% done (I've always been a bit of a math geek: calculating things, counting things to keep my head calm).  Radiation therapist told me to try to not wear a bra this weekend so that there's plenty of air circulation to help the skin heal. 

I've only had the tattoos - 4 of 'em, the one that might show in the the cleavage area is pretty big.  Almost looks like a great big blackhead - ewwwww!  I might have to get that one taken off (my BF says it's about as easy as they were to put on).   No sticky tape for me, thank goodness.  That's the kind of thing that might drive me crazy, wanting to pick at it.

Hope you all have a good, healing weekend.  Pamper yourselves.. I'm certainly going to! 

Raili

I had a total meltdown at radiation today.  I came in just a t-shirt (no bra or underlayer) and did not even have a bag/purse with me, so from my perspective, I had absolutely NO REASON to need to change into a gown, put my clothes and bag in a locker and lock it and put the key on my wrist... I could skip all that and just walk down the hall into the radiation room and pull my t-shirt off.  But NO.  They MADE me wear the gown and couldn't give me ANY reason why that made ANY sense... and I just started crying.   I couldn't help it.  I've been so stressed out for weeks now, that this was just the last straw.  I told them that I feel like a sick person when I have to wear the gown every day, and how it would save so much time if I didn't have to wear it, and that it would be SO EASY for me to just whip off my t-shirt, and that it makes no sense to me to bother changing into the gown just to walk 20 feet so that they can then take the gown off of me, and I don't understand why I have to wear it, and on and on, but all they said is, "I'm sorry you don't understand the reasons for the gown.  This is just part of our procedure for breast treatments."  No one is giving me an actual reason for WHY the gown is so important and what it's FOR, and I can't participate in something that I don't understand.  Why can't they just give in on this, since it's clearly such a big deal to me?  I ended up crying the whole time I was there on the table, and I'm sure it affects my positioning and my ability to hold still/stay in the correct position, if my body is tense and crying.  The tears were running down into my ears and of course I couldn't reach to stop that.

I don't mean to be a "difficult patient"... I'm not trying to get into a power struggle with them just for the fun of it... I just really, really don't understand why the gown is such a big deal to them.  I'm sure they're thinking the same thing about ME, wondering why the gown is such a big deal to me, when everyone else just wears the stupid thing without making a fuss.  Why can't they allow me this small thing to make this horrible 6-week process slightly better for me??  I really get the sense that there is no purpose to me wearing the gown other than to be the same as all the other patients and not mess up their "system." They just want me to be like the others to make their job easier.  But radiation is already so difficult for me... being dx'd with BC has meant losing control of a lot of things, and that's scary and difficult and makes me angry.  I need to hold onto any small bit of control over my body that I possibly can, and that includes not wearing a hospital gown that makes me feel like an invalid every freakin day for 6 weeks straight.

I don't know what Monday's going to be like.  I will at least ask them to please explain to me, again, clearly and specifically, why the gown is so important.  I really HOPE that they have an actual REASON.  What if I end up crying again, too much to hold still on the table?  What if I refuse to even get on the table?  I feel like skipping, every single day.  What if I end up with a mastectomy only because I was too much of an emotional basketcase to make it through radiation?  I hate feeling so stuck, with no real, 'good' choices - I can only try and choose the lesser of the evils.

txstardust

((((Raili))))) I'm sorry they were such asses about it.  I do have a feeling it's a "procedural" thing, and don't see how it would affect your treatment in any way if you didn't have to wear the gown.  Hospital gowns really do make you feel like you're sick, and I truly hope they are able to see your side of things.  They have us put on a gown to walk about 5 feet from the changing room to the table (which is in the same room, by the way), but I think if I asked them if I could skip the gown they would be ok with it.  Let's hope they get reasonable.

Blessings,

Shelby 

MaryNY

Raili: it's only a gown. If you are only wearing a t-shirt, it should only take you a matter of seconds to switch to the gown. If it's their procedure that patients wear a gown, I think you just have to accept that. I was startled the first day when I went in and was asked to remove my wig and glasses. Now I just do it every day. If it makes the techs jobs easier and keeps things running smoothly, then that's no problem to me.

There is one young man who has treatment around the same time as me and he doesn't wear a gown whereas all the other men, and women, wear gowns. I can only presume that he has a brain tumor or a tumor elsewhere on head or neck and feel sorry for him. He stands out in the waiting area as he's the only one who is fully clothed.

YramAL

Raili-I'm crossing over from the February rads group. I'm asking this in the most loving, non-judgemental way-have you thought about going to a therapist? I'm sorry if you have already posted somewhere that you are seeing a therapist. I, too, was totally floored by my breast cancer diagnosis, and it has been a very scary time for me as well. My therapist has been a lifesaver for me. I can talk to her endlessly about everything that I am afraid of.

