SEPTEMBER 2009 RADS

elimar86861

I had my weekly visit with RadOnc on the third day of rads, so I just asked how much of my lung was getting zapped.  He had the plain film x-rays right there and they were all marked up, and he had the pages of their computations also.  So he checked those and told me of the 20%. I don't know if he would have made any adjustments if I hadn't been so appalled at the 20%.

I also got the "talk" about "won't notice unless you plan to run a Marathon."   I've mentioned before that they all must get together at their conventions to come up with what seem to be their patent phrases.  Anyway, his other explanation was that although a portion of lung takes damage, the other part of the lung is able to compensate to become more efficient over time.  I don't know whether this has actually been studied.  Injured muscle does that all the time though, with healing and therapy.  I have heard that the damage to the lung is visible on future chest x-rays, so it might look suspicious to a doctor not knowing you had radiation.

Finally, now a month after finishing rads, I do have a dry cough BUT it may be from a hellacious 3-wk. sore throat virus I'm just getting over and totally unrelated to rads.

p.s. They call them blocks, those little lead plates in the radiation machine that are adjusted by the computer program that they set up for your treatment area.  I should also mention that I had 3D-conformal radiation, but some women on here (mostly "lefties" I think) got IMRT (tomotherapy) and that is supposed to be helpful in avoiding more of the heart/lung area/

ccbaby

Unclezwifeontony...I had 13 lymph nodes removed and 1 was positive. I radiation on my supraclavicular area as well as my intramammory nodes because my tumor was on my inner quadrants of my breast and it is my left breast. They wanted to do the IMRT type on me, but since I have an expander, it wasn't possible. A friend of mine had the IMRT and said her treatment was longer  (I think she said 45 minutes each time), but it does not hit the lung and heart as much.

unklezwifeonty

Christy, thanks.

Elimar, yeah that marathon phrase must be taught at a pharma sponsored  convention :-)

All, FYI my tumor was @3 o'clock on my left breast.

minevicp

Dear unklezwifeonty, 

       I had one involved node out of 15, and was initially told I wouldn't need rads. But during a 12-week wait for chemo, I produced another armpit lump, and 2 fine needle biopsies couldn't verify whether it was OK or malignant. So 2 tumour boards at different hospitals strongly advised rads, and I took their advice. I had supraclavicular rads, and didn't have any bad effects except a cough for the 5 weeks of rads (it's gone now). The worst time for me was the 2 weeks after radiation, when the skin under my arm turned black(!) and peeled and was very sore. I still have fragile burned skin on my upper back, and I finished rads Oct. 20. From what my rad onc. told me, the rads were a good idea because the cancer was so aggressive (grade 3, like yours). On the other hand, my plastic surgeon (I have an expander & am awaiting an exchange) advised me against rads because it "would ruin the reconstruction". I felt very strongly that I would rather be alive than have a flawless new boob, and actually it's all been OK, my PS is fine with how I am now, and I'll have the exchange in January. For my peace of mind, I needed to know that I had done everything I could to prevent a recurrence - after that, it's all a throw of the dice. We all need to do what feels right for us. Go with your gut feeling about what is the right course for YOU. 

Very best wishes, and good luck!

Titan

minevicp..love your logo!    You are very positive...don't care what other people think..positive is a good way to go....

unklezwifeonty

MineVCP and Titan, thanks.

lollys

unklezwifeonty-- I had double mastectomys for a right sided bc --smally 1cm tumor ( multifocol) I had 30 nodes removed with 2  positive--my tumor was also on the inner aspect of my breast and even though it was very small the sentinal node was very enlarged-- I had chemo and was told i did not need rads by my surgeon and was in a gray zone with all the other doctors-- i was given a choice of all rads--rads without the nodes ( just the breast) or nothing-- I chose rads of everything--my onc infusion nurses said when I mentioned i to them said to do everything I can!!! i am at risk for lymphedema and although I had implants at the time of surgery my one implant is not great and my PS said it couldnt be fixed after rads --oh well --I agree with minevicp I needed to do everything for my own peace of mind--you just have to be comfortable with your decision-- I kept a lot of lotions and silvedene and cold compresses on and I didnt have bad reactions some burning very little peeling and kept it on even for 2 weeks after I was done-- it is now 4 weeks post rads and the skin looks fine -- I am still tired though and that takes time to go away--I struggled with my decision for rads for several weeks but now feel I have done what I could do. hope you find peace in your decision-- stay strong--Laura

BetsyBuzz

Laura - thanks I finally figured out what PS was from your post. Plastic Surgeon...duh Ralph??? I've read it a few times and I kept not putting two and two together. Yeah...I'll claim chemo brain. LOL

Minevicp - I also had the black burnt tissue. Thankfully after three weeks it started peeling and went away. They hit my armpit very hard due to one of two nodes testing positive. My treatment plan always included rads. They added chemo, 4 A/C, 4 Taxol...when my node tested positive post surgery. I think the only reason they took just two nodes is they both tested negative during surgery and my surgeon did not want me to have to deal with lymphedema.

