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Topic: Would you share your Stage IV story with us?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: May 18, 2015 08:14AM - edited Jul 16, 2020 01:01PM by Moderators

Moderators wrote:

We are constantly updating our content on metastatic breast cancer on our site and would really like to add your personal stories to help others who come here and have a more personal experience, with real member stories.

Would you write or video your story for us? Tell us: What has been the hardest part? What helps you most? What are things people have done that are helpful? What would be helpful to someone newly diagnosed, etc. Also, a photo of you, or something that represents you, which we could share along with your story would be very much appreciated.

******If you're just joining Breastcancer.org, thank you for introducing yourself and sharing your story with us! After you share, please consider joining in on our many other wonderful, supportive threads, where you can meet and discuss with others who have a similar situation.

We've got all types of threads, discussing tons of topics -- take a look through our forums and look up threads for your current treatment, your mets location, and any special interests you may have. For example, we have threads specific to taking Ibrance, or specific to bone mets, or exercise and metastatic disease; taking Xeloda, liver mets, or moms of young children, etc. We have a thread here for any situation. And, if you don't see something that meets what you're looking for, we invite you to start the discussion!

It's easy to do: just navigate to the forum in which you'd like to participate, click the link to the forum, select Start a New Topic, fill out the Subject and Body of the post, and click Submit. Don't forget to select the thread as a Favorite, so you can get notifications when someone responds to your post!

We look forward to hearing more from you and supporting you!

--The Mods

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Posts 61 - 90 (502 total)

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Nov 8, 2015 03:26AM travelnsurvivor wrote:

Hi everyone, I'm new to the community.

I am a long term survivor of Stage 4 metastatic breast cancer.

Six years ago I was diagnosed with Stage 2 Her+ breast cancer in my right breast. I was on chemo for 4 months followed by a part mastectomy (with lymph nodes removed )and radiation. At that time I was 31, able to enjoy my life, and even squeeze in a vacation in between treatment. I stayed on Herceptin for 1 yr afterward. It was tough but a total "cake walk" to what happened later.

A year and a half later, I found out after a car accident that the cancer came back. This time it was stage 4 with liver, bone, and lung mets. I was taken by surprise and pretty much told I had a few months at best.

Immediately, I started large doses of chemo (TC). That was the absolute WORST 5 months of my life! Due to the chemo, I spent most of my treatment in and out of the hospital and several terrible things happened including going into toxic shock, temporarily going blind, and kidney damage.

Three yrs later, I'm alive and striving ( Thanks to God)! I was able to retire very early from my job and spend my time living and enjoying my life. Mentally and physically it was tough, the first year after being declared in remission, but after some time I stopped worrying about the cancer coming back despite what the statistic say. The plan is for me to stay on Projecta and Herceptin for the next 7 yrs.

I wish every a well and happy life and if you have any question about my journey, feel free to contact me.

 

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Nov 8, 2015 05:01AM ChelleG wrote:

Hello traveln, what a lot you have been through and at such a young age. How old were you at the time of your stage IV dx? I am always happy to hear stories like yours, it really gives me hope! Thank you for sharing it. Love Chelle

Dx stage IV de novo 9/10/2015 with bone mets. Dx 9/10/2015, ILC/IDC, Both breasts, 2cm, Stage IV, Grade 2, ER+/PR+, HER2- Dx 9/10/2015, ILC/IDC, Both breasts, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 9/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 13, 2015 06:13PM babs6287 wrote:

Since I turned 40 I've always been nervous about developing BC. My Mom was diagnosed at that age and died shortly after her 42 nd bday. I was diligent. I always ate healthy, only drank bottled water, never smoked, rarely drank a glass of wine, worked out, nursed my children, did monthly self examinations and went for yearly mammos. Because I had very dense breasts before I turned 40 I had had 3 biopsies and even discussed a mastectomy with my BS who didn't feel I had enough risk factors at that time. When my sister was diagnosed with ovarian cancer (I was 48), I had a total hysterectomy and took evista.

July 2012 (almost 63 yrs old) we moved and I felt a lump on my left side which hurt so I thought I had injured myself during the move. (After all we always were told BC doesn't hurt!) Then a lymph node on the left side of my neck popped. Since I managed a derm practice I asked one of the drs what it was and he advised that I should go to my PCP if it didn't go away w/i 2 weeks. But my left breast kept hurting so I decided to go right to my radiologist for a mammo on 8/17/12. (I had my yearly in April 2012 and breast dr visit the end of April 2012). My radiologist called me into his office to tell me I had advanced BC. I was stunned! And how could he know that w/o a biopsy? He also showed me my scans from April and Aug and the first set was clear-the second set showed a white haze over 80% of my left breast. How could this be? The dr said I should go out for lunch and come back in 2 hours so he could do a biopsy so we would know the type, etc. When I got out of the office I called my DH and told him I needed him immediately and that we were both in trouble (he knew about the Dr visit so he knew what I meant by that). Needless to say, we never ate the lunch we ordered. We sat there in disbelief and utter shock. 2 hours later I had my biopsy and my radiologist told me that he had called my BS and told him what was going on. My BS wanted me at his office right after . He was in surgery and was going away for the weekend but would not leave NYC until he met with me.

