I don’t know the prognosis for your particular diagnosis but please don’t focus on the negative. Focus on living your life. My kids are slightly older than yours - I’ve been spending quarantine time trying to teach them life skills - cooking, cleaning, laundry, etc. Gives me something to focus on instead of this awful disease and eases your mind on how they will manage.
We’ve all been where you are, getting that diagnosis, feeling the shock and fear, noticing every twinge in your body and wondering if that’s something else to worry about .
If you need to vent, have questions, or just want a virtual hug - you’re in the right place. The wisdom and optimism I found here really helped me navigate those early months.
I don’t understand the suvmax but I can tell you that as hard as it may be you need to just think of your kids and put one foot in front of the other. If you are feeling good physically, embrace it. I would love to feel good (please don’t take that wrong I just haven’t felt good in a couple of years )
I believe you are referring to the "brightness level" on your scan - that's my architect degreed understanding of what you are asking. I think you should not think of it as anything other than a way they decide if your treatment is working. I had some bright spots too and they increased on the next scan BUT on Ibrance and Letrozole, my tumors shrank dramatically. My doc used several other factors to decide if we should continue treatment or move to the next. I think I am learning not to spin on the data finally now a little over a year into this.I was diagnosed de novo too and it often feels like a bad practical joke since I lost my sister to Inflammatory breast cancer in 2017. She was de novo and stage 4 when diagnosed in 2011..she had 6 really good years with out the benefit of all the new treatments available to us now. She saw her oldest through high school and her youngest to high school and they are wonderful thoughtful caring young men.
So, bottom line, I think our options and life span expectancies are increasing beyond what is reported. You have found a great support group here and I am sure someone will have a more eloquent answer than this.
Sorry, posted before finishing. Of course you are in shock. It is a terrible feeling to hear a diagnosis like that. Can you talk to some of the support groups at your hospital. That often helps just talking to someone who has answers. And there are lots of treatments available. Hope this helps you. You have found a wonderful support group here.
I was diagnosed with Stage IV de novo in June/July after spine MRI showed multiple spine mets and multiple compression fractures. Still trying to come to terms with it. It’s so hard not to be able to make plans for a future, but I’m grateful for every day I get. I was in severe pain, but it got better with treatment/radiation even though MRI doesn’t show much difference.
This group provides so much support. Please don’t hesitate to reach out.
You may also want to speak to your oncologist to get get some help with your anxiety (meds and/or specialists).
Happy Holidays and good luck with your scan in January. 🎄🌺
I had not heard that about SUV Max. I just looked on my latest scan, and Mine is similar to yours.
Like tumor marker, blood work and other indicators there are so many data points. Obviously it’s all important—at least from our doctor’s perspective, but my experience is focusing on prognosis is not helpful. There is no cure for MBC but between now and the end we are alive.
By definition MBC is bad news, but I am struck by how many women do manage to stick around for many years with a fairly decent quality of life. On another message board there is a woman who just announced her 14 year diagnosis anniversary . For me, at 57, if I last 14 more years that’s almost a normal life expectancy. I can get shit done in that amount of time!! What I was interested in is that she had treatment ups and downs to boot. That was reassuring. She didn’t just sail through. So maybe the ups and downs I experience aren’t necessarily a harbinger of the end?
There is someone here on this board with a similar longevity story. So that’s at least two very long timers.... and many more who talk of six or seven years—and are still talking!!
Of course, not all women do so well. But I find knowing the full spectrum of possibilities to be hopeful.
So much is out of my control—to me, that is the scariest. I want control. I want to be able to pop this pill or eat that vegetable and make it all go away. But as my kid’s pre school teacher used to say at snack time “you get what you get, so don’t get upset”
I had minor progression recently, 18 months into Ibrance. We are adjusting treatment and I get my first Faslo shot today. I asked my Dr if this was “awful”. He said it’s “frustrating not awful” and assured me it’s not time to sell my horse”. I asked if he would tell me honestly f it was awful, and he said yes.
For today, it’s not awful.
I’ll take it.
Even though I would have preferred the stable scan I expected.
And even if I don’t want to “take it, “ it’s what I’ve got.
I guess what I am trying to say is so much is out of my control, but that’s true in anyone’s life. Having cancer shines a light on that brutal reality. I call BS when people say having that light is a gift. Nothing about cancer is a gift. But I can train my mind to ferret out the small mercies and blessings. I can choose what gets to set up shop in my brain.
