SEPTEMBER 2009 RADS

BetsyBuzz

Wow...I just noticed the dates I started this thread last year. This time last year I was stressing over the unknown "radiation treatment plan". Do you all remember? I hope everyone is all healed up and feeling good.

Titan

Glad this thread is alive again!  I missed you guys!   Yes..we are coming upon our one year annivesary from rads..though I have to admit that after chemo rads was a welcome relief..though I remember when I was getting "set up" for rads..just laying on the table crying a little..with all the big machines and disco lights it was kind of scary....!  I know some of you (Betsy..our Oregon Duck) had issues but I think for the most of us it was easy...

 Kawee..you commented on the "what ifs"..it hit home to me..because I had a lumpectomy rather than a masectomy..sometimes reading on here I wonder if I should have had one but whatever...I still have to trust in my doctors that told me that a lump was just as good...

Hope everyone is doing well..we have really come a long way from one year ago!

MTG

Crap, crap and double crap. Just as I'm hitting all sorts of 1 year marks, my Sister's gotten a lousy mammo and ultra sound and now needs 2 needle biopsies; issues in both breasts. As much as I appreciate and love you guys, this is one group I hope she doesn't get to belong to !

kawee

MTG - My sister just had the same scare.  They were very concerned considering her family history.  She had a biopsy.  Just a cyst.  I'll pray your sister will be fine.  Keep us posted.

 Titan - Good to hear from you.  I'm doing good.  Just still really tired.  Think it's taking me off Estrogen so fast like they did, so I'm doing major menopause, sweatin up a storm, fatigue a little depression.  Just dealing, knowing it will pass. 

MTG

Kawee - They're being cautious since my sister has both family history and the fact that she hasn't bothered with a mammogram for many years. Here's hoping it's just cysts as well....

kawee

MTG - What's going on with your sister?  Hope everything was okay. 

elimar86861

Hey, remember me?  Long time no read, my Sept. sisters.  Hope you are all doing well and congrats to those who have reached the one year out of Rads already.  Mine comes up next month.

I blew off seeing my Rad Onc this past May, 'cause at the time I just had TMD (too many doctors) and had about three other boob-groping OVs that month.  I was supposed to see my BS this month, but he's in Afghanistan.  Rather than see another surgeon who didn't even know me, I thought it woule be the perfect time to reacquaint with the Rad Onc.

Back in July, I had a regular x-ray done for some back pain.  So, today I got it and took it in to the RadOnc, because I SO wanted to see what the radiation did to my lungs.  Well, I guess a miracle occured because my treatment side looked exactly the same as the untreated side.  In other words, it looked totally unscathed by rads.  (Anyone with a good memory might remember that I had a small freakout about the rads hitting my lung last year.)  It was incredible to get this good news!

Thinking of Betsy, how bad she burned and how she got the fibrosis also, I want to ask this question:  Did any of you have any fibrosis/lung scarring that did not have breakdown on your outer skin as well? 

I'm very curious about this, and might just make a thread to find out.  It's my theory that if a woman's skin breaks down badly during rads, the tissues inside are also more likely to sustain damage.  I don't know, but would like to see if there is a relation.

Other than all that, I'm good.  Cancer-free til they tell me otherwise.

p.s. MTG hope your sister did o.k. with her biopsies and all is B9.

MTG

kawee, eliminar - as it turned out, that appt was just a consult, Onc didn't feel the need for her to do a biospy immediately (which is a good thing; for me, he told me to wait and they'd fit me in that day) so sister's actual biopsies are at the end of this month.

All - Do you believe it, the Sept 2010 Rads thread is well under way. We're class of 2009! Almost a whole year under our belts.

echosalvaje

Hey Girls, I've been off the BC website for months. It seemed like not always hanging out reading posts was one more way to get "my life back."  My bi-lat surgery anniversary was April. Last chemo anniversary was end of August and end of rads anniversary is end of October.

In June I got bucked off my horse (trying to get my life back) and fractured three ribs. When they did the x-ray they saw a spot on my lung. We've been watching it for the past 12 weeks. I finally had a CT scan last week and all is well. They still don't know what it is, but apparently it's not anything to worry about...WHEW!!

Hope you all continue to be getting your normal back, be well ladies, OXO, Mary

lollys

JUst checking in--nice to see all the familiar names--almost a year out of Rads for me too-- doing ok-- working etc.  do have joint pain from the Arimedex but try to keep exercising otherwise I get too stiff--my husband says by the way you are getting older too!! ( thanks dear) but guess at 62 I have to say some of the joint pain can be due to that- just thought I would blame Cancer for everything-- found out my insurance wont cover the arimedex now that there is a generic-- I dont like generic and saw it was made in India so I am not willing to change tothe generic-- will talk to my onc about it but just dont like the whole idea of generic-- anyone on the generic?? hope everyone is doing ok--just needed to check in with you all-- hugs Laura  

BetsyBuzz

Hi all,

Still dealing with lymphedema and fibrosis...but it's all very manageable. I'm going to my last PT tomorrow.

