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Topic: Need Your Tips for Members Newly Diagnosed Stage IV

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Oct 5, 2016 02:22PM

Moderators wrote:

Looking for your tips to share with members who have been newly diagnosed stage IV/metastatic. Being diagnosed with Stage IV/Metastatic disease involves a unique set of concerns. If you could give your newly-diagnosed-with-mets self advice/tips/encouragement, what would you say? Please post in the thread below.

We're hoping to share these tips in our next Community Email Newsletter, with a highlight on National Metastatic Breast Cancer Awareness Day, Oct 13, so any and all tips/advice you could share in the next week would be very much appreciated!

Thank you in advance to this very special and valued group!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Posts 31 - 60 (122 total)

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Feb 21, 2017 08:56PM rosetide wrote:

Hi,

I have been in treatment for almost a year now, I was diagnosed in March 2016 but had it long before was misdiagnosed 6 months prior. Longgggg story short lol! I am still here ladies, and just completed today I think my 16th treatment?? I have stopped counting because it is now just a part of my routine. Although it has been tough to get to this point it is doable. I will tell you not to worry about the dying part because in life NO ONE and I mean NO ONE is guaranteed their next breath. So just take that thought out of your head. When He is ready for you that is when your time will be so up till that point do your part. Eat healthy, get rest, relax, slow down, take some good deep breaths during the day, look up to the sky, smile, laugh, play with your kids/pets, soak up life because this is just a lesson. A lesson hopefully will be a way to shape you as a person. I will say that this walk is not about being comfortable or being in control. So if your use to those things get rid of them because a. YOU ARE NOT IN CONTROL lol! and B. you are not going to be very comfortable....BUT you will reshape your soul, you are about to learn how powerful and strong YOU really are. YOU are about to find out how much Our Father in Heaven LOVES YOU and will answer your prayers in His time. I should be dead ladies, He has other plans for my life. I have found that I have control over my life AFTER this one...how is that ? Obedience. Live a life the best you can in standing with your church. When you find yourself feeling sorry for yourself lol! because it is going to happen...get up and help someone else because guess what? there is someone out there that has it way worse than you. All in all, get on your knees thank the Good Lord for all your blessings because just by being able to read this your already blessed beyond~ Pray, Hope, and Don't Worry! Peace B with U :)

Dx 5/20/2008, Left, Stage IB, 0/3 nodes, ER+/PR-, HER2- Dx 3/2016, Right, Stage IV, metastasized to lungs, ER+/PR+, HER2+ Chemotherapy Taxotere (docetaxel) Chemotherapy Chemotherapy FAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Left; Reconstruction (left): Nipple reconstruction Targeted Therapy Perjeta (pertuzumab)
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Feb 22, 2017 08:16AM cliff wrote:

I have stage 4 breast cancer. I found out after the surgery, feeling sorry for myself, I went to the internet, and nearly did away with myself, the stuff on there is so bad. I found this web site, and the truth is here. I have been on tamoxifen for 10 months now, and because my plumbing is different than gals, my side effects are different. the last 3 bone scans have shown those lumps of cancer have reduced in each one, it will be quite some time before they are gone, but I will put up with side effects as long as they are going, because, I HATE CANCER. a stage 4 diagnosis is NOT a death sentence. modern medical science is pretty good these days.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 4/1/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 22, 2017 01:38PM Andrea1111 wrote:

Hey. How long have you been taking Ibrance and Leterozole?

Dx 12/2003, IDC, Left, 1cm, Stage IB, 1/13 nodes, ER+/PR+, HER2- Dx 11/2014, IDC, Left, 2cm, Stage IIB, ER+/PR+, HER2- Dx 12/2016, IDC, Both breasts Dx 1/2017, IDC, Both breasts, Stage IV, metastasized to other, ER+/PR+, HER2- Chemotherapy Hormonal Therapy Femara (letrozole) Chemotherapy Other Surgery Lymph node removal: Left Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Liquid tamoxifen (Soltamox), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Chemotherapy AC + T (Taxol) Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Feb 26, 2017 02:52PM Wiegp22 wrote:

Absolutely love this

Paula

Dx 11/13/2016, IDC, Right, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER+ Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Mar 2, 2017 10:31PM - edited Mar 2, 2017 10:32PM by hodges

This Post was deleted by hodges.
Surgery 8/10/2013 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel, Underarm/Axillary Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy External: Breast, Lymph nodes, Chest wall, Bone Targeted Therapy Perjeta (pertuzumab)
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Mar 3, 2017 11:08AM JoynerL wrote:

Good morning. My initial diagnosis was December of 1990, and I have been fine for 26 years. The mets to the bone were discovered by accident during a CT scan for something entirely different. I have just started my first shots of Faslodex a week ago today and took my first Ibrance yesterday. My initial tumor was small (1 cm, as I recall) and I had one positive lymph node. Back then, I was only told that my tumor was estrogen positive and nothing beyond that. I took Tamoxifen for 15 years and then was switched to Evista. Can't help but wonder if staying on Tamoxifen might have protected me. Today is my 71st birthday.

