Would you share your Stage IV story with us?
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
Comments
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I am 68. In 2004 I found a lump in my left breast. A mammogram and ultrasound revealed nothing. A biopsy found both ductile and lobular breast cancer. Ancillary lymph node surgery found 9 nodes positive for cancer. I was Stage III.
I had more surgery for cleaner margins, dose-dense ACT chemotherapy, and 31 radiation treatments. I took Arimidex for seven years. I was greatly aged by my treatment, fell frequently and had injuries due to fatigue, poor balance, and neuropathy in my feet.
In 2007 I discovered the LIVESTRONG exercise program for cancer survivors, which helped me tremendously both physically and emotionally. I eventually retired early to work in the program as a coach. I am currently teaching my 12th group of survivors of cancer of all kinds; the program meets twice a week for 75 minutes for three months and is offered free of charge.
In October 2014, I had a mammogram that showed nothing. A month later a strange lump appeared on my right shoulder. Surgery revealed metastatic breast cancer. Scans revealed extensive bone metastasis: skull, shoulders, ribs, spine, hips, and femurs, but no brain or organ cancer yet. I am Stage IV.
I have had three months of Zometa and Faslodex and have now changed to XGEVA and Faslodex, in hopes of better delaying a skeletal event. It is my understanding all treatment is palliative and that XGEVA will not extend my life. I have opted not to have spine radiation at this time but will reconsider when I am re-scanned (after a year?) or when I am more affected by pain.
I have a small group of excellent friends who drive me to my monthly treatments and spend some distracting quality time with me on those days. I do some psychotherapy, some hypnotherapy, some meditation. I drink Pao d'Arco tea and walk 3 miles at least 3 days a week. I returned to church where there is an active Caring Committee that could eventually help with meals and chores. The LIVESTRONG classes, coaches, and graduates are a supportive community as well.
Uncertainty is hardest right now because I haven't any bone pain to speak of. When will my bones start breaking? Will I live in a wheelchair? How dependent will I be on caregivers? Will I live 2, 5, 20 years? What is it like to die of this?
Here I am before my new diagnosis, making 'V"'s for victory over cancer after a fundraising event in my state, Rhode Island.
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Hi,
I'm Terri and have been diagnosed with inflammatory bc & invasive ductal carcinoma with spinal bone mets (stage IV) from the start in 6/09. With inflammatory, chemo is the first treatment before surgery or radiation. I did 8 months of tac chemo and a bi-lateral mastectomy a year later. I'm ER+ so was placed on Femera and Zometa for the bones. My PET scans were stable for 4 years before recurrent bone mets & a lymph node started popping up. I was then switched to Aromasin & Affinitor and Xgeva for the bones. I did not tolerate Affinitor too well and showed more bone mets the year that I was on this treatment, so we dropped the Affinitor. I will wait for another PET scan result to see my status before switching again to new treatment such as Faslodex.
The hardest part: knowing this is not curable and that I may not see my son marry & have his own children. I have however been very blessed to see him graduate from high school and entering college.
What helps the most: Due to having stage IV; I know my medical team will watch me closely. I have PET scans every 3 months if anything shows up on them and every 6 months if they are clean. I know my doctors can address issues early when they arise, which has kept me alive and well for 6 years now.
What have people done that is helpful: I have some wonderful friends and family that offer me support, even taking me out for lunch or flying me home to Chicago from the west coast to see my brothers & sisters. One of my sisters and my niece came out for 3 weeks to help me with surgery. I've even had strangers who gave me flowers when they heard I was diagnosed. I am totally amazed by the kindness of people, especially strangers. This community site has been especially helpful for each part of this journey. You can actually communicate with others going through the same procedure and get tips on handling a treatment or surgery. You don't feel alone.
My son and I when he went to his senior ball this year!
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My name is Jenny. I am 32 and last year fought 2b Triple Negative breast cancer. I found it by change and the next day was in a walk in clinic. Thankfully the doc didn't brush me aside and 3 weeks later I was in a chemo chair. 2 weeks ago I was told my cancer is back and I am now stage 4. It is back in my chest and on my diaphragm. I vlogged my whole journey and hope to continue to share.
https://www.youtube.com/watch?v=RWTA4TPNWuE
The hardest part is knowing this might take me away from my children. I have a 3 year old and a 7 year old. I don't want their memories of me to be me sick. I worry that my youngest won't remember me at all. I also worry about my husband. He will be 30 this year, too young to be a widower.
What helps me through it is my family and friends. I am so thankful for my doctors who have never for one second blown me off due to my age. I think because I've been so open about what's going on people want to help. I never have worry about anything but the cancer. I mentioned very briefly that Disney was on my bucket list and in less than a week it was all planned out. I have been blown away but people's kindness.
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Thank you so very much!! Please do keep them coming, and remember, we'll be adding the stories to this page:
http://www.breastcancer.org/community/acknowledgin...
