CALLING ALL STAGE I SISTERS
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raincitygirl............I have and always will believe that you have to be your own advocate...I have had way too much practice......my mother died of colon cancer.......my father from esophogeal cancer, and my husband pancreatic cancer, so I have had plenty of experience.........Each time i got better at what I did............When someone you love has a disease that is threatening to take them from you, you fight with everything you have for them................My kids say to me "God Mom, your tough, but I have learned one thing through all of this horror..............The weak become the "victim"......I even challange the insurance companies when i don't like something they do..........My feeling about all of this is.......Fool me once, shame on you......Fool me twice, shame on me..................With each diagnosis my loved ones received I got just a little tougher Now it is my turn.................Thank God my 6 children watched and learned something............Never stop asking,..........what.........when.........why.............and if you still don't get it.....................ask until you do......................If the person gets annoyed...............get another Doctor................Its your body......................
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JO - me too, I should have said the same
Maybe we don't have a normal anymore. duckyb1 - I also have been through quite a bit and I fight like the dickens when need be. My husband and kids also call me tough. But I can see that I have made my kids strong self-advocates as well. I remember when his wife told me that he told her that it was ridiculous that she was unable to return something, that she needed to spend some time with me. That was a compliment, right?
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duckyb1 - I couldn't agree more with what you said. If we don't advocate for ourselves then who will? We have to insist on getting ALL the information up front in order to make good choices and decisions even if it means getting another Doctor. Yea for you!
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ducky - i hope i grow up to be just like you - i only have a few years to go. DH has been through a few major surgeries & i've learned to keep my eyes open at all times. he had triple-a surgery a year-&-a-half ago & although the surgery itself went well, the care he got after coming out of the recovery room was horrendous. i spent the 1st night at the hospital. i visited him often & the 3rd day i found him sitting in a chair with his head down & barely able to whisper. he had a line in & a button to push for pain meds - the tubing had come apart & the morphine was running down his left shoulder. i had a hard time making the nurse understand what was wrong until she touched his shoulder & found it wet - then she was congratulating herself for finding the problem. i asked her to give him some pain meds & if you can imagine - she said he couldn't have another dose yet because it was metered!!!!! i was on the phone immediately to his surgeon & our PCP & he received pain meds then. the next night i got a call from him around 9:30 pm asking me to come get him because they weren't listening to him. i called the nurses station & they said he was fine & nothing was wrong. i walked in the door a few minutes after 10:00 pm & the nurses were all over me not to disturb him since it was after visiting hours. i ignored them & went in to see DH. he was having a bad reaction to the pain pills (he was off the morphine line by then) & was having a panic attack. again i called his docs which sure got the nurses attention. i stayed until he was finally calm. he even apoligized to the nurses!!!! i certainly didn't. you have to be an advocate & stay alert.
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ducky...Welcome to our sisterhood.
Your sense of humor is priceless.
(((mostlymom)))
(((Hugs To all my sisters)))
I'm not posting as often as I want too because of family health crisis.
But I decided if i don't take care of myself who will!!
So i have to change some things to be able to breath and have more time/
Right ????????????????
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Ducky- you are an inspiration. period!!! (and definitely bring the tape recorder..helps to clarify thing slater when the fog wears off)
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Jo...Could you tell me one more time...How many days to the happy day? 0
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Sheila - 5 days but I am not counting. Okay! Yes I am. Sunday at 4:00pm the ship will set sail and be heading toward Jamaica.
I will miss everyone while I am gone. Will be on here a few more nights.
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Jo - How wonderful to have that to look forward to - may you have a wonderful trip.
Sheila - We understand that you have a lot to deal with right now, but we do miss and think of you. And yes, you need to take care of yourself and BBB
Mostly Mom - I also live in WA and so did ducky for a short time. Maybe there's something in the water here...
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raincitygirl - Thanks so much. I so need to get out of here and forget work and bc even if it is for a week.
Sheila - So sorry you are having to deal with family issues - please remember to take care of yourself.