How are you tolerating the Faslodex and the Ibrance so far? I feel nothing so far, but I have just started. Thanks, and good luck to you!

--Lynn Dx 12/1990, IDC, Left, <1cm, Stage IIA, ER+ Surgery 1/2/1991 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Saline implant Chemotherapy 1/15/1991 CMF Hormonal Therapy 6/30/1991 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/31/2002 Evista (raloxifene) Dx 2/9/2017, IDC, Left, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 3/5/2017 Faslodex (fulvestrant) Targeted Therapy 3/5/2017 Ibrance (palbociclib) Chemotherapy 1/17/2019 Xeloda (capecitabine) Targeted Therapy
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Mar 5, 2017 12:55AM - edited Mar 5, 2017 12:58AM by jobur

My heart goes out to those newly diagnosed, you are probably in the shock and awe stage after learning you have mbc. But please don't plan your funeral just yet! (As I did when 1st dx'd) There are many new tx's (and more in development) that will allow you to live a pretty normal life for many years to come. If you are in pain, please make use of whatever pain meds you need now and believe that you are very likely to feel better after starting treatment. If you have no symptoms, so much the better! Make sure you have an mo you feel comfortable with. Write down a list of all your questions and insist on answers you can understand.  I believe (some will disagree) a biopsy of your mets are important for best tx results as it is possible for mets characteristics (ER/PR/HER) to be different from the primary.  Arm yourself with knowledge and get help (rx or/and counseling) if you start to slide into depression. The same goes for sleep problems, do whatever it takes (rx or ?) to get good rest. It is essential to healing and dealing.

Think carefully about who you want to know about your mbc. You can't "untell". Be patient with family and friend's reactions to your condition. Some people may come off as uncaring or inconsiderate because they just don't know what to say or do. Give them and yourself time to adjust to this new reality. Accept help when you need it. This is easier if you keep in mind how good it makes you feel when you can help others.

This forum is a fantastic place for both information and support. So glad you found us!

"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/3/2014 Arimidex (anastrozole) Hormonal Therapy 4/29/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/17/2019
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Mar 11, 2017 02:38PM Wildwoodbaby74 wrote:

hows your cancer now

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Mar 12, 2017 04:18AM Moderators wrote:

Wildwoodbaby74, welcome to the BCO Community. What is your situation with breast cancer? How can we help you specifically?

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 19, 2017 02:58PM - edited Apr 30, 2017 08:57AM by Tessio

This Post was deleted by Tessio.
Dx 7/2015, DCIS/ILC, Left, 3cm, Stage IIB, 1/2 nodes, ER+, HER2- Surgery 8/31/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 10/15/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast, Lymph nodes, Chest wall
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Apr 4, 2017 10:34AM NMJanet wrote:

Hello all. It's been almost 3 years since my diagnosis of MBC and I can tell you, it was so much harder the first year than it is now. Like many, my first thoughts were focused on dying, planning my funeral, getting my "affairs in order", etc. I spent most of the first year feeling very sad and crying a good part of the time. Every new ache and pain scared me silly. Nearing my 1 year anniversary, I totally fell apart so took myself to a doctor and got on an antidepressant. Seeing that doctor was one of the best things that could have happened! After listening to my story his words were: "Girl, go home and get your s*** together!!! Stop dying and start living!!" May sound harsh but it was exactly what I needed to hear. I've tried to live that way ever since and my life has been so much better. Yes, I still worry over every new ache and pain but take a pain pill and get on with my life. I go on vacations, shop, make all kinds of things, and live as normally as possible.