My BS was also in shock and kept going over my last visit. He sent me right to an oncologist and we decided to do a mastectomy with full lymph node dissection (they knew it was in my nodes) My surgery was exactly one week later (ER+ PR+ Nu2- 16/26 positive nodes stage IIIC) and I started on dose dense AC & T 2 weeks from my surgery.

I am the type of person that has to digest everything internally by myself for a day and then I think about how I'm going to deal with and conquer a situation. Luckily I have a wonderful husband who understands me and is my rock when I initially fall apart.

Throughout my chemo and then 33 radiation treatments I worked which kept me strong and focused all the time. I did my chemo late Friday afternoons and was always back at work early Mon AM I spent most of the weekend in bed. But Saturday nights I made sure I got dressed, made up and we went out. I wanted my life to be more than cancer. When I could I would see my granddaughter and then granddaughters (there are 2 now) on a Sunday. I am very blessed that I have a huge circle of friends and family that are 100% there for me. My sister and my cousin were my chemo buddies (DH made me feel too nervous because I saw how he looked at me the first time I had my chemo) My DH and DD picked me up from my chemo treatments which was pretty amazing since my DD worked in Europe at that time but she arranged to have a biz trip to NY the weeks I had my chemo.

In Aug 2013 I had a rt PMX and recon. After my second fill I developed cellulitis, was hospitalized and lost the left TE. I waited a few months and did FG to the left side. Again I ended up with cellulitis and another hospital stay. Waited a few more mos, when my left side looked good ,did another FG and was fine. I waited again and had rt TE exchange and left a very small implant. During this time I was on anastozole with minimum side effects.

In Dec 2014 I decided to make my life less stressful, took a new job in the city and convinced my DH we needed to move into NYC when our current lease was up so we could be closer to our DD who had moved back to the US. Jan 2015 my TM went up for the first time so my MO sent me for scans which showed a regional reoccurrence (left clavicle and left inframammary lymph nodes) My MO was not very reassuring so I switched my care to MSKCC where I was put on Ibrance/Femara. Although my TM kept going up my first set of scans only showed indefinite activity on my spine. Tumor markers kept going up (except for 1 month) and next set of scans on Oct 1 showed mets to 5 spots on spine, liver, rt underarm lymph node. Stage IV for sure now. I recently started a clinical trial at MSKCC for GDC 0810. Thus far pretty manageable.

Since my original dx I have taken an alone vacation with my DD every summer-The last 2 summers in Europe-a gift from my DH to me. I want her to have the memories of these wonderful trips and he understands how important this is to me since I lost my own mom when I was 19). There is nothing better than spending time with those you love! This summer my DH and I took one of my bucket list trips- to Turkey and Greece. Next year if I am up to it we'll go to Israel. I want to spend more time with my delicious granddaughters but that's always an issue so I try not to stress over that (DIL has no heart and son is weak!)

I get my strength from those I love. I want to beat this BC for them. The one thing that does upset me is that I have sort of shied away from my father and step mom since my latest dx. My step mom can read me so well and I'm afraid she'll figure out something is wrong. Even on the phone she keeps asking me is something wrong! I hate to shut her out but my Dad is 94 and this would tear him apart.

Babs


Moderators-will try to send you some pictures from my phone-hope I can!

Dx 8/17/2012, IDC, 4cm, Stage IIIC, Grade 2, 16/26 nodes, ER+/PR+, HER2- Surgery 8/24/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/21/2012 AC + T (Taxol) Radiation Therapy 1/21/2013 Breast, Lymph nodes Hormonal Therapy 3/22/2013 Aromasin (exemestane) Surgery 8/29/2013 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/30/2013 Reconstruction (left) Surgery 1/28/2014 Reconstruction (left) Surgery 5/18/2014 Reconstruction (left) Surgery 10/17/2014 Reconstruction (left); Reconstruction (right) Dx 1/2015, IDC, Left, <1cm, Stage IV, metastasized to other, Grade 2, 16/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 2/17/2015 Femara (letrozole) Targeted Therapy 3/14/2015 Ibrance (palbociclib) Dx 10/1/2015, IDC, Left, Stage IV, metastasized to bone/liver, Grade 2, 16/26 nodes, ER+/PR+, HER2- Targeted Therapy 10/24/2015 Chemotherapy 1/1/2016 Xeloda (capecitabine) Chemotherapy 10/6/2016 CMF Chemotherapy 12/9/2016 Taxol (paclitaxel) Chemotherapy 4/27/2017 Gemzar (gemcitabine) Chemotherapy 6/21/2017 Halaven (eribulin) Targeted Therapy 8/10/2017 Chemotherapy 11/29/2017 Halaven (eribulin) Chemotherapy 12/14/2017 Doxil (doxorubicin) Chemotherapy 7/26/2018 Halaven (eribulin)
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Nov 15, 2015 09:00AM - edited Nov 15, 2015 09:39PM by Moderators

Awesome, thank you! You can also send it to community@breastcancer.org if it's easier.