Laura- I get my drugs directly from India via a Canadian company for my fibrosis. Back in the spring all the US supplies for the drug I needed were on back order so I thought screw it. Go to Canada. They were able to get me the drug for much cheaper and its hermetically sealed. It's all part of a study on post rads fibrosis. I'm not in the study but my surgeon is treating me with the same protical. Sorry to hear you are having joint pain. On the chemo board... they say it's a common SE. It's not in your mind!

MTG- hope your sister's biospy was B9. I'm sure it brought back all those feelings again for you.

Elimar- Glad to hear your lungs showed no or little damage. In many ways I have more long lasting SE's from Rads than Chemo...It sort of sucks.

Mary - so sorry to hear about your ribs. Ouch! Did you go to the Race for the Cure.  I didn't go this year. I decided I really don't like PINK!  Thank goodness that spot was nothing to worry about.

Wishing everyone a healthy year 2! I remember this time last year I was counting down the days...remember. TG it's in the past.

kawee

Hey, everyone, it's like a reunion.  I got attached to you guys. 

Anyone's breast still sore from RADs?  Every single dr. I go to, checks my breasts everytime, I don't care if the appt is one week since my last.  It really hurts on that side when they dig there fingers into me.

Sorry about your ribs, Mary,  those really hurt.

 I am having so many hot flashes that my face is broken out from rosacea.  I've always had it a little, just redness, but now I have the redness and pimples.  The dermatologist is doing everything she can to clear it up, but it looks bad and my reunion is Oct. 23.  

Everyone sounds like they're doing pretty well (nothing serious), that's a great thing!  Nice to hear how you're all doing.

peg119

Yesterday was the one year anniversary of being done with radiation.  Yippee.  My husband and kids sent me flowers at work.  When they arrived the secretary wanted to know what the occasion was and I had no idea.  The card said Happy one year anniversary of being cancer free and then my daughter pasted that on her facebook site.  It was pretty awesome.  Great family.  I am doing pretty good since the radiation.  Occasional sharp pains in that breast that go away quickly.  Lots of joint pain from the tamoxifen though which seems to be a common problem along with weight gain.  I worked so hard a few years ago to lose 40 pounds that I am not happy about starting to gain it back.

 Glad to hear that most of you are doing okay.  Hard to believe a year has gone by.

AmyIsStrong

Peg - what lovely gestures by your loving family. How wonderful.

I know that I finished rads right around this time last year but i forget what day exactly.  Haven't given it much of a thought.

I gained 20 lbs VERY quickly when i started Tamox last Oct.  It was like I could actually feel the weight growing on me but I couldn't stop it. The onc gave me a BAD time about it.  But I felt too overwhelmed to really attack it until herceptin was done in May.  So in June I started with a trainer and work out VERY HARD 6 days/week and eat very very carefully (and very little!).  So I have lost around 15 lbs. I have burned a lot more fat and gained some muscle, so I am a lot smaller than back then, but still don't feel 'done' and happy where I am.  But i have to say it was THE ABSOLUTE HARDEST I have ever worked to lose weight and the results have been slow, which I attribute to the Tamox.

If I had known how easy the weight gain would be, I would have (tried to) monitored my intake back last fall. But I had no idea. It was really crazy and before I knew it, I was left with the damage. My goal in June was to be where I wanted to be by the end of October (this month) but I think it is going to take a bit longer.  That's ok. I am sort of gym-addicted now and am (mostly) used to my new way of eating. Sometimes it gets discouraging but mostly I'm ok.

But all in all, it is SO GOOD for it to be THIS year in stead of LAST YEAR. I am absolutely LOVING being healthy.

Amy

BetsyBuzz

Kawee- I am still sore in the rads scar area, my PT says it's fibrosis. The good thing is it doesn't hurt unless they poke at it.  I thought last Friday was going to be my last PT but NO. I was swollen again. She didn't like what my breast looked like so it's back to wearing that waffle iron day and night under my compression garments. She said no pilates or yoga. No free weights. Just walking (to open my diaphragm) and using the machines at the gym. I am to build muscle not stretch the muscle. Seems strange to me but she is the expert. I go in again on Friday. In two weeks I have an appt. with my surgeon for follow-up to the fibrosis experimental drug I'm on (trental).

It's so good that most everyone is feeling good.

