Life does not end with a stage IV diagnosis (really!)
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I hope I get the chance to meet my grand children. I am Thrilled you’re so close to yours. A special gift for sure. It’s so nice to see them grow. Big and healthy. Much love ~ M~
Lovely photos and scenery
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Hello friends! I just got back last weekend from a two week vacation with my family and am going through photos. We road tripped to the Black Hills, Devils Tower, Yellowstone, Grand Tetons, and Rocky Mountain National Park. We were incredibly active and it was soooo beautiful! Life is good and we live in an amazingly beautiful country here in the US! I even climbed a 12,800 foot peak! I started this journey over two years ago with lung mets and would get out of breath going up the stairs and was worried I would never feel good again. So happy to be feeling good and strong again!
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DGHoff...thats the way to do it. That is inspiring! I need to go climb a mountain now.
A Beautiful Sunset
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DGHoff - I am no longer worried about hiking at 10,000 feet. If you can do it, so can I.
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Wow! Fabulous picture and the whole trip sounds great. We may be stage IV, but, if we can, we should try to live as fully as possible.
I have been on the East Coast since early July. My 90 year old father is dealing with dementia and my brother and I are having to make some hard decisions. This is so emotionally painful, but part of the life cycle , so we somehow find a way to cope
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Hi...I am new to this group, I received the official news 1 week ago. My cancer has advanced to my bones the good news is I will be able to treat it with Arimidex, Ibrance and Xgeva. I have heard positive things from my medical friends about this combination. I am young and very positive and surrounded by very supportive people that let me cry when I need and laugh with me when I am able. I am glad that I found this thread because I think I will find a lot of community and kinship here. I want to believe that just because there is currently no cure for my disease that there is also no expiration date. I have an incredible faith so I am not afraid of dying I am however sad to leave. Every Time I feel like quitting I remind my self that I have hopefully a long haul here and I could go into remission and stay there for a while. The one gift that I have been given by this is that everything matters, every day, every moment, every friend I hopefully will not take any of it for granted. My husband and me spend our time "making memories" We do new things we go places we always wanted and we no longer think in terms of we'll get to it one-day. This disease will not take that from me. I have to tell my best friend this weekend, we have been wanting to walk the Camino de Santiago together for awhile so I suspect we will get serious about it. I hope I can report many moments to this group but I also know that I will be talking also be talking about my bad days here. Thank you in advance for listening to my stories and sharing yours.
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very inspiring, I start Ibrance next week for bone mets so this weekend I have decided to take a long drive in the morning, enjoying the beauty of Wisconsin, and then on Sunday going for a hike.
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Welcome JJ! Sorry you’re joining this club...you will find lots of great support and information here. You can scroll through the threads for Ibrance and Bone mets to meet those who have been doing this for a while
Again...Welcome and enjoy the weekend:0 -
Welcome JJberky !!!
When you feel up to it, if you want to, you can fill out your profile---Diagnosis dates, meds you are on, etc. I think it helps us as we read your posts and helps us with your questions. Like Iwrite said, you can follow the threads Bone mets and Ibrance. There are several good threads to follow. Just check them out, start reading, and start posting. In the Ibrance thread, there is a wonderful woman- PatgMc- who posted not long ago (Sept 5 posting ) about our "expiration dates". If you can read that, you will love it.
I also have my faith to hold onto. I know I have a home in Heaven waiting for me. I just don't want to move yet.
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I had a single mastectomy on my right breast in January of 2017. I am HER2 negative ER+/PR+ post menopausal. I completed chemo/radiation in Oct of 2017. In April of 2018 my PET scan showed 1 lymph node in my chest near my lung as cancerous. I am now doing the chemo pill and anti-estrogen shots. 2nd PET scan shows that lymph node is less lit, showing improvement. My questions are (I know this sounds silly) but am I considered a survivor? I have a meeting next week with my oncologist to discuss my prognosis. I am freaking out because stats show only a 22% survival rate for stage 4 breast cancer. Could this be true if it's only in 1 lymph node near my lung?
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aaltiere, others more knowledgeable than I can advise about your stage from their experience. I was stage 4 from the get go. I hope you won't be considered stage 4 and I hope your doctor can clarify this for you soon.
As of right now, except for one woman (Judy Perkins), stage 4 is not "curable". The 22% figure is for how many will be alive five years after diagnosis. With all that being said, MANY stage 4 women and men are making it past five years, and perhaps the 22% number will go up after some of the newer meds have been in use for longer periods of time.
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aaltiere, yes, you are a survivor! And what you have to realize is that today's 5 & 10 year survival stats are made up of patients who started treatment 5 & 10 years ago, pre- some of the newer meds and other advances that have come along since then. And each new drug or other advance -- drugs like Ibrance, for example, are adding years to many of our lives -- hopefully enough years for more and better therapies to come along. Also, until very recently, those who had a metastatic recurrence were never properly counted. I've personally known two women who were 25+ year mbc survivors, and there are far more 10+ year survivors out there than you might think.