Hugs!

The Mods

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Nov 15, 2015 09:21AM - edited Nov 15, 2015 10:12AM by babs6287

First granddaughter#1 Me and DH in Istanbul Turke

#2 My 2 granddaughters Molly and Emily

#3 Me and DH with oldest granddaughter Molly

#4 Me and DD in St Marguerita Italy

#5 Me and DD in St Tropez France

#6 The birth of Molly

#7 Me and DD at a spa in Lenox Mass

Dx 8/17/2012, IDC, 4cm, Stage IIIC, Grade 2, 16/26 nodes, ER+/PR+, HER2- Surgery 8/24/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/21/2012 AC + T (Taxol) Radiation Therapy 1/21/2013 Breast, Lymph nodes Hormonal Therapy 3/22/2013 Aromasin (exemestane) Surgery 8/29/2013 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/30/2013 Reconstruction (left) Surgery 1/28/2014 Reconstruction (left) Surgery 5/18/2014 Reconstruction (left) Surgery 10/17/2014 Reconstruction (left); Reconstruction (right) Dx 1/2015, IDC, Left, <1cm, Stage IV, metastasized to other, Grade 2, 16/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 2/17/2015 Femara (letrozole) Targeted Therapy 3/14/2015 Ibrance (palbociclib) Dx 10/1/2015, IDC, Left, Stage IV, metastasized to bone/liver, Grade 2, 16/26 nodes, ER+/PR+, HER2- Targeted Therapy 10/24/2015 Chemotherapy 1/1/2016 Xeloda (capecitabine) Chemotherapy 10/6/2016 CMF Chemotherapy 12/9/2016 Taxol (paclitaxel) Chemotherapy 4/27/2017 Gemzar (gemcitabine) Chemotherapy 6/21/2017 Halaven (eribulin) Targeted Therapy 8/10/2017 Chemotherapy 11/29/2017 Halaven (eribulin) Chemotherapy 12/14/2017 Doxil (doxorubicin) Chemotherapy 7/26/2018 Halaven (eribulin)
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Nov 15, 2015 09:43PM Moderators wrote:

Wonderful pictures, you have an admirable family babs! Thank you for sharing!

The Mods

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Nov 19, 2015 02:54AM jessica21122 wrote:

My name is Jessica, I am married and I have a 19-year-old son. My story begins In June 2013.When I was 38 I found out I had inflammatory breast cancer (left breast). There were also signs of cancer in my lymph nodes under my left arm. I immediately started chemotherapy the first week of July. The day I had my port put in is the same day my first chemo. The first chemo was the worst for me I felt so sick after the first one. I couldn't even get out of bed. I was receiving chemo every 2 weeks. The more times I went the less side effects I felt. I lost my hair about a month and a half after the initial treatment. At first it seemed like the chemo was doing its job but as time went on the tumor was not shrinking. My doctor then decided to do radiation and chemo at the same time. I will tell you that I personally felt like radiation was worse on me personally then chemo was. I could hardly swallow water my throat hurt so bad I was so weak I had to take breaks just taking a walk down the hallway. I did 28 treatments of radiation Monday through Friday. By the time I was finished I was burned pretty bad. The good news was it did it's job and the tumor shrank and alao detached from the skin so it was a very easy mastectomy. I was finished with the chemo and radiation in November 2013. I wanted to wait until after the new year to have the surgery. My skin healed very well from the radiation burns. I also started taking tamoxifen.

In January 2014 I had a left mastectomy and I also did the expanders for the reconstruction surgery. The surgery went well I had no issues. The expanders were very uncomfortable but it could've been worse. April 2014 I have a pet scan and everything's good, no signs of cancer anywhere!! In July of the same year I had the expander removed the implant placed and I had a reduction on the right side. Again, no issues. Everything went smoothly. In August 2014 I had my port removed and I saw my oncologist less and less. I still did my quarterly blood work and saw her. I thought everything was fine I was in the clear and I was ready to move on with my life.

February 2015 I go in to do my routine bloodwork And I get a call from my doctor telling me my cancer markers are high so she wants me to do A CAT scan and a bone scan. The scans show that I have a spot on my spine, lower back and my neck she immediately wants to start treatment. I start with the Lupron shot and another drug to push me into menopause. I have been doing the Lupron shots every month since February and then starting in September she switched it up I still get the Lupron shot but I'm also taking ibrance and femara. I take that for 21 days and I'm off for seven days. (Ibrance) My numbers have been up-and-down but not by a lot they go up a little they come down a little, nothing major. It's just nerve-racking that you have to go through this every month and find out what your numbers are,you do pet scans every couple months to see what's going on. It's a scary thing but I have great doctors wonderful family and friends that support me and boards like this are awesome because you get to interact with people that are going through exactly the same thing. Until this happened in February I never even knew what metastatic breast cancer was and I know that is what a lot of people say when they find out they have it.

So that's my story, so far so good. Thank you for letting me share it.

