Life does not end with a stage IV diagnosis (really!)
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Dear Imagine,
I have read your comments and also those of others, and I just cannot imagine how you are feeling (and reeling) after those comments from your PCP.
Years ago, I went through something similar with my then PCP. She was very knowledgeable about the run of the mill issues that a lot of people experience -- BP issues, thyroid issues, etc. -- but was totally freaked out by my cancer. She was a brilliant GP, but not great with handling that type of situation. She made me so nervous at each visit that ultimately, I switched docs. I've been with my current PCP since about 2008. She is also brilliant, but she knows that she doesn't know everything and so we have a dialogue when I see her -- we educate each other, I think.
That's what you need for you at this time. I would not be able to go back to that doc knowing that she only sees my cancer. Good luck in finding a new doctor.
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I don’t want to continue to hijack the thread, but my PCP prescribed the Pravastatin several years in to my being diagnosed with mbc. I requested it after all three of my brothers had heart surgery for blockages and high cholesterol runs in my family. My PCP didn’t bat an eyelash when I brought up the subject, just said, okay and gave me a prescription, He also mentions from time to time I should get a colonoscopy, but I decline for personal reasons. I’m just trying to show that not all PCPs write a metastatic breast cancer patient off as if they aren’t worth the trouble. I credit my PCP and his NP with helping me cope during these years of mbc. I only see them twice a year, but I know I can turn to them if and when needed and that makes me feel supported.
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Imagine, I concur with everyone's comments here. Your pcp's comments were highly insensitive and just plain rude. I'm now on a statin having fought my pcp from prescribing for a year. She told me she would hate to see me survive bc just to die of heart disease, showing she cares about my other health issues and doesn't consider me done for with bc. My MO also told me to have a colonoscopy which I had in 2016. Best of luck and hugs for you.
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Hello, I am new here. First I should thank Caryn for this thread it was a necessity. When I saw this thread I started reading people’s stories. First couple of pages was enough to encourage me to join this club and share mine but last page was different and made me wonder if I am in a same thread so had to look few pages back. Then I understood what’s happening, maybe my story as well as other people experiences give some power to look at external problems differently.
A little bit about myself, I diagnosed de novo. I tell you fear and tears and how I stand on my feet again. First when I was waiting for biopsy results, I received a call from my gyn, I can say that call ruined me, that day I introduced to a new world that called IDC, she recommended to not look up on the internet and wait for an oncologist appointment. A silly resident of my gyn tried to comfort me with survivor rates! Those words were new to me either, I never imagined myself having cancer, no family history, healthy, no smoker.... don't remember how much I cried. ok visited with an oncologist and some more tests done then received another call... yes introducing to stage 4, metastatic to spinal bone in 3 areas one was in bad shape, a small lesion in liver. I hate this term “not curable but treatable”. First I looked up in the internet tried to understand terminology and seen a lot of statistics, I prepared myself to say goodbye to loved ones. Meanwhile One of my spinal bone fractured and my life turned into even more difficulties. Few months ago a follow up mri showed suspicious progression in spinal cord when I started to ask around in forums a nice lady sent me a discouraging post! although the information was not bad, she also mentioned there is only one therapy (let’s say x therapy, because I don’t want discourage others with raw information) that gives you few weeks of life! A week ago, I visited a GI for another treatment when his resident said oh stage iv, you are right to be worry about your remaining days!
Well here is my inspiration, I started to educate myself about the disease from reliable sources, the more I know what is going on inside my precious body the more I have power to argue/ discuss/ disagree with my oncologist team, I share my concerns and propose other treatments, ask for different tests to detect cancer. They say knowledge is power and it is so true. The more I know about the disease the less I care about those random cheap comments. Plus I recently practice mindfulness, those techniques teach to be calm instead of being sensitive. the most important is how to look at the light at the edge of tunnel. I TRY to enjoy my life as it is and lift up small joy daily. I started walking five minutes per day since last week, I am happy pt exercises help to get my balance back, yes I stand on my feet again without the aid of walker or brace. And I set a goal to reach 10,000 steps per day. I also started looking for a job. There are days that I cry for things that I cannot change though. There are days that I can’t get up the bed as level of energy is not on my side. But those days the inspirational stories, beautiful photos etc from you ladies would help me a lot.
Best,
Julia.
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Welcome Julia! I would love for this thread to stay on topic, i.e. The normal things, both good and bad, that we experience in daily life despite mbc. However there is always some drifting off topic from time to time. I try not to be heavy handed when I redirect members to threads that might be more pertinent when it comes to tx and other medical matters.