 I tend to agree with Mary NY-if the gown is procedure and it helps make things run smoothly, then why not wear the gown? I'm just finishing up my 6 1/2 weeks of rads(I'll be done Monday) and even with the gown, I am in and out of there in 10 minutes max. I'm sorry it's such a scary time for you-I really hate when the techs leave the room and close that great big door and leave me all alone in there-but I have learned to close my eyes and go to my "happy place", and before I know it I'm done. 

I hope it gets easier for you.

Mary

Raili

I've been thinking more, and I think for me, it's not really about the gown, per se... the problem is that there are many stressors in my life right now, unrelated (or indirectly related) to having breast cancer, to the point where I'm an emotional wreck.  I'm worried that I'm not going to be able to be calm enough on the table every day for 4 more weeks enough for the treatments to even be effective/possible.  e.g. if I'm crying, it's hard to hold still.  I don't know what to do about this.  I don't know how to do enough emotional healing in such a short amount of time - I don't know how to achieve enough emotional stability EVERY DAY to be able to get through radiation.  I don't want to talk to my rad onc about my emotional problems because he himself IS one of my problems - we don't connect well at all.  I just asked a friend for therapist recommendations, which is a start, but therapy takes TIME to work.  I don't have time.  Radiation is every day, right NOW.

YramAL

Raili-We must have been writing at the same time-I'm glad to see that you are getting therapist recommendations. I hope you can see someone soon-you'd be surprised how much better you feel after even just one visit. Is there a crisis clinic phone number in your area? They may be able to hook you up with someone fast.

Mary

MariannaLaFrance

Hi everyone,

Had my session today, and I am tired, tired, tired. My great friend invited me and my 3 kids to her house tonight for pizza, wine and egg coloring, but I am almost too tired to get out of my computer chair!!

Went to an endocrinologist today. I have this sick sense of wanting to get down to the bottom of things with my health. I have had IBS for 4 years, and after reading John Lee's book about breast cancer, I am almost certain there is something that my internist has overlooked regarding my health. I went to an endo today, and he's testing me for Celiac Sprue, parathyroid levels and vitamin D. I want to figure out what's going on with my health, because I feel like there's something underlying the BC.  Who knows? I might not ever find the answer, but if the doc can help me with my IBS or whatever it is, then at least I'll feel like I've done my best job possible in caring for my body.

An aside, though. I was shocked and dismayed that he told me he thought he heard a heart murmur. NO ONE has ever heard that, and so of course I automatically have started wondering if the radiation has caused any heart damage. Arghhh. I am going to turn into a hypochondriac at this point!!

MzJ

Hi Raili....a few times I've gone right into the treatment room to disrobe.  I had to find a place to put my shirt that wouldn't get in the way. Afterward I like to apply lotion,so rather than tie up the treatment room I scurried to a changing room holding my shirt across my chest.    So I was thinking about those times and maybe came up with 2 reasons why your techs may be being so insistent..

First, the treatment room is intended for treatment. The changing rooms offer privacy and storage. The hospital and staff want to try and help make the experience as stress-free not only for you, but for everyone. The "changing room to treatment room" program is the best plan for all. If they allow an exception for you,  they will have to allow it for all and that could start adding delays. 

Secondly, if there were ever some kind of emergency where they had to evacuate, they want you in a robe, not scrambling for a shirt.  Many work places, especially hospitals, have strict safety procedures with zero tolerance for any infraction.   Hmm, that being said, apparently, the place I go is relaxed with those procedures....

At least we're fortunate and get to take the robe off each day, what if we had to wear a hospital wrist band for the entire 6-weeks...would totally tick me off!

June2268

Today was #12 for me and I am getting a little pink the nurse told me but it is more on the side underneath my arm and I feel like I am irritating it by wearing a bra......I know alot of you women talk about not wearing bras, but I feel like I cannot get away with that.......one side is large and saggy (breastfed my babies) and the other is so small....I feel like everyone is staring at my breast even with a bra on.......What is the secret?

MariannaHB......I often think that too......yesterday I was walking and my chest felt and I was so heavy and I was breathless and I also thought is this a SE or is this due to the fact that I have a chest cold.....I did have a bad head cold that then ended up in my chest......so hard not to feel like a hypochondriac, I never ever was like this either......I found myself thinking way too much and I cannot continue to do so or I will drive myself crazy.....I am trying my hardest not to dwell too much and just try to have fun and move on.....What number treatment did you just finish?

