March 2009 Rads Group?

Mary22

Congrats Nelia!!!!!!!!!!!!!!!

Wish my news was as positive, well it is positive for BRCA2 gene mutation. My sister told me I was MMM (middleage mutant mom)LOL! She is on the phone now calling for an appt ofr the gene test. I see a surgeon on Fri the 17th for a consultation about removing my ovaries and tubes!!!!

I had a feeling the test would be positive, so I am not surprised or upset, I was mentally prepared for this.

Rachel_BC

Nelia- that is the BEST BEST BEST BEST BEST NEWS!!!!!!!!    Oh thank G-d.  I haven't checked your blog lately, I will.  And it would be utterly amazing if your nurse actually was reading your blog.  What an incredibly caring and wonderful thing for her to do!  Definitely you must celebrate this.  I am celebrating up here- I actually started breathing easier for you last night b/c you let 2 days go by without calling, and surely surely they would have called you if there was a problem.  That kind of thing they actually move on.  But... until  you got the word... couldn't be sure.  I have heard of this kind of thing - its a rare scenario, but then so is your whole scene.

Your doc's beside manner leaves a lot to be desired, but overall, they are taking good care of you.  Thank G-d.

So happy for you!!!! THANK YOU FOR POSTING THE RESULTS!!!!!

{{{{Hugs}}}} 

Rachel_BC

Oh crap Mary.  Too much to say in a post, I'm happy I'll see you soon and we can yak about it. I guess it can all be put under the heading of "Lemonade from Lemons", and "at least you found out early enough to do something about it".  I'll be following you on the oompf thing, like I am following you on the Tamoxifen.  Oh and didja ask  your ONC about Zometa?  

{{{HUGS}}} Mary 

Note to the March RADS gals- Mary and I met on Monday, and she ROCKS!

Mary22

Yes Rachel and I met and it was really like talking with an old friend . We had a great time and Rachel Rocks too.

Jeanne_D

Nelia...That is the BEST news ever!  I am so happy for you!  What a relief, eh?  Congrats again!

Jeanne

nelia48

Thank you, all of you!  I'm not a good dancer, but I was doing the happy dance here!  And breathing again is a nice thing!

 Mary, I agree with Rachel, pure lemons!!!!  But lemonade is good!  On the positive side, it is so great that they actually have these tests now and can at least help women prevent stuff from happening!  No one in my family ever had breast cancer -- I'm the first. I have two sisters, one who is going for a biopsy on the 17th as she just found a lump.  She's already been through stage 4 colon cancer, so I'm really praying that this is nothing.  She's been through way too much already!

Thanks again, everyone! 

Mary22

Okay, I need help!!!! LOL seriously I am totally absentminded. I remember a lady on this thread or the tamoxifen thread that had an oophorectomy and was gardening the next day. I have been unable to find her post, I wanted to ask a couple questions.

1) Why ooph and not complete hyst?

2) Did you have a specialist do it or a trained fertility doctor?

Rachel_BC

Mary- I will PM you who that was

TorchSong

Nelia, doing the happy dance with you! Yay!!!

And Kristi, I think I'm still swollen a bit from the rads. The only reason I know it's swollen is because that side was always smaller than the other and right now they are the same size.

Mary, bummer...Hugs...

Martha

Rachel_BC

Oh I am definitely still swollen from RADS.  Definitamundo.  Without a bra I got the one up one down.  Got some weird wrinkly stuff on the side too, I think maybe its what stretch marks (from being fat) look like when the boob is up instead of down.Definitely can't even think about lying on my stomach, and even without a bra, when the boob is lying on my skin, it gets heated up and hurts and I get the rash again.  I HAVE to have something between the underboob and skin.  So it's either wear a bra or tuck something under there. Still sleeping like I did during RADs (not counting the really bad times).  Skin is darker, and the nipple has some dark brown stuff on it that doesn't wash off.  When I take off my bra, theres always the indentation from the underwire, and it sticks around for a while.  The boob kinda feels like its made of crepe paper, the nipple is super sensitive, but in a way the whole boob is sorta numb or lacking sensitivity.