It’s interesting how certain phrases or terminology bother some and not others. I don’t mind the treatable but not curable phrase because it is currently true. I have been NEAD for 9 years and have done remarkably well but I would not consider myself cured, until there’s an actual cure. I have had many years to learn about my “flavor” of bc and have had contact with many stage a IV patients. There is no concrete evidence, yet, to support a cure. Yes, there are anecdotes but they don’t equal data. I myself have no reasonable explanation for why I have done so well. I am, in equal measure, both grateful and guilty, about my longevity. My family, on the other hand, is only grateful! Very few beat stage IV and there is no doesn’t seem to be a clear reason why a few do so well but the majority don’t.I wish you well.
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Imagine - It sounds like you have gotten good advice here. I am only chiming in to say that not only was that advice rude and insensitive, I would argue it's medical neglect. Your PCP has a duty to treat you. If they are worth their salt they focus that treatment on preventative care not reactive care. To completely ignore that duty with a bone head statement like that is not only uncalled for it's unprofessional and ignorant. Your PCP is not God with an all seeing eye to the future, despite what many of them think. I'm glad you are looking for other options, you deserve better than that.
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Had a PET scan early this morning. I now have results anxiety! Yes, waiting for results is the worst
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FINGERS AND TOES CROSSE
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Yep, I agree it's waiting for scan results that is the worst. I had a brain MRI this morning and tomorrow will be an echo. It's always something! Fingers crossed for you Caryn.
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and for you too Bliss,
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exbrnxgrl & Bliss, hoping for good results for both of you!
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Thanks all for your support. Yay!! I'm happy to report a clear brain MRI. Haven't gotten the echo report yet, but I trust it will be ok, too.
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Woo hoo! It’s our time! Congrats bliss. Kick back and treat yourself well. I am pleased to say that my PET showed no active disease 😊. It did show a very congested sinus cavity with possible polyp. I am allergic to virtually anything that grows and chronic congestion has been a part of my life for a long time. My mo says we’ll discuss it all at length when I see her in early August. All the tension in my shoulders has melted away, for now. Has anyone watched Hamilton? It is fabulous. I have been a Broadway fan since childhood (grew up in NYC) and though I adore classic musicals, I appreciate innovation. This is theatrical genius on so many levels. Lin-Manuel Miranda? What can I say? Talented doesn’t even begin to describe him. I’ve watched it twice and I know there’ll definitely be third time!
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Woooohooooo happy dance!!
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Great to see good news for you both!
🎉💪🏼
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Bliss and exbrnxgrl---Happy Dance !!!!! So happy for you both. Celebrate and relax.
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Bliss and exbrngirl,
Great news for you both. Big sigh of relief, I'm sure!
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exbrnxgrl & Bliss, love hearing your good news! Clean scans are always great and seem even more so in the midst of the pandemic. Happy for you both!
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Splendid news, Bliss and Caryn. Breathe deep and relax!
Tina
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Thanks Caryn, and congrats on your clear PET! A big sigh of relief for sure. Thank you all for the well wishes. Onward we go!
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Great news on the scans Bliss and Caryn 👏🏻👏🏻!
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Thank you all for the good wishes!
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So many of us are going a bit stir crazy with staying home or making very limited and necessary outings. I have been busy most of the summer serving on various committees as we plan to start the school year with remote learning. It will look very different from the spring where teachers in my district had literally one hour to pack up and leave when the schools closed. Yes, we did remote learning but we were flying by the seat of our pants. Many, many teachers and staff in my district spent hours over the summerconstructing a robust and rigorous distance earning program. It won't be perfect and there will certainly be challenges but I am enormously proud of my colleagues and my district as a whole.
Needless to say, my summer vacation, in the traditional sense, did not happen. My daughter and granddaughter have been out of town this week and I have been house/cat sitting. In a pathetic attempt to feel like I'm on vacation, I am pretending that I am staying at an Air B and B 😉. I am also learning that I know nothing about cats! On the plus side she has a lot of fruit trees including apricot, avocado, pomegranate, orange, grape vines, tomatoes and potatoes and the yard is very lush and tranquil. A bit pathetic, but one must make the best during times of pandemic. Hope everyone has found some summer fun even during these strange times.
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sounds perfect to me exbrnxgrl
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Thanks helenlouise! I am home now and beginning to do some serious back to school work, albeit modified for distance learning. it was a nice change of scene.