Another big factor in your situation is that you only have disease in one node. Look up ogliometastatic disease, and ask your onc if a node qualifies as ogliomets. I'm thinking it does, even though we more often hear it for bone mets. If it's considered ogliomets, you are actually in a very fortunate subset of mbc patients with an excellent prognosis.
An mbc dx is always a huge shock and adjustment, but once you get on a med that's working well, you will begin to realize you are living with Stage 4 -- not dying from it -- at least not any time soon -- which is what this thread is all about. My only other advice is that if you don't already have one, be sure to find an onc with a special interest in ogliometastatic disease who will be up on the current research. Oh, and remember -- you are NOT a statistic. You are an individual. Forget the stats and focus on living. Hugs, Deanna
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Deanna, thank you so much for the advice. I will certainly ask my oncologist when I meet with her on Tuesday of next week. Also thank you for your words of encouragement, I am definitely living my life to the fullest and working very hard on raising funds for Breast Cancer research. I have a wonderful support team, my sister and my 2 best friends so I feel luckier than some. I've also just returned to my passion, search and rescue with my k-9 soulmate. I did scare the bajeebees out of me when the DR told me I was now considered stage 4 and holy moly when I looked up the survival rate for stage 4 well panic set in. I will try to find an oncologist who specializes in ogliometastatic disease, living just outside of the Washington DC area, I should have pretty good luck with that. Hugs and Prayers to you!
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aaltiere, how did your meeting with the doctor go? I'm in also in the Washington, DC area and have been dealing with HER2+ metastatic breast cancer for about 7 years now _ I was stage IV out the door. btw, there is a group in the area called METAvivor, if you haven't heard of them yet. They're in Annapolis and raise money for research in metastatic breast cancer. But they also have a social group that gets together. Oct 13 they're getting together for dinner in Severna, MD if you're interested. Good group of folks.
Like others have been saying the olio thing is good. I have met a few women like this and they're doing well. Mine was all over the liver when it was found and I am very, very lucky that the stuff responded to treatment. I've done Taxol, just Herceptin, Kadcyla, and now am starting on Perjeta and Herceptin. I knock on a lot of wood and collect pennies (cancer made me more superstitious) and so far, been doing ok.
Sorry you're here now, but glad to meet you.
Susan
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Hello Ladies - just diagnosed today with stage 4 Mets to the L1 vertebrae. My PET scan lit up and then a few days later, my back started to hurt. I am quite numb right now as I process this news. Am happy to read about all of you over here and how well you all are doing. Please tell me I'll be ok. Freaking out a little bit.
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Utopia there is a thread just for bone mets and there is lots of information there; people with different treatments and experiences can help you see how it may affect you. It’s a lot to take in
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it is a lot to process Utopria, and welcome to a world of emotional rollercoasters. I lit up like a Christmas tree with my first PET scan, they didn’t even bother listing the mets sites on the report - just said extensive metastasis. I was diagnosed stage 4 from the outset, and am heading for my 4 year anniversary come December. Look at it as a chronic disease, with lots of treatment options. Join the bone mets thread. Give yourself space to grieve - this is a huge thing to deal with - and take it day by day. You are not alone x
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Thankyou for your kind words wanderingneedle and karz72...yes I'm feeling better now...and have started reading the bone Mets thread. ..am very happy I found this community..lots of great info..
Doctor has ordered definitive radiation to hopefully remove the cancer..fingers crossed!
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Hi Utopria. I just passed my 3rd cancerversary this past June. I had radiation to two spots on my T11 and left illiac crest and have had no progression so far. Since my Stage IV dx I've seen my daughter graduate from high school and now attend college, my DH and I celebrated our 25th wedding anniversary, now going on 27, traveled to Kyoto, Japan, will be going to Banff, Canada this January plus spending lots of quality time with family and friends. I'm still working full time and living as full a life as possible. I trust you will have many years ahead to live and enjoy life, too. Hugs as you navigate this journey.
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Utopia,
I was just dx’d with single met to L4 just a few months ago. Stopped anastrozole, started Verzenio, Faslodex, and Zometa. I had CyberKnife treatment in August. Just had repeat PET and no hypermetabolic activity detected....I’m so fortunate that above treatment is working. I was so scared, but now I feel better. Sending the force your way
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Has anyone else had trouble accepting their diagnosis? I was diagnosed with Stage IV in August but it is a strange case, the term oligometastatic has been used. I have metastases to 2 or 3 infraclavicular lymph nodes located behind my pectoral muscles. They will not operate. Some stereotactic radiation might be possible but it depends on my previous radiation done 20 years ago, any overlap would preclude me from any further radiation treatment.
Still I struggle with the Stage IV diagnosis because I don't have the traditional distant metastases. I can't find any other cases like mine on the internet or BC discussion boards. I've questioned my onc about it so much that she has started saying that I should get another oncologist if I don't trust her. But you can't transfer hospitals in Ontario unless you move!
