CALLING ALL STAGE I SISTERS
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Welcome KIM....I also had a lumpectomy with SNB.
hugs♥
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ubnsmiley: I had horrible, horrible night sweats when chemo slammed me into menopause. Onc put me on Effexor. The hot flashes were not as intense and the night sweats pretty well subsided. I was on 75mg. I asked the onc after about two years if I could take a lesser dose. I ended up on 37.5mg with mild hot flashes and mildly warm nights and not nearly as foggy-brained.
Check with your Dr's and see if they will prescribe it for you. Lack of sleep will drive you to the nut house 'fer sure' !
bonny
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Welcome Kim... I had a partial mast and SNB. I had a h/o Hodgkins Disease when I was 16 and did chemo then. I felt sure with my h/o cancer that they would recommend that I do chemo again, but my Med Onc said it wasn't necessary or needed since I had no family h/o breast cancer in my immediate family members. Strange though I had great aunts and a 1st cousin that have all had breast cancer. Do I regret not doing chemo again, no, but it is a very personal decision you have to make with your families help and doctors guidance. As someone mentioned above each Med Onco has a different opinion. I love mine and trust him totally.
If you have any questions or want to chat in private please feel free to ask or PM any of us.
Sending you big hugs
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Hi raincitygirl,
Thanks for the info, I need all I can get this cancer stuff sucks and I just want it to go away and stay away. I just need to know I have done everything I can but, I do not want to do anything that could have such bad and lasting effects on my life and will not make a big difference in my treatment.
Thanks again. Pam
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Update: Went to see the surgeon for a recheck and Radiology Oncologist.. Surgeon said I'm good to go back to work in another week... then RO says that he is thinking 16 rad treatments and I will be good BUT we are still waiting to see if I need chemo... That appointment is Monday if the oncotype test results are back.. They weren't back when I saw the RO. I will probably start radiation in June.0
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Plils, I had an 18 Oncotype score and my benefit from chemo would have been just 2-3%. I did not want it, and my doc said he usually liked to go with chemo only when the benefit is 5% or higher. My Dx is a lot like yours, HOWEVER, you do have the more aggressive Grade 3 and that faster multiplying cancer is supposed to be more responsive to chemo. Being in the "grey area" can be so mind boggling...hope you can sort it out. Like raincitygirl has mentioned, besides what you learn from the MRI, a second opinion might help you make up your mind and feel comfortable with the decision.0
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Good advice-E!
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Plils: I was in that grey area as well, but I am triple negative. My distal recurrence rate was 1-2% and my onco advised against chemo. She did not want to risk giving me permanent neuropathy or something worse for such a small chance. My tumor was 3 mm. Grade 2., hormone negative. I took me a while to come to terms with my decision, but now I feel good about it. Sometimes it takes talking to multiple doctors to get enough of the info you need to make a decision. It helped for me. I got three opinions!
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Kim- welcome- you will find a great mix of women here all supportive...it is amazing that when it is really needed, there is someone on here who *gets it*
mtks- I has a bmx with reconstruction and in fact, saw my PS today and asked about some odd pains I was having on left side- he told me at this point not strange- things are *hooking up* in there and regenerating. If anything becomes really painful- to call him. I am almost nine weeks out and these started a couple of weeks ago. It is the healing- when you think about it, there was a whole lot of work done inside that we cannot see. The outside visible scars heal a whole lot quicker than inside. Good luck and you may want to hop over to the picture forum as there are a lot of in depth discussions on reconstruction and pictures as well.
Hey- while i cannot advise anyone on chemo decisions, I did get my hands on the physican's copy of the NCCN guidelines that were updated on Feb 2011...twice as long as patients' version and much more detailed with a lot more side commentary and explanations. You can PM me if you want me to email you a copy. I have to admit, after reading it, it made me truly understand how vague everything is....whichleads me back to crapshoot territory
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annettek - I would love to see the newest guidelines for my particular statistics - my understanding is that it is still saying there is unlikely sufficient benefit....my email is diane@dianecowger.com -thank you so much!
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annette- as always, you explain things eloquently...and yet to the point:) love it
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ah Sandee, you're sweet- ihave been ramblin on all day:)
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The NCCN Physician and Patient guidelines really helped me when I as going through my chemo decision. It made everything much more understandable to me. Also, there is a website, I believe it is called Cancer Math, that was helpful as well. It is kind of like Adjuvant Online, but for the layperson. I didn't beleive the numbers at first, but after much research they were very close to what my MO gave me.
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Annettek-Thank-you for help.
It does make sense that everything is healing. Just odd this starts 4 weeks out. I think I might be a little too apprehensive about pain "on it's own" in the lower portion of the collar bone, since that is what lead me to this disease. I'll give it some time. My ps wants me to schedule for my fat graft and nipple/areola next month. I'll only be 3 months out. Most people have been waiting 4-6 months. What to do? I am so ready for this to be over with.
