After Radiation
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Really odd that all our diagnosis is mostly the same, but follow up mamograms are not the same, must have something to do with cost and insurance???
Susan, sounds like I better get this left arm more active, it is sore and the joint hurts when I lift it a certain way. I will bring it up to my MO today at my three month check up. I don't want it to freeze up, sorry for your neighbor. I don't have lymphadema, no swelling, but hope to avoid it.
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stage1 - My mammo came 7 months after rads - would have been time for my annual anyway and my MO wanted me to have it done be for I saw him for a followup. My MO is the one who does the scheduling. He thinks once a year is good enough. Now that I have a cancer dx - I am able to have more than one a year and my insurance will pay for it.
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Ok...Im starting off pissed off....I dont like the difference in the followup tx.after rads.I bet Stage1 is right.its all about the $$$$$$$$$.I dont like the idea that one of the sistas is goin for a mammo 1 month after rads....I dont like that at all.Sweetcorn right....IMO i think that is way too soon.I hope someone here can back me up on this but me no like this.
for all the newbees i havnt had much time with you gals but i just wanted to say I have a big mouth and i try to tell it like it is...BUT the rest of the sistas have more tact.This is a great bunch and we are here 24/7.
To answer a few questions first movement is the key to life...even after surgery and during rads unless told otherwise.2- My rads breast was huge.hard and swollen and after 7 mos.its still bigger.
Its gonna be rainin here all weekend so im gonna try to be on the boards a little more.Thanks to JO JO and Shery and Tori who were with me from the beg.(sorry if i forgot anyoone) thanks for helping makin this thread what it is....
Im gonna sign off PARABINS.....ha.If anyone wants to know what that means its the reason I started the thread.The joke is on ME....huggggs my sistas and God bless K
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Hey granny I always love it when you get hot under the collar. But I had a tube of Calgon lotion and would you know when I read the label it does not have any parabens. They don't advertise no parabens but I could not find them in the label and they have some nice fragrances.
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HEY----WE REACHED OVER TWOTHOUSAND REPLYS.....YAY....Makes me feel sooo good.sistas helpin sistas.xoxoxoxoK0
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wELL SHERRY-I GOT ONE FOR YOU....I was at my friends house and i got a bug bite on my leg and it as sooo itchy..she came out with aveno anti itch cream...guess what????it had parabins in it...and when i got home i looked at the one i had.forgot the name of it because it too had parabins in it...WTH...hello...so i marched down to the healthfood store and i ranted to him.his shelf was full of anti itch creams all with PARABINS in it...his answer to me was THEY ARE LEARNING.GIVE THEM TIME...0
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sherryc - I had MX and rads, the PS said that if I wanted reconstruction the only kind I could have is TRAM, he said absolutely no implants. Glad I wasn't planning on recon.
stage1 - I have a lot of pain and weakness in MX shoulder, the PT explained that because of the MX w/node dissection + radiation, as well as chemo, that there is scar tissue that has impinged some nerves, when that happens the nerves don't send the appropriate signals to the muscles and they muscles atrophy. So, bottom line, everything added together has caused multiple issues in my shoulder, he gave me strengthening and ROM exercises to do, only to the extent that they don't exacerbate my LE, they have given me greater ROM and strength, but have not helped the pain when I use that arm at all. PT felt that it may never improve.
Sometimes I think that BC is the gift that just keeps on giving.
grannydukes - Isn't it a pain to read all the labels, I'm trying to find naturaly creams, makeup, lotions, shampoos, conditioners, soaps, ..... It's a real pain, and expensive. It's funny the stuff that "seems like" it should by full of only good ingredients, like Aveeno, isn't. I have found that sometimes the items that are store name actually have better ingredients than the fancy ones.
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Yes Linda it is a pain but i refuse to use anything with PARABINS in it.I did find shampoo and conditioner....and yes its like double the price but keep reading...its well worth it.another thing that has parabins in it is vicks vapor rub...mentholparabins.scary what they want you to put on your body...even baby lotion by Johnson has sterates(sp) that shit is also a no no.....and the only soap the RO told me to use is Dove for sensitive skin and Toms of Maine deoderant....
Yes as JO JO says THE GIFT THAT KEEPS ON GIVIN....She is still lookin for the return line.ha.so am I.....
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All right, what is up with Parabins? I'm guessing this is an ingrediant in lotions, make up, etc. that can cause cancer.