I am 5 wks post rads and can hardly tell I had a flaming boob and black armpit. It is SO wonderful to be getting back to life again. I hope everyone is doing as well as I am. I feel thankful this phase of life is in my rear view mirror.

Betsy

kawee

Is anyone out there still tired.  Been doing alot everyday and feeling somewhat tired, but last night went to a Doobie Brothers concert.  Today, I am so wiped out, I feel sick.  I have sat in my recliner with a blanket and slept all day.  I'm about 6 or 7 weeks post rad.  The other thing, the more I jumped around, the more my breast hurt.  Course, ya think it could be my age?  I think my "wild" days are over.     

lollys

kawee--I am still really tired--do ok in the mornings but by afternoon I cant move--i am 4 weeks out of rads and dont like this feeling-- I think some of it is from the arimidex but hope  not because i dont want to feel like this for the nexgt 5 years-- it is such a fatigue that i just have to take a nap-- I do exercise everyday to keep myself moving but I know what you mean about the fatigue--hopefully this too shall pass!!

AmyIsStrong

I never had much fatigue with chemo and none with rads. But a few weeks after rads, I got really tired.  I wonder if it was from the Tamox which I just started. But i really think it is because I feel so much better and am so happy to have chemo and rads behind me that I am DOING a lot more and THAt is making me tired. I am back at the gym, my calendar is filling up with NON MEDICAL things (how awesome is that?) and I am much more active. And then after some busy days, I am worn out. So I am not worrying as much about exactly why, but am pacing myself a bit more, leaving room for down-time and just enjoying being back to life, whether it is completely at full speed or not.

Titan

Ladies..I know exactly what you are feeling (tired)..I'm running around alot too! I guess I'm glad to see you guys are tired too..after all that activity...we have gone to 2 OSU game in the past weeks..I was jumping too..doing the OOOOOOOOOOO...I don't care if I am 50 and the only one in my row to do it!  Doesn't matter!  Been eating way too much to..have dunlap disease but oh well.

Betsy you do look great...what a beautiful smile!  

BetsyBuzz

Kawee,

I think our reserves are not what they use to be due to treatment, so it may take us longer than we think to get back to our pre-cancer stamina. At least that's how I'm approaching it. My WBC is still a bit low per my onc visit on Thurs, so I don't plan to push to hard until January. I tried pilates...but ooooh...not there yet. My instructor does a lot of arm work and I just could not keep up. Even with modifications, my arm and chest were burning in about 10 mins. So I'm using the elliptical machine until then...after 30 mins. I'm dragging. Slow but steady progress is my motto.

Titan - thanks. I'm loving the eyebrows and lashes again. Life is good.

elimar86861

My ribs are still hurting, by the way.  Not bad, just to touch pressure.  Two weeks ago, I felt like I was pretty much over rads (except a bit of stubborn tan) but now a renewed soreness is in my nipple area and the ducts underneath.  I think I brought it up a few days ago, but it is slightly worse.  Some on here were talking about "breast lymphedema."  Could it even be that?  It does kind of feel like the same soreness I had over my entire breast when I still had some edema from surgery and then the rads zapped the extra fluid built up in there.  Can breast lymphadema give symptoms in just a portion of the breast?

Titan

Hey elimar...don't have any answers to your questions..just saying hi!   I have a shooting pain in my breast now and then...freaks me out..My BS said my right breast was filled with "junk"..just lovely..but it looks OK from the outside...

Betsy..what are you doing in January?  We have to push somewhat because of Thanksgiving and all the Holidays...what fun!  I don't know...so much to be thankful for this year...especially you guys too!

Betsy..I had my eyebrows waxed!  The hair designer asked if she could do them and I thought what the heck...I was freaking a little..thinking that the remaining eyebrows would fall out..but so far so good!

Does anyone have any problems sleeping?  I thought I was good to go but I still wake up now and then..still have some of those darn hot flashes....yuk.

elimar86861

Titan, your BS needs an anatomy lesson.  We all know the "junk" is in the "trunk!" 