Dx 6/21/2013, IBC, Left, 4cm, Stage IIIA, 1/10 nodes, ER+/PR-, HER2- Chemotherapy 7/3/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/23/2013 Breast, Lymph nodes Dx 2/28/2015, Left, Stage IV, metastasized to bone Hormonal Therapy 3/3/2015 Targeted Therapy Ibrance (palbociclib)
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Nov 19, 2015 05:42AM Moderators wrote:

Hi Jessica, thank you so much for sharing your story! Would you be able to send us a photo to go along with your story? It doesn't necessarily have to be a picture of you, but can be something that represents you, if you wish to remain anonymous. You can post it here, send it to Moderators via private message or email it at community@breastcancer.org.

Thank you!

The Mods

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Nov 19, 2015 06:11AM jessica21122 wrote:

Absolute, here is a picture of me and one of me with my family.

Dx 6/21/2013, IBC, Left, 4cm, Stage IIIA, 1/10 nodes, ER+/PR-, HER2- Chemotherapy 7/3/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/23/2013 Breast, Lymph nodes Dx 2/28/2015, Left, Stage IV, metastasized to bone Hormonal Therapy 3/3/2015 Targeted Therapy Ibrance (palbociclib)
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Nov 19, 2015 07:17AM Moderators wrote:

You look stunning, wow! And you have a wonderful family. Thank you so much!

The Mods

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Nov 19, 2015 02:19PM - edited Nov 19, 2015 02:23PM by marynp

My story has been a bit of a roller coaster. When I was 36 I found a lump in my left breast (upper, outer quadrant.) I was a nurse (nurse practitioner, actually) and had even worked oncology for a couple of years (and had gone through breast cancer with my mom) but had not had a mammogram yet, since I was only 36. I saw my PCP, who sent me for a mammogram and IMMEDIATELY called me (before I even made it home) and told me that it looked like cancer and I needed a biopsy (bx) ASAP. bx confirmed cancer, had a mastectomy which revealed two positive nodes and was deemed to be stage 2b, ER/PR positive. I did, what they called at that time (2003,) "dose-dense" chemotherapy, followed by radiation, followed by tamoxifen. I did not go into menopause, and at that time I was not ready to lose my ovaries, so I was closely monitored over the years, with no signs of recurrence. Well, about 7 years out, when I was 43, I found a rock-hard lymph node above my left clavicle. I had an excisional bx of that node at a small hospital, in small town, in Ohio and the pathologist there immediately declared it to be "recurrent breast cancer." I consulted with an oncologist at a major medical center in Columbus and she agreed that it was likely recurrent breast cancer, but said they would get my tissue for further testing. I spent an entire month thinking I was stage 4, crying everyday. After one month (on the day before I was scheduled to start chemo) my oncologist called to tell me that this, in fact, it was not even breast cancer, it was papilliary thyroid cancer! So, at 43 I celebrated that I had thyroid cancer! (Crazy! But better than stage 4 breast cancer!) I had a total thyroidectomy and radioactive iodine treatment, and then went on with life as normally as possible. Well, about 4 years after that, when I was 47 (I will be 49 tomorrow) I began to have extreme fatigue and just some aches in various places, specifically my posterior ribs, mostly one spot on the left, and my hips. I went to my PCP and mentioned my hx of the cancers but she felt that, since it had been over 10 years since my original breast cancer diagnosis... recurrence was unlikely, so she encouraged me to get more exercise. I took her advice and became more disciplined about walking/biking/running. Several months passed and my energy level did improve, but pain in my ribs seemed to come and go (weird!) By June of 2014 the pain in one, posterior rib seemed pretty much constant and pretty severe and I also had pain in my vertebrae which took my breath away any time I went over a bump in the road, while driving or riding in a car. So, one day in June of 2014 the pain was so bad (and I was doing home visits to patients) that as soon as I saw my last patient that day, I went straight to my PCP's office and said, "If she can see me today great, if not then I'm going to the ER." She saw me, thought I had a kidney stone, and ordered a CT of my abdomen and pelvis. This showed a pleural effusion of my left lung, which lead to doing a CT of my chest, which showed a large, boney mass on my left, 8th, posterior rib. To condense this a bit (ha!) after multiple other tests and a bone bx, I was diagnosed stage 4, metastatic breast cancer, spread to MULTIPLE bones, probably my lungs (though that area was never bx'd), and later a lesion was found in my left eye. That was all at age 47, more than 10 years past my original breast cancer diagnosis. Once diagnosed, I resumed tamoxifen until after having a total hysterectomy with bilateral oophorectomy, and then I switched to an aromatase inhibitor. I was not able to tolerate the first AI (severe joint pain and just a sick-all-over feeling) so switched to another one which also has it's issues, but nowhere near as bad as the first one I tried. I just pray that I can remain stabilized long enough for them to come up with better and better options for stage 4.....and also for a miracle! I have never married or had kids, so do not have those reasons for wanting to make it a bit longer, but my parents have already lost one child, and it would be very hard on them to burry another. I am a Christian and I have the hope of knowing that this (often disappointing) life is not what we were originally meant for and I look forward to spending all of eternity with my Savior, dressed in a body that will never become diseased or die, so that is where my hope truly lies.

