Newly diagnosed Stage IV/Metastatic Breast Cancer

BNS

Dear all,

I was diagnosed 3 weeks ago with breast cancer after a routine mammogram done on 15 June followed right away by an ultrasound the same day. Then I was programmed for a biopsy a week later that confirmed the suspicion. I was told that the left breast and the lymph node under my left armpit were cancer. The surgeon recommended a PET scan and the MRI of the 2 breast followed by a MRI of the spine. 
My Oncologist Doctor called me on Friday to inform me about the results received that showed  the cancer has spread in the right breast and in the bones and there were lesions in my spine. I am doing a biopsy of the bone this week. 
I am HER2-, Estrogen Receptor+, Progesterone Receptor- and Ki-67+. I am still shocked with the diagnosis and I feel like this someone else medical report! I was told 10 days ago that this was stage 2 A DCIS. I barely feel the lump in my breast. I really would like to what all this mean.

My questions are : I am going to have pain in the near future? Does it mean that I had cancer from stage 1 to 4 without seeing any changes in my body or feeling anything? I am interested to know your experience on treatment and related side effects? Is there a new lifestyle I should adopt? A specific? What to avoid? Is there a minimum and a maximum life expectancy? What else do I need to know?

Thank you for sharing your experiences! Take care

illimae

BNS, I was diagnosed stage IV from the beginning too back in 2016 and while it's scary and mentally/physically draining, it is doable with a great team and good luck.

You might have pain but I never did, it depends on where your cancer has spread.

Cancer is sneaky and can spread through the lymphatic system or through the blood, you may have suspicions but you may never feel anything either.

Being HER2+ like me, I expect you'll have chemo (A taxane) with her Herceptin and perjeta (H&P) for about 5 months, then H&P every 3 weeks forever. The good news is that H&P typically works well and is very tolerable, the bad news is that HER2 likes going to the brain but that can also be very tolerable. The average life expectancy for HER2+ is about 5 years but we have many treatment options and it's getting better each day.

For lifestyle, follow the usual recommendations of eating well and staying active but don't be too hard on yourself, sometimes you want cake instead of cauliflower and that's ok too.

Anonymous

hi there & welcome, sorry about your diagnosis but glad you have found this community

I have a similar diagnosis to yours, Stage IV de novo and HER2+, bone mets only, located in the spine

I had no pain before my cancer was found, have been in treatment for almost three years and still haven’t had pain, ever. I am currently “NED” which means my tumors don’t show on scans and the areas of my bone where the cancer was have healed.

We are “lucky” in a sense to be HER2+ since there are some very effective treatments available that have minimal side effects for most of us, and can keep us going for quite some time.

I don’t concern myself with minimal and maximum life expectancy , although I worried in the beginning as you probably are...but everyone is different and treatments are being improved all the time. No doubt, this is not curable, but the disease can be managed for years with good quality of life.

Most HER2+ patients start off with chemo plus Herceptin and Perjeta and then stop the chemo after 4 to 6 months and just continue with the H&P. The chemo does have side effects but they usually give you a “gentler” one like Taxol which doesn’t cause the severe nausea or other effects of the harsher ones. I tolerated chemo very well, with few side effects.

You WILL lose your hair on chemo but on H&P alone it will grow back.

You can read the Stage IV Herceptin and Perjeta thread here and the DeNovo Stage IV thread for more good info. (De Novo = Stage IV from the start)

Don’t get overwhelmed with info, though, just take it one step at a time and trust your oncologist. Talk to to her/him about any concerns you have and don’t be afraid to ask questions.

Wishing you the best, be kind to yourself and take it one day a time x

Moderators

BNS, it's such a shock to hear the words, but please know, there are many very effective treatments, and this supportive group will help guide you. We're here for you. Please vent all you need.

