March 2011 Rads

dianemoe:  I would say you need to make an appointment.  Those symptoms sound a little bit off the scale of what the majority of us have been experiencing...especially the swelling. They said it will take two years to fully recouperate from rads...and that means new side effects can pop up and other recede, but I would be concerned about the swelling...sounds like a type of lymphodema, and you want to start on therapy with that right away.  If you don't get the answers you want from your oncologist...go see the radiologist or the surgeon...they all seem to have different opinions and seem to blame the "other" procedures for SEs.  Pursue it.  You are your own best advocate, so if you hearing the inner voice say "hey, this doesn't seem right"...listen to it.  That's how I got my dx at 37.  Thank goodness for the inner voice. I'm still sore, and my swelling seems to have receded...now I look like I have a 20year old boob (the Lx rads boob) and 40 year old boob(poor boob did not get the same nip tuck attention!)

The GYN called today...she wants to do a hysteroscopy on the fibroid...she's concerned that it's at the upper range of what can be removed via the cervix.  So I'll be on the table again in the next month, but this time I'll have my legs in the stirrups.  If it's not one end it's the other!

msjag: I definitely want to meet this summer! I'm working really close to OOB!  Let me know when you're in town!

msjag...that's an awesome story...sounds like it should be in a sit com!  I'm not sure if I'll get general anethesia or not, as she's going to be scooping the fibroid out.  I feel really luck to not be going in for a hysterectomy...If this fibroid removal doesn't stop the heavy bleeding, I'm thinking ablation next. 

Had the old breast press on Wednesday (11th)  They had to call me in for additional shots.  Something was amiss on my lefty...NOT my BC side...the radiologist said that it was just a lymph node.  And everything was OK.  But here's the thing.  I have a friend that is trained in therapeutic touch, and she told me that I should have may lefty on my left side checked.  She tole me this in February and I waited until my next mammo...saying it was most likely nothing. I'm going to call my oncologist next week, give her time to get the pics, and see what she thinks.  I've started acupuncture this week.  I decided to not have the fibroid removed.  Everytime I think about that surgery I break out in a sweat.  I just can't visualize it without something going wrong and having my uterus completely removed.  I'm on a wheat and dairy free diet.  And I'm going to get a second opinion about fibroid treatment.  I know I've been obsessiong about this, but I just feel like all of the problems are related...BC, uterine fibroid, ovarian cyst...and I want someone to treat the whole process not just one thing at a time.  Not sure if this is left over cancer crazy or not. 

My rads anniversary is April 14!  I can't believe it's been a year.  I'm still tan, and I have really sore spots underside...almost like cording, but that's been there since the surgery.  My muscle is still really tight and I feel it when I stretch.  All in all it looks pretty good. I've got a freckle that's bloomed on my nipple, just a little one, and thankfully my nipple is no longer 15 shades darker than it's partner!

msjag: Happy to hear your MRI results were good! And your trip to FLA sounds like it was a blast!

GirlFriday: I read that book "It's Not About The Hair" when I was going through treatment. I thought it was so good. It really helped me put this whole thing into perspective. I hear you about wanting the whole process treated and not just one symptom at a time. I think you may be onto something about it all being related. I had uterine fibroids for years, and cysts in my ovaries. I ended up having a hysterectomy 7 years ago, but now I wonder if that was really the way to go. 

Congrats to everyone on your rads-iversaries. Mine is May 2nd. And like my oncologist said after giving my one hell of a thorough breast exam last month: It doesn't look the same. It doesn't feel the same. But it shouldn't. It's not the same, it's been radiated!

Hello!! Just stopping by to say hi, hope everyone is doing well!!!

Claire, glad you are doing well, nice to hear from you!!  hooray for the two year anniversaries!   Hope your next stage goes just as well!!

Hey Everyone!  I hope everyone is doing well.  It's October, and every where I look there are reminders...It's almost like someone barfed pink everywhere!  Anywho...I was just wondering how everyone is doing with fatigue.  I've been having the weirdest experience the last week or so.  I get that mind numbing buzz in my ears, and I feel like someone sucked all of the energy out of me...I used to feel this was an hour or so after rads...has anyone else had a rads fatigue flashback?

GirlFriday and CM...good to see you! hope all is well. GF, sometimes I feel like my whole body is radiating...strange..don't know if its menopause or from the rads or chemo!  fatigue..every once in awhile I feel wiped, but I never did during rads!  Oh yes..Pink Oct......was hard to explain to my sister, great causes but it generally makes people who don't have BC feel good the events/donations...not that we aren't grateful and I do participate in some events of fundraising..just hard to explain without seeming ungrateful...and I hope they never have to understand!!

GF.....never made it to OOB or any ocean this summer    . 

Hi !

I realized I haven't been back to this thread for a long time. I hope everyone is doing well.    Its really interesting about the ear noise and maybe low BP connection.  I have had it constantly since bc but I also notice it is worse when I am tired. My bp runs 100/60 and can dip a little lower.   I used to think a low bp was a good thing, not so sure anymore.

I may ask my onc about Effexor, I'd love to have my normal hearing back! 

For those of you who still feel the after effects of rads,... I'm with you. Anyone else still have skin issues?  I have a bunch of broken blood vessels, like spider veins on the rad side that have yet to go away. 