I got some upsetting news today. As most of you know, I have been very open about my bc with my school community. Over the years several teachers and parents have come to me with bc concerns. I have even let those who are considering recon feel my implants 😂. I’ve shown them my port and done anything else needed to set their minds at ease. I became friendly with one parent who finished up chemo for stage II only to discover spinal mets about 6 months later. She’d been stable on Ibrance and letrozole only to discover that her recenPET indicates liver mets. They’re scheduling more imaging and a biopsy. I know I shouldn’t be bummed because she may have quite a few tx options and she’s at a great facility, Stanford. Here’s what upsets me. She has two children in HS and one in middle school. It makes me furious. How could this happen to a mother still raising her children 😡? I know this sounds awful and I have no death wish but I wish I could trade places with her. I’ve raised my children to be wonderful adults and I’ve had the privilege and joy to have 3 precious grandchildren. I’ve had a great career, too. I’m so afraid that this sweet woman might not have the same one day. I rarely cry over my own bc, but I cry for her.0 -
exbrnxgrl, I know how you feel, I just hate that women with young children have to go through this. When I see young women show up here, I pray extra hard for their survival.
I want to go on as long as I can and I want to see my yet to be born grandchildren - but at least I can say that I ve lived a lot, raised my kids, had a career, etc. That makes it easier to let go.
I know I’ll be missed, but everyone who will miss me is grown and not depending on me quite so much!
There are cures out there somewhere, may they be discovered soon
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Caryn, what an educator you are, even allowing “hands-on" experience by letting possible recon candidates feel your implants!
But in all seriousness, I can truly understand your devastation in finding out about the progression the one parent of 3 is dealing with. Your feelings are such because you know that mbc is unpredictable and her situation could go a number of ways, good and bad. You've witnessed that time and again by befriending women on this forum. You know there are going to be trials and tribulations in her life and how that will affect her, her children, her family. It's exceedingly unfair and seems especially so for women with dependent children.
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Good morning ladies. I just wanted to introduce myself - I was recently told that a scan I had showed a few spots on my lung and some nodes in my chest. I am still in the process of information gathering and have decided to move my care to the Seattle Cancer Care Alliance, since I only live about an hour away. It may make treatment difficult at times but I don't trust my current clinic with my care.
Since I received this news (it's been about two weeks) I can't stop crying, I go between wanting to live a long life to feeling like life may as well be over now. That's why the title of your group caught my eye. I just need some hope to carry me a bit. I've been praying and looking into alternatives like exercise and nutrition to help support my body but then I just fall in a ball and cry - so overwhelmed I can't hardly move. I'm only 46, still raising teenage kids and have so been looking forward to the phase when they are independent and hubby and I could reconnect. Now I feel like that's all gone. I know everyone is different but please tell me that there is some hope for me - I want to be here but I don't want to suffer forever.
deanders
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deanders, I was lucky enough to attend a conference in Seattle 2 years ago for MBC and I was so impressed with the resources up there. You aware in a great place for treatment and knowledge
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Deanders, this is all very new and very shocking for you just now. All of us have experienced that initial terrifying few weeks. Some of us however have been “living with cancer" and that is an important phrase, for several years. Some of us aim to live as normal a life as possible (and that is the main focus of this thread) whilst still having treatment, some work, many are bringing up families. Personally I was diagnosed stage 4 in April 2018, 12 years after my primary treatment. My team ( as I call my medics) told me I may have months or years, they had no way of telling. I read the stats and thought that's it for me....stop reading Dr Google if you have been...most of it is several years out of date. New treatments are coming out all the time and if / when one fails they try something else... there are several lines of treatment before the scary stuff!
Exbrynxgrl is a good 8 years down the line and still working full time.
I started on Letrozole and Ibrance ( there is a thread for that too) with 3 monthly scans. 6 months later there was no evidence of active disease showing at all on my scan ( NEAD) and a I am still the same now over 2 years later. The level of anxiety around scans is intense, but we learn to ' put them in a box' the rest of the time and be vigiliant for symptoms. The Covid situation is pretty much what we deal with all the time in terms of immune suppression, constant hand washing, avoiding crowds etc. But it becomes the ' new normal' for us, we don't think about it.
Progression is the word we all fear, but we cannot live in that heightened stress state all the time. Everyone is very different and we deal with things in our own way. My team over the years have given me 2 key pieces of advice.
1. The more relaxed you can manage to be, keeping active and living your life as well as possible the easier this will be for you, your family/ friends and your team.
2. We'll tell you when you're dying of it... right now live with it.
I think I've used every cliche in the book in this post, but I'm sure others will chip in!
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