Amy...you go girl!

Peg your family sounds very sweet.

Betsy

BetsyBuzz

Kawee- I asked my PT about you today. She said if you are experiencing pain it might be fibrosis from the rads. You should talk with your surgeon about PT.  Good luck.

kawee

Thanks, Betsy, that was nice of you.  It is time for my appt with the BS.  I'll talk to her about it.  My breast IS really sore when I touch it, other than that it's okay.  The Onco didn't seem to be concerned, but i will definitely ask my BS.

I had PT after my surgery for my arm stiffness.  They messed it up so bad, it swelled up under my arm and got full of fluid, I had to have an ultrasound.  It showed nothing.  I finally quit going to PT and just waited.  Finally all the fluid went away and I was told they over stretched it.  Now I remember you saying not to stretch.  Anyway, wasn't a good experience.

I'm going to have to read up on fibrosis for symptoms, etc.  Thanks for thinking of me.

Karen 

BetsyBuzz

Mtg- Thinking of you, how are things going with your sister?

Kawee - It's somewhat painful when they massage the areas of fibrosis but if it hurts too much I let my PT know and she backs off.  After she is done my shoulder unfreezes and my breast feels better. It's quite amazing. It's more towards my back under arm area than my breast. My PT says it's very common to get radiation fibrosis there. As long as I keep up on my manual lymph drainage it doesn't seem to bother me much. TG. I see my BS and Onc next week, it will be interesting to see what they say.

MTG

Betsy - Going with her tomorrow for an MRI since the mucinous part of her cancer tends to be multifocal and so they are concerned that other tumors are hiding. Met one onc -a "my way or the hightway" type -who insisted that she have chemo and would not even consider permitting cold caps so we're looking for a second opinion (at least if it's really just 1 small tumor, even if it's Her2 +++). Then she's got pet and bone scans as well as a MUGA, this week and next. If they find anyother spots, she'll have additional biopsies. The real bitch of it is that a best case scenario is she'll have to have a lumpectomy, radiation, and a year of Herceptin as well an an AI. Makes my bc look like a breeze......

Simultanously, my Dad is in the hospital after a fall last week and even though nothing was broken he now cant walk at all and has bad bouts of dementia ...Plus while I was in NJ dealing with family stuff, my kitchen flooded with kitchen sewage (not as bad as bathrooms but still toxic), didn't discover it until yesterday so today they cleaned and threw out all small appliances, pots, pans, plus lots of food and dishes, literally, everything on my counters and in my lower cabinets and dishwaher; tommorrow they rip out my sink, dishwasher and all lower cabinets.

I mean really !!! Who did I and my family piss off ? If I weren't living it, I'b be convinced this is a bad dream or being made up !!!!

AmyIsStrong

MTG - what an awful story of how life has been for you lately. I hope all the bad stuff is behind you now. You deserve some peace and calm!  Re your sister - please invite her to the TCH  thread (taxotere, carboplatin & herceptin) if that is what her tx will be.  It is a very active board with women in all stages of treatment (as opposed to this one, where we all went through it at the same time). There are women who have been done and stick around to help, and lots of new women starting treatment all the time. Yes, it will be more than you had to go through, BUT it is definitely doable (hey, if I could do it....). And the ONLY important thing is to get better and stay better- whatever it takes.  If you have any specific questions, or if she does, feel free to PM me. But that board will really help also - please check it out.

Titan

MTG..sorry for all the crap you are going through...I'm sure you feel overwhelmed..just try to take it easy OK??? Easier said than done but you need to take care of MTG....alright?

I blew off the rad onc also for my appt. in Nov...had 3 appts in one day..onc, bs, rad onc...decided to dump the rad onc...the onc and the bs say my breast looks fine.. I will get felt up twice in one day...I think that is enough..getting felt up twice in one day is enough! 

kawee

MTG, had no idea about your sister.  Last I heard, they were just watching, didn't feel need for biopsy right away.  So sorry.  My gosh, and all the other "stuff".

 Hang in there, and remember we're all with you and here for you.

BETSY, glad to know you're coping well with the fibrosis.  You're a tough lady with a great attitude!

TITAN, not going to rad onco anymore either.  Enough is enough!!

MTG

All - Thanks for the support . In a somewhat wierd way,, you guys are also family and it helps getting the extra support.

Amy - Thanks especially for the offer of answering questions. For now at least, I'm the one researching things; my sister is still digesting the news and taking things one step at a time. Besides, she's not a big computer person. If she does have to have chemo, I'll check out the TCH thread. I've also learned about a herceptin support site which I've techinically joined but find a bit confusing but will figure out sooner rather than later.