Will try to add a pic...not good at this!!!

Photo for breastcancer.org

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Nov 19, 2015 03:02PM marynp wrote:

trying to add a pic again!


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Nov 19, 2015 05:13PM Moderators wrote:

marynp, thank you so much! You are lovely! Do you want to add anything that may help to guide someone else new to this experience?

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Nov 19, 2015 08:16PM marynp wrote:

Wow, I wish I had some really good, guiding words! I feel like, even though I have had stage 4 for over a year now, I'm still figuring it all out. It is the most difficult thing in my life to try to live everyday with so much uncertainty, but I guess I would say, if you have just been hit with the stage 4 bombshell, you are allowed to cry everyday for a month... but eventually, take a deep breath and determine to live life. Strangely, this experience is an odd mix of nearly unbearable sadness at times, but also of deep, abiding joys in life. I am grateful for everyday that I feel good and can get outdoors and take in the beauty all around me.

Also, I often remind myself of what my mom has frequently said to me through this, "No one knows how much time they have. It is more real to you...but no one knows." We are not unique in that, even though the reality of our mortality weighs on us more than on most folks.

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Nov 19, 2015 09:49PM leftfootforward wrote:

I was 37 when initially diagnosed with stage 2b breast cancer. in Dec 2010. Underwent A/C followed by T/Herceptin. I had a bilateral mastectomy and did 36 radiation treatments. I stayed on Perception for about 8 months before my EF ratio fell and I had to stop. In December of 2012, I was diagnosed with metastatic breast cancer to my brain and my liver. Liver was too full of cancer to do anything but chemo. My brain mets were treated with Gamma knife radiation. Since then, I have been on Xeloda and Tykerb. In Feb of 2015, I had a craniotomy to remove what ended up being only necrotic tissue from my original gamma knife treatment. In July of this year, I had a partial left lobectomy of my liver to remove a solitary tumor. I was switched from Tykerb back to Herceptin. My last scans show that I am currently NED. I have enjoyed NED status most of my stage 4 life.

I would tell people to always listen to their guts and to never be afraid to ask questions. I don't read statistics, as they are outdated for some and really don't mean anything. We will always live the rest of our lives with stage 4 cancer so why bother with statistics. I would tell anyone to learn to ask for help. As a mother of 4, I have had to learn to let a little bit of control go to make my life easier. I have 4 kids (13, 10, 7, and 5) I have always been honest with them. I would tell everyone to choose how much they want to share with others. There is no right answer. You are allowed to share exactly as much as you feel comfortable with. But I do encourage others with stage 4 disease to seek help, whether it be meals prepared by others, cleaning services, childcare help etc. Find time to rest. Listen to your body and your mind. this is your own experience. Some will fight as long as they live and others decide to live out their days without treatment. It is your choice. Find the medical team and friends who support your wishes. I choose to live my life to the best of my ability.

A big thing is that side effects of drugs/treamtment can be managed. Talk to your doctors. I was so sick with A/C and on the 3rd cycle finally said something. A few changes and my 4th cycle was amazing. Changes in dosage of Xeloda have helped with my hand foot symptoms. BE honest about how you feel and see if your team can help make you feel better. Don't be afraid to ask stupid questions. There are none. And don't be afraid to advocate for yourself. Even if it means finding another medical provider.

this website is an amazing wealth of information and support. Try to find something that works for you. It can even be a non cancer group. I work out at the gym 3 times a week to get rid of that excessive stress. It can even be as simple as allowing yourself a cat nap during the day. And try not to feel guilty. This disease isn't your fault. It doesn't discriminate.

Me in Australia- our family took a trip there to live life. loved every minute of it


Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Dec 2, 2015 03:27AM Kateingermany wrote:

Hi

I was 39 when I got diagnosed with TNBC the first time in 2011. I found a lump and I couldn't believe that it would be breast cancer because I didn't seem to have anything in my family. We were living in Germany at the time and luckily the docs there move fast and I got a diagnosis super quick. My kids were only 3 and 5 then and I just couldn't believe it! I started chemo within 2 weeks - the dreaded red devil plus Docitaxel for 6 months. I got a complete remission and so had a lumpectomy and rads. I thought it was over...

In 2013 I felt a change in the other breast. My docs thought it was just my hormones returning to normal. The ultrasound and Mammogram were inconclusive so I asked for a biopsy. TNBC again and a very small lump. I did Taxol and Carbo for 5 months and had a complete response again. In the meantime, I did some checking in my family and found that my father's grandmother had had breast cancer in the 1960s so I got gene tested. I'm BRCA1 positive. We didn't notice the connection because it's my father's side of the family. I decided to have a bilateral mastectomy to remove as much risk as possible and also an oophrectomy.