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Hi! I'm Jessica and I was diagnosed with stage III invasive lobular breast cancer with ductal components on May 29, 2013. I am a nurse and work in a hospital with a big oncology program so I was able to be seen quickly. Less than two weeks after finding the lump, I had my first chemo treatment. I did 4 rounds of Adriamycin and Cytoxin followed by 4 rounds of Taxol. Then I had a bilateral mastectomy (10 of 13 lymph nodes still had disease) with reconstruction followed by 33 radiation treatments. Then I started tamoxifen. In April of this year my oncologist ordered an MRI to screen me for pancreatic cancer (I am BRCA2 and have a family history of pancreatic cancer.) The MRI showed that my pancreas was fine but I had spots on my liver and spine. I am currently taking Ibrance and Femara and XGeva. Luckily I am symptom free from the mets and am not having too many side effects from the meds.
The hardest part for me is the idea that I may not be here to see my son grow up. He is only three and I can't stand the thought of leaving him. I am determined to beat this and keep doing whatever treatment is necessary until they find a cure.
What helps me most is knowing I have an amazing oncologist. She is very dedicated to her patients and I know she will keep fighting for me and taking great care of me. I also have an amazing family and group of friends. I too have been amazed by the kindness of strangers. People I don't know have prayed for me and sent letters and cards. It's been incredibly humbling. My faith is also a huge help to me. I know I am in God's hands and that gets me through the tough days.
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I am Ellen, age 56 at dx., currently approaching 61. In September 2011 I was dx with Stage 3B IBC. I had chemo, unilateral mastectomy, chemo, radiation and a year of herceptin, finishing Feb 2013. In June 2013 I had a CT Scan where mets to my adrenal gland were found. After numerous tests and appointments to an endocrinologist, it was determined that my IBC had spread. I resumed treatment in August 2013 and have been NED since October 2013. Although I consider myself very fortunate, I continue in treatment, Herceptin and tykerb, with CT Scans approximately every 6 months. It is so very frustrating to know there is not enough research to determine if or when I could stop treatment. So I continue in treatment, grateful knowing so many others do not do as well, but worried about the side effects of long term treatment. Extending my life and that of others, with the possibility of debilitating side effects, should not be the goal. Cure should be the goal!I was separated at the time of my initial DX. I have 2 children, a son soon to be 22 and a daughter soon to be 17. This has been the most difficult part, to look at my children and know I may not be here for graduations, new jobs, boyfriends/girlfriends, grandchildren, good news and life's challenges. Their Dad is in the picture, but does not have his "ear to the ground" in the same way I do. I do not want them adrift with out support and guidance as they move into adulthood. No matter our age - we always need our parents.
The most significant support has been from others traveling the same path. To sit with others who "get it" and share our greatest fears, laugh and cry has been so important. I have great friends and family, but it has been others with MBC who have been my strength. Family and friends have brought meals, driven, listened and tried to understand. They have been wonderful. But unless you are wearing these shoes, it is almost impossible to be fully present and understanding. Do not be afraid of making those connections, they will be invaluable.
I am living my life with stage 4 cancer, I laugh, work, raise my children, travel, have good days and challenging days. My days look much like those not living with cancer. But stage 4 is sitting on my shoulder, voicing an opinion in every decision I make. Stage 4 is a weighty companion.
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Thank you so much for these stories!
Bumping for more -- PLEASE SEND THEM IN A PM if you'd like to share! Thank you!
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My story is so upsetting because I did what I was supposed to do and feel like I was failed by my doctor. I found the lump in my breast in January 2014. I immediately went to the doctor with my concern. He conducted a breast exam and told me that I was 34 at the time and it he could tell that it was only a cyst and that I shouldn't worry about it. 2 months later I had my annual exam and he did a breast exam and again told me not worry and because it was a cyst. So I didn't and I enjoyed life, worry free. Fast forward to April 6, 2015. It is time for my annual exam and he feels the lump and I wence in pain as it is a little sore. Now he feels like I should have it checked out. An ultrasound and mammogram later, I am diagnosed with poorly differentiated IDC and high grade DCIS. I was soo angry at this point! So...I meet with a team of doctors and decide I am going for a bilateral mastectomy with reconstruction. I had finally wrapped my head around the diagnosis. My onc on May 11th prescribed a PETscan for me. It took 11 days to get scheduled. On May 29, 2015 I got the PETScan and prayed. Unfortunately, my liver had two small lesion that lit up. Utter devastation. I am 36, no children, not married and 2016 was the year I had planned on starting a family...and now I deal with the heartache of having that opportunity taken from me I have been having a super difficult time with all of this. I know there is no cure for this disease and my friends and family are so positive and optimistic that I will be around for a very long time...I just am not there yet. People say it is not a death sentence...but isn't it?....I know, I need a to change my mindset...still just having a difficult time managing all this!
I haven't met anyone physically yet with this diagnosis, so I am hoping to get encouraged from reading posts in this forum. There is so much that I want to see and accomplish and I don't want this diagnosis to stop me from living out my dreams!!