I had the shooting nerve pains the first two weeks after rads, but this is different.  I'm a "righty" too, and  yeah, it feels like more scar tissue than regular tissue in there.  Think I will have to "wait and see" if my soreness will improve in some days or not.

echosalvaje

I'm a couple weeks out from rads and have occasional shooting zings where I was radiated. I wonder if it is nerve tissue connecting, they say it takes about a year after surgery for it all to mend and maybe the rads aggravated it? Who knows at this point, eh?

Is anyone struggling with water retention? My legs and feet continue to be puffed and swollen. I stopped the diuretics they had me on because they really didn't seem to do anything. 

MTG

My BS also said my tumor area was retaining fluid. He then added the cheery bit of news that it may take up to 2 years to go back to normal. What ???? But, I guess, bottom like - RADS is OVER !!!! I hope that everyone, despite our various aches and pains, is doing better than we were before when we all hung out daily on this thread. With only a little luck, it's only uphill from here ! Horray !!!!

Titan

Ok..I have junk..the rest of you have fluid...and whatever...what a group we are!   I bet you all have some junk in your trunk too..I can't be the only one!

It is so weird...I used to keep track of how many weeks from chemo and rads I was but now it isn't even important...

I'm watching the Wizard of OZ right now...that wicked witch is really, really GREEN!  Scary stuff!

MTG

OOOH, I love Wizard of Oz. Haven't seen it it years.  Just turned it on. Thanks.

PS - Seems esp. appropriate these days since we've all been carried off by a windstorm and are trying to make our way thru a strange land while simultaneously avoiding the flying monkeys. Okay, that's my dumb analogy for the night ! Back to TV

ccbaby

Weird! I have Wizard of Oz on right now too!

MTG

Oh yeah.....and sometimes we encounter real witches along the way as well (LOL). THAT'S my last bad analogy for the night ! I promise.

kawee

 Speaking of witches, I saw the neatest shirt the other day.  It said, "If the broom fits, ride it."  Wanted to buy it for someone, but, I'm trying to be more positive these days.  But, it would have been a good one.

Binney4

Elimar, yes, breast lymphedema can be (usually is) just in specific places in the breast. At any rate, an evaluation by a fully-trained lymphedema therapist can give you a better idea. You can get a referral from any doctor on your team. Here's a page on breast lymphedema (it's actually called truncal lymphedema):

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

And here's one on how to find a qualified lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Any of you with fluid in your breasts post-rads, even if it's not lymphedema, may find a lymphedema therapist can help you manage it effectively. Their specialty is "swell."

Be well!
Binney

elimar86861

Thanks!

ccbaby

I have Stage 1 lymphedema in my arm (not breast) from the radiation. I went to the therapist 4 times and she has me to do manual massage and exercises everyday and it has really helped.

Titan

Kawee..you wouldn't be talking about your mom in law would you?  Do they have two???

Christy...is that you flipping off the treatment room????  I love it! 

I think our little group of rad ladies are getting a little frisky here...I love it!

kawee

Oh, my gosh, this morning I decided to do my Pilates workout again.  It's all done on the floor.  I could barely pull myself from laying to sitting position.  I felt so shaky when I was done.  I can walk for 30 minutes easy, but I was not prepared for this.  I used to be able to do it with little effort.  What's up with that?  This cancer thing did a number on me.  So you know what this means---Pilates everyday!!!!!!!!!!!!!

Titan

It does do a number on you!   If I sit in a car for a long time I feel like I will stay in that position and I scream when I have to get out of the car to walk it off...if I sit at work too long it's the same way...but then again I can go and walk/run 2 miles..don't feel it a bit but then can hardly get out of the car when we get home..go figure! 

Sparrow

Hi guys!

Can I join in?  My "Acuity Simulation' is tomorrow with rads starting Wednesday.  I know I have to have rads to bring my chances of recurrence down to a level I'm comfortable with, but I'm not looking forward to it.    For some reason my ribs are brittle although my bone density scan turned out to be normal.  I broke a rib sneezing too hard this spring.

I'm 11 weeks out from lumpectomies due to the swine flu and a lot of miscommunication with my oncologist's office.  After a week of calling I finally had to get my husband to call for me and ask for the referral to the rad onc to be faxed. They always call HIM right back.  >:(  Does anyone know if this will decrease the effectiveness of rads?  I'm pre-menopausal and my Oncotype score was 16 so I didn't have to do chemo.