For me, and it may be different for you, what helps most is focusing on things I CAN control. A healthy diet. Exercise. Working with my doctor and his nutritionist on appropriate supportive supplements. Volunteering in my community. Riding my horse as long as I still can. I agreed to take on a leadership role at church and to help facilitate an anti racism curriculum there. As a privileged white woman with so much to learn—and even more to unlearn, the prospect of that work humbles me more than the cancer. I haven’t told many people about the cancer, including my church community, so it’s also nice to have a space where I am defined by my work not a disease. But again, that’s just me.
When I manage to be philosophical about things, I find that anxiety isn’t really a constant—it ebbs and flows. Some days take a force of will to get through . My 19 year old was chatting away about wanting 3 children yesterday , and I felt smacked by the reality that I may never see any of them (she has college and grad school first lol). That made me so sad. Other weeks I go through several days in a row without even thinking about cancer. The point is the anxiety doesn’t define me, it is just a visitor who overstays her welcome sometimes. Thinking back on yesterday, It was a lovely day running mundane errands with my daughter, and the kid conversation was only a blip in that .
A blip I revisited at 3am.
But managed to fall back to sleep.
Staying busy really helps. So does a healthy amount of denial and magical thinking (I am not going to Google SUVMax and prognosis, for example, because I don’t want to know) LOL
I am so not saying all if this to make your pain about me, or to be obnoxious or sanctimonious. Like many of us here, I exist a hair’s breath from depression a lot of the time. My hope to share a story so you know you are part of a community of stories and far from alone. And that while our disease is terminal, it’s not life ending yet.
I have found this message board so, so helpful. The women here are kind, honest and smart. Everyone’s story is different , but the mutual support is so powerful.
I so hope you are able to settle into some sort of equanimity. My final bit of unsolicited advice is be kind to yourself. Look for small blessings. You will muddle through. Your kids will be fine.
Oh—look up Kate Bowler. She is a Duke divinity professor diagnosed w stage 4 colon cancer four years ago in her late thirties— not long after her son was born. She has a blog, a podcast, website, wonderful Instagram feed and wrote a beautiful book about her experiences—the idea is life is not all sunshine and flowers., and things don’t always happen “for a reason”. She writes beautify about her cancer, and coming to terms with how her so-called perfect life was not so perfect after all. But her work goes way beyond cancer. It’s the polar opposite of positivity porn, which I loathe, yet manages to be so uplifting.
Gosh, Pbsoup... that was one of the most powerful/profound and wonderful posts I have read since my de novo diagnosis this past summer. Thank you for that! While your reply was specifically to Lucie, it is meaningful and comforting to so many others -- myself included. (And, Lucie, sending you much support and love right now!)
Spot on and beautifully put. Thank you - that has helped me today too, as I've been anxious the last day or two in a way I can usually squash down on. Hang in there Lucie - and remember nothing you read about statistics or prognosis will be what happens to YOU. Because you are unique and your particular case is. There are lots of treatments out there and lots of brilliant women on here who know an awful lot, and who can help and encourage you. Wishing you well x
One more thing. Just got back from the oncologist. I asked about SUV Max. Mine is 11.1. He said anything over 8 is “in the higher range” but assured me it is not a super definitive or direct correlation with prognosis. He said it is a bit more active but that can shift. depending on treatment etc.
It might be worth talking to your doctor about your specific situation.
Hi. There are so many data points to consider. Tumor makers, blood work etc. most fluctuate with treatment or progression or healing etc.
By and large, I think of them as road markers not definitives. They are both a snapshot of a moment in time and, in aggregate, can be used to track whether treatment is working or not.
Also just to keep it fun, they are accurate in different ways for everyone. My tumor markers seem to be a good gauge, but for other women they aren’t. Overall it’s best to not get too hung up on one or another, but use them as tools, along with your doctor to strategize treatment plans.
I was on Ibrance for 17 months. I came off yesterday as my markers went up (!) and a scan showed mild progression, still in my bones. I switched from Anastrozole to Faslodex and will take a month or two off Ibrance as studies show it might overcome resistance if I take a break.
Showing that this part art part science, the decision was made because my oncologist had seen this strategy work himself.
Some women have been on it for years however.
I hope this helps!!!!! It’s a lot to digest but I find that it becomes less daunting eventually. It helps to have good communication with your oncologist too.
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New to Community
Tumors shrinking on ibrance and letrozole 
Change of plans 
About to start Orserdu (elacestrant)
Verzenio, FASLODEX and Zomeda for bone plus one lymph node Mets 