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Mdillard-
Thank you for sharing your story with us, as difficult as it is. We are so sorry that your doctor wasn't as aggressive as he could have been, it's so difficult to reconcile with your diagnosis when you haven't yet made peace with it. Hopefully you find your way there soon, in your own time.
Our Stage IV forums are full of people who have been where you are now, and we noticed you've already found the liver mets thread. Hopefully you'll connect with other women in your shoes, and find the support you need to work through this. We are all here for you, and you are not alone!
The Mods
(If you're ok with us using your story on our Acknowledging Our Members page, would you be willing to include a picture? You can post it here or send it to us via pm!)
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My partner had grade2 mucinous carcinoma two years ago and a mastectomy was not done by our local hospital as they stated it was unnecessary, unfortunately the cancer game back two years later and she developed metastatic breast cancer and she sadly passed away last week. It will always be on my mind that if they had removed the breast two years ago would she still be here. The treatment she received from the UK NHS was appalling and even when she was laid on her death bed they insisted on moving her because they needed that room for someone else. Not once in the four months she spent living with this cancer did anyone from the hospital tell us that it was terminal until 10 days before she died. I had intended to take her to The Oasis of Hope hospital in Mexico if I was informed that the NHS could do no more for her, but they left this until ten days before she died, by this time she was to weak to travel. On the last day of her life I watched a nurse give her a lethal dose of morphine without consent, even though she had stated in the past she wanted everything to be done to try and save her.
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Dear Estevimiluxxx1, We are so sorry to hear of your partner's death and the circumstances around it. You may receive additional support in the Forum for Family Members of those with stage 4 Breast Cancer where others have been or are supporting a loved one. Again our condolences to you. Thanks for telling your story. The Mods
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I am posting this in the hopes of getting some insight/direction from mods or from anyone else. I was first diagnosed with TNBC Left Breast in Feb/2012. Had Lumpectomy, node negative, Mammosite radiation and ACT for Chemo. Diagnosed in Oct/2013 (about 1 year after finishing first chemo) in same breast, Considered new primary, TNBC stage I, had double mastectomy, no reconstruction, CMF chemo. Both times very fortunate to get thru surgery and chemo with very little side effects. Now exactly a year after finishing treatment I had an MRI and CT scan that shows mets to brain and lungs. Having PET scan and another CT to check on bones and liver. Talked to a neurologist and brain radiation oncologist about treating brain mets. Waiting to talk to lung doctor about how to treat lungs. I don't have pathology yet for this latest finding but I am assuming it is also TNBC.
So I would like to know if there is an order to follow regarding treatment. Has anyone had any success with any particular treatment for a similar diagnosis? I have been reading about immunotherapy and different chemos targeting different proteins and receptors.
Thanks for reading.
Deb
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Hello. I am 39 years old. I was originally diagnosed at age 34 with Stage I IDC with lympho-vascular invasion, but clean lymph nodes. I had an oncotype of 16, yet still chose to have chemo. I had a bilateral mastectomy with failed reconstruction and many surgeries for MRSA. I tested negative for the BRCA gene and the BART gene. I have no history of breast cancer in my family. I have been on Tamoxifen for five years in December.
Fast forward to April 2015, I went for my five year check up and my tumor markers were slightly elevated, so the oncologist did a chest xray and brain scan. The brain scan came back clear, but the chest x-ray showed pneumonia. I had no symptoms of pneumonia, so he said we will keep an eye on it. In the middle of May, I started getting a temp so they prescribed me Augmentin, followed by Bactrim because the fever would not go away. A second chest xray revealed a pleural effusion, so I was sent for a CT scan. I had a thoracentesis done and had a liter of fluid removed. The fluid revealed ER/PR+ cancer cells, so it is considered a recurrence and stage IV. I had a PET scan this past Friday, and I will find out where else it has spread tomorrow.
The hardest part, right now, is seeing my son, husband, and my parents being so devastated. My son is 19 and he wants me to see him get married and have children. He is my only child. My husband has no children and we had been trying to get pregnant. That is not an option now, so that is pretty heart breaking for him. I am an only child as well and my poor mother is a mess. Another thing that is upsetting is that I received my associates degree as a registered nurse in May 2013 and I am currently working on my last 4 weeks of school for my Bachelor's degree. It feels like wasted time. I am sure I will get more positive as I get my treatment plan underway, but right now it is pretty depressing.
The thing that has helped me so far is all of the prayers and messages on Facebook. I never knew how many people really cared about me. I came to this site in 2010 and the people here really helped me through some tough times. I know that they will help me again. Thank you.
Me and my son at his high school graduation last year.