Janice54

I was dx out the gate with stage 4. Mets to my bone. Her2 - er+ . That was 15 years ago. I never had chemo, never had surgery, never had radiation. I never lost my hair. I started on tamoxifen and 6 mths later I was NED and stayed that way for 8 years. Went on femera and knocked it out again for 4 years. Never had side effects. My point being there is no set life expectancy. Every one travels their own different road. Statics suck. Don't even look at them. I took control of my cancer. I read books on it, I changed my diet to cut out the white stuff and ate organic. May have help, may not have but I am still here. I stayed positive by taking this control, though. I sorry you are on this road now but there is a lot of life left to live. I hope you have a special someone you can vent your fears to and they can be your cheer leader. That helps a lot. You have my prayers. You can do this! You will do this!

42young

BNS, my diagnosis is very similar to your except I'm HER2 negative. Stage 2 originally, but stage 4 after a month found by PET scan while waiting for Oncotype Dx. I'm now 18 months in & still on first line therapy & I'm still working 32/week. I heard Her2+ has very good prognosis.

JANICE54, I have been following you because I thought you are HER2 negative & have been stage 4 for so long. Were you Her2+ from the start or it changed ?

Janice54

typo, I am her 2- er + grade 1. Still going strong. Just adopted my 2 grandkids 6 and 8. Plus turning 66 this year. Life is good.

42young

Janice54, I 'm glad that you are still going strong after many years with MBC. Thank you for giving us hope!! Wishing you many more years!!

BNS

Thank you for sharing this wealth of information. I also started reading the “de novo” thread, very interesting indeed!
Good to see that there is still hope. I am a bit nervous about the time taken to schedule the different appointments between targeted MRI and biopsy and in the meantime treatment has not started yet! I know that I need to start getting patient
And I am sure this wonderful community will be my strength.

BNS

thank you so much

Kjones13

so sorry you are here! This is a great community and you will find a lot of information and support. I remember it like it was yesterday...felt like a dream...this is not my life...none of it made sense.

I was dx sept 14 2012 and started chemo oct 17th...so it takes a while for all the tests and labs and biopsies and port placement etc...it’s ok if you didn’t feel off or notice the cancer in your body. Cancer is a tricky thing.

It’s ok to be scared. Lean on the boards, but also try to have someone you can be completely honest with. Don’t look at stats...you are NOT A STATISTIC!! Best advice I ever got 😊

My Mets were in my liver and spine (although they could not confirm with a biopsy because of tumor location). I had no pain until after I stopped taxol and then wham it hit me hard. I was very active but all the sudden couldn’t run or jump. Lots of pain just standing or sitting or laying...but everyone is different. I tried to read everything I could to find someone “just like me.” To find a success story on how to survive...well there isn’t one (sorry). BUT, with good drug combinations and good luck 🍀...I’m still here after 8 years.

The sad part...I have lost friends along the way. Each loss gets harder and harder. Guilt is something I deal with daily...all I can do is graciously accept the help and love people give to me and try to pay it forward (when I feel I have extra energy to do so). Be kind to yourself.

Anotherone

Just wanted to make a quick remark that you do not have to lose your hair. You can use cold capping as I done. There is a thread kn cold capping in dealing with chemo section of the board. If you so decide to use it do not forget taking painkillers like an hour before. I have been lucky up to now I can live like 80% normal life .

Anonymous

Good reminder about cold capping, anotherone

I considered it, didn’t do it ultimately, but I did use the frozen slippers and gloves to try to avoid neuropathy and that worked really well for me

Bestbird

I am sorry to hear of your diagnosis but very glad you found this forum! There's a wealth of experience and generosity of spirit here!

The good news is that of all MBC subtypes, HER2+ patients tend to have a superior prognosis as the result of highly effective therapies. As others have said, your first therapy should be Herceptin, Perjeta, and a taxane, and there's every reason to anticipate a sustained response.

If you want to learn about approved therapies, helpful hints, cutting edge research and more, you are welcome to read my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For information, please visit https;//www.insidersguidembc.com/about

Wishing you an excellent outcome!

cyathea

Hi BNS, I was in a similar position last year. Everyone is different, but I found the first few weeks to be some of the most difficult because I felt I needed to tell family and some close friends.

Telling my Mom was hardest because I knew the diagnosis would make her worry for me. Telling my close friends was not so bad because I didn’t feel like the news would hurt them as much, but hearing their sympathy had the opposite effect than they intended. I felt like I was handling the news with strength, grace and optimism but hearing their concern over and over again chipped away at my strong foundation, but I kept going by focusing on the day to day activities of life.