As many have suggested:

  1. Give yourself time. It's a shock and you won't be thinking clearly at first.
  2. Don't be afraid to ask for, and demand, any meds you need for pain, sleep, depression.
  3. A few sessions with a cancer counselor can be beneficial.
  4. After the shock is over, look into your financial needs. I didn't realize I qualified for Disability until 6 months later. Once I applied, I received my acceptance letter 3 weeks to the day. I completed the form online and then called in and talked to a rep, who was wonderful and compassionate. Yes, there was a 6 month delay from first diagnosis but since it had been 6 months when I applied, I received my first payment immediately.
  5. Some friends will disappear. Some friends will make it all about them and losing you. Some friends will go overboard. It's okay; no one really knows what to do and each person is different. Don't be afraid to express your needs.
  6. Your family may also get depressed and need help. Once you take care of your needs and get back into a good mental state, they will usually follow. If not, insist they get the help they need.
  7. Take the online statistics with a grain of salt. People are living longer with mets now and there are always new treatments coming out. Just because someone else died at 6 months doesn't mean you won't live 10 years or longer!
  8. Stay active! Take the classes you always wanted to take; go on vacations; visit all the places around you that you never take the time for, like museums and galleries; plant a garden; start a new hobby. Get out and enjoy life.
  9. Find something to laugh about everyday! Watch a comedy or stand up comedian. Find some funny pictures and put them on your fridge or mirror where you can see them everyday. Learn a new joke daily. Play games.
  10. Eat what feels right for you. Seems like I've been trying to lose weight my entire adult life. I saw a cancer nutritionist and her wonderful comment was: "Haven't you earned the right to eat what you want now?" Yes!! Instead of making me go on an eating binge, it took all pressure about food off and I ate what tasted good to me and stopped when I was full. After 2 years, I decided I did want to lose weight so found a plan that works for me. What works for me or you, may not for someone else. Don't pressure yourself about your diet! You can find a list of pros and cons for every single diet out there.
  11. Realize some days you are just going to be tired and need to take the day off and rest.
  12. Love yourself. Appreciate each day. Give thanks and be the person you'd truly like to be.

Best of luck to all of us!!!

Dx 12/24/2010, ILC, Left, 2cm, Stage IIB, 1/3 nodes, ER+/PR+, HER2- Dx 10/10/2014, ILC, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 2/8/2018 Faslodex (fulvestrant) Targeted Therapy 2/12/2018 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy Radiation Therapy Whole-breast: Breast, Lymph nodes
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Apr 4, 2017 02:24PM proudtospin wrote:

janet, thanks for your thoughts. It has only been a few months since the sleddge hammer hit me. Still in the shock and awe stage

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Apr 6, 2017 06:12PM NMJanet wrote:

Iris, I do remember that stage as if it was yesterday. Really tears you apart but even though it doesn't seem that way right now, it will pass. Not that we ever forget but at least we learn to continue living in the meantime. You might even find yourself laughing out loud or making jokes about it at some point! : ) I wish you the very best outcome and a very long life!! Many blessings, Janet

Dx 12/24/2010, ILC, Left, 2cm, Stage IIB, 1/3 nodes, ER+/PR+, HER2- Dx 10/10/2014, ILC, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 2/8/2018 Faslodex (fulvestrant) Targeted Therapy 2/12/2018 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy Radiation Therapy Whole-breast: Breast, Lymph nodes
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Apr 6, 2017 09:20PM Sadiesservant wrote:

Thank you Janet,

I am also fairly new to this and, while for the most part I am managing well, I do have my struggles. Others feel I am so strong but often I just feel sad. I am doing all the "get your house in order stuff" in the hopes that with a clear sense of where things stand I can move forward and embrace the time I have. But I seem to keep hitting road blocks. Most recently it was the knowledge that I may need to plan to cover drug costs which I thought would be covered in our Canadian system.

And then there is the question of work which keeps me awake at night. I do like to work and be productive but it sucks time, time which I might like to spend on more leisurely pursuits. I am also not sure what to expect if, at 55, I go on disability. I am fortunate to have a good plan at dork but it will be an adjustment both financially and psychologically.

I appreciate your sage advice. I know this period will pass but definitely this part of the journey is challenging.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/10/2019 Verzenio
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Apr 7, 2017 01:45PM proudtospin wrote:

janet,thanks for your thoughts,

Right now i am trying to distance myself from a pal who has made negative comments to me, basically telling me it is my fault since i worked in a printing company and they used nasty chemicals. If she really thinks that caused my cancer then she should shut the f up, course she also has critized me for using my one sweet and lo a day

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Apr 7, 2017 02:12PM DivineMrsM wrote:

Proudtospin, it sounds like a good idea to distance yourself from this person. Ugh! She is kicking you while you are down and trying you shame you for no good reason. Cut her from your life and make room for more supportive people.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Apr 8, 2017 09:30AM proudtospin wrote:

well it sure is unanimous to stay away from this person, actually someone fro my gym asked me if i thought she could be senile, maybe so and sad if so