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mtks- so much in regards to schedule is determined by your own body and of course, the ps. Everyone's reconstruction resembles each others, but is so different, just like stinking BC. If the pain near your collarbone starts to freak you out (that place where warning bells won't stop ringing in your head)-call your oncologist then. It may seem alarmist but frankly, after what all have been through, this is one time in our lives that we get a pass to *freak out*. When I thought about it, over the past few months I have called my oncologist and even the BS when I had questions. Wanting them to say it was nothing, scared they would be alarmed. In this point of recovery, my brain is as important as the rest of my body.
Back to the nipple surgery (what a strange universe we now inhabit-nipple surgery indeed!)-my PS was going to do them at the end of this month but then told me he would be out of town in June- I chose to wait until July- for if there are any problems, I do not want followup with another PS. It would have only been 3 months. I also asked him yesterday why I can't have areolas for heaven's sake. (again, a very weird thing to talk about). He prefers not to do the extra surgery as it involves grafting-he makes the nips and then the tattoo artist give me color and aerolas. Hmph. I could insist and he would. But then I thought of the extra cuts involved and healing- and have decided (at this moment) to pass and go with the tattoos. He may do a bit of fat grafting for one ripple that I have, but we'll see.
Frankly- I want it all over. I see the onc and bs in June for major checkpoints (onc to test my blood and see if my alternative course of AIs is doing the job (if no- I reconsider my choices)_ and my BS for whatever it is they do when they examine you at this point (I have no idea since I have not seen her since shortly after BMX). Then the nip surgery and tatooing in July.
It seems forever that I have been consumed with this battle, when in actuality it has been such a short blip on the radar of life-i am almost 6 months out to the day from my BMX in November 2010, which was three weeks after diagnosis in October. Although I have been very angry at times for what I have perceived as delays or rushing things, in retrospect, I have been blessed with the relative ease of all the docs and tests required and requested coming through. I have actually had some choices (i.e. delaying nip surgery for my own piece of mind for recovery) and some, not so much.
I want it over too. I posted a long missive on another thread for where my head is in regards to wanting my surviving to become my thriving. In far fewer words, it came down to something like this "dusting off my now flabby ass, getting in the saddle again and riding...."
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(((SISTERS))) 0 -
Back at ya ((((Shelia))))
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Kim, I was in your exact same shoes on Sept 10th, 2010, and as I look back I'm amazed at how I got through it all. Prayer actually does help, and those prayers will never let you feel alone or scared. They did find that one lymph node was affected, and I had 20 radiation treatments. I am now on hormone suppressant. Just keep thinking positive, don't listen to anything negative, and you'll be fine. (Also keep Prov.3:5-6 first and foremost in your mind) I'll be praying for you tomorrow. Soon this part will be behind you. God bless!
Twilah
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Hi Ladies.........................I'm back,..............Well I did go to D.C. on Friday morning bright and early.............first I drove myself to Rads, and was done by 7:30, came back home, my daughter picked me up and we were on the road by 8:30
I had a wonderful, wonderful, trip, and everything was fantastic.............There were 18 of us, and that still left 1/2 back hom (who could not make the trip................Two of my grandsons who live in Chicago came (it was there sister who graduated), and it was so wonderful to see them.....Oh how I love those boys............Some of my children took the trip with us, and several of my grandchildren
Last night after having dinner we all went out to a "Piano Bar" I was the oldest person in the crowd (76), and I had a ball......We had our own private spot in the club roped off, and only we could be in there.........you buy your spot........We were right there amidst everything, and the Piano Boys sing, they play any kind of music you request................ I have never had so much fun in my life........................My grandson gave one of the piano players $20.00 to play "Friends in Low Places (my favorite song, and he knows it.)..................I was sitting there having a ball when the Piano Boys, called out................ DO WE HAVE A NANNIE IN THE HOUSE TONIGHT............................My grandson shouts out "YEA WE HAVE ONE OVER HERE".............The guy says "OK, WILL HER GRANDSONS, PLEASE ESCORT HER UP TO THE PIANO".....................Then he started playing "Friends in Low Places", and he, my grandsons, and myself, sang it with him......................The place went nuts, and so did all my family.............................My grandsons were so buzzed, they could barely sing (they never drink as much as they did), and we all danced and sang.........................My daughters said "Mom you are a crazy lady".......................The people in the place sitting all around began throwing money up on the stage, and we just hooted and hollered as loud as we could..................What a fun night that was.....................Actully made me forget I had cancer.....
The ceremony was beautiful, and my grandaughter received honors for her grades.........We had dinner out 2 nights, walked the streets of the Harbor, and looked in all the shops............The Speaker of the House......John Boaener was the graduation speaker, and was very good. "The National Cathederal of the Immaculate Conception", is magnificent............................My one grandson said to me this mornign when we were saying "goodbye", "Nan I ahve something for you"................He bought me a "bracelet rosary", with the face and the prayer for St. Peregrine, the patron saint of "cancer". He bought it in the Cathederal..