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Mybcteam.com name is Kathy Pride and I live in Littleton, Colorado. I was a successful licensed hairstylist for many years until March of 2013. Standing on my feet for years, I am no stranger to back discomfort, but one particular day, the pain was excruciating so I went to the hospital hoping to find some relief. The medical staff ordered an MRI and returned with the news I have stage 4 breast cancer that metastasized in my bones ( back, spine, hips, ribs, shoulders ) and was given only 2 months to live. Seeking treatment elsewhere, I found hope from an oncologist at the University of Colorado Anchutz Cancer Center. There I endured almost a year of chemotherapy, once a week, 3 biopsies, and 3 rounds of radiation. I'm blessed to say that after 2 years later, I'm continuing to win the battle over cancer. Many say this is a miracle, including my medical team, as I stay active with various national and local cancer associations, go to the gym 5 days a week, and most recently opened a new business, Wigs and Beyond.
Due to all the treatments I've received, and am still receiving, I feel I can offer encouragement, inspiration, and even hope to other women or younger gals who have cancer. Besides finding the right headwear to boost a woman's confidence, I have a full understanding of how traumatic hair loss is and also eeffects of chemotherapy and different medications. If a woman is unable to leave their home or isn't quite ready to go out, I offer in home services.
I'm located within a women's boutique along with a full time esthetician, providing a fun and caring atmosphere. Throughout the year we host Indulgence Nights, Fundraisers, and Special Events to help support our community and even individuals. My goal is to give everyone a great experience and hopefully develop new friendships. Blessings to all of you, Kathy
If anybody wants to contact me; my address is
Wigs and Beyond 10143 W. Chatfield Ave Suite #13 Littleton, Colorado 80128
Email Address: katpr320@gmail.com
Phone:
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My name is Kathy Pride and I live in Littleton, Colorado. I was a successful licensed hairstylist for many years until March of 2013. Standing on my feet for years, I am no stranger to back discomfort, but one particular day, the pain was excruciating so I went to the hospital hoping to find some relief. The medical staff ordered an MRI and returned with the news I have stage 4 breast cancer that metastasized in my bones ( back, spine, hips, ribs, shoulders ) and was given only 2 months to live. Seeking treatment elsewhere, I found hope from an oncologist at the University of Colorado Anchutz Cancer Center. There I endured almost a year of chemotherapy, once a week, 3 biopsies, and 3 rounds of radiation. I'm blessed to say that after 2 years later, I'm continuing to win the battle over cancer. Many say this is a miracle, including my medical team, as I stay active with various national and local cancer associations, go to the gym 5 days a week, and most recently opened a new business, Wigs and Beyond.
Due to all the treatments I've received, and am still receiving, I feel I can offer encouragement, inspiration, and even hope to other women or younger gals who have cancer. Besides finding the right headwear to boost a woman's confidence, I have a full understanding of how traumatic hair loss is and also eeffects of chemotherapy and different medications. If a woman is unable to leave their home or isn't quite ready to go out, I offer in home services.
I'm located within a women's boutique along with a full time esthetician, providing a fun and caring atmosphere. Throughout the year we host Indulgence Nights, Fundraisers, and Special Events to help support our community and even individuals. My goal is to give everyone a great experience and hopefully develop new friendships. Blessings to all of you, Kathy
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My name is Celeste, I am 52 years old. In May 2010 I was diagnosed with stage IIIc
Invasive Lobular Carcinoma in my right breast with 3 of 10 lymph nodes
positive. I had a mastectomy with
immediate reconstruction (I don't recommend doing this!). The reconstructive
portion of my surgery did not go well; I had a tram flap procedure and ended up
with open wounds and a staph infection.
I had open wounds during chemo and radiation. I had another surgery to try and improve the
reconstructed breast, but I've learned that only God can make a breast, a
doctor can only do so much. I lived
carefree on Tamoxifen for a few years when a cough, shortness of breath and a
tender spot on my chest in July 2014 prompted a chest x-ray which lead to a CT
scan which confirmed the cancer had spread to my bones (sternum & spine),
both lungs and a small lesion on my liver.
A brain scan showed no disease! I
had 6 months of weekly chemo and enjoyed over 4 months of rapidly falling tumor
marker numbers while on Femara. My
doctor added Ibrance when the numbers flat-lined and I am finishing week three of
my first cycle.Knowing I have incurable cancer has made me finally learn to
not sweat the small stuff. Most days I
feel lucky and grateful but there are many days (and especially sleepless
nights) when I struggle with hurt and anger over why I have this awful disease.
The hardest part has been to watch my
husband and two sons (26 & 25) struggle with the fact that this disease
will kill me. In many ways this disease
has been hardest on them. I have been surrounded
with love from my family and friends and that has been my biggest
blessing. It has been most helpful when
people have made me laugh and even when they have been annoyed or mad at me
because it makes me feel so normal.I am hopeful for the future.
My hope is that the Ibrance/Femara combo will work at keeping my disease
at bay for a very long time. My hope is
to keep working, travel with my dear husband of 28 years, enjoy time with my
sons (one is married the other has a great girlfriend), and get to be a
grandma! (Soon please, but no pressure.)