A few weeks ago I found a lump on the skin above my implant. An initial biopsy told me it was a DCIS so I wasn't too worried. I asked for it to be surgically removed to give me peace of mind. Unfortunately it came back as invasive carcinoma and following a PET scan, they told me I have some tiny hot lung spots and a IM node. Total shock is an understatement! I am still coming to terms with the whole Stage 4 diagnosis...the hardest part is managing family expectations. They are all devastated and dealing with it themselves...

Meeting with my oncologist is reassuring and she has outlined the many options that are available for TNBC now. Many more than when I was first diagnosed. I am really appreciating all the stories on this website about how manageable the future pathways can be. I want to be positive and live life to the fullest - we certainly did that after the first diagnosis! Sometimes there are dark moments, but I find it inspirational to see how others can do it too!

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Dec 8, 2015 08:48AM babyduck wrote:

My Journey began.... at 36 I had baseline mamo. Of course dense breast, nothing to alert. So because of health reasons In 2013 our family got fit...lost over 100 together! December 13 I found it. I had successfully lost 50 pounds. Probably would not have found it. Anyway I went to dr. in Jan......of course they sent me strait to mamo and u/s. Thankfully! Dr. Pretty much assured me she thought is was because she has found one in under my arm. So I had the biopsy, saw, MO, saw, Plastic surgeon... Decision time! I chose chemo first hoping to shrink a 3 cm tumor. Started on Feb. 28, Taxol, 4 A/C. Pet in June! Liver met....What????? I've been fighting it! Oh well Here We Go. After I finished A/C...break.

Flew to NY went to Sloan Kettering for second opinion, ALL agree

August 14 start Garbo/Gem. Oct.....liver is clear.

Breast still growing plus one extra...comin go Jan 4 15. Easy to me!! After surgery clear margins.... for a month or so.....4 new tumors....Ok lets radiate! Done and worked! Sooooooo Just some lymphs with cells. Now its Hercptin and Perjeta till.......Whoknows!!

I'm a very religious person. I feel the Lord has a plan........Mine is just not as easy a others. Prayers for peace for you all!!!

Dx 1/31/2014, IDC, Right, 4cm, Stage IV, metastasized to liver, Grade 3, 1/5 nodes, ER+/PR-, HER2+ (FISH) Chemotherapy 2/27/2014 AC + T (Taxol) Chemotherapy 8/7/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Dec 13, 2015 12:16PM CancerSucks2001 wrote:

Hi Jessica,

Maybe I can't respond to you on this site, I see your KC Royals gear, and I live in LS, Missouri. Always looking for info and another stage 4 friend

Donna from Missour

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Dec 28, 2015 03:47AM - edited May 30, 2016 06:58PM by 10yrrecurrence

I am 69 years old and live in a lovely rural area in my country's smallest state, near the ocean. I am a newly-wed lesbian, marrying my partner of 31 years in April 2012 when it became legal to do so. We are empty-nesters, with two sons in their forties, and many family members and friends nearby. I am retired and my wife is still working full-time.

I have now been diagnosed with Stage IV Breast Cancer extensive bone metastases for almost a year-and-a-half. At first I joked they must have pulled up the wrong file because I felt so healthy, but now I am in pain and life is changing. Sometimes I can be grateful for how vital my sixties were and how great I felt and how much I contributed as a coach in the LIVESTRONG program of exercise for cancer survivors. Sometimes I am grateful I had an entire decade before recurrence and hope that means my cancer will be slow-growing. Sometimes I feel really afraid and sorry for myself and cry. At first I hesitated to use the anxiety or pain medications my doctors provided, but I am beginnning to use them more and more. Recently I discovered I had a new soft tissue tumor (previously unaffected breast) and that has really made me extremely upset.

I thought my bone mets were stable (the lesions on my occipital bones - back of skull - were partly necrotic in scans in October, an actual improvement!) but now I fear the next CT scans and bone scans (in January) will find tumors elsewhere in my body and that I will have a much clearer sense of a shortened life expectancy, an imperative to put my affairs in order.

There are so many posts it is hard to read through them all to find someone with a similar situation or cancer history to share encouragement and hope with. Of course, all Stage IV stories are relevant and I do browse on those sleepless nights.

Now that I am taking Ibrance/Palbociclib with Faslodex instead of Letrozole I am eager to hear if anyone else is doing this. I am also on Effexor 150 mg.

Dx 6/14/2004, Left-breast Adenocarcinoma, Stage III, ILC & Ductile, estrogen-positive, HER-2 negative, 1.5 cm, 6 of 9 lymph nodes positive Surgery 7/14/2004, Partial mastectomy left breast, axillary node dissection. Chemotherapy begin 8/25/04 (2 months) Dose dense: Adriamycin, Cytoxan, Taxol (1 dose less due to significant neuropathy), begin 8/27/2004 self-injected Neopogen. Radiation begins 2/25/2005, 33 doses + 3 boosts (1-week break for significant skin burns). Hormonal Therapy: begin 4/14/2005 Arimidex, take for seven years.

Breast Reduction Surgery 2012.

