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 IV or Mets.

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

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

To send a PM to the Mods: community.breastcancer.org/my/...
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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?

To send a PM to the Mods: community.breastcancer.org/my/...
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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+, Chemotherapy 2/28/2014 AC + T (Taxol) Chemotherapy 8/8/2014 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 5/7/2012 AC + T (Taxol) Radiation Therapy 11/26/2012 Breast, Lymph nodes Hormonal Therapy 12/6/2012

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