Cancer may rob my body of future years on this earth, but I won't let it
rob me of the hope and joy I feel now.0 -
In the spring of 2011 at age 49 I was training for my second running of the Boston Marathon and was really struggling. Constantly tired, a backache, getting slower instead of faster on runs, occasional nausea and having a lot of night sweats. I attributed it to a combo of approaching menopause and extreme training. Nice timing menopause is what a thought. For marathoners, qualifying for and running Boston is like a personal Olympic moment. During what is called taper for the marathon (the three weeks before the race where training is scaled back) I did not experience the return of energy as I had during previous race training cycles. I ran the race but vomited several times, had terrible chafing of my left nipple, and was an hour slower than the previous year. I decided in consultation with members of my running club (who needs a dr.?!) that I had overtrained. I quit running my daily workouts for a couple of weeks. I still was tired and the cracked nipple had never healed so I decided it was time for a physical, 7 months since my last exam and mammogram.
When I saw the dr. and he asked about the earlier appointment I explained the tiredness and then showed him the scabbing on my left breast. I could tell from his face that it wasn't good. He asked permission for a picture so that he could email it to a colleague, he would not include my face. He told me he'd be right back, I took deep breaths and counted ceiling tiles in his absence. When he returned, he said that he wanted me to see the surgeon down the hall right away, as in that hour. An immediate biopsy of the skin surrounding my breast and 2 days later the surgeon, whom we've nicknamed Dr. Doom called us in for the results, stage 4 metastatic breast cancer, then he said 2 years. No love for Dr. Doom and his bedside manner, but he did get us an appointment for an oncologist right away, as in that hour. On the drive to the oncologist office, I was still in shock, knew nothing about stages and that 4 was bad and didn't know what metastatic meant. I said to my husband, 2 years of treatment is going to be tough. He replied, I think he meant 2 years to live, I think an oncologist giving up his lunch hour to see you immediately is probably not a good sign.
The wonderful Dr. K tsked, tsked about the 2 years when we explained what was going on. He used hopeful terms such as incurable but treatable. A good quality of life possible. He left the room for a bit and I counted ceiling tile while my husband quietly cried. He returned with printed out papers and was excited to explain he thought I was eligible for a clinical trial. Still in shock, knowing nothing about clinical trials, I relied on the standard, if I was your wife, what would you recommend. So I begin testing to confirm eligibility. A stage 3 clinical trial, comparing ixempra and avastin, against another chemo and avastin. Randomized to which drug I would get, but he assured they were both good treatments, the ixempra, an older and a little harsher but an effective drug. I had a bone scan, pet scan, ekg, chest xray and an mri. Insurance approved the enrollment and coverage and the test results were that I was eligible, but confirmed cancer in my spine, pelvis, sternum, micro spots in my lungs and a 5 cm tumor in my left breast. I was selected to receive Ixempra. Weekly, 3 weeks on, 1 week off. Avastin, every other week and monthly infusion of Zometa. I was told to take vitamin D, magnesium, a daily aspirin, and to avoid citrus. CT scan every 2 months to check for success. For the first 10 months, the breast tumor and lung spots regressed and the bones were stable. For the next 5 months everything remained stable. Although ixempra was considered a harsh drug, I found it manageable, I continued to work full time, ran a mile or 2 a couple times a week, and helped my daughter plan her wedding. I never lost the hair on my head although it thinned a little, and I did lose my eyebrows and eyelashes. Just slight nausea and lots of bone aches and fatigue. About 4 months in the FDA took away approval for avastin for breast cancer. We discussed whether to continue and because I was still regressing and my blood pressure was ok, we continued with it.
After 15 months there was a slight progression of the breast tumor, although Dr. K said it might be in the reading radiologist because it was so slight. It did disqualify me from the clinical trial. The good news was that my cancer was hormone positive and I could expect success with anti hormonals. Dr. K said femara is a mighty pill. So far he has been correct. I have been on femara, monthly zometa infusions, and the over the counter vitamins, for 34 months with continued stability and normal tumor markers. 49 months and counting!
Last fall I ran a half marathon and am training for my second since diagnosis this fall. I will run up a mountain in ID next week in a trail race accompanied by both my adult children and my granddaughter. Last new years I skied with my husband, children and grandchildren. I still work full time. I have some neuropathy and fatigue, chemo was hard on my teeth and gums, and I miss my eyebrows and eyelashes but I live a pretty normal life. Monthly infusions of zometa, doctor appointments every 3 months with a tumor marker test, and CT scans every 6 months. I'm not sure why I have been so lucky, I have a stubborn personality, a good hopeful doctor, and I stay active and busy. I feel about 95 when I wake each morning, and feel like the OZ tin man needing oil, but once I'm up and moving I have hours and hours where I feel okay, some moments where I feel terrific.