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gonna miss you jojo but so happy for you my friend...:) what a birthday treat:)
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I am going to miss all you wonderful ladies. I have learned so much from everyone. My gosh! The love and support - Whew! I don't have enough words to express my deepest gratitude. I will be back Easter Sunday and will post a picture or two.
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Hi ladies,
I lost 2 friends last year to other cancers, have friends right now with bad cancers and outcomes, and it is hard to face their pain when I consider my stage 1. The false and unneccessary guilt is trying. I think that us folks with stage 1 feel a profound duty to help others with worse diagnosis', and yet, we know that our lives could easily flip. It is a strange place in the Universe to maneuver.
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In case I forget, Jo, have a wonderful time on your vaca. Wiggle your toes in the sand for me! I'll miss you, too, but I know you really need the get-away time.
Sheila ~ Miss you & think of you often, dear sister/friend. ♥♥ Prayers for your Father.
ducky ~ I so agree with >mostlymom<, I wanna grow up to be just like you!
Hi rain !
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Hi Valjean
Good to bump into you here. How have you been?0 -
{{{SHEILA}}} I have you and your father in my prayers. (((JO))) you lucky thing you!
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CrazyKitties - You said it so well. I try my very best to help others. I feel soo damn lucky but also know things could make a turn.....
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Good Morning Ladies..............Headed off to the R/O in about 45 minutes........So many questions......Want to do the right thing, but do not want to make myself miserable, just to feel better............
I am they type who goes to all my grandchildren's games, whether it is football 5 hours away, baseball around the corner, volleyball, running track, and I go because I love it, and they love me being there............I have 2 grandsons who play football for Franklin and Marshall college, fantastic players, and now I drive 1 1/2 hours every saturday to watch them....It use to be Pittsburgh every saturday to see another grandson who quarterbacked his team (Carnagie Mellon University) to the championship........I even go and sit while my 12 year old grandson is at the Driving Range to watch him hit..............I want to continue all these things, so you can see why I don't want to beat the hell out of myself..........Living is only living, when you have a quality of life............Its not sitting around and watching the world go by.............I'm 76, can I handle this crap, can the body take the abuse.................Well I guess I 'm about to find out aren't I.
I don't want recurrance, I want to live like every woman on this thread, but I want to LIVE, not EXIST.
I will see what the R/O says today (a woman) and then make a decision based on her, and the M/O who said "usually people your age we don't always give radiation considering your pathology, and the type of cancer you have.
On the other hand is she saying "hey lady, at your age how many more years could you have, so why bother doing anything"...................I want to believe they don't suggest what they believe, but what they believe is best for you.............I'm not a "doubting Thomas".............but hold on a second............Can I put my fingers in your side, just to be sure you are who you say you are...............hahahahahahahaha................Later ladies
I'm
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duckyb1: Don't know what your MO was thinking about when she said "your type of cancer". We have BC, radiation is part of the therapy for almost everyone I would imagine. I'm 68 and my BS, MO and RO never even suggested not having the treatment, it was assumed I would by all three. I asked why, and they indicated it always followed a lumpectomy and axillary dis.
Good luck, ducky, we will be thinking of you and knowing you, you will not allow them to dictate to you so I know you will bombard them with questions and so you should.
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Duckyb, You will be in my thoughts today, may you get good information to make an informed decision.
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Ducky here is a link on BCO regarding radiaiton in older women. It might help you along with talking to the RO. http://www.breastcancer.org/treatment/radiation/new_research/20100521b.jsp
Here is one from cancer.gov as well http://www.cancer.gov/clinicaltrials/results/radiation-older-patients0610
I also want to grow up to be like you. I love your spunk!!!!
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Sherryc, thanks for that info.............I have seen this information before, and that is what made me think twice about radiation.............the number of women was rather small that they put into this trial..study...................However, it still is an eye opener...........I have already been to the R/O, and will post a little later as to what we discussed, and trust me, it was discussed............That article is certainly interesting, and we did bring this case scenario up to her when we spoke.........Drove her nuts, but she was great and very receptive to all our questions.