I have just resigned myself to being one of the people who has symptoms for a long long time.  And I still have the picture in my head of Spock at the end of the movie when he's saved the ship (and the world, I forget) by going into the room with the radiation, saying goodbye to Kirk "I will always be your friend".... My poor boob, it's taken a lot of radiation.  Sadly or happily, there's no one else here to notice it when I am naked.  It looks OK in the bra during the day.

What I am thinking about is the first post-RADs mammo.  Mammos never hurt me before, but if they are going to squish this poor sore (large) boob, that's going to hurt like a sonovagun.  I am planning to eat some motrin and/or vicodin prior.  I want them to squish it, do whatever it takes to check it out properly, and I don't need to be in howling pain while they do....

Rachel_BC

Oh but... the last 3-4 days, maybe more, I have got my energy back- and how.  I don't need a nap (although I sometimes want one).  I can have a big day and not crash the next day unable to wake up or move.  I have had several big days in a row now,  and actually think I can make plans reliably, I am getting chores done, don't need help, taking on big projects, catching up sorta.

I drove a whole bunch- first time in a long long LONG time- since RADS began.  

So I am hopeful that aside from a sore boob and a couple scars and you know, the terror and all that, I am feeling good as before BC.

I am dropping things and forgetting where I put things an awful lot but I think that's more the normal thing that happens sometimes.  Doesn't feel like radiation brain/fatigue stuff.  I am not worried I will put the cat in the refrigerator any more.

Well,  unintentionally I mean...  

Jeanne_D

Nelia, I am doing the happy dance for you too!  So happy for you!

Wasn't today a beautiful day?  The sun was shining, just some big old puffy clouds floating around, the birds singing.  A great day to be free of cancer!

We have to learn to appreciate anything and everything as each day is a gift!  And, we are all so lucky to have survived the beast!

Have a great day tomorrow ladies!  I'm having lunch with 2 of my girlfriends and then doing some serious shopping.  Need a new bathing suit and some shorts and tops.  Love shopping!

Jeanne

Rachel_BC

Oh I am definitely still swollen from RADS.  Definitamundo.  Without a bra I got the one up one down.  Got some weird wrinkly stuff on the side too, I think maybe its what stretch marks (from being fat) look like when the boob is up instead of down.Definitely can't even think about lying on my stomach, and even without a bra, when the boob is lying on my skin, it gets heated up and hurts and I get the rash again.  I HAVE to have something between the underboob and skin.  So it's either wear a bra or tuck something under there. Still sleeping like I did during RADs (not counting the really bad times).  Skin is darker, and the nipple has some dark brown stuff on it that doesn't wash off.  When I take off my bra, theres always the indentation from the underwire, and it sticks around for a while.  The boob kinda feels like its made of crepe paper, the nipple is super sensitive, but in a way the whole boob is sorta numb or lacking sensitivity.

I have just resigned myself to being one of the people who has symptoms for a long long time.  And I still have the picture in my head of Spock at the end of the movie when he's saved the ship (and the world, I forget) by going into the room with the radiation, saying goodbye to Kirk "I will always be your friend".... My poor boob, it's taken a lot of radiation.  Sadly or happily, there's no one else here to notice it when I am naked.  It looks OK in the bra during the day.

What I am thinking about is the first post-RADs mammo.  Mammos never hurt me before, but if they are going to squish this poor sore (large) boob, that's going to hurt like a sonovagun.  I am planning to eat some motrin and/or vicodin prior.  I want them to squish it, do whatever it takes to check it out properly, and I don't need to be in howling pain while they do....

Oh but... the last 3-4 days, maybe more, I have got my energy back- and how.  I don't need a nap (although I sometimes want one).  I can have a big day and not crash the next day unable to wake up or move.  I have had several big days in a row now,  and actually think I can make plans reliably, I am getting chores done, don't need help, taking on big projects, catching up sorta.

I drove a whole bunch- first time in a long long LONG time- since RADS began.  

