Class of 2010
Comments
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Hi fellow pink peeps and welcome D1947. I am sorry that cancer has invaded your life...but am glad that you found this site. You will recieve great support and sometimes life saving tips. Good luck with your surgery on the 25th. I'm sure someone has already advised you to get copies of ALL your pathology reports and then start to learn how to understand them. You will find all the information you need on this site. Like Katie says, one day at a time...one issue at a time...don't jump ahead...just keep breathing, reading, learning...it will be OK! Sounds like you have a great support team.
GP...sorry to hear about your mom...she sounds like a real trooper! No matter what age our parents are...they are still our parents and it is sad to see them towards the end of their life cycle. My mom is 84 and is still on her own (my dad died some years back) and is a lot like your mom in spirit. I can't imagine my life without her. She called me last night to see how I was doing and she said, "Hi my Lindy-Loo"..."I was thinking about you and just had to call and see how you were doing"...she was just great and we had a great chit-chat.
When did your breast start to get red and a bit hot/tender? I'm sure that is what I'm going to get as well....my first meeting with the radiologist is March 8th. Is the aloe working well? Are you using the stuff straight from the plant or do you have a special cream??
Escriibe...I think you are going to start a round of chemo soon? I'm sorry if you've already started and I didn't know...I've been thinking of you and your fighting spirit...you are an inspiration. Good luck to you...
Hi Pattyfish...how are you doing? Have you started radiation?
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Hi, Linda,
My radiation is over. I had mammosite radiation and that lasts 5 days with 2 treatments a day. I finished right before Christmas--what a present. Now I am taking Femara. I have heard such horror stories about it, but so far no se after a month on the drug. I've always had aches and pains--wonder if getting old has anything to do with it : ), so I just ignore them and go on. I am doing very well and am grateful for it. Our diagnosis is similar. Have you investigatemammosite radiation with your onc?
My husband's bd is tomorrow and we are going to celebrate with friends. There is life before, during and after cancer.
To all of my other bc sisters--aren't we awesome!!!!
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Hi Pattyfish...yes our cases are quite similar, aren't they? Funny you should even mention the mammosite radiation option. Here in British Columbia (Canada) they are doing a study to see if mammosite treatments (twice a day radiaton applied to the cancer site) is more effective than the regular radiation (once a day for 6 weeks to the entire breast). I have agreed to be part of the study! I may be put into the group that gets the mammosite therapy...or I may be put into the group that gets the once a day plan. You never know which group they will put you in as it is done randomly. I hope to be in the mammosite group, for sure. Did you get much burning? What cream did you use? I see our dear GP uses aloe.
Congratulations on your party tomorrow! You certainly have a lot to celebrate don't you...like, living and life? LOL. Have a wonderful time.
By the way, can I ask you if you had the ONC test? Here in Canada it isn't done but we can pay $3,000 to have it done if we want. I'm not sure I'm going to spend the money for it as I'm not sure what it will do for me. I'm stage 1, grade 1 and my tumor was not aggressive etc. No lymph involvement and I'm Her negative. If you did have the ONC test...did you get back a low or high number?
I am wondering if anyone gets a high number back when they have a diagnosis such as ours. Your thoughts??
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Laura M: This is exactly what I'm afraid of...am doing neo-adjuvant to shrink 5+cm tumour - onc was hoping enough shrinkage for a lump. I figure there's NO WAY he's going to get clear margins, and will have to go in again - or have to have a mast. I would rather only do this once. I think my mind is already made up. Now, I guess the only thing I have to consider is if I go re-con or not. The less I have to see drs. & hospitals, the better I like it. But I don't know if I can live the rest of my life (I'm 52) with a prosthetic. Or can I? Decisions, decisions...
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Hi marmalade...I have two friends who have a prosthetic...and I wasn't even aware! they told me after I was dx with breast cancer! Both said they opted for the prosthetic because it was less invasive and less chance of future infection/issues etc. Both are very attractive women and sexual etc...amazing really. Just thought I'd throw that in there for good measure.