Dx 1/16/2015, Stage IV metastatic breast cancer, strongly ER+ (95%), PR+ (5%),HER-2 negative. Surgery 12/17/2014 Excision right shoulder mass. .9 cm carcinoma, subsequent scans show extensive osteoblastic metastasis. Chemotherapy/Hormonal Therapy begin 3/4/2015 with just Faslodex, followed by monthly Zometa and Faslodex for two months, then change to XGeva and Faslodex 5/13/2015, continuing monthly.

12/2015 Lump in previously cancer-free right breast is cancer metastasis, more strongly PR+ than previous breast cancer. 3/2016 Targeted Therapy with Ibrance/Palbociclib, started at 125 mg. capsules 21 days, but require 14 rather than 7 days off as immunity drops to zero. Month Three begin Ibrance/Palbociclib 100 mg. Bone scan 5/2016 shows possible new area of activity right knee (may be arthritis), no other changes. CT scan 5/2016 shows no new areas of concern.

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Dec 28, 2015 04:00PM living wrote:

Well I just learned that the fluid removed from the lining of my lung and heart contain my breast cancer cells. So here I am, not knowing what the future has in store for me

Dx 4/26/2012, IDC, 6cm+, Stage IIIC, Grade 2, 16/18 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 11/25/2012 Breast, Lymph nodes Hormonal Therapy 12/5/2012
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Dec 28, 2015 04:57PM - edited Dec 28, 2015 04:57PM by Hard2Bstrong

Living,

My thoughts and prayers are with you. Hopefully your onc will be able to get you answers. How did you know there was fluid around your heart and lung?

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Dec 29, 2015 04:21PM living wrote:

thank you for your support, i feel this is my best place to come for information. i noticed a dry cough a month or so ago, didn't even think once it might be cancer. i thought i just needed to get a humidifier out since the furnace is running now. i started noticing a slight shortness of breath, and just slowed down my step a bit. then i had a very restless night, difficult to be comfortable breathing. went to work as usual, then to dr. after work and he started me on a z-pack thinking i might have bronchitis. i noticed a tightness in my chest, and some unfortable feeling when i swallowed. then finally, i had such difficulty walking, i was so short of breath, and generally felt unwell. the night brought another restless night, so i finally went to er. after listening to my symptoms and blood work, dr ordered ct which showed an enlarged heart lining effusion and something in lung. i probably waited too long to go in because i was sent by ambulance to Mayo and within 2 hours of arrival, they did a bedside catheter to drain fluid from around my heart. the next day they drained fluid from my lung.

Dx 4/26/2012, IDC, 6cm+, Stage IIIC, Grade 2, 16/18 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2012 AC + T (Taxol) Radiation Therapy 11/25/2012 Breast, Lymph nodes Hormonal Therapy 12/5/2012
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Dec 30, 2015 03:34PM Heatherrichardson wrote:

My name is Heather. I live in Topeka, KS. I am married and we have a daughter, Temple, who is 9. I was diagnosed May 2013 at the age of 40. I went to the doctor complaining of pain in my elbow and upper inside arm. He arranged for me to have a mammogram. I just had one 6 months ago, but my doc was uncharacteristically serious about it. About 3 hours after my scan, they called to ask if I would come back in for more testing. The "further tests" were actually biopsies of a tumor in my right breast and lymph nodes under my right arm. I could see the jelly bean-sized tumor on the sonogram screen. I named him Poindexter.

I had a plan: double mastectomy with reconstruction on June 26. On June 6, I had a routine PET/CT to see if the cancer had spread. My Onc said "DON'T WORRY, IT HASN'T SPREAD". On June 7, we got news that I was Stage IV. IDC. Triple positive and super aggressive. Poindexter had spread to my bones and liver.

The surgery was cancelled. I got a chest port installed June 12 and started chemo the next day. After 4 rounds of carboplatin, taxotere and herceptin, I was in complete remission and have been cancer free ever since.

What has been the hardest part?
The hardest part for me is living in 6-month intervals. I plan my life around PET scans. I hate it.

What helps you most?
Honestly, I think the therapist at the cancer center has been the greatest help.

What are things people have done that are helpful?
I would have liked it if friends and family understood and accepted the diagnosis. Instead, they think I'm cured. When I talk about recurrence, they accuse me of being negative.

What would be helpful to someone newly diagnosed, etc.

  1. Get your affairs in order. Just in case.
  2. Accept any and all help that is offered. Don't assume you will be able to resume normal activity during treatment. There will be days when you can't even walk without assistance.
  3. Tell your Onc about all side effects and pain from treatment. You're not a hero for toughing it out. You're an idiot who's in pain.
  4. DO NOT compare yourself to others regarding side effects from treatment. Facebook says Mrs. Smith exercised every day during her chemo. Big deal. You're not Mrs. Smith. Everyone reacts differently to treatment. Say it again: EVERYONE REACTS DIFFERENTLY.
  5. Last one: It's okay to play the cancer card once in awhile. Be strategic and use it sparingly. It's okay, though. You earned it.
NED since 8/23/13. Dx 5/24/2013, IDC, 2cm, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 6/12/2013 Herceptin (trastuzumab) Chemotherapy 6/12/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/4/2013 Perjeta (pertuzumab)
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Dec 30, 2015 03:46PM Moderators wrote:

