ER-positive Stage 3C'ers who are 5+ years out ?
I want to carve out a little corner here for me and my fellow ER+ stage 3C'ers. I'm just about one year out from dx.
I love the Stage 3 Five Years+ Out-Check In ! thread. I read it often. But hormone positive is so different from hormone negative, with risk of recurrence never really going away, and 10+ nodes is so different from one or two nodes.
Anyone out there who wants to give our particular subset of stage 3 patients a pep talk? Or commisserate? Or just share your situation or the situation of a friend or family member who is stage 3C ER+ and doing well?
Stage 3C and 3B ER+ stories only please. (But hugs to my fellow Stage 3C'ers who are hormone negative!!)
Comments
-
Sorry, I'm even more new to BC then you are and I perfectly understand how you feel. I have those days also. In fact, I just finished my dd AC/T chemo yesterday and was left with the feeling of "loosing my security blanket" , if you know what I mean...
What makes me feel better is the actual data, specific to my situation. I used "Adjuvant on line" for medical professionals (not BC Lifemath, which shows more positive results), to estimate my chances WITH ALL TREATMENTS.
It is a fact that just surgery and rads for ER+, >10 pos lymph nodes, tumor >5 cm only give 20% survival over next 10 years. But adding 3rd generation chemo and 5 years of Tamox or/and AIs increases 10 years survival to 62%! Remember, that in ER +, hormonal therapy can be extended beyond 5 years, which would add extra protection and increase the survival. Besides there are many trials going on, such as Metformin, vaccine and new combinations of drugs that maybe helpful to further reduce/prevent recurrences and/or treat any - if they occur.
And everyone, regardless of stage has 50/50 chances to end up at the "lucky" or "unlucky" group, regardless of the size of those groups. At least this is what my onc told me. So, try not to stress to much over something that we have no control over. The positive side of being stage IIIc is that we are getting the "big guns" against BC, so there is no chance of being under treated.
For all I know, there are many girls on this board that are IIIc and more then 5 years out.
And we are going to be a part of this group too.
. -
I am a stage IIIC with at least 17 positive nodes.....and 8 1/2 years out.....with an 8cm tumor and all kinds of other bad stuff.
It is surely tough in the beginning and I had some tough days, weeks, months in the beginning. But finally it kicked in that I really have no control over the future and that I didn't want to live the next whatever years in sheer panic/fear.
I know my situation can chage at any moment....but I've had over 8 years where I have seen my children who were 7, 9 and 12....go off to highschool and college.....years of being a soccer mom, room mom.....saw my daughter join the "gator nation" like her mom....started a business....etc. etc.
All I can tell you is to not let cancer take anything more from you than it already has. Take it week by week, then month by month....and years will pile on.
I get it......Jacqueline
-
I struggled with whether to post as I personally am not 3C but 2b with very low estrogen positive, some would classify as triple negative - but...my sister had a 6 cm ILC tumor (may have been two tumors side by side), 10 out of 12 nodes, and is over 5 years out. She was on femara for five years. Her cancer was strongly ER and PR positive. She is doing great with no evidence of disease. She had double MX, rads, and TAC chemo.
-
oops - not a 3C sorry ....
-
Another strongly (95%) ER+ here, diagnosed last October. In fact, today (11/11/12) is the one-year anniversary of going to my BS to get the drain out from the lumpectomy surgery and receiving the news of the pathology report. What a dreadful day.
But here I am, a year later. I'm on the other side of the treatment speed bump. Lumpectomy, chemo, mastectomy, radiation, more chemo. What a year! And I share your anxiety, TectonicShift. But what some others have written here makes a lot of sense. I don't want to spend the next however many years shivering in fear. So I faithfully swallow my letrozole every evening, try to watch what I eat and drink and weigh, exercise, and determine that I'm going to be thankful for every moment.
And I'm waiting for the research study that proves red wine, chocolate, lazing about and watching reruns of Downton Abbey reduces recurrence risk. I know it's coming. I'll volunteer for the active arm, in fact.
-
My BC is 100%ER and 100%PR positive, HER2 - 0;
Does anyone know of any vaccine trial I could try to get into?
I'm totally overwhelmed with all the information out there about different supplements, lifestyle changes...
Has anyone from stage IIIc and 5 years out any "first hand" , based on your own experience recommendations? -
Maggs where do you live? At OSU they want me on a trial for Herceptin. Even though, I'm her2 neu negative, they believe that even those of us who are her2 neu- can benefit from Herceptin.
Blessings
Paula -
I live in Ontario. Do you know if they accept Canadian patients?
I wonder if you can be her2 negative, but at least 1, not 0.
I will try to look up eligibility criteria.
Thanks! -
My friend, Tina. Stage III, Er+ with numerous nodes going on year 11....