Raili......I feel so bad that you are having such a hard time....you most definitely have had a lot leading up to your meltdown on the table and we are here to hear you out and be there for you, so continue to vent and as some other ladies said seeking help might be what you need.....having breast cancer can make us all crazy.....you might be going through hell right now but you have to know it will get better.....IT HAS TOOOOOOO!!!!  I hope you can relax this weekend and just take care of you!!

I hope all you lovely ladies have a wonderful weekend......the sun is shining and supposed to be out all week.....YIPEEEEEEE!!!!

grama5

17 down 16 to go half way there!!!!!!

Charmaine; silvadine reaction was redness, small blisters and extreme itching. It took me till the 4th day to figure it out as the open incision was already a major irritation. Also I have had little pimples pop up between my breasts that are very itchy, when I asked about them the tech said that rads irritates the hair  folicles (sp) and will cause the pimples. cortizone took care of that.

Raili; I agree with others here that it is procedure, for myself I would feel more uneasy stripping my street clothes of in front of them. Being that I had 3 mnths waiting to start rads I have been reading different threads for quite a while Dec rads, Jan rad and of course now. On dec rads there were quite a few ladies who had extreme anxiety over being on the rads table and they were given a mild tranqulizer. Pop one 1/2 hr before and they were fine. Maybe that would help you. Also, does your hospital have a BC patient advocate. If so take advantage of her. I had many concerns about rads and hormone therapy and she helped put me at ease enough to get through this. She even went to a consult with the rads onc with me. I'm not to thrilled with mine either.

Willheal; the patient advocate can also help with billing. Mine helped me to apply for help with the hospital and some misbilling plus application for $ help with hormone drugs coming up. I am on medicare and it only pays 80% and there is a gap on drug coverage, I am also diabetic so the drug coverage is eaten up pretty quick. once I knew how I was going to get through it financially I was better able to accept everything.

Have a great weekend all, we have rain and more rain here in portland

Flo

kmid

Happy Easter, everyone! I started rads this past Mon.  Had sim. 2 weeks before. No scans with that.Many seem to have cat scans with this. No tube in mouth ever.

Had 4 this week-closed today.  My rad onc doesn't believe in creams until problems arise. Making me a bit nervous, but it feels ok-just looks pretty wrinkled. Have my aloe plant ready to go.  Had a bad sore throat and laryngitis the day I started, Called and they said to come anyway. Pushed through the week and today (holiday) pretty much couldn't do much. Feel like virus has caught up with me.

Gown thing is interesting. Here, they call you, you go in changing room and put on top/tied in back.  In rad room, they tell you to pull out your arm; then they re-mark the tats with temp marker, and then pull up top over breast! Interesting! So 30 to go.  Ok so far.  Since I teach, I can relax on the table. Still working-shall see if I can do it for 6 more weeks. Good luck and good weekend to all.

MarieK

Hi All!

I'm in the home stretch now!  A long 4 day weekend and then just 4 more treatments and I'm done!!!

I am getting very burnt under my arm - almost shaped like a square - and then along my collar bone.  I have a pimply rash (but not raised) along my upper rib cage (I guess that would be under my breast if I had one) but other than that I'm doing good.

Still using the Lubriderm and applying it liberally several times throughout the day.  I use the cortisone twice a day and only on the more affected areas.

So far so good and it will be over SOON!

Hope everyone else is doing good - boy does this radiation go much faster than chemo!

Hugs to all!

Marie

MarieK

I have a question - not sure if any of you can answer but maybe someone will pop in who has finished rads or maybe you've asked your techs or rad onc.

This morning I noticed that after a bit of a break the redness has subsided and now my skin is just very darkly "tanned".

I'm now wondering - will this fade?  Or will I always have such a noticeable discoloration?

Anyone know?

deborye

Yes this will fade and your breast will go back to normal color.

txstardust

Marie, A friend of mine who is about a month ahead of me in treatments said that all the discoloration and skin issues went away pretty quickly once she was done, about a week or so.  

charmainejensenvoisine

Flo - when you started to get more redness and blistering from the Silver Cream you obviousily stopped it and did you switch then over to the cortisone cream?  I was on the cortisone and it was also irritating me and that was the reason the doc prescribed the Silver Cream and I am noticing I am getting more red and now blistering.    There are some parts of my breast where the redness is starting to subside..   he told me to put this cream over the entirety of my breast that was affected by radiation (radiation also burned my areaola (sp??) and nipple area so put cream there and that area is blistering - the areaola area).  Have any women on the forum here got burned from RADS in the areaola area?