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Ducky-good for you armed with all your questions. I know you will do what is right for you.
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Hi Ladies............"she's back".......................Was gonna hold off doing this post till later, but I have about 45 minutes till I go to my daughters to get my grandson off the bus, and then wait for his sister to get off her bus, and then wait again for their father to come home from work.....Gotta love those little munchkins"
Ok here goes.............Let me first say this......My R/O is from Fox Chase Cancer Center in Phila.......She also practices at University of Penn, Phila..................You might remember I said in another post that the M/O said on my visit to her last week, that she though I might not need radiation because of the small tumor, no node involvement, and referred to the study saying "women over 70 might forgo radiation because the result %'s were not that great with radiation..........Ok, well I went armed with all information, plus what the M/O infered when I had seen her..............here is what she said
Yes, my tumor was small, yes there was no node involvement.........yes I am 76.......so I fall into that group of "is radiation necessary"..............Needless to say she was not happy with the M/O expressing her opinion about Rads, when that is not her expertese...............and she as her "Boss" will speak to her about that...............ok, now this was her theory........................she said the M/O might not have been looking at your margins............................Even though I had 2cm margins most of the way around the tumor, there was a small area where they could only get 1.2-1.5 cm.............that was the area she is not happy with..............Reason............even though 1cm margin is acceptable nationwide she believes that is not enough of a margin to be able to say "no rads".................................In the case of no radiation with that margin(1.2-1.5 in her opionin would be taking a chance...........She said .........."when I agreed with the BS to accept those margins, and not to go back in for excision...........I said that with the agreement that you would be doing Radiation.................Now if you refuse radiation, I am not happy with the margin being 1.2-1.5 in that small area................................So I asked................well how about if we go back in and try for a better margin in that one area, and not do Rads................she said "I think the area where the smaller margins are is very close to the nipple where there is a blood supply and he would have to be very careful when he does the excision.......................So with all that in mind, she did make a lot of sense because..............................When I first got the newsof the margins my BS said the R/O was not real happy with that area where I only got 1.2-1.5 even though 1cm is acceptable............I said "oh really".............he did not elaborate it that since we were going to meet in a couple days......................However a couple days later he said the R/O is "onboard" with not going back in for better margins...............I thought that odd, but never questioned why she changed her mind............................Now I know why......................she was under the impression that I was getting radiation (which at the time I agreed to), so radiation would take care of the small margin area that she was not happy with, and she ;felt safe with not going back in........................
So now that I see her reasoning..............and she was very thorough, and another thing I found out. She is the "boss" there, cause she is the Fox Chase Person who makes almost all of the decisions, and she is the one everyone meets with 1 time a week, and the one who everyone trusts and respects for her brilliance in the fight against BC. One of the radiation people said to me.......she loses sleep over any patient who she thinks makes a wrong decision (in her opinion) about their treatment plan..
So Ladies.................welcome me to the "Radiation Club".........I had my CT-Scan..........I had my mapping.............and damn this 76 year old broad has some "tatoo's"....yowza, yowza. And to think I bitch-d when a couple of my grandsons got "tatoos", hey now I'm one of the boys............I go back next week, and looks like I'm on my way to this Duck's As- being cooked.............And how would you like yours, rare, medium or well done..................and would you like that served with or without Aloe Vera Gel............hugs ya all.
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Hi Im Vicki!! Im going through rads now!! Yes you get burnt . I am working through all this mess. Ive gone through chemo n now rads!! I am 48. Doing 61/2 weeks of rads.Im in my 6th week. It does not compare to chemo. My office gives me Aquaphor for burn. It hasnt been to bad. Im just starting to burn, and have 7 left!! You can do it!! If I can!! Be strong!!! Like im sure you are!! The fights almost over!!!!! xxoo Vicki I will be done next week.