-
This is my first post, but I have been lurking on these boards for awhile. You and so many others have given me hope, strength, wisdom and have helped ease the lonliness and fear of breast cancer. Thank you! Now I want to give encouragement by sharing that I was introduced to a wonderfully joyful lady when I had just learned I had breast cancer. Her name is Judy and she is a professor at my daughters college. She was stage 3c with 36 positive nodes...yes all 36 nodes they took out were positive!! Her breast tumor was small but very aggressive. It was ER,PR positve. She wore red wigs on test days at college and pink when she was in an extra happy mood...she believes very strongly in humor and joy which is what I felt when with her!!She is now 7 1/2 years out and looks wonder at 63 ! I have never heard of anyone with 36 positive nodes and she loves to tell her story as her gift of hope to others..so I pass this on to you.
-
Hopefour thank you for sharing that. I just got my path report last week. Tumor 5.6 cm, and 13 of 16 nodes positive. I've been a bit overwhelmed, and stories like this really give me hope.
Blessings
Paula -
Paula, I am almost 6 years out now from dx and the cancer was also outside the nodes as well as in the blood stream. I am here and living life enjoying every day.
Big hugs
-
There is no 'cure' at this time and I would run as fast as I could from any Dr that said I"d be 'cured'. I'm a bit over 3 yrs Dx IBC Stage III. As far as I know I'm NED (No Evidence of Disease) at this time.
I'm ER+ and have been on Femara/letrozole for since early 2/2010 and will be forever. What kind of placebo do you think you are on and why?
Stage is not an issue for me - type is. The odds (if you believe in odd - I don't) - is a 25% chance of making it to 5 years based on type. My 'odds' are either 0% or 100% - either I will have a reoccurrance (100%) or I won't (0%). I can't partially have a reoccurance/mets. -
Oh, yeah, Kicks, they never actually said, "cured." One said, "You can beat this." One said, "You're not necessarily doomed." That sort of thing.
I started this thread the other night because I was feeling doomed. But I hope it's a thread that grows with success stories for us hormone-positive stage 3C'ers! I have been inspired by Sherri's GREAT thread mentioned above.
-
Alyson...when you say cancer was outside the nodes, do you mean you had mets?
Thanks for sharing your story with me. I know this thread is for women who are 5 years out, but I need to read your positive stories, as I'm still new to all of this.
Blessings to you all
Paula -
"Cancer outside the nodes" - isn't this called on path report "extra capsular extension"?
My path report included this term, so I've asked my onc nurse about the meaning... She said that cancer was found not only inside of the node capsule, but also on the outside. I guess that qualifies as a "regional - NOT distant- metastasis to the lymph nodes". It's just the extend of it....
Please, correct me if I'm wrong...
Magda -
Hi,
I was just diagnosed with stage 3c breast cancer this year. I'm a mother of two girls, ages 8 and 1. I'm so scared for their future and mine. Please keep your stories coming as I'm struggling to believe that I will be able to survive this. -
Wanted to give some in put. So I was 10 and half years out before single met to my spine. That is long time from diagnosis. Not perfect but good time. The deal with ER pos cancer is you have AI's to return to. I finished with arimidex in 2008. I could have stayed on it but I wanted to stop. Four years later my cancer shows up. Exactly the same pathology as it was in 2002. So with rads to the single spot and femara and zometa I looking at remission. There are lots of options. I was 49 when dx and here I am at 60. I am optimistic. You just keep plugging along. Don't give up. Keep on!
Diana -
Kicks...I use the same odd as you!!!
I only had 12 nodes removed at time of bilat....plus one was biopsied....8/12 plus the one biopsied were cancerous....plus at least 3 tumors in my breast.....I am 6 years 9 months post Dx and continue to be NED.....Each day that I am NED is one more day that cancer hasn't taken more time from me.....
I love reading these positive stories.....
-
Hi ladies, was orginally dx stage 0-1, after surgery came out 3c. bummer!! That was in March 2011. I am beginning year 2 from active treatment, they say years 2 adn 3 are when you can reoccur or get mets more than any other years. After year 5 the odds go down considerably. I have to agree with the post that says you either get mets/RO or you don't, it's 0 or 100%. In the back of my mind I keep thinking to myself that you won't make it to year 5 without mets. Something about my luck or my karma, IDK but I hope I am wrong. My onc is very positive and a straight shooter. In the beginning he said to me "I consider you a cure". Well I hope he is right and in the very near future that will be possible. I see him every 3 months even though he said every 6. All blood work to date has been fine and teh 2 bone scans I insisted on this year and xrays have been clean. I have been having pain in the lower part of my back towards my tail bone but it could be from the tamoxifen, I will see in January when I go back to onc. I have a hard time wrapping my head around dx. I always thought " O cancer is what other people get" or I would think "I could never live with that in my body". Man, bc just plain sucks!! ER/PR+ means we get the AI's and we can have ovaries out (Which I am doing on December 20), and I think we all have a fighting chance!! There are many women on here who are more than 5 years out, my guess is some of them are out living and not here thinking about bc, but it sure is nice to hear from them!!