I try to live in the moment enjoy each day. We travel a lot. I spend as much time as possible with loved ones, I seek out new experiences and try to continue learning new things. The hardest part is not knowing, the I might not be here then thoughts looming. Financially, it's hard to plan, should I retire and spend the money we've saved for old age, or should I keep plugging along at a job with the hope that I'll still be here in 10 years to retire when I originally plan financially.
What helps most is to just keep moving. To keep planning, to have something to look forward to in the future. Something special every day, week, and month.
People were most helpful during chemo in doing the little things, calling if they were headed to the store to see if I needed anything, calling to see if our dog would like to go the dog park with theirs, watering my garden on my chemo day. Cards to let me know they were thinking of us. Now what helps me most is people who treat me "normal". I still love to laugh. I look at before pics and miss that healthy person so honestly my favorite thing is, a comment on how happy, pretty, nice I look today.
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My story begins in September 2013, I was 51 years old. I was traveling for the company I worked for and while on a trip I noticed my left breast looked a little different. I then felt a lump. I called my daughter who is an RN and she suggested I monitor it until I return home on Thursday. It didn't go away so I called my Gynocologist....long story short that day I found out I had Breast Cancer. How could this be....I did all the right stuff. I had a mamogram every year, had just had one in April.
I was diagnosed as 3A TNBC, 4/22 nodes were positive and 2 cm tumor in my left breast. Opted for a Bi-lateral Mastectomy with immediate reconstruction (expanders). I then did 6 rounds TAC with very little side effects other than hair loss. My oncologist told me either I don't know I felt bad or I was just not telling him. I didn't travel during this time but did work 12 hour days. I then did 28 sessions of Radiation. I had my final expanders replaced with implants in February this year. The next things scheduled was nipples and tattoos.
I had gone 18 months cancer free. On April 6th I put in my resignation, a job I had done for 30 years to start with a new Engineering Firm on April 20th. Routine visit with my Oncologist we decided it had been a while and might be time for bone and CT scan. CT scan identified a 1.3 cm nodule in my lower right lung along with a pulmonary embolism (possibly from chemo). I was given a blood thinner for the embolism and will be on that the rest of my life. A PT scan was done to determine if the nodule was cancer. Nodule is cancer and 6 additional very small spots were identified (1-soft tissue sternum, 2 nodes, 3 more in lung). May 1st I was told I had metastatic breast cancer. I started (Taxol) Paclitaxol on May 22nd. I have had 2 sessions, 3 weeks on 1 week off. CT scan scheduled for next Monday. Praying for nothing to have changed (meaning no new additions) or some shrinking, I will take either.
The best way my Oncologist described it is "I have a Bear that has come out of his cave. We need to put him back in his cave, he will not go away, but he can hibernate, and when he decides to come out again we do what is needed to get him into hibernation once again. I like that explanation better than remission. I have faith in God and know only he knows when my last day on earth will be.
I have a wonderful husband of 28 years
and 2 amazing children (daughter is a RN and my son is a Dallas police officer). So proud of both of them. My daughter and her husband have given me 2 beautiful grandchildren. Another interesting fact is my daughter, granddaughter and I all share the same birthday.We have some awesome friends, we all love to travel and stay active. We have something planned all the time. They call me the "Crews Director". When we plan an event I get everything scheduled and reserved and they show up to enjoy! It works best this way!
I live every day to its fullest, I have a lot of GREAT moments and then I have some sad moments, but luckily they go away pretty quickly.
I am working with my Oncologist to start a support group for women with metastatic breast cancer. I think support groups and discussion boards like these are very beneficial when you are dealing with the disease we have. God Bless You All and Keep The Faith!!
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My son and daughter and my grandchildren in Broken Bow, OK (June 16th, 2015).
My husband and I in Austin on our Anniversary (June 12, 2015)
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Reading the above stories make me sad & frustrated. I don't share my story often because I have 6 children, 1 daughter & 5 sons. Two boys still live at home, so it seems to work for the men in my life not to talk about the Big C.
Like one of the above stories I too did the right thing, in Sept 2008 I went to my gyn, cried as I told her I was certain I had a cancerous breast lump. I was 48 & had no family history of breast cancer, but my mom always told us how her father's side of the family all died from some form of cancer, her dad was in his late 50's when he succumbed to lung cancer. My doctor did the right thing, sent me for Mammo w/ultrasound . Nothing was seen. I was sure she thought I was being hysterical because a close friend had recently been dx with BC. Six months later I returned to her w/grape size lump, she took one look & said I need to see a surgeon. The surgeon sent me for a mammo again which again said they saw nothing. I had fibrocystic breast, so they blame that for not seeing anything on mammogram . I had punch bx which confirmed IDC. I was told I would need chemo 1st to shrink the tumor. My surgeon wasn't very forth coming when she said I would probably need a month or so of chemo then surgery. After 4 different chemo drugs I finally had a double mastectomy 7 months later. Chemo did very little, 9 of 16 nodes were positive. I rang in the new year with radiation treatments. Took arimidex faithfully. My 1st PET scan post treatments came & I thought I had nothing to worry about. I had a reoccurrence in my right inter mammary chain of lymph nodes ( my original disease was on left side) To make matters worse I had burned a bridge w/ my RO. But God was good he brought a better RO into my life. He was so positive , said to look at this as a bump in the road. Things went ok for awhile.