So I am hopeful that aside from a sore boob and a couple scars and you know, the terror and all that, I am feeling good as before BC.

I am dropping things and forgetting where I put things an awful lot but I think that's more the normal thing that happens sometimes.  Doesn't feel like radiation brain/fatigue stuff.  I am not worried I will put the cat in the refrigerator any more.

Well,  unintentionally I mean...  

BooBee

Great news nelia!!!!!!

Mary... that was me that gardened the same day of the oophera thingy.  Granted, they are raised garden beds.  I had it done on Friday and was back to normal by Monday.  A bit tender there for awhile....maybe a week.  I had a hysterectomy 3 years ago but I kept one of my ovaries so that I had hormones.  If I only knew.  Sorry about the BRACA results.  There is a great web site exclusively for BRACA 1 and 2.  Have you found it?

My DH's 4 sisters have tested positive for BRACA 2 so we will be getting him tested first prior to testing our daughters. 

BooBee

Anyone having problems with fatigue again?  I was feeling wonderful until two weeks ago.  I'm also bruising badly and I'm having problems breathing.  Anyone else?

Mary22

Thank-you Renee, I am debating hyster vs ooph. I have 3 children and a busy life, I do not think I could be laid up for six weeks after complete hyster. Of course  was only out of the hosp. 3 days after my third child( I almost died w/toxemia) and I was shoveling snow(hubby in just flew back to mississippi w/ military) The next day I was moving 50lb boxes of stakes, b/c hot water heater went and I had to clear a path for plumber. As you can see I do not follow dr orders. I am use to doing what has to be done. How did I go from normal to italic? must have hit the wrong key. 

Have a great day!!!!!!

nelia48

Sorry everyone is still having some lingering crap from the rads, though I'm happy to hear it's not only me.  My ribs still hurt if I try to sleep on that side.  Since I had a mastectomy, my skin is a little different than the rest of you, but it is still "different."  Like baby skin and very sensitive.  And still warm and will dry out if I don't use creams regularly.  I hate all the fatty lumps that the surgeon left.  Don't know why he did that.  And sometimes, they swell and are tight, and sometimes, just flabby!  I'm tired, too.  Don't know what to attribute that to, since I'm on Arimidex and haven't had a good night's sleep since about February!!!!!  I did get some Ambien, but feel like the worst hangover ever the next day --- nausea, headache, etc., etc.  But I'm about ready to take one and just sleep it off the next day, even if it takes all day!

you young gals are a hoot!!!!  Wish I had half the energy you have! 

BooBee

Mary...If you're taking Tamoxifen you have an increase risk of uterine cancer as well.  (You'll want to confirm this.) I'd go with the full meal deal.  There is never a good time to be laid up.  I was feeling pretty good after 3 weeks and back to normal at 5 after my hysterectomy.  I also had a bladder lift.

BooBee

Please don't share this with anyone yet, we're still working on it.  Is there anything that doesn't make sense or may offend someone with cancer.  Please be honest.

http://www.youtube.com/watch?v=QC_ZvthjfFc

BooBee

Like when I said "this is natural"  I meant to say "this is life"

Mary22

Renee, WOW!!!! What can I say, except that was a wonderful video. Yes I ahve been thinking more and more about the whole meal deal! Of course any surgery is scary!

I will wait and talk to the surgeon and see what he says.

I have been very tired today and the side I had rads on is hurting. I will try to get some sleep tonight!!! Emphasis on the word TRY!!!!!

bluedasher

I'll second the WOW!!!! That was great Renee. You have such a nice voice and the video looks very professional. I don't see anything to offend anyone - you were even careful to point out that a hair cutting party isn't for everyone. And you mentioned that some cut it short first - I did that because I didn't want to deal with my long hair post surgery.

It says that losing hair can be a traumatic part of treatment but you can get through it and get to a point where you aren't embarrassed about it.

It does leave me wanting to see you with the hair coming back, but perhaps that would undercut the message - the current ending is very good.