I work for a small company and everyone knows me as a Type A “workaholic”. Since I knew I was probably going to miss some work, wear a wig and lose my eyebrows and eyelashes, this diagnosis was not something I could hide from them. I remember spending hours thinking of what to say and how to break the news. I told my boss (our president and owner) first. Next, I told a few others individually who I have known a long time and work with very closely. Finally, I told others in a meeting.

I used the days waiting for MRI and biopsies and doctor appointments to research how I wanted to handle things. I bought a wig, buzzed my hair, bought some scarves and hats and scheduled a port installation. It felt good to be pro-active and DO things while knowing that treatment would make some things difficult in the months to come. I didn’t start chemo until the end of July and my MO told me not to worry about the delay.

Yes, this is a scary time and it is emotionally draining, but you can do this. You can see from all of your sisters on the forum that we all have our tough times, but we have committed ourselves to this fight/journey/or whatever metaphor works for you. We are here for you. You came to the right place. Feel free to private message me if I can help by sharing more of what I did last year.

It’s hard, but try not to think about whether you’ll have pain, side effects, or more mets in the future. (“Sufficient unto the day is the evil thereof”) Address those when they actually happen. You may not have the same SEs as others and you’ll have a team of medical people to get you through those as best as possible.

(((Hugs)))

BNS

Thank you so much!

Bestbird, sure I will be happy to read your book!

@cyathea, thank you for sharing your personal journey. I had a smile on my face while reading because I almost did the same. I started calling my sisters, friends, told my big boss and my direct supervisor, continued work like nothing is happening!

I take you advice, received already from earlier feedback to take it easy. I feel lucky to have you all in my network. I have learned a lot and you all give me strength.

Take car

ShetlandPony

BNS, you asked about lifestyle and what else you need to know, and that made me think of something that many new patients do not realize, something in addition to medical and mental health issues, that I feel is wise to understand and address sooner rather than later: Cancer is expensive. The phrase for it is Financial Toxicity. I think if I had been alerted to this sooner, I could have planned better and handled things better. I suggest that when you have steadied yourself from the initial diagnosis and treatment, you take an opportunity to assess your financial situation. It may be you will want to simplify or downsize some things, maybe consult with a good financial planner, in order to make the road ahead smoother.

Even people who have insurance suffer financial toxicity. I didn't even know it was a "thing" until I started browsing that term and reading articles. People with insurance use up their savings and end up selling their homes, or even going bankrupt. It is not just co-payments and deductibles — which are huge — it is lost work time, inability to work, spouse needing to take unpaid time off work, travel expenses for treatment, all the extra OTC and supplemental things we have to pay for to deal with side effects, paying for help or take-out food because we are too tired to do it ourselves. Most of us stage iv people live with some level of fatigue. Better to take it into account and make adjustments and prioritize.

My DH has a chronic health issue as well. It was important to realize that my family was not suffering financially because we had been stupid or lazy. When I learned more, I was not quite so bewildered at the difference between how things were supposed to be, how they were for non-cancer friends and family, and how they were for us. We ended up selling our house and downsizing, which was very stressful and exhausting, but we landed in a good place and are very glad to have things manageable and not overwhelming.

I don't tell you this to make you worry, but in the spirit of knowledge is power, and I wish someone had told me about this at the beginning.

BNS

Thank you for sharing this information with and I can confirm to you with all the questions coming to my mind, fiances were not part of it at all. But what you said make a lot of sense. I will follow your advice and ensure getting help from a financial planner.

The other question I also would like support is the diet. I was told that cancer cells like sugar/sweet to grow. I usually do not like sweet stuff but I like honey in my tea. Does a MBC patient have a specific diet? Where should I look to find a nutritionist specialized with on MBC

moth

all cells in our body need glucose. If we don't consume it, our body can convert other substances into sugar, including cannibalizing our muscle cells. Cancer cells are metabolically very active so they consume a lot of glucose but I don't believe there's any evidence that you can starve cancer cells by limiting sugar because our bodies will just make it. I still consume sweet things - because I like them 😊

ShetlandPony

I agree with moth. Based on my research, I believe the main problem sweets may present is spiking insulin, and you can moderate that by consuming protein, fiber, and fat along with the sweet. So fruit pie or chocolate-covered almonds would be better than candy or white cake. Green tea with raw organic honey gets a thumbs up from me!