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Hi marmalade...I have two friends who have a prosthetic...and I wasn't even aware! they told me after I was dx with breast cancer! Both said they opted for the prosthetic because it was less invasive and less chance of future infection/issues etc. Both are very attractive women and sexual etc...amazing really. Just thought I'd throw that in there for good measure.
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So sorry to hear about your mom, Jeannie! How great for her to reach 99! But it's got to be rough going right about now. My mom is only in her early 70s and is not in great shape. She has Parkinsons Disease and her short term memory is all but shot. Otherwise, she is fairly healthy. I just hate to see her, once an avid reader and very social woman, sort of "locked" in to her chair, doing not much else but watching TV all day. Breaks my heart.
Well, ladies, I'm going to need some group support right now. I had my first chemo treatment today, and it went surprisingly well. No reactions, no problems with the infusions, no nausea (though some is starting a bit right now). My glucose was up sky high due to the steroids, but they gave me some fast-acting insulin and my endocrinologist called me in a prescription for it that I can use over the next few days.
What happened that really set me back is that my oncologist went over the results of my scans with me and has re-staged me from Stage II to Stage IV. I thought I was going to pass out. I literally stopped breathing.
It seems that even though my sentinel node was clear, there are two nodes under my left arm that are swollen, one as much as 2 centimeters. He is going to get those biopsied next week, I believe.
Then, while my brain, pelvis, chest and bone scans were clear, my liver scan showed 2 lesions. He is concerned about those and is setting me up for additional MRIs and a biopsy of those, too. But he said that is why he is moving me into Stage IV, so that we can treat this aggressively. If it turns out to be nothing, no harm no foul. But the chemo that I am getting is exactly what he would be giving for the liver lesions if they do turn out to be malignant.
I'm dizzy thinking about it! Here I was so confident that with a clear sentinel node, clear margins of the Stage II 2.7 centimeter tumor, and found even before my next mammogram was due that I was out of the woods, so to speak. Or as out of the woods as one can be with early detected breast cancer.
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Hi Ladies,
I had my first appt with oncologist and was surprised that she said probably no chemo. She doesn't consider the node positive because it only showed positive on the "immunohistochemistry" test. According to her they put no stock in that. So now waiting another 2-3 weeks for oncotype test but she is sure it should come back low. My tumor is the best it can look beside the fact it is IDC. Such a rollercoaster ride!
Welcome D1947-so sorry you had to join the group.
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LINDAGARSIDE: Thanks for telling me that. The more I get feedback from people, the better I feel that I am getting plenty of of info and opinions that will make my decision easier. I appreciate feedback from ANYBODY and EVERYBODY. And with heartfelt appreciation.
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Aw jeez, Michelle sorry to hear all that. That would scare the wits out of me. Or will, when it happens. I know you can handle it, as if you had a choice, right. That's a tough line to hear. We are here for you!!! Pink warriors as we are.
I went to meet my radiation oncologist today. She was very nice and described what radiation would be all about before she dropped the ball that they couldn't quite start rads yet because my IDC tumor measured 9mm. Now I am being sent to another doctor (another authorization required) for oncotype testing. Why wasn't that done already? I am so confused!!! Isn't this a test of the tumor itself? Why do they need my body in there to do this test OR what does the test involve? I will do some research but would love to hear from you guys about the test itself. Thanks all Peeps.
Katie
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Michele....This truly sucks, big time. Let's hope your oncologist is WRONG...as you and I know from reading other reports...often the medical opinion is wrong. He doesn't have any hard evidence of anything yet. I think he is erring on the side of caution, don't you think? How on earth can things move that quickly when you were having a mamogram every year? Postive vibes you way Michele...our courageous soldier...(((((((HUG)))))))
Katie...I'm confused about your radiologist...are they saying no rads because your tumor was too small? And why is the ONC test so important? We don't even get one here in Canada. If cancer and tumors are one thing and we are all women...I wish they wouldn't have so many variables to treatment plans as you can't help but wonder that one or some of us are getting crap. Blahhhhhhhhhhh
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Michele- You did get quite a bomb dropped on you today. Plus the chemo. Oh, we are thinking about you and holding your hand through this. At least now you are doing the chemo and the drug you need to fight that ugly beast. It seems your Dr is getting on top of it all which is very good.