I seen the RO today and asked him all my questions. He had the blow me off attitude that he usually has, which just sends me into a pissed off dimension of unknown propotions! Any way, he said that my breast is smaller because of the surgery, there was swelling after and now that swelling is gone so this is what I have left. The Rads will make it swell again, then shrink even more! So, I could have reconstruction done 2-3 years later!!! Maybe I'm just very vain, but this upsets me soooo much! If I had know this I would have opted for the DMX with no Rads and would have been done with all of this and avoided the SEs of Rad. Hopefully, I will do better with this new knowledge over the weekend, after it settles in. But, right know I'm sooooooooo angry with what the Dr.s do and don't tell you, this whole BC diagnosis, and that there just isn't anything my poor husband can say or do to make this better, or anyone else. I know I have to suck it up, but when does the anger pass?
Oh, I have only met my MO during a meet and greet so far, no office appt. yet. But, when I did see her, she mentioned doing Evista after Rads. Everything I have read on Evista says its for post menopause. I'm 42, so wouldn't you think it should be Tamox? So I haven't started any of that yet.
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Granny - Where in the h$$l have you been girlfriend? Love it when you come out swinging. You gotta cool down and stop stressing so much - I keep tellin you that. But you know I still love ya anyway.
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Thanks ladies for responding to my question concerning the time period between rads and mammos.
Well, the reason I asked is I had my radiology check up last week and it was her comments that promted me to ask you all.
Going back to my first mammo after rads; no one told me how soon I was supposed to have a mammo following rads. I did ask at my breast clinic and I said that I have a routine mammo and is it still ok to have my mammo as I will be just out of rads. Oh yes, was the response. Ok, so I left my breasts in their hands, so to speak. So I had my mammo 7 weeks after rads. When I went for my r.o. check up. I said "guess what doctor, I just had my mammo and everything is nice and clean." Well, she looked really alarmed and in my words "freaked out" at the mention of a mammo so soon after rads. The look on her face really scared me, and when I joined bco.org and paid attention to gals reporting their mammos after rads, and chatted with women in the crowded waiting rooms for mammos and other check ups relating to b.c. checkups, I learned that 6 months seems to be typical of the period between rads and first mammo.
This week, when I went to my r.o. doc. I mentioned that I did a bit of research with many women on bco and in our crowded waiting rooms (oops, okay, I will have to digress here a moment,........in Canada, our waiting rooms are crowded while it seems in the U.S. your waiting rooms are sparse of people..I spend 6 months between Canada and the U.S. and a few years ago I broke a bone in my foot, and when i went to the clinic to have xrays etc. there was only one person in the waiting room as well as myself...the first thing out of my mouth was.....where is everybody!!! So that is the difference between the U.s. and Canada............... I noticed one of the gals on another thread, mentioned that her relatives live in Canada and they talk about the long waits for treatment....I would like to clarify her statement and say, yes, we have long long waiting periods for treatment, but when it is urgent, boy, you are at the top of the line. When I was dx. I waited only 2 weeks, whereas I have two friends with whom I play golf and they waited 12 months for a hip operation and had to live on pain killers for that period of time).
Ok,,,,so when I saw my r.o. I mentioned doing my research with other women, and the first thing out of her mouth was.....(I am sure you are already guessing what she said)......don't talk to other women they know nothing.
Shit, shit, shit. as Gd might say....of course I laughed, what else can you say when your doc says something like that...and then I reminded her that she was alarmed when I told her that I had my mammo so soon after rads. She replied, "I doubt that I was alarmed. Don't listen to other women...they k now nothing", she repeated.
My final question to her was...what is the prognosis for someone who has had an early mammo so soon after rads. Her reply was "there is no difference to prognosis...mammos have so little radiation compared to breast radiation.
Thanks everyone for responding!
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Been waitin for you JO JO...thinkin about you a lot but been quite busy.Ill be home this weekend soo i will try to catch up with all of you...Thanks to you and Sherry for holdin up the forte....You know how all this shit with these damn white coats and the pinktober gets me pissed of..shall i tell you how i really feel???????well im gonna tell ya anyway.
WHERE IS THE DAMN $$$$$$$$$.Again all the bullshit about raisin all this $$$$ for research and we get a lousy 2%.where is the $$$$$$$$in lots of peoples pocket.
Next---there was a poll on her about the mammos after the rads....nothing matches.WTF.And they are gonna try to find a cure.These damn white coats cannot even get some kind of PROTOCOL on a lousy mammo after rads.......Im swing all right..
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Granny - For the love of God,woud you just calm down? There are no good answers and until there are we just need to continue educating and taking care of ourselves. Please, you are raising your blood pressure over something we have no control over. We do know every doctor does things differently - there really is no rhyme or reason to it. Yes, October is coming up and there is not a damn thing you or I can do about it. I, for one don't mind it - in fact, I am going to spray my hair pink the entire month - I may even take a picture and change my avatar. Don't get mad at me - it is just me being me.