Dear Heather, Thank you so very much for sharing your story. We know that it will help others. We appreciate it. The Mods

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Dec 30, 2015 05:42PM Mab60 wrote:

Hi heather. I can relate to your comment about friends and family. While I have not shared my stage 4 diagnosis outside my family, I find it difficult to talk openly with my family as well. I also feel they perceive as negative. I think with people close to you there is most likely nothing they would not do but they cannot make the situation go away which maybe leaves them helpless. I don't know. One sister actually told me today that she is damned if she does and damned if she doesn't. Left me feeling like wth. I think most people that are not living stage 4 don't realize we are not looking for remedies. There aren't any. Just want understanding. Compassion is very hard for some to give if they have not lived it. Unfortunate because now is the time you need them most. Instead you end up turning to BCO where there are others like you. Stage 4 has been hard for me

Dx 6/11/2015, IDC, Right, 3cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 6/11/2015 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 7/29/2015 Femara (letrozole) Hormonal Therapy 11/4/2015 Aromasin (exemestane) Dx 11/5/2015, IDC, Stage IV, metastasized to bone Radiation Therapy 12/13/2015 External: Bone Hormonal Therapy 1/20/2016 Faslodex (fulvestrant)
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Jan 6, 2016 11:33PM Jacci wrote:

2008 I had a dipple on my left breast , they gave me chemo and then I had a bilateral mastectomy , I wanted my right breast off too, I never wanted to through chemo every again. Come to find out cancer was in my right too so I was told good call. It was long and hard I had a flap done and didn't take too good so lots of surgery. Then I refuse hormone therapy, because I was never getting back the cancer with the faith of God. So in 2013 I fell went to the ER and was told that cancer went into my neck bones. So back to my Dr. I was given shot untill they stop working July 2015 spread to more bones so I went on chemo pill Darepoetin, I stay on the pill for 3 mths had bad reaction. Now I have a port and I get Paclitaxel once a week for three weeks one week off , today I Aranesp because my body won't make red blood cells , which means my CBC levels will be low and I can't have treatment . Chemo for the rest of my time.

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Jan 7, 2016 12:11AM lifer wrote:

At the end of 2014 I developed a cough that got worse whenever I ate something, and I had constipation like nothing I had ever experienced. I was SOOO thirsty, but my blood sugar level was always good. Finally in Feb. 2015 I had gotten to the point that my heart was racing and my breathing so labored with any kind of physical exertion. I went to my local clinic thinking I had pneumonia and maybe a hiatal hernia. An x-ray revealed my left lung had collapsed. Then the CT showed the tumor on my right breast- so large they kept asking if I had an implant (8.5cm) lol! . I had often had swelling in that breast with my menstrual cycle but thought it was fibro-cystic like my Mom and sis had. As I became sicker during those months it had worsened, but I never dreamed it was the main cause. I had a thoracentesis done to drain the lung, mammogram, then a core biopsy on the breast, then a needle biopsy. The results were IDC, Er+Pr+Her2- , Stage 4 with mets in lung and bone. Shortly after that I had to be admitted to the hospital because the lung had filled back up. This time I had a thoroscopy and scarification of the pleural lining, then suction to keep it drained for 9 days. Within a week after getting out of the hospital I started chemo. First 4 (or 6, not sure) rounds of AC, then to Paclitaxel once a week for 3 weeks then 1 week off. I got the last dose of it on Nov. 17. Neuropathy is becoming a real problem. Going to Dr. tomorrow, Jan 7th to see what's next.

I am 49, single, and Mother to a 3 year old son.

Dx 2/17/2015, IDC, Right, 6cm+, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2-
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Jan 7, 2016 06:08AM Moderators wrote:

Hi Jacci and lifer - welcome to Breastcancer.org! We're so sorry you have to be here, but so glad you found us and decided to share your story with all of us! We wanted to ask: would you be able to send us a photo to go along with your story? You can send it via private message to Moderators if you don't want to post it here, let us know if you need help with that. It can be a picture of you or something that represents you, if you wish to remain anonymous.

Please don't hesitate to reach out to us if you have any questions, we're here for you!

Best wishes,

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Jan 11, 2016 09:15PM FloridaRN wrote:

I am so sorry. This diagnosis does stop your life for awhile. But, it can also change you in a good way too. It will slow you down and teach us how to live life in the moment. It is a rollercoaster of emotions. I find night time to be the worse. I watch funny shows, laugh every day and when I start to think about the cancer negatively I control my thoughts. I have no idea how much longer I will be on this earth. I understand there is no cure. But, I refuse for cancer to steal my happiness. It is already stealing my days on this earth. it will not steal my remaining days from being happy days. I have control of that!!!!!

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Jan 12, 2016 12:03AM Moderators wrote:

Hi Florida-

Thank you so much for sharing your perspective! You absolutely have control over making your days as happy as you can! Welcome to BCO, and again, thank you for sharing!

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