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duckyb, most women I know on here have had the same reluctance to get rads, even if they are younger. I always post about rads being a "clean-up" operation, for the reason you found out about the margins and also if you had any kind of needle biopsy. No one knows for 100% that the tumor cells were not dislodged during surgery or biopsy and are ready to circulate to a new home in your organs. I realize the liklihood of that is low, but there are Stage 1, Grade 1, "clear node" women that DO find themselves with mets, so those cells came from somewhere.
The thing about rads is, the better your overall health, the better you can withstand yet another onslaught to your body. You sound like you have energy to burn, girl, so you may not get too fatigued at all. Remember to get a lot of protein in your diet during the rads time (even having those drinks, like Ensure) because it helps the good tissue repair itself from the rads damage.
Also, you seem like the type person who would want to know how much collateral damage your lung is going to get, so you might want to ask your RO about that. Twenty percent of my one lung was in the rads field...one pitched fit later, the RO got it down to about 13%. Good Luck!
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Good Luck Ducky. You will do fine, maybe get tired just use lots of whatever cream your RO approves for you and use it from the beginning. You skin will thank you later.
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Ducky/Vicki- break out the aloe vera ladies...whee ha!! Ducky- you RoCK..plain and simple. My radiologist said if you go in with a positive attitude and keep your energy up, you will be fine. He was right. I was physically fine (emotionally not so much but better out than in is always my emotional recommendation when it comes to laughing or crying)...age is but a number....welcome to the club. Glad you have someone you trust, someone who will call others on their shi*, and who will explain things to you so that you are satisfied. Lime Elimar, I believe that radiation is the gunner on top of a ship blasting the cancer cells to kingdom come if they but poke their little heads up from the sand....you will be fine...and we are here to suport you.
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Hey love you guys............Elimar, great point, never th;ought of those little suckers taking piggyback ride on a needle, during surgery, or during biopsy........Shit I was poked and prodded so much I'm sure you could be right....Duh, duh, dopey Duck...........I'm just thinking now.......my brother-in-law had kidney cancer, and while doing testing they had to go through the bladder, and my sister-in-law said to the surgeon (this woman is a bitc-, just like me). "Is doing this procedure through the bladder going to bring cancer cells into the bladder"........The surgeon said "yes it could"....she was not happy, but it was necessary to do this.......................Guess what, he did get bladder cancer", so I'm shocked that "dumb dumb" didn't think of that......Too much else on my mind I guess..........but thanks for the heads up, good info.
Sandeeonherown......I cry watching "hallmark" commercials". I thought she made a lot of sense, and with only 637 women in that 70 + study, it seems like a handful compared to the number of women with cancer...........Plus they split those women in 1/2 which means only 1/2 were spared the radiation. I need better stats then that, and so did she........Plus she did say that they only got a 5 years no recurrance rate in the women who did not take radiation...........She felt 5 years was not good enough in her opinion. They are starting another "trial" but they don't want "Old ladies like me".....
My kids are all onboard with this avenue I have chosen, which makes me happy.......My son (who was one of the six who went with me, drilled this poor woman to the point of exhaustion. I actually was beginning to feel bad for her............but she never wavered...........she answered each and every question, and left no stone unturned.......
A tech person who did my mapping said to me "Dr. Markewitz never comes into the room during mapping, and tatooing, but she is staying through your whole procedure, and is staying for the CT-scan too"......."Unusual, but can I ask a question, are you related to her"..........."usually that is the only people she gives that kind of attention too, most of the time she trusts us".............I said..............beats me.................So I think my son must have made his point, when he said to her "This is my mother, and for her I went only the best"........................Guess I got what he asked for............Well ladies I'm sure i will be haunting the hell out of you all from this day on. I can't think of a smarter, more experienced group of women I would rather be with, and guess what I say all the time to the Dr's...................."This website I go on of women who have fought the Beast give me the best information I have ever gotten".........They say "good, and at 76 we're shocked your so computer savy".................Well now it has become my lifeline......Love you ladies......
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ducky - on the margins, do you mean centimeters or millimeters?0