Katie, I guess I am not quite up on the math. explain 9mm compared to 1cm. That is still smaller? Th oncotype test can only be done two weeks after your surgery. A sample is sent to CA and tested. It is for low to mid grade cancer patients, and the test shows a score and percentage as to whether chemo would improve or not your chances of recurrence. It takes about ten days from the time it is sent for the results and it is very costly. Some insurances will not pay.
Marm- you have some tough decisions to make too. We are here for you.
etk02038- things are looking good for you, in the big picture.
Pattyfish- hope you had a blast at your party.
Linda- How are you doing? any word on your study and which way you will be going?
Well I had a tough day with Mom today. Her dementia is really getting bad, but, it is on and off. When I went to visit this morning the nurse pulled me aside before I went into her room. they had to restrain her. Mom threw the water pitcher across the room, took out her IV three times, cursed at all the nurses and grabbed one nurse so hard on her wrist, the nurse said she never felt such strength from a 99 year old woman. She was nasty as could be while I was there, but I managed to calm her down and get her antibiotic in her and got her to eat some jello and peaches.I had to leave. When I came back for radiation two hours later and went to see her she was her sweet self. I just do not understand it. They may release her tomorrow as they can not find any thing wrong with her that they can treat in the hospital. It is so hard!
On a good note, Terry and I booked a cruise for May 2nd for 7 days. I can not wait.
Hang in there peeps. We have eachother.
Jeannie.
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Linda - they won't start rads until I am cleared for no chemo. I can't be cleared for no chemo until the onco dx comes back and I see that doctor (another authorization needed) My insurance will pay, just a timing thing. And more waiting for me. My original DCIS tumor was 6cm and labeled 2-3 in grade. My IDC was 9 mm, 1 mm away from 1 cm. 1 cm. in my neighborhood gives you a good chance of having chemo. So this doctor has to wait for those results to come back. I am in CA so maybe my results come back faster?? doubtful. What a roller coaster.
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Michele,
January, I had yearly mammogram with follow-up ultrasound, and a biopsy with a diagnosis of invasive poorly differentiated ductal adenocarcinoma of the (L) breast. February 4th, Lumpectomy to remove a 2cm malignant tumor, and biopsy of (2) sentinel lymph nodes. February 11th, had surgeon post-op visit and given the surgical pathology report with a result of clear margins and nodes. I am (60) and had mammogram every 2 years in My 40s and yearly in My 50s. March 3rd, I see the Medical Oncologist to go over surgical pathology report, and results of ER/PR/HER/2neu Tests. I feel good now after the surgery. I was a substitute Elementary Teacher and now a Licensed Practical Nurse. My husband is retired, son and daughter are through college with Bachelor's Degrees, and looking for dream jobs. I am sorry You're going through a mind numbing time, however, Your Doctor really seems to be covering all bases to give You the best prognosis. I'll keep You in My thoughts.
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Katie-I am also waiting for oncotype. My understanding is they do it for early stage node negative just to make sure chemo is not needed. And yes the test is on the tumor itself.
Michele-you must be so scared right now. Hopefully everthing will be clear.This is what confuses and scares me. I was told if sentinal nodes are negative the cancer could not have spread anywhere. At my appointment the oncologist and radiologist were feeling everywhere and felt stuff everywhere including under my arms-busy breasts they said. Their take is they can't bx everything. I think some doctors will scan and biopsy a lot and others it is wait and see. Not too reassuring in any case!
Jeannie-your Mom sounds like a tough nut. My Mom is end stage alzheimers and she is now pretty subdued now, but it has been a rough ride. She does a lot of crying though which is tough to take.