BooBee

This was put together by my youngest daughters ex-boyfriend for his last project for his college portfolio.  Media major.  I got the hair cut party idea from Martha.

SusieMTN

Hello Ladies I have been out of town for a while and STUFF!  But have a bit of a situation and I wanted to check in with all of you to see if anyone else has this situation.  I finished Radiation in the begining of May, with 2 of my boosts being cut short due - my incision was breaking down in a spot.  Mind you I have had problems with that area since shortly after my mastectomy in Jan, steri strips irritatated my oh so sensitve skin and ended up with a slight infection.   Well here it is July and lo and behold the same area has broken down and is now a gaping hole.  Surgeon said it may be the CANCER coming back, I said no my incision won't heal (lucky he couldn't read minds. (Seriously, do they think you hear a "may" or a "might") Well, after spending 2 days crying I finally got REALLY pissed off, I am all for them being careful with our health but that was an unnecessary scare!  So I took some antibiotics, and started using polysopin then switched to neosporin.  Low and behold it is starting to heal.  It has been a big hole since the end of April or the begining of May!  Has anyone had a problem with their incision breaking down?  Also, I still have Radiation dermitis, is anyone who finished in May still having skin redness etc.....?

BTW ReneeS your UTube is great! WOW, well done!  Pretty much the way I felt! 

  

Jeanne_D

Hi Susie!  So sorry about your problem.  I hope that it gets better soon.

I don't have the radiation dermatitis still, but, I have what my radiation oncologist calls hyperpigmentation.  It is a slight redness at the booster site only.  He says it almost always goes away, but, it just takes some time and I have to be patient.  Noone else really sees it that well, but, I do ofcourse.  My hubby says he can barely see it. 

Wishing you well! 

Anonymous

Hey Ladies...I've been out of touch for awhile...just busy, busy.  Wow have I missed a lot!!  

Susie, I finished rads April 29/09, skin breakdown healed up by mid May, my skin is still slightly darker and still warm to the touch on the radiated side.  Roughly around the 2nd week of June I noticed that the are around my collar bone that received scatter radiation started to get really itchy and "bumpy".  I've been putting cream on to keep it moist - which doesn't seem to be helping very much.  It is still itchy, red and bumpy.  Some days I don't notice it at all and other days...man oh man...it drives me crazy.    I probably should call the rad oncologist..guess I am just tired of doctors in general.... 

bluedasher

Purple, have you tried hydrocortisone cream on it? That usually helps when it gets itchy.

Anonymous

Hi bluedasher - I have tried the cream and sometimes it works and sometimes not - go figure. However, I really try to use organic products whenever I possibly can.  I suspect that eventually this skin thing will settle down...one hopes.  :-))

kristifromsandiego

Susie, my incision broke open after my plastics guy filled me to full.  It was right at the beginning of chemo so my body had a hard time healing but with anti-bacteria cream twice a day it eventually healed.  Just do it and keep it as clean as possible, I might also check with your plastics guy or your radiation oncologist.

Mary, I am sorry about the BRAC2 test but it is better to know.  I have a girl friend who didn't find out until she was diagnosed a 2nd time with breast cancer.  She is going strong racing bikes allover the hills of San Diego.

Bluedasher, how are you doing?  Are you done with everything? I know our diagnosis were different but it has been about 10 months for both of us...it is hard to believe how our lives have changed. 

Nelia, happy to hear that all your tests have come our well for you...it seems like you waited for ever to get the results. 

I know that we have had lots of discussions on this site about food and sugar, but I am still reading this book, written by a doctor who got brain cancer. He spells it all out that food can really help us live a healthier life.  He is really down on white sugar and white bread and all the "bad stuff".  I recommend it to anyone who doesn't know a lot about food.  It tells you which veggies and fruit you should buy organic and which ones it doesn't make a lot of difference.   The book, The Anti-cancer a new way of life!  

It is screamin hot here 97......better go put my feet in the pool.  Kristi

Mary22

Hello all, hope all had a good day. We have finally had some nice weather, no rain!!!! .

Makes me very happy.