May 2012, I started to complain of hip pain. Dr thought arimidex was causing joint pain, encouraged me to take ibuprofen. Did bone scan, all looked ok. By Nov I asked for PET scan , dr said she wasn't getting them approved for other pt's, offered Ct scans . I refused dug in & said I want PET scan. She finally relented, & I got PET scan 3 months later. I had results sent to RO too. My RO called 1st, said we need to see u tomorrow. My MO called later & says nonchalantly, we need to start you on a drug for my bones called Zometta. I went to RO & he said my hip was so bad it could break just walking around. I was devastated, how could this be happening again???
Needless to say I haven't been back to that MO. I went to MD Anderson, wish I had gone there originally. So, today I am on 4th MO, still w/RO #2. I have bone mets in my spine, skull & hips. Fentyl patches keep the pain under control. I have good days , then I have days where I sleep all day. I have been in Palbociclib trial 1 year, not sure it is really helping. I am told mets looks stable, oh but it seems you now have a new spot on your rib.
Oh yes, and here is the big kicker, I have been an RN for over 30 years experience working in hospitals, my oldest son is also a physician. I refuse to give up yet & I plan to die doing things I like to do. I do not know how to share a photo, but if I could it would be from my recent 54th b-day, which I enjoyed horseback riding with my son & a couple of his friends. And yes I paid the price was very sore for quite a few days afterward
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I also did a lot of the right things prior to breast cancer. I was a vegetarian prior to diagnosis and a marathon runner, having done 7 marathons. I was diagnosed in August 1997 with Stage IIIC IDC, with 6 positive lymph nodes. I endured two months of chemo prior to surgery and then 8 months of chemo. After my surgery and prior to the 8 months of chemo I switched to an integrative oncologist who treated with both standard and complemenentary treatments. Not so unusual today, but back in 1997 it was almost unheard of. Prior to undergoing radiation I had reconsruction with a latisimus flap and expanders. I honestly found the chemo to be not nearly as terrible as what I anticipated and was able to run through treatment. I was also able to work full time through treatment and continue business travel. But my diet since diagnosis is totally different. I started to eat some meat (only organic and free range) and poultry and felt stronger and more energetic.
In September 1999 I had a staph infection and had to have my implant removed. In January of 2000 I had tram flap reconstruction which has worked out very well. Almost 14 years with no issues and one of the best decisions I've made.
Fast forward to September 12, 2001. I was feeling great with no symptoms or with no pain. My onc's office called to tell me that my tumor markers were elevated and that I needed to get scans. Of course I freaked out. The CT and bone scan did not show anything. A subsequent pet scan however showed bone metastasis to my right hip. Hard to believe as I had no pain or discomfort. I started on Herceptin and Arimidex and was NED for almost two years. My onc then stopped the herceptin and my markers accurately showed progression. Back on Herceptin and Femara and was NED until early 2008. Still no pain or discomfort and scans showed that the progression remained in my bones.
Since then I've been on various treatments. Some more difficult than others, a few like Kadcyla and Gemzar which didn't work (very disappointing) but through it all I've been able to work and live my life to the fullest. The year with Perjeta/Herceptin was very difficult with GI issues, but my cancer was stable and that's what I wanted to hear. Travelling was difficult but somehow I managed and was still able to travel for both business and pleasure. A year on Halaven was also very difficult with terrible neuropathy. When I think back it's hard to beieve that I came to work every day since I hard such difficulty walking. The subway steps were quite the challenge.
My current treatment Ibrance/Femara is working and I'm so thankful. The neuropathy has improved greatly. The side effects of the Ibrance/Femara are minimal compared with some of the other treatments and my mets are stable and still after all these years confined to my bones. I honestly have more energy and work longer hours than many of my friends who don't have cancer. I really attribute my long period of stability to the complementary treatments that I have as well as standard treatments. Metformin has also helped to keep things under control. I also get weekly IV of vitamin C and D and Glutathione. I'm still with the same oncologist that I've been with since November of 1997. My friends all laugh at me about all of the supplements I take and the treatments that I do. I honestlly never thought when diagnosed in 1997 that I would be here in 2015. Of course I continue to have anxiety with each blood draw and terrible scanxiety and it really never gets any easier. But there are many days that I can forget that I'm Stage 1V.
Blessings to all
My husband and I on a recent cruise vacation.
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pearlady....wow!!! what a story, thank you so much for sharing! You are truly an inspiration to me, love the cruise pic, continue to enjoy... see you in 2020!
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Dear Members,
Thank you so much for these stories!
Bumping for more -- PLEASE SEND THEM IN A PM if you'd like to share! Thank you! We really appreciate it. The Mods
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Wow that is an inspiring story and I also wonder how you got to be able to take femara and Lbrance since they are designated for first line hormonal therapy and it lookes like you were already on Arimidex? I've been wanting to go on femara and Lbrance because my bones ache so much on Arimidex and I'm also on Xgeva to build up the bones but can you tell me if your doctor feels that these will be just as effective as a 2nd line of hormonal therapy for metestatic cancer?0 -
Ipostmus many of the women on the Ibrance thread are taking the Ibrance/Femara as second line therapy. Some are having great success with it and others haven't done as well. My onc has said that he really hasn't had much of an issue having it approved for Stage 1V as second line therapy. Yes I have had Arimidex and I had Femara previosly also. I was NED on Femara/Herceptin for almost five years. I was concerned with taking Femara again, but at the time I was approved the only way that you could get approved for Ibrance was with Femara. My onc feels that it may work again since it worked in the past. He feels that combining it with Femara may help the Femara work again. I have been on the combo almost five months and so far so good. No real regression, but I have been stable. I'm happy with that since I am pain free and have good QOL. Prior to the Ibrance/Femara I was on Halaven for a year. It really knocked my markers down, but was difficult. Since starting the Ibrance/Femara my markers have been stable. I've scanned once and have shown no progression. I'm going to be satisfied with that and hope that it continues to work.
I do remember joint stiffness, not bone pain, from the Arimidex and also have some on the Femara, but to a lesser degree. I take some supplements which are suppossed to help with the stiffness. But honestly, for me the stiffness is a small price to pay for being stable.
Good luck to you with Ibrance/Femara.
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Hi,
I was diagnosed with Stage Ia in 2008 at the age of 38 after just having had a "normal" mammogram. I had a double mastectomy with tissue expanders and ultimately saline Implants, hoping to not have recurrence. I had no positive nodes at the time (that they could find). I was on Tamoxifen for 4 years and then recurred at Stage IV in July 2012. I am now living 3 years with Stage IV (July 2015) and have liver, lymph node and bone mets. I am blessed to be still doing OK and working full-time.
Liz
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I was diagnosed with IDC, stage 1a, TNBC June 2014 on my anniversary vacation in FL. I did chemo and prophylactic bilateral mastectomy (instead of lumpectomy and rads) and returned to the same vacation with my husband ready to embark on a new year without cancer treatment. We had a nice trip without the strange cloud of cancer treatment uncertainty that loomed on our previous trip. We returned to FL just shy of a month later on a trip with extended family. I left FL this time with knowledge of cancer in over half of my liver and a big, pregnant belly...my liver baby, I now call it. I knew TNBC has a high rate of recurrence, that getting through the next 5 years cancer-free was important. I NEVER expected recurrence to happen so fast. I thought I was in fairly good shape being stage 1a initially and I didn't know metastatic cancer was automatically incurable. I thought we if we caught recurrence early, it could be likely taken care of just as before. Not sure how I missed that part. So now I don't really even know what I feel. I'm trying to get to the point where I savor the joy of every day but I actually just feel numb. Can't even cry anymore. It's like it's not real. I would really like to connect with other young women with mets, especially TNBC. I have 3 daughters 11, 9 and 6. Thinking of them growing up without a mom and my husband being on his own without his best friend is the worst part for sure.
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kaay
I would love to connect with you. I am waiting for the dr to call me with final results but I know
it is now triple negative breast cancer. I had to have a lung biopsy and the breast cancer has
metastizied to my lung. I am from Pa. What kind of treatment are you getting.
Nan
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Hi Kaay and Nan, We do have a group for Stage IV TNBC Mets. It is under this same Forum but the Topic is Triple Negative Stage IV. Come on and join us. I was recently diagnosed as a Stage IV TNBC on May 1st of this year.
Prayers your way! Hang in there!
Julie
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I'd like to tell my wife Riffat's story. She was first diagnosed with breast cancer in 1977. She had radical mastectomy in Pakistan to remove her left breast followed by radiation therapy. In 2001 the cancer came back in the right lung. She has since been on Tamoxifen, Femara for 8 years, then Aromasin, then Megace and now on Xeloda. It's over 14 years since it metastised to the lungs and it was over 23 years when it recurred. the only drug which did not work at all I believe was Megace. Why her Onc. switched to Megace from Aromasin is something we haven't really asked the Onc. We assume it was because the Aromasin had stopped working. Another question as to why he kept her on Megace for 8 months when it wasn't working is also something we haven't discussed. I guess most patients rely on their Oncologist's judgement. So, where's the oversight? Which is why we have gone for a second opinion with another Onc. and see what she has to say. Her own Onc's body language said: Consider yourself lucky; 38 years, what more do you want?
Shahid
Toronto, Canada
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Wow Shahid, what an inspirational story! 38 years really is quite an accomplishment. Thank you for sharing with us and giving hope to so many!
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