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I love reading the animated posts of many of the ladies here at bco. Grannydukes, is one such lady. Gd....you always make me smile. Another lady that I loved reading about is SV on the older ladies thread or...women with more sense. But now SV only posts on facebook, so I never get to know how she is doing or enjoy her posts about life as she sees it. Another gal I like to read about is Isabella on that same thread. Isabella has got to write a book one day...her life as she posts is like reading a James Herriott novel. So these are a few of my favourite posters that I click onto when i have the time.
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Isten up sistas i think i need some help here...what pissed me off most is the mammo after 1 month after rads.Are you kidding me.....think about that all you old timers who did rads months and months ago.remember how you all felt 1 month after rads.Im sure the majority of all of you would not want a mammo them and i would not do it either and make plenty of noise about it too.
JO JO---why the hell dont you buy a pink wig????? .they may give that lousy 2% for research!!!!!!
BTW i love HOT PINK.You will never ever catch me in anything pink in pinktober!!!!!!It really is overkill bullshit and the poor people think when they buy stuff that has the pink ribbon it reall is helpin us.....its not!!!!!
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Talk about being PO'd
I just got back from my MO three month check. All is good with the appointment, my BP is better than ever when I was there. He said he was ordering a mamogram as it has been 6 mo since surgery. (different from what he had said previously, he had said yearly would be in February) OK, so I go directly to radiology, the order was on the computer, but the young lady at the desk said I would have to wait to be phoned for the appointment. ( This is a walk in mamogram facility). OK, she said a few things like, "you have just had a mamogram", she said "this is routine mamogram" ( I wanted the mamogram at this facility, because I wanted digital, not analog.) She made some comments that my surgeon was wrong to say the other faciity did not have digital. She said my MO did not know the protocol. She was pissin' me off, but you know when faced with a little ***** ya can't think fast enough to tell her nothing is "routine" when you have BC. Who is this little (she looked 12) to undermine what the doctor says???I think my BP is up now
Time to cry, and I have only cried like four times since April surgery. Trying to keep control...0 -
stormy-I am small breasted and I swelled after surgery then it started going down and with rads it swelled again. It has finally gotten to where it was before rads. My BS did not tell me that if I had a MX I would not have to have rads. I found that out 1/2 way through rads and was pissed as by that time already started having problems. So now that rads is over I have permanant nerve damage and will be having a BMX anyway. What a waste of my time rads was.
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Walley- I didn't have nerve damage but had rib pain until about July...now, if I am tired, it uhurts and I cannot wait to tear off my bra, whatever kind i happen to be wearing at the time...but th etenderness passed....time was/is the answer...and I also went to a physio who specializes in breast cancer and got exercizes to do as well..and massage...it all helps.
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Ok, I'm pissed......................just got an email from a woman I use to work with, this is how it began....................I just heard you had a bout with breast cancer............I didn't know............ok, ok, ok, ok, are you f/n ready for this .............................her next sentence was...............THANK GOD YOU WERE ONE OF THE 'LUCKY ONES', AND IT IS BEHIND YOU'.............................ok, is she an asshole or what...........................exactly what I wanted to hear ..............................
Here was my answer back to her.......................................Hi Betsy, thanks for your email, however, I must show you the difference of how we look at "LUCKY"....................losing 50lbs when your 180...........damn that's lucky............winning at the track on a 20 to 1 horse..............now that's friggin lucky.....................winning the Powerball, one, week, and the Mega Million the following week.................now that's just about as lucky as 1 asshole can get................
Who in their right stinking mind, would call someone "lucky" who has cancer....................Your use to be friend.............................Ducky
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had a mammo on lumpectomy side 2 months after radiation completed - just last thursday....
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sandeeonherown
Thanks for the info.My RO finally called me back....2 days later.:( She said if I still have the pain on Tuesday she will take an x-ray.I am the same way with my bra because it sits right on that area.I will ask her about massage therapy.Thank you ladies for your help.Have a great weekend!
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stage1, that's terrible. People who have never had cancer just don't get it. Like duckyb1's friend saying she's one of the lucky ones and it's behind her. People don't understand that it's never really "behind" you. The impact of being told you have cancer may lessen over time, but it will never be gone. I try not to get upset with those who say things that make light of it, or say I'm lucky my tumor was caught early, things like that. They can't know how it effects you. At least that's what I tell myself. Bottom line, cancer changes you, physically and mentally. I only consider myself lucky that I have good doctors, access to modern medicine, and that I have support from family, friends, and all of you wonderful ladies here. There.....that's the end of my speech. Hope it wasn't too offensive to anyone! {{{HUGS}}} to all, and have a good weekend.