Ellen
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So I've been thinking a little too much... The radiation oncologist told me that I have to get the results of the oncotype dx test. She said that in order to do that I have to see Dr. Next. Radiation onc said that Dr. Next would give me the score and then send me back to her for rads. Fine. Rad onc was very sure the score would come back low and I would be on my way to rads. Now, my surgeon never told me that my IDC tumor was 9 mm. He said 5 mm and gave me every indication of no chemo. I am a little annoyed with him for glossing over the absolute truth. So I am now worried that rad onc is glossing over the truth and passing the bad news off to Dr. Next to give me. Why can't they just give me the oncotype score over the phone? Why another dr. visit with a new doc? I understand they need the authorization from my insurance as the oncotype is expensive, but why do they need me? I don't want to have to wait and worry any more. I don't want to go to any more doctors and tell my life story..... Oh I am glad you are all here to vent. Hubby doesn't want to hear it and doesn't understand it all, just wants to be angry at "the system." I do think I understand that the oncotype score is a slightly cloudy issue - this score means for sure this, this score means maybe, etc. Is that why I have to meet Dr. Next? Anyone's help would be greatly appreciated.
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Jeannie/Ellen, my heart is breaking for what you are going through with your moms. My mother is growing more and more away from us each day. It's really hard to take, especially when our moms were such rocks, and strong, independent women. My mother divorced my dad after 6 kids with him (he was verbally and physically abusive to her), back in the late 1960s, which meant she was a pariah. She did her best to get a job (she never went to college, married right out of high school) but managed to do well by us. Even though she was diagnosed with bi-polar disorder, she was the strongest, most intelligent and vibrant 4'11" redheaded firecracker you'd ever want to meet! A few years later she did meet the love of her life and they were married almost 24 years before he died of a stroke. That's when she seemed to begin spiralling downward. Her mental illness took hold because she had great difficulty staying on her medications properly (her husband was her medication dispenser and she is a bit scatterbrained, so could never really get the "hang" of it).
Now she is in an assisted living center (The Masonic Homes of Kentucky, one of the best around), and they keep her medications up properly. But the bi-polar and Parkinson's has taken its toll and she has very poor memory skills.
Ah well, this is when we give back, for all they gave to us. It still hurts though.
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Katie...I sure understand why you need to vent! OMG...this is YOUR life...and why people think they can gloss over the truth is beyond me. Major decisons are made based on what our professionals say to us...and if they say something that isn't true it really affects not only the outcome but our confidence in them. We really have to be able to trust our Doctors. Next time I meet with my oncologist I think I'm going to tell him this very thing. Good luck to you... big soft hug your way.. (((((( HUG ))))))
Michele, Ellen and Jeanne...your situation with your moms really hits a nerve in me. Perhaps because we are moms ourselves? My dear mother (and father) raised 7 of us...and did a mighty fine job. We were quite poor but nobody told us. In fact, my mom always told us that we were the same as the Queen as she had to wipe her own bum and so did we. Isn't my mom a hoot? We always thought that meant we were rich like the queen and so we didn't mind our socks didn't match or we had holes in our shoes...because after all..we were like the queen! LOL.
My heart and love goes out to you three as you give back to your moms...I hope this daughter will show as much compassion when my turn comes as what you three demonstrate.
And dear Katie only not too long ago lost her dear mother. My goodness, we could all get together an write quite a novel, couldn't we?
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Katie...I sure understand why you need to vent! OMG...this is YOUR life...and why people think they can gloss over the truth is beyond me. Major decisons are made based on what our professionals say to us...and if they say something that isn't true it really affects not only the outcome but our confidence in them. We really have to be able to trust our Doctors. Next time I meet with my oncologist I think I'm going to tell him this very thing. Good luck to you... big soft hug your way.. (((((( HUG ))))))
Michele, Ellen and Jeanne...your situation with your moms really hits a nerve in me. Perhaps because we are moms ourselves? My dear mother (and father) raised 7 of us...and did a mighty fine job. We were quite poor but nobody told us. In fact, my mom always told us that we were the same as the Queen as she had to wipe her own bum and so did we. Isn't my mom a hoot? We always thought that meant we were rich like the queen and so we didn't mind our socks didn't match or we had holes in our shoes...because after all..we were like the queen! LOL.
My heart and love goes out to you three as you give back to your moms...I hope this daughter will show as much compassion when my turn comes as what you three demonstrate.
And dear Katie only not too long ago lost her dear mother. My goodness, we could all get together an write quite a novel, couldn't we?
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Hey, Linda,
The cool thing about my experience with mammosite was no burning, no "tan," just this weird pigtail hanging out of my boob. It was always bandaged each day after treatment. I didn't use and don't use a cream. If you are a mammosite candidate, you might want to find a front closing sports bra for afterwards. I ordered one from herroom.com. The bummer for me was not having a shower until they closed the site. My surgery was on the 15 of Dec., and my radiation started on the 17th. Treatment was not bad at all. When will you know which group you will be in? When you find out, let me know and I can give you an idea of what a day's treatment is like.
I did have the ONC test and I am a 16--a high low with 17 being the cutoff for the "low scores." My onc said the good news was no chemo, so I take Femara.
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Hi, Katiemom,
My radiologist ordered the ONC test after consulting with the surgeon. My radiologist onc then told me I would need to see the medical onc and that he would go over ONC scores with me when they came back. It is my understanding that the ONC score helps to determine the chance of reoccurrace of cancer,There is a chart and the docs look to see where the ONC score falls. My score of 16 told my doc that I have a 1 in 10 chance of another visit from bc. Chemo would not change those odds so no chemo for me.
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Thank you every one for your encouraging advice. I am not as apprehensive as I was when I first joined the forum. I got the pathology report this week and had a good, lengthy discussion with my breast surgeon. I guess the "good" news is that the cancer is ER+; however, the HER2 results are not in yet. Since I will be undergoing full axillary lymph dissection, my doctor warned me of the possibility of getting lymphedema. Have any of you experienced this? I've been reading about it and it appears preventable if you follow the various precautions, but the treatment once you get lymphedema sure looks complicated. Keeping all my positive thoughts for all you out there.
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Hi D1947...my Her test took quite awhile to come back and when it did, it was in the "grey" area, i.e. equivocal. I was very upset (forgot to be patient) and they had to do what is called a "FISH" test (this is a definitive test) and when the results came back (fianlly) it was negative. Try not to worry if it takes awhile...ok?
The lymphedema is quite common ( I have a friend who wears a special elastic sleeve over her arm from time to time) and there are lots of solutions for it. Keep reading/studying...soon you will be quite informed...as we've all learned to be. LOL. Hang in there pink sister!
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I am a new member to the class of 2010. I was diagnosed on Monday and I will be having my surgery a week from this Monday. I have decided to have a bilateral mastectomy with reconstruction. I have only one area of confirmed cancer but others that are enhanced. I don't want to take any chances since this cancer was so difficult to find. I just keep wondering what else they can't find and I am told it is aggressive. So out it goes, I am praying that it has not gone to the lymph nodes. I had a clean mammogram in October. Some breast pain that persisted lead me to the doctor and now here. I am at peace with my decision, but SCARED to death about what it about to happen to me, physically, emotionally and mentally. Will my life every go back to normal?
peace and strength to all of you in the class of 2010
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katie- Yes, as Pattyfish said, that is the way it went for me. the surgeon referred me to the radiologist Oncologist, he ordered the oncotype test and started me on treatment but, the Oncologist will be the one to get the results and determine your treatment, with or without chemo, hormone therapy probably, and as I understand it, will be the Dr we will follow-up with for years to come.
Ellen and Michele and Linda, than you for sharing about your Mom's. My Mom has been a huge rock in my life. She left my dad in 1956 and became a very successful portrait artist. She has paintings in the homes of many all over the US. She painted the portrait if Robin Bush, the daughter of President George and Barbara Bush. She even in the last year received correspondences from them how they still adore the portrait that she did of their daughter that died of Leukemia in the late 50's early 60's. Mom was one of the first very strong, independent women, a women's libber. She is loved by many. No matter what, to see your loved one become so weak and lose everything that makes them enjoy life, it is just devistating. I do not want to get that old and I tell my kids if I should go before that time, they should know I would want it that way.
I'm sorry, that is enough sad stuff!
I have another good thing happening. I went to four years of all girls boarding school in Peekskill, NY. We were, are, like sisters the few classmates that we have found, and are in touch with, out of our class of 31. Six are going to be here on the weekend of March 7th. My husband is going to visit his son and grand-children and three of my sisters are coming and we are going to visit and laugh and hang out in Jammies and play the Wii, and they are going to cook and take care of and want to pamper me. Am I not blessed or what? My good friend is flying in from Syracuse NY.I can't wait for our SMS Fl mini-reunion.
Got through my 15th Rad today and have some redness on and off, itchy rash a bit but nothing too bad. Yes, Have your aloe ready.I got it from the pharmacy where they have suntan lotion. Pure aloe and I keep it in the frig. I need that as soon as I get home and off with the Bra!!!!
Dublin4- best wishes to you and sorry you have to be in our group, but we are are great group and we are here for you. You are moving quickly which is a very good thing.
Goodnite Peeps. Keep up the fight. We will survive!
Jeannie
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So I was slitting at dinner at a restaurant having a glass of wine when my phone rings with a message from the rad onc. She says that the med onc (previously referred to as Dr. Next) had not heard her correctly and since my tumor is only 9 mm I don't need the oncotype dx and will not need chemo. She is putting in the authorization for rads and I will be done. Sheeeeeeeeesh, what a horrible night I spent worrying about chemo, my life, my stage etc.. I am so happy with the news that I don't feel like executing anyone, but why did they put me through this. Oh well, I am doing the happy dance and have two glasses of wine in me
Have a good weekend all, and so many thanks for all the love.
Katie
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Katie- that is awesome news! You certainly deserve to celebrate!!!! indeed. Yeah!
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Hi! Dublin4,
I am also a new member to the class of 2010. I was considering not having My yearly mammogram in January 2010 but waiting 2 years until January 2011. However, the last week in December I started to get pain on the outside of (L) breast which continued the next week when having yearly GYN visit, the pain seemed different, and scared Me into having yearly mammogram the following week. PAIN CAN BE GOOD!! I'll keep You in My thoughts.
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Katie-great news! Wine is good sometimes. Had 2 glasses myself last night and was alseep by 8:30.
Jeannie-enjoy your upcoming weekend, you deserve to be pampered. My 2 sisters and I are planning to go away in the next few weeks. No hubbies or kids or dogs. Should be fun.
Dublin4-welcome, but sorry you had to join us. When you said "just keep wondering what else they can't find" it hit home. My breasts are so dense I am scared there are other stuff around. At my last appointment the oncologist was feeling a spot for a long time and it was painful. It didn't show up on my last mammo so she won't act on it. Her opinion is that we could be doing biopsies on every little thing and that would not be appropriate. But it makes me think whether a bmx would have been the best choice in the long run.
When I had my blood pressure checked at my last appointment the nurse said I should never have it done on my right arm since that is the side my nodes were taken. She said blood draws also should be done on my left. She said not everyone will ask so I should make it a point to not let them do anything to my right arm. This is to prevent lymphadema. Good to know since no other medical professional told me.
Ellen
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Katiemom, YEA! and have I am so happy for your news!
Teka, Pain can be good and in our case it was...we would never have know otherwise and the cancer would have a chance to grow and be in control. I am so glad to hear that you did not wait.
etk2038, For me, I also have dense breast with cysts, I would also be wondering if it was back, I want to take care of it and be normal again, although it will be a new normal, I wont have to worry about the breast cancer coming back. I would have it on my mind everyday. I would never trust the mammo again and mri's are only once a year. If I were to get the lump removed and radiation, if it came back I would not have radiation in my tool bag to fight, since I am told you can not radiate the same area twice - it wont work. So with all the info I decided for me that this is the best choice and I can have one surgery, one recovery and hopefully resume my new normal. I have two boys and I want to be here to see them become men.
Jeannie, I love your smile. Thank you for the kind words and although I do not want to be here and I hate the ***** cancer, what a wonderful group of women I have encountered. Thank you again!
I will keep you all in my prayers.
Staying strong! Dublin 4
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