Lee

Hi Everyone!!

I just had my last "every 6 months" mammo last month. Everything is looking good. 

I AM having some major pain in my sternum and now ribs. It feels like bone pain. Been going on for about 3 weeks now. I've got a call into my onc to see if we can figure it out. I'm hoping maybe it's just residual leftover radiation scarring or something. I'm not even considering bone mets. Nope - not me! Not willing to go there in my mind. HA! 

My BP has always been low and is continuing to be low. 

i just stopped taking the Tamoxifen and had a total hysterectomy. My onc is going to put me on something else, I forgot the name of it. I was not tolerating the Tamoxifen well at all! 

Also looking into a double mastectomy maybe early next year. After all the research I've done, I've changed my mind and have decided to do it. My oncologist told me that yes, it would prevent breast cancer from coming back - BUT, he basically said that if I'm going to have malignant cancer, it's going to happen, no matter whether I have my boobs or not. Made sense, but I still am ready to get these boobs off. I was completely unprepared for the aftermath of what happened after treatment was over. I'm still dealing with side effects and MAJOR chemo brain issues. I just went to UAB, Birmingham, AL last Friday for all day cognitive testing. Get results back in about 3 weeks. 

I'm back to the land of living, just having to adjust to the major life changes that cancer and treatments have put in my way. 

Borrowing from msjag - SCREW YOU CANCER! 

Love & hugs!

Hi msjag!!!! If your back is getting worse, please go get it checked out. The sooner the better. I know none of us want to "go there" but you know that sooner is better if we do have to go there.

Yeah, I hear you about the double mastectomy. There was just so much information overload while we were going through it all, I don't think I had all the answers I needed to make an informed decision to begin with.

I was diagnosed at 39. I have two friends, one my age, and another in her early 30's, same inital diagnosis as me. Both are stage 4 now. It breaks my heart. Both of them wish they had done a double mastectomy from the beginning. Again, my onc says that getting the girls removed will only prevent breast cancer, NOT mets, but still, knowing the difficulty of going through breast cancer, I don't want to go through it again.

Visited my onc today. We discussed truncle LE and radiation pain. He doesn't think it's either. He said he's concerned. NOT what I wanted to hear. I told him, "Ahhh, wrong answer! You're supposed to say, 'It's all in your head, you're fine, go home!'"

So, he's scheduled me for a CT and bone scan (same day) on Friday. **ppffftttt** I'm staying focused on it being radiation pain or truncal LE though. I refuse to let myself think about it being anything worse.

Anyway, so that's where I'm at right now. Not willing to admit I'm scared shitless. Just pushing forward and pissed off as hell at this damn cancer that makes us look over our shoulder at every single new thing going on in our bodies.

Love, hugs & blessings!!

Thank you msjag. I need all those positive thoughts and prayers to keep from panicking. LOL

ShelMel...per my surgeon the chances of recurrence are about the same for Mx and Lx with rads...5-10%.  Your dx is pretty good considering how early you caught it...althought the numbers of the dx are never quite what they seem are they?  I'd do more research before you have more surgery...for the simple reason of surgery is painful, and I think at this point as much as we are all worried about BC, do we really need more pain too? So I'd encourage you to go for a second opinion.  I have a friend that had a BiLat, rads and chemo, and recon and she was dx'd less then two years later with BC mets and from my understanding she had BC and mets, because it's not always possible to remove all breast tissue with Mx.  I'm not sure of her stage but she's had surgery and is going through chemo all over again.  So I guess sometimes it just doesn't matter what you do.  I know there's no comfort in that, and I'm definitely rambling, but regardless of whatever your own personal "cancer crazy" is encouraging you to do, research, research, research, and get a 2nd or even a 3rd opinion.  We are our own best advocates!  And as I was told in the beginning of my dx by my BC Surgeon...take your time, make the decision that's best for you.  I really hope things turn out for the best with all of your impending tests! 

Hey guys - - I'm copying and pasting portions from another thread I have been in, looking for answers.... . . Too tired to type it out again:

 My onc called tonight. It doesn't look good. Found 20-30 nodules in my lungs. Onc says that it's highly suspicious of mets. He's scheduling a PET CT and they're going to check all my other organs and see if they can find a nodule close enough to biopsy. As always, they won't say 100% definitively until they get that biopsy. He's scheduling the biopsy for next week, if they can find a good one to get to. I didn't even think to ask what we would do if they can't. He said it doesn't look like pneumonia or anything else, but of course, they have to get that tissue first. Blah, blah, blah.

I'm in shock right now, shaking and trying to process this. The only thing I can think of is my kids and my husband.

He said the pain may be coming from the nodules being close to the surface in the lining of the lungs under my breast bone. I still haven't told him about the rectal bleeding. It stopped and I forgot about until just now after coming here. Sheesh. Stupid chemo brain. 

Thank you guys for thinking of me and keeping me in your prayers. You know... I just *knew* it was back. I could feel it. *sigh*

Anyway, I guess I'm gonna head on over to another thread for now.... find some wonderful support for this next leg of my journey. Love, hugs and blessings!! I'm subscribed to this thread, so I'll pop in here, too. LOVE, HUGS & SCREW CANCER! xoxox