I am finished RADS but am gonna call and speak with the Rad Oncologist Nurse on Monday about how the cream is causing more redness and blistering now..   now with my reacting to both creams not sure how to treat this radiation burn. (as I seem to be really sensitive to different creams and doc is adament about me using some cream to heal the burn) hmmm

I am concerned the burn will not go away if I do not have some medicated cream, do you girls have any suggestions.

Charmaine

grama5

Charmaine

I would stop with the silvadine if the blisters showed up AFTER the medicine was used and not caused by rads. I called my dr. and described what was going on and she said stop immediatly and take benadryl. she said it was an allergy to sulfa. In all fairness I do think the silvadine did get my incision to finally start to heal though. Silvadine caused me so much irritation and itching I could hardly sit still. I am 18 days in on rads and my nipple and areaola is one area that is turning color and is uncomfortable, that and under my arm. I did go back to the cortizone cream and aloe Good luck and let us know how it turns out. I know on another thread some ladies that were burnt badly were perscribed some sort of  compress that had meds in it. But then you have to lay there with all exposed!!!!. What about taking some over the counter benadryl and see if that helps with the reactions you are having.

Flo

charmainejensenvoisine

Flo - a radiation nurse a couple of weeks ago gave me a fact sheet for a compress.

4 cups of water 1 level teaspoon of salt. Bring the 4 cups of water and salt to a full boil for 10 minutes and let stand a room temperature.  Clean cloth pour some of this water onto the cloth and wring cloth out and put cloth over the burnt area for up to 15 minutes up to 3 times per day.  Change the 'Saline Solution' (which is the water and salt) every 24 hours.  I have been doing this.

Thanks for replying to my message, I am gonna leave a message for my Rad Oncologist Nurse tomorrow as to what is happening.  Charmaine

MariannaLaFrance

Just going to put this out there. I used to get horrible cystic jawline acne, and since I had my lumpectomy 2months ago, I have not had one single pimple on my entire face. Strange, eh? Just wondering if there might have been a correlation to the jawline acne, which supposedly is a sign of hormonal imbalance, and my recent removal of the tumor.
Hmmmmm.......

cabmom

Happy Easter to all my radiation friends.....hope everyone is enjoying a blessed day with their families!!!

xiaomei

Regarding to vitamins, I asked my radiation oncologist at MGH about it. The answer was "multi-vitamins one a day is okay, calcium is okay, vitamin D is okay, as long as they are not high dosage. Actonel (for my osteoporosis) is okay. Omega 4 (fish oil) is NOT okay because it has antioxidant." About tea and other herbs, my local oncologist told me to not taking them during treatment, "because we don't know what's in it and whether it will have any bad reaction."

Raili, may be you are not ready for the treatment right now. Or this clinic is not right for you. When you don't feel trusting, that would certainly affect your emotions.

charmainejensenvoisine

Have any of you ladies ever tried 'corn starch' on your bad burns or heard of anybody that has?  I am seriousily thinking of doing that over the 2 creams that RADS Oncologist has prescribed that my skin is not agreeing with.

Thanks Charmaine

3monstmama

Back from the beach---we even saw whales!

Cornstarch---YES.  I am using it to powder myself and its working very well. Its especially useful on the underpart.  I use the organic stuff from the coop.

Raili, I am sooooo sorry you are having such a rough time.  I think you have gotten some good comments from people on why the stupidgown and various ideas--I especially like the taking an anti-anxiety pill pre-treatment though I'm not sure how that will impact driving.  As the hospital doesn't seem to be able/willing to change, what can you do that will make the experience less stressful? I was wondering, do you have to go to your zap sessions alone? Where I go has a substantial waiting room and there are always people with family members or friends with them.  Maybe it would help if you had someone waiting with you?  Does your place have any music playing?  Is there something supportive or meaningful to you that you could listen to? My guys have a stereo in the room and a bunch of music---theirs is good but they have told me I can bring my own if I like.  I also agree with the people who say that they shut their eyes and "go to their happy place."--as I said before, I am visualizing the things that I will be able to do because the treatment is going to whack my breast cancer.  It really does help.  

We all live with the illusion of control over our lives and breast cancer certainly rips that illusion away.  From my  Buddhist practice, I was already working with the concept that control in my life is an illusion but that doesn't mean that I didn't have my own mega set of issues when I got diagnoised with this stupidbreastcancer.

 

charmainejensenvoisine

3monstmama - I will then tomorrow morning give the cornstarch a try and see if it helps with the burn and healing process....   Charmaine

 Btw all I came across also another site for recommendation of a cream for radiation cream and I read their testimonials and it is excellent.

http://www.jeanscream.com/

I sent them an email to see if it sells in any pharmacies here in Ajax, Ontario or possibly Toronto. Charmaine