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Apr 18, 2017 09:12AM debbie2 wrote:

thank you for the hope

Dx 4/15/2009, IDC, Left, 1cm, Stage IIB, Grade 3, 3/18 nodes, ER+/PR+, HER2- (FISH) Dx 2/14/2017, IDC, Left, 5cm, Stage IV, metastasized to bone/liver/lungs/other, Grade 3, 3/18 nodes, ER+/PR-, HER2- Chemotherapy 3/5/2017 Xeloda (capecitabine) Chemotherapy Other
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Apr 25, 2017 03:37PM Ottawa wrote:

I am wondering if someone could reach out a bit to me. I had 'low risk tubular breast cancer' about 46 months ago. Stage 1 grade 1 only 1cm. I completed a mastectomy and chest wall radiation. I am on tamoxifen. I am active, a good weight, I cruised through my treatment and returned to work in 10 weeks. I was just getting beyond the fear. Last Thursday I had images for my left shoulder as it was bugging me a bit the past month. The ultrasound showed the tendonitis and an inflamed bursa (no problem I can deal with that) but the x ray should a 4 cm destructive lesion in the proximal part of my humerus (suspect bone mets now). I am so shocked....how did this arrive with low risk BC? The doc says I need a bone scan (the lesion was not there 3.5 years ago), an MRI and CT of my pelvic area and a biopsy of the tumour site. Someone must know this kind of story?

Denise

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Apr 26, 2017 06:55AM DivineMrsM wrote:

Denise, i haven't had the same experience as you, but there are other women on this board who have progressed from a lower stage bc. I would wait to see what the scans and biopsy reveal. I know it is not a good feeling to wait to get the tests, then wait for results.

No one can say who the women are that will progess from seemingly low risk bc. Even healthy women with healthy lifestyles are sometimes affected. I am sorry I cannot be more positive. Its just that it does happen. There is a lot of media hype that bc is curable, but is it really? I am assuming you live in Canada because of your avatar name, and I don't know how bc is represented in the media there, but in the U.S., lots of pink hoopla and admonitions to women to stay perky positive so you "beat this thing" are the norm. That kind of coverage masks the harsh realities some other of us deal wih. The media often declines to cover those type of messages,tho.

I hope for the best for you. Please let us know how you are doing.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Apr 28, 2017 01:59PM Lee1963 wrote:

Hi Denise/Ottawa, I'm sorry that you too are going through this. I was diagnosed 3.5 years ago with IDC stage one, grade 2, er/pr+ and her2-. I had a lumpectomy and radiation, and believed I'd left it all behind me. In January I had a CT scan for diverticulitis. This lead to a bone scan, which lead to a detailed upper and lower CT scan as well as an MRI. Multiple areas of bone mets, spine, hip, and a few ribs. Now life is all about oncology appointments and treatment plans...all too surreal. I understand your shock, I never expected this to happen. I was one of the people that told others I was cured. I'll be treated at the Irving Greenberg Family Cancer Centre, I'm from Burnstown (west of Ottawa). Wishing you all the best, please keep in touch. Leeann
Surgery 9/20/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 3/1/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 3, 2017 05:14AM Moderators wrote:

Thanks everyone for adding your great tips and advice and please keep them coming!

Also, here is a slideshow created by our wonderful writers at BCO : A Guide To Common Terms You May Hear After Being Diagnosed With Metastatic Breast Cancer


To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 3, 2017 02:18PM proudtospin wrote:

Lee, sorry for diagnosis but it sounds like me

Dcis in 08, did all the docs recomened which was lumpies, rads and then did a full 5 years of the meds. I was ned for over 8 years when tummy pain lead to finding it had returned in my liver

Now and forever will be on the new nasty meds


iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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May 22, 2017 01:05PM Thicket wrote:

well hello there! I'm Stephanie and this is my first time posting. First of all, my love to all! Last summer I had a backache (really bad!), but I've been a server, bartender and cook for 20 years,( kept me able to be a stay at home ma🤡) so I just sucked it up and kept going, then really fast my left breast became swollen ( no lump) and shooting pains towards my nipple, so off to the emergency room I went. 2 days later 9/9/16 Stephanie, it's cancer- biopsy and pet scan.... Stephanie, it's stage lV her2 positive breast cancer. I remember clearly looking into Justin's (soon to be husband) eyes while feeling the oncologists breath on the left side of my neck while she was saying those damn words to me as the heat of my own body became overwhelming I just said to him, " I'm so sorry". We went home and I mourned my self for 2 weeks and thought hard about a way out of this but there wasn't/isn't. Soooo, I've chosen to obsess with diet, excersise and research! My best friend Loki 🐶🐾 is getting quite a bit of exercise too! I've always ate well and excersised so I thought but I'm healther than ever and have to admit I am happy. I know that sounds strange but I believe if you are willing to happiness will creep back in if you let it, I promise. Yes I worry about my son's Samuel and Elijah ( aka pride and joy) however, when I do go( got to one day, so does everyone else) I DO NOT want sad memories for them. I was my happiest the day I met them 1/14/96 and 1/6/98 I will leave happy because of them. So in short, I found obsession with nutrition my thing to occupy myself and it definitely won't hurt to say as fit as possible for this SOB called cancer.

TTFN Dx 9/9/2016, IDC, Left, Stage IV, metastasized to bone/liver/lungs, ER+/PR+, HER2+ Targeted Therapy 2/7/2017 Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy
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May 22, 2017 01:38PM Moderators wrote:

Dear Thicket,

Welcome to the community. We are sorry about your diagnosis but so glad that you shared your story with our members. We hope that you will stay connected here and keep us posted on how you are doing. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 23, 2017 01:22AM artistatheart wrote:

Great stories and advice here. Divine, right to the point you always are as Prouds friend is kicking her while she is down! My one main suggestions echoes jobber's. Be very selective and discretionary about who you tell. I was so naive and freaked out. I thought I was heading straight to harsh chemo, hair loss, and a vomiting mess. So I sent a blanket Email to all my co-workers. I regretted it to this day. It was only a matter of days before the whole town knew and my life has never been the same in a very weird surreal way.

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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May 25, 2017 08:45AM Moderators wrote:

Thanks artistatheart for sharing your experience and suggestions!

Anymore more tips from our members?

Keep them coming!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 6, 2017 04:25AM Mimi2kleh wrote:

Thank you all for the wonderful tips and insights! I can't believe how much I didn't know about MBC, even after going through the initial BC diagnosis and treatments. I just finished my five year hormonal treatment after MX and chemo, and a week later found the new mets while having an unrelated CT. I'm still in that shock stage, and why me, and all that, but I'm already finding myself pulling out of that, because of you all here! Finding this site has been a godsend. And the people posting here are so great, and so supportive. It is so good to be able to ask questions, and get answers and advice, from people going thru the same thing. And being educated, forewarned, and prepared for side effects of specific chemos from others taking it too, is invaluable. And to hear from so many, that have been going for years, with severe mets, gives such hope! Thank you one and all!

Dx 10/2011, IDC, Right, 6cm+, Stage IIIA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 11/11/2011 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 12/9/2011 Mastectomy: Right Chemotherapy 12/29/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/6/2012 Mastectomy: Left, Right Hormonal Therapy 7/21/2013 Arimidex (anastrozole) Dx 5/2017, IDC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone/lungs/other, Grade 2, 1/1 nodes, ER+, HER2- (FISH) Chemotherapy 5/18/2017 Xeloda (capecitabine) Hormonal Therapy 9/20/2017 Faslodex (fulvestrant) Targeted Therapy 9/20/2017 Ibrance (palbociclib)
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Jun 6, 2017 10:09AM proudtospin wrote:

i just learned something, when your rad center or onco office offers extra help, take it! First time i was sure i could manage but not this time. Means i will be seeing a nuititionist and a psychologist as well. Oh yeah, social,worker if i want also. And the anxiety med, yeap taking it

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Jun 13, 2017 12:09AM AnnBR wrote:

Thank you ladies for your sharing your hearts. You are an amazing and uplifting group of survivors. I was diagnosed with mets to the spine on May 5 so I'm still in a bit of a shock. I wake up thinking this is all a bad dream because I went from stage 1 to stage 4 in 4-1/2 years and had a very low oncotype score. I have to say that cancer taught me some timeless truths and for that I am thankful. I've got strong faith and an amazing support team, so I'll be just fine as I enter this new phase of my journey.

I have BATTLE SCARS on my body...but I have a PEACE in my HEART. Dx 11/15/2012, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/9/2012 Mastectomy Hormonal Therapy 1/17/2013 Surgery 4/30/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 5/13/2014 Femara (letrozole) Radiation Therapy 6/2/2014 Breast, Lymph nodes Dx 5/2017, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)

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