-
Thank you Diana50 for cheering us on!! You have been one of the woman I have gain strength from as I read your posts. Your fight kept you NED for 10 1/2 years...yeah...and will again!! So thankful for all those who "call back" to those behind them on this journey!!
-
Hi,
We have had a few PM's between us regarding stage vs grade, so let me try to bring you some comfort. I may not be five years out but I am half way there. I was Dx, 6/5/2010, ILC, 6cm, Stage IIIc, Grade 1, 22/29 nodes positive, margins not clear, ER+/PR+, HER2-. Right mastectomy, Jan. 2011. Ended radiation treatments, Mar. of 2011. Just about all of the worse case scenario, right? I am just on Aromasin daily and Zometa every three months now. Yes my Doctors informed me of my MAJOR dilemma straightforward. In the beginning I was just like you, scared to death. If you would read some of my past postings you would see the panic in my writings. As time has passed it has gotten a lot easier to deal with. If you look at any of those stupid statistics, I should have bite the dust a long time ago but instead, I HAVE NOT had a recurrence or mets. DON'T LET THIS DEFINE YOU, DEFINE YOURSELF AND LIVE YOUR LIFE!!!!!! Feel free to PM me any time for uplifting thoughts.
Hugs and Blessings
Sharon
-
I was dx 12/10/10, IDC, Grade 1, ER/PR+ (95% and 90%) HER2 -, lumpectomy 1/3/2011, 5/14 nodes. Had chemo DD AC and Taxol finished 5/2011 and RT finished June 2011. At first I heard that Grade 1 tumor is better, not as aggressive, felt relieved. Now, I hear chemo doesn't really work that well on Grade I tumors because the cells aren't as aggressive as Grade 2 & 3 tumors. Wish my onc would have told me that prior to going through chemo. Are there any 5+ survivors out there with Grade I that can share their stories, it sure helps lift me up when I see there is a chance to beat this.....
-
Hi, i'm chiming in to say i was stage lllc for five years before mets - as my signature shows, i had 26/29 positive nodes in my left breast with very aggressive IBC. Found a coupla bone mets on almost my 5-yr anniv and that's been over 2.5 yrs now and i've been stable over a year. If I had any advice, looking back, is to enjoy where you are and try not to 'freak the freak' about the future. It (possible future reocurrances) may or may not happen as it does to others and we all react to chemo/meds in diff ways. I had reached NED during that 5 years and had no appreciation for it at all, was worrying alot about the what if's ... still do (we can't help it) but maybe i worry a bit less now. Someone recently posted somewhere: "Every day may not be good, but there's something good in every day!" ... here's some Canadian hugs for one of your good things today
Patti -
Diagnosed last July with 7 out 19 nodes cancerous and pathology showed "ECE". I'm not allowing the cancer to rule my life...I'm living and if something should happen then I'll deal with it then. If I sit around all day long and think about cancer and feel sorry for myself then the cancer would be controlling my life. I'm not going to allow that....if I want a candy bar, diet coke and beer then I'm having it...not all in one sittting mind you...LOL....cause I know I can do everything right and have a recurrence or do everything wrong and have nothing. Besides I have four incredible children, my hubby and my family to live for and that is what I'm trying to do!!!
-
Hi I am new to the boards but been looking for a few weeks since my mastectomy. I have a question (I too am stage 3 changed from 2 since tumor was larger and nodes there). I have had liver enzymes elevated now and cant start chemo yet till they figure out why? Has anything like this occured to anyone? Thanks for the support. I am nervous too and my positive attitude is brought down a little now.
-
Hi bcoct
Everything we take in is filtered through our liver. It's possible the pain meds & antibiotics, or the anesthesia you were given for surgery has affected your enzymes. We all react differently.
I'll be praying that your liver enzymes get back to normal quickly, so you can get on with your treatment.
Blessings
Paula -
Thanks, Soteria. I will see another dr. at the center on Wednesday. The prayers and positive thoughts mean so much to me. Its all a rollercoaster ride with Bc I am finding out.
-
Hi bcoct - My liver enzymes go up every time I take any kind of medication (tylenol, antibiotics) and they were elevated for several weeks following my mastectomy, and then they went up again while I was doing radiation. Once I stopped taking those medicines my liver enzymes went back down to normal. I hope it's the same for you!
-
Thanks Mammabee. Will know more after Weds. but was taking antibiotics, tylenol based pain meds, anasthesia in high dose had reconstruction. Also, zinc and over counter vitamins...stopped it all a week ago but just get nervous if they cant start the chemo soon. Appreciate your comments there are some of us senstive to meds maybe? Also levels were perfect before surgery also.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team