I needed this weekend very bad..........I spent precious time with my family and ate, drank, sang, danced, and forgot all about my worries for 72 hours,,,,,,,,,,,but now I'm back home...........said a sad Goodbye to my beautiful grandsons, who I won't see for quite a while.. ...........The graduate is taking a trip to Las Vegas, before she comes home and begins work at Childrens Hospital in Phila,
The next time we will all get together will be on Sept. 10th when another grandaughter gets married.................I will see most of my grandchildren and children before then, but my 2 grandsons that I love so much won't be back till then....................
It is sad when we all part our ways, because we have such fun together........I have a crazy family, but i would not change anyone of them for all the money in the world.......
By the way ladies..........I drove myself to Rads, so today I said on the way home from D.C. to the son that always takes me "Hey Vin, you don't have to take me to rads tomorrow, I did fine the other day by myself"..............................He said "No, I will pick you up tomorrow at 8:45 sharp, like I always do on Mon, Tue, and Wed, ............"I have been with you from day 1, and I will continue to the end"............I want to be there to see you "ring the bell"
I said to my daughter who takes me on Thurs., and Fri..........."Nikki I did fine, I can do this m'yself, I'll drive on Thur. and Fri..........she said "what's that you say............your gonna drive yourself to the hospital...........I don't think so"...your not cheating me out of watching you ring that bell"............................I'll probably have the whole friggin family standing there at the end watching me right the bell".
What a wonderful weekend...............I could not be happier................
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that is beautiful Ducky- living it with your family and recognizing it for how special it is. I am so happy you have them all:)
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Ducky - Thank you so much for sharing your weekend with us. You have a very special family and it will be an exciting day for everyone when you finish treatment and ring the bell.
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Oh Ducky---what a beautiful story...and what a wonderful family you have.Dont forget to tell us sooooo we can ring the bell too.Your stories are sooo much fun.hugggggggsK0
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Ducky- ok...damn it...you made me cry again! Beautiful....that is what family should be like:) And good for your kids saying "I am taking you!"....they are doing it as much for themselves as for you because they need to be there....thank you for giving them what they need...I know how hard it is to give in! BRAvo!! Glad you had a good weekend...you are half way through CDucky..you CAN DO IT!
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Thanks ladies........it was a wonderful weekend, and I wanted to share it with all of you.........it is because of my family, and all of you, that I have made it this far..................nothing like a good family, and good friends.................you my dear ladies are my good friends........love you all, you always give me something to smile about...........hugs.
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((((Ducky))))
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Oh, ducky, you made me tear up, too.... What a wonderful family you have, you are so loved. What a lovely weekend, what a memory to look back on. I would have sang "Friends In Low Places" right along with you!
So much love.
((hugs ducky))
♥
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Such a beautiful story, Ducky. Glad you had such a wonderful weekend with your family!
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Ducky, you sound like a great fun-loving mom/grandmom. I am glad you had what sounds like a terrific time! Such love from your family, and I can only imagine it's reflected from the love you've given them over the years. Thanks for describing your trip, it's almost like going there myself. (which I'd love to do
Your family sounds wonderful and that's more than half the battle, isn't it?Twilah
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Ladies, I'm so glad I was able to share my weekend with you all..........Like all families we have our life problems. Do we always see eye to eye, of course we don't........do we all have our little complaints about each other, yes we do, but when it comes to the "really" important things in life, we are always there for each other, and always have been......................
In 1991 when their father finally lost his battle with Pancreatic cancer, one by one all 6 spent some time with him, not knowing for certain that, that day was going to be his last, but they were all came to the home they knew so well that day.............after he had passed away, and they sat around reflecting on their father, we found out then that the message he gave to each child was "take care of your mother for me"................and they kept their promise..
He told me "I wouldn't be leaving you if I didn't have too, and I want you to know that"............just 2 days before he died he said to me......please never let anything happen to my family.........keep them close, never let them be angry with each other for more then a day, and step in where you have to when you have to, and I did...............we're 'not perfect, we have our differences, but we are always there to raise each other up, if we fall.............If we get together for a special occassion, and either one of the children, or grandchildren can't be there, someone will always bring a picture of that person, and when they take a group picture, the picture of the ones who couldn't attend are held up, and then, they too are in the picture too
My children joke and say "come on Mom, tell us the truth, who is your favorite", and I would always say, "the one who is sick, till they get better, and the one who is away till they come home".................they would laugh and say "that's what you always say Mom"........ So yes, I am fortunate, and I know it, to have children, grandchildren, and 2 newborn great grandchildren that come to see you, is rare these days, but thank God it still exists..........
I believe in my heart family is the most important thing in your life...............
I always said a mother is "a woman who seeing there are only 4 pieces of pie and 5 people, all of a sudden decides, she doesn't really like pie"
My mother would say to me "no matter what else you do.............if you fail as a mother........you have failed at life"............
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Ok ducky just not fair I cried twice reading your post. What a loving family you have. And your grandson giving you that bracelet how sweet of him.
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