There are whole BCO threads on diet. You will find various and strong opinions! Take what is helpful but don't get stressed over these things! (Stress is bad.) Eat healthy (most of the time) and exercise. Enjoy life.

My favorite food site is Foodforbreastcancer.com. The author keeps up with relevant research.

A well-liked book that has a lot on the subject of diet and cancer is

Anticancer: A New Way of Life by David Servan-Schreiber, MD PhD

According to Schreiber, cruciferae (broccoli, cabbage, etc.) and alliums (Onions, garlic, etc.) are some of the best foods. Be cautious about supplements during chemo and keep the oncologist in the loop.

Not a cancer book, but quite relevant in my opinion, is

The Blue Zones: Nine Lessons for Living Longer from the People Who've Lived the Longest by Dan Buettner

Here is my list distilled from my reading of this and other books: Physical Activity, Sleep (7-9 Hours in a very dark room), Nature, Family Life, Social Groups, Spirituality, Plant-Based Diet, Moderate Eating, Life Purpose, Stress Reduction (meditation, laughter, etc.), Avoiding toxins and xenoestrogens. I would be happy to elaborate on any of these.

exbrnxgrl

Welcome but sorry that you're joining us. I'm going to chime in on the subject of diet. Please understand that everyone decides on what they are comfortable doing or not doing so this is not advice, just my personal feelings and experiences. For about 6 months after my dx, I juiced anything I could, cut out meat and dairy, sugar, alcohol, you name it. I was quite miserable for a number of reasons including fighting with one of my daughters who was policing me, being limited at restaurants and meals in family/friends homes and most importantly, I wasn't happy! I decided that I'd rather live fewer years and be happy than more years and be miserable. I realized that I had a good diet to begin with so I went back to my regular eating habits. I enjoy sweets, meat, dairy and alcohol, just not all the time and those things comprise a tiny part of my diet. I am completely happy and comfortable with this but that is me. Whatever you choose to do research it well, look at risk vs reward and... will it make you happy and is it sustainable.

I have been NEAD since my initial tx. That was 9 years ago and although I have had a bmx, I have never had any chemo, only AI's. There are so many variables with bc. It is mind boggling to me even after 9 years

BNS

exbernsgrl, thanks for this. Will keep it in mind moving forward.

Starfyre

I was just diagnosed last month with Stage IV Metastatic Breast Cancer with metastasis to the skin only. PET scan showed nothing, not even the 7 small tumors (the largest was 1.2 cm) identified by biopsy. I am wondering if the PET scan did not show these, what else is it not showing? The surgeon tried to get it all, but all 7 did not have clear margins. More spread that could not be seen I suppose.

Is that unusual to just have skin metastasis? I had/have 7 tumors on both breasts. Even on my mastectomy breast. I could not find any cases online on just skin mets. They all say these are indicative of poor prognosis and is a sign that there is cancer somewhere else. I am trying to wrap my head around all of this.

Has anyone had their breast cancer spread to the skin only?

KBL

Starfyre, I have Stage IV de novo occult. It is not seen on any imaging in my breast, so no primary ever found. I’ve had every imaging modality, and the only thing it has ever shown on is MRIs of my spine. I have it in my stomach, biopsy proven and throughout my entire spine, also biopsy proven. It’s never shown on a bone scan or PET scan and doesn’t show on a CT scan.

BNS

i recently started Letrozole and received the Ibrance yesterday.

After 3 weeks of Letrozole, I have not noticed side effects, crossing fingers that the Ibrance will be the same!

however, since my biopsy of the spine , I am not sleeping well ! Any advise on how to get my sleep back

Spookiesmom

That’s ibrance for you!! You notice something, it hangs around a month or so, then it’s gone. May or may not return. I’ve had chemo tears for a cycle, never returned. Sