5 year survivors, post your screen name here!
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I don't actually know - she told me invasive stage II. Because she was diagnosed 17 years ago - and the different types didn't get as much attention back then - she seemed not to be as astute about it. I remember when she had it and my mom was doing nice things for her like bringing over food. My mom has several friends who are 20+ year survivors although some have had recurrences.
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FYI there is a 30 YO survivor in my building. I never knew even though she has really bad LE in one arm. When I told her I was diagnosed with cancer she said "breast?" I said yes… and that's when she told me she was a 30 year survivor.
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WOW 30 years! What an inspiration!
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30 years is AMAZING! LE sucks!!! but I truly do believe there will be new treatments in the future as so many are on the horizon and in trials right now.
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wish I had a "like" button...lol...wow ladies, you are all so inspiring!!! Hugs to all
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Such an inspiring thread. Thank you ladies.
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I wanted to jump in to say if any of you have LE or encounter people who have LE - my own case has gotten quite a bit better in the past 6-8 weeks by doing a few things I learned from other LE warriors and put into action myself: 1. Cardio while wearing a sleeve. It doesn't have to be really hard, and mine isn't since I have achilles tendonitis. I just lightly ride a stationary bike for 30 minutes with a sleeve. It swells up a bit while doing it. Then I keep the sleeve on for an hour after while I cool down and my swelling goes way down during this time. 2. Lifting slightly heavier weight and pushing myself a bit. While there is fear about this, it has absolutely lowered my swelling. The studies say weights can be done with or without a sleeve for essentially the same result. I am mostly doing without. There is usually an immediate difference within an hour of the workout. 3. Drink tons of water. Nothing takes down a bad flare up like a couple of days of heavy hydration. Sometimes hydrating makes it better in just a couple of hours. 4. Do not wear ANY tight bras and minimize the time spent wearing them at all. Even though I have a poor result from my reconstruction - 2 totally different sized and placed boobs - I still go out on some errands and stuff with no bra and a loose shirt. Lastly, I think there is WAY too much emphasis on wearing sleeves as a solution when I don't even find it helps that much except during cardio to put some compression to help take down swelling as we cool down. It is the only time I wear it. I flew to London and back without a sleeve last week because in my experience flying with compression has made it worse and never better. There is a clear study (I have read them all) that says compression does nothing during flying. I have had bad swelling in the past and got very very depressed about it for months and was suicidal at times. Then I picked up the habits above and it compeltely turned my sitaution around. We LE ladies are subject to lots of myths passed from therapist to therapist. The TRUE risk from flying actually may be in handling luggage. The study actually hypothecized that flying is not an impact to LE at all, but rather those with issues hurt themselves handling luggage. I'm not trying to be a doctor or anything like that, folks. Just sharing what I have learned. I am really dedicating myself to this both for myself and to help others.
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Thanks for the all the advice Mariasnow. I had an axilliary node dissection and although I haven't encountered LE yet (hoping not to), it is always better to know how to prevent it. I have a hot tub at home and I still haven't been back in it since surgery as I'm worried it might start things off.0 -
I AM LIZ19 OVER 5 YR SURVIVOR !!!! CAN ANYONE HELP ME WITH CBC RESULTS WHEN YOU GET YOUR FOLLOW UP EACH YEAR? MY DOCTOR WANTS A RECHECK ON MY CA -27-29 # TO BE LOWER ANY SUGGESTIONS ON HOW TO LOWER IT ?0 -
Liz, the CA27-29 measures circulating cancer cells. Ideally, it should be less than 36. As far as I know, there's no way to lower it the way we can impact cholesterol, for example. It is what it is, although it's not always accurate in some women. Do you know what yours normally is and what it was this most recent time? That could be a clue as to whether it's a normal fluctuation or something possibly more concerning. Deanna
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liz my onc doesn't even do them because she feels they are unreliable.
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The studies show that the tumor markers can be considered about 80% reliable. To me, I'd rather have that opportunity to know so I get the markers done. If my onc didn't do it, I would absolutely go somewhere else and have it done.
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my dr doesn't relied on the markers either due to mine we're all normal when diagnosed....
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6 years on Aug. 18!
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thats wonderful borscheid!!
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Woowoo! Made it to five years! My goal was to see my lil gosemah's (grand babies) get on the bus to start school. And that dream will come true tomorrow! They were four and five months old when I was diagnosed. My kids are older and have the skills to take care of themselves now. Time has been precious and many blessings to breastcancer.org and all the treasured incredible writers who continue to help me through this incredible journey of learning and sharing. Positive vibrations....
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Hello,
I rarely post anymore, but did want to mention I was 5 years from date of surgery in July 2014.
My husband was so very sick during that time, and I could not readily find this thread.
I did not do any of the recommended hormonals, like aromasin etc, and "lucked" out anyway.
I now see MO once an year, and have mammogram and blood work before appt.
Good to see 20 pages on this subject.
dsgirl
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bump.
Looked the Forum up - it's called acknowledging and honoring our Community.
Topic: 5 year survivors post your screen name here.
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Merryk, 14 years! DCIS, STAGE 0. Sentinel node biopsy. Chose mastectomy because breast was very dense. Lumpectomy would not prevent new csncer. No complications, very little pain throughout. No radiation or chemo necessary. Find the top breast surgeon in your area or condsider going elsewhere. Breast cancer is life threatening, so you need the BEST surgeon you can find!!
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Your comments are spot on! I had no Lymphedema after mastectomy with sentinel node biopsy until I lugged heavy stuff 7 months later. Surgeon sent me to therapist who specializes in gentle massage for breast cancer survivors with Lymphedema. Do no heavy lifting on the operated side
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5 years and doing well. SharonMH
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Awesome, SharonMH! Thank you for speading hope!
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SharonMH, your post brought tears to my eyes. You had a scary diagnosis but that is all behind you now!
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I am a six year survivor. Diagnosed with stage IV breast cancer with metastatic lesion in my left mandible over a year ago. Receiving Afinitor , Exemestane and now an injection for bone regeneration.
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11 1/2 year survivor of Stage 4 with original metasis to my liver. Now have a recurrence in the lymph nodes behind my sternum.
Hanging in there.
Denise
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There's so many amazing women here! Thank you so much for posting - I need to hear these stories right now. I am a year out from dx and admit I'm feeling a bit down at the moment, but you have inspired me.
Denise - you are AWESOME!! Keep hanging in there.
Love you guys:)
x x x
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This week marks 5 years out from diagnosis, with the surgery date coming right up three weeks from now. Looking back, it was an unwelcome detour, but now I am moving on to a wonderful and exciting time of my life both career-wise and personally. I am having the most wonderful time with my new love interest who also likes the outdoors. We met during the annual cycling event to Portland OR. I have no idea how "long term" this will be, but just so fun.
I am doing the best work of my career, and I think work that is very much needed. I am also stronger and fitter than ever. I measure that in my ability to go up hills cycling and also that I am faster now. I think I will find the same thing when ski season rolls around.
I eat mostly what I want, hence the cycling and skiing and stay in shape. Essential too for staying on my game.
My biggest surprise for this time of my life is not that I had cancer, but that I live this lifestyle in my mid 60s. Life is really good, and especially sweet because it was just a bit over 5 years ago that I found a lump in my armpit and immediately knew what it was.
And yes, I am beyond grateful to those who helped me, and I believe cured me. For, I would not be here otherwise. - Claire
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Claire
So happy for you, and like you I am forever grateful for my medical team that got me here.
BCO also has been a place to go when I did not know if I was the only one with certain feelings, worries etc. and I found I was not alone.
dsgirl
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Claire, I've always found your posts inspiring, and this is the best one yet! Congrats on the 5 year mark, and so happy for everything else that's wonderful in your life! Deanna
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I am 15 years from my first breast cancer with no recurrences and nearly 3 years from my second breast cancer (a new primary).
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