BetsyBuzz

MTG - Sorry I haven't written sooner we had an Internet connection problem which is now resolved. I hope you take Amy up on her offer. She will be a great resource for your sister.

Back when I was first diagnosed my BS had be go through a BSGI ( Breast Specific Gamma Imaging) test prior to my surgery to make sure I didn't have any hidden cancer in my healthy breast. The test itself was pretty cool to watch. It was like a reverse x-ray.  They put radioactive dye in you and then you sit with your boob on a piece of film. The screen blacked out where cancer was and lit up on all the healthy tissue. It is a test they typically give for heart procedures and was designed for men. They found, accidentally, that it also was a really good diagnostic tool for BC.  A few women they gave it to had undiagnosed BC along with their heart condition. My BS was doing a study at the time on the use of this procedure in ruling out secondary cancers in the breast. I think that's why I got into her practice, which was a blessing.

Sorry to hear about your Dad and kitchen. Sometimes when it rains it pours. You can come here and unload anytime. Hang in there girl!

peg119

I was just wondering if anyone else who finished rads about a year ago was experiencing any pain.  I had a lumpectomy twice on my left breast and then 6 weeks of radiation.  About 4 to 5 months ago I had a very sharp pain at breast level on the right side of my chest.  It lasted about 1 to 2 minutes.  It happened once or twice again in the few months after that.  It has happened about 3 times in the last two weeks.  It is managable, goes away quickly and doesn't seem to be associated with anything else.  It will stop me in my tracks though.  I asked my rad/onc about it this week and she didn't really know what was happening but said she heard that a lot from people that were 12  to 18 months post treatment, rather it was surgery, rads or both.  Everything else sounded normal to her and she said not to worry but that I may want to see my surgeon if it got worst.  I haven't had to see my surgeon since I had my post-op check-yp.

dsgirl

peg19

I can relate, started rads in Sept and finished in Nov '09. I get the same shooting pains at the side, and in the armpit, however my tumor was way out to the side and top of the breast tissue.

I just went to see my surgeon for breast exam on tuesday and she orders the diagnostic mammo too,

I asked about the pains, she said varies from patient to patient, but it seems to be normal, even up to 2 years, on rare occasion it never stops. Told me to keep stretching and excersise the arm. My surgery was end of July '09, the lymphnodes were removed via the same incision as  the tumor. My Radiologist says the pains are from breast from surgery, and my surgeon blames it on Rads, so I think your rad/onc hit it right on the nail. I no longer see the Radiologist. Just the surgeon and the onc. The surgeon said she will see me for 5 years, she's very thorough with her exams, I like her alot, am treated like a friend. All she does is breast surgery, so she has alot of experience. By Dec. 09 the rad onc said that since I was so well taken care of, no need for him to see me too, unless a rad related problem popped up. One less doctor visit.I was happy with that.

Here's wishing your shooting pains will soon be a thing of the past..

dsgirl

MTG

Hey...some good news. Even though my sister's 1st test showed Her 2  positive, +++,  the Fish test on her actual tumor shows Her 2 NEGATIVE.  Hooray !!!!!

kawee

PEG - Not only do I have shooting pains, but my breast is still really sore.  Have trouble sleeping on it sometimes, and when I wake up in the morning it's sore.  When they (every single dr. I go to) examine it, it hurts like H@#$.  They all say it's normal, and it's from the Rad and lots of women have it and like dsgirl says it can last for years.

MTG - Glad to hear the good news!!

BetsyBuzz

Hi all,

MTG - Hooray! I am so happy for you and your sister.

I have just been refered to an LAc (license acupuncturist) as my  truncal LE is still bothering me. I also am still dealing with the fibrosis rads caused. That's as painful as the LE. My PT says I need to have my lymph channels opened...we'll see. Plus she thinks I'm too stressed, I'm ok with getting help on that front too. So...I'm exploring all options. Hope it will work. Frankly I'm pretty tired of dealing with everything...but I am thankful to be alive and know it could be worse.  So I'm happy and grateful that life is what it is. Sending out a Happy Thanksgiving to all of my sistas, I hope everyone is doing well.

Betsy

kawee

My Onco wanted me to see an endocrinologist.  The endo, after one tests says my adrenals aren't working correctly.  Have another test on Dec. 13 to be sure.  I've just been tired, shaky, irritable, achy, blood sugar falls, etc.  He took me off the prednisone and put me on hydrocortisone to replace the cortisol I'm lacking and I'm feeling better.  Says it could be from taking prednisone for Lupus for a long time has shut my adrenals down, plus all the stress from bc and yanking me off estrogren with no weaning.

Anyway, me too, BETSY.  Grateful for all I have, BUT I NEED ESTROGEN!!!!!!!!