Sandi
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Thanks for the assurance, Sandi, that I am not the only one that take offense to these attitudes. I held it in that time, but I should have at least given her grief. I was "polite". I make myself angry when I hold things in, that is why I appreciate this site. You understand. Ducky1, let's be ready for the next ***** who thinks it's nothing.
Welcome, newbies, this is a wonderful site to learn and to offer help and get help when needed
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Thanks girls for the reassurance that I'm not an over sensitive baby. I have to go spend the weekend with friends. One sent me a card saying glad it was all over with, then e-mailed me to tell me she was glad the doctor drama was over. Another just tells me to be positive all the time. I just grit my teeth, smile and tell myself that they really mean well, but they just have no clue what the truth is about breast cancer. So much for all that awareness out there.
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oh, and they tell me how lucky I am to have this 1 inch of tight curly hair. I know they would never be seen in though.
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Ducky - With friends like that, who needs enemies???? Really. I can't believe someone could be so heartless. You need to drag her "lucky" ass to the bonfire and throw her in.
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Sherryc, Thank you for your post in regards to my rant. If I'd have only known. I not quite 1/2 way through Rads, but do have SEs, some chest pain, just now turning pink, and a little tired. I guess I'm going to finish, but to be really honest, I'm not that comfortable with that decision. I know we should stay positive and I really am a positive person. The day I got my biopsy results, I had my husband come with me because I just knew it. No symptoms, no lumps, I just had a bad feeling. I have not been able to shake that. However, I will go through the Rads and then move on to hormone therapy. I guess I can't keep worrying about it, it is just one phase at a time.
My heart goes out to you and I'm sending you a (((Hugs)))! I have learned that when ever I get pissed because of something they didn't tell me, it usually takes me 2-3 days to except it and climb back on this BC horse.
Everyone, That is the worst when people tell you "your so lucky" I've been told that way too much. The last time my co-worker said it to me, I told her nicely that luck has nothing to do with this, I know you mean well by saying this, but please don't. You don't understand how this effects your life and I pray that you never do. Now, she will ask me how things are going with treatment and if there is anything she can do. Much better.
As far as the month of October and pink goes. No I will not be wearing pink. I appreciate the awareness efforts because it does raise awareness and more women are going for mammos and more are being diagnosed early, which in turn does save lives! I also understand that a lot of the pink ribbon items don't go to BC and that is a huge shame. However, the ones that do, at least 2% is better than nothing. I know from my own experience, and this may be wrong, but its the truth. I am more likely to buy an item that catches my eye and think that proceeds are going for something good than I am to sit down a write a check out to the American Cancer Foundation. Now, however, my awareness has been changed due to my diagnoses, and when I recover financially from BC, you bet I will be sitting down and writing a few checks out every year! I have also suggested to family and friends that offer to do something for me, but there really isn't any thing they can do, to please make a cash donation to cancer research and/or treatment. I know a few of them have done so.
Back to me not wearing pink, its because that is too in your face. I don't need in my face, I'm living it. However, it does not bother me to see others wearing it, I'm thankful they do so. Those are the ones that are more likely to go have their mammogram!
Hugs to all, we may have our ups and downs, but we will all come out of this learning a great deal about an awful disease and hopefully be more sympathetic to others in regards to all problems.
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Stormy, Hang in there with the rads, I didn't want to do it, but finally made the decision on the fact that I was grade 3. Scary, because we don't know a lot about radiation. I finished more than two months ago, and I am feeling good. I did go thru burn and peel and a little nerve pain, but now, I am left with a little itching, not knowing if that is from rads or the arimidex pills. Still fatigue, rough throat, but of course the MO says that is not an SE.
About parabens, I think someone asked...they are presevatives in most cosmetics, including shampoo and it doesn't matter how expensive or cheap, read the labels. Check it out on www.ewg.org to see if your products are safe.
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One year ago today, I had my first chemo infusion...
With everything that is in me, I'd love to say, "Time flies when you are having fun", but because I cannot do that one, I will say,
"What a difference a year can make!"
The English language does not even have the words to express to you how thankful I am to have met you ladies...thank you for offering me support, praying for me and cheering me on when I needed it. I am humbled by each and everyone of you...
God bless us and grant us many, many, many more healthy years ahead of us...
Tori
DE COLORES!
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Tori - This website is a blessing. We are all thankful for the love, support and friends we have made. You are a very special lady and I am so honored to be able to call you my friend
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