I've tried to get a second opinion, but have not been able to obtain one in Ontario. Only option is that I pay for an on-line opinion from Cleveland Clinic, and I would need to deal with the logistics of mailing pathology slides etc, worried about getting them across customs.
Anyway, I think I am still in disbelief and denial that my disease is Stage IV because at least so far my onc has not been able to explain it to me in a way that makes sense. I've started the Letrozole/Ibrance regime. But I wonder if I'm getting the right treatment, which is distressing.
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Amica. Yes, people come up with cancer in some weird places. Do you doubt the diagnosis because of the location or the method of diagnosis? Did the area light up in a PET scan? I know a woman whose mets was one tiny spot on the scalp. With treatment of antihormonals, the spot has gone away and she lives her life. She is lucky.
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Gonegirl, thanks for replying. I had a PET-CT recently and will hopefully be able to view it this Thursday. But I was told only the tumors in the infraclavicular lymph nodes beneath my pectoral muscle lit up.
The confusion on my part stems from the fact that Stage IV is usually defined as distant metastases beyond the lymph nodes,, at least that was my understanding. Mine is still apparently confined to the lymph nodes, and my own oncologist has called it a loco-regional recurrence. So why is that not Stage IIIc? When I ask that, my onc's answer is that if they had found these tumors at the time of my primary diagnosis 20 years ago, then it would have been Stage IIIc, but because they were found now, "hypothetically" the cancer cells have been circulating in my blood for two decades. But when I read diagnoses of Stage IV, that is not how it is usually defined.
The difference is that Stage IIIc would be treated with curative intent, and Stage IV is not.
I would feel much better if I could get a second opinion that confirmed this diagnosis and treatment plan, which normally would be no big deal, but has proven to be 100 % impossible in Ontario.
P.S. I just checked out your blog. Excellent! See that is my experience right now, that I am in a system that is over-burdened and under-staffed. But I cannot switch centers. I have made two attempts, to get transferred to what I hoped would be a better cancer center, and have been refused because I do not live in their catchment areas. It is socialized medicine here in Ontario, and the only way I could switch cancer centers is to move.
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Gonegirl
Actually, your blog is incredible, so well-written, thought-provoking, and moving. I find myself reading and nodding in agreement--yes, yes, as you express what is often so hard to put into words. Kudos to you!
Amica
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Amica: Thanks for the compliment. It's scary to hear the words Stage IV, but frankly how cancer responds to treatment is dependent on the biology of the tumor and the biology of the person with the tumor. I've met folks with a spot on the lung or scalp or other one spotters, they get treatment, and things are good for a long time. From your signature, you're getting the latest for ER+ breast cancer so you might be fine for a long time. None of us know what will happen, even if diagnosed at Stage 1, 3, or 4. When I was diagnosed, the HER2+ breast cancer was all over my liver. I received Taxol/Herceptin and have had a few flares, but seem to be ok for now. It's been almost 7 years.
Susan
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Susan,
I am so glad for you that you are doing well after 7 years. Power to you!
I am a candidate for stereotactic radiation therapy on my tumors, but I cannot get it if the tumors are too near previously radiated areas. Today the radiologist called me and told me that my radiation records from the U.S. 20 years ago are no longer available, no surprise there. If I had thought of it, I would have collected and kept copies of all films from my original BC treatment, but I was not that prescient. Even now I am not being given any copies of images, just the written reports, and I guess I need to be more aggressive and make sure I have film copies, on CD or DVD or whatever of actual scans, because it turns out the written reports do not have all the information needed if someone needs that info in the future.
Amica
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Hi
Just wondering what to expect next.
I need hope. They are ready to give chemo again. Abraxane?
No Biopsy of the liver just juice me.
I want to survive. I feel like they are looking in a book and throwing their hands up figuring it might work with no analysis.
Please make sure to get regular imaging they did no imaging for 2 yrs.
Markers just went up.
Hx below I don'thave time to figure out whats going to work.
Liver 3 large 1 small
4cm largest
x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-
Hormonal Therapy 6/5/2009 Arimidex (anastrozole)
Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)
Skin mets Sept 2015
3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-
Ibrance and fasoldex 2yrs
It shrunk to nothing markers normal no Ca.
But now on
10.10.18 markers up
Liver mets
Sorry for regurgitating dx timeline again.
It helps me remember.
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Hi fun thing,
I am so sorry to hear about your progression and understand how distressing this is. This thread is, perhaps, not the best place for learning what to expect next since it deals mainly with all the ways life remains normal with stage IV rather than with treatments, Have you had a chance to look at the liver mets thread? I think you might find a wealth of experience and info there from folks who have been in your shoes.
https://community.breastcancer.org/forum/8/topics/809420?page=283#idx_8461
Take good care and know that there is hope.
Caryn (op for this thread
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Hi exbrnxgrl, I am trying my darnest to continue life after Stage IV dx.
My DH and I just returned from camping across the country for 65 days. We now have a collection of wonderful memories.
I had my Ibrance shipped and my monthly labs drawn at hospitals.
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Sandi sounds like you are doing awesome. Camping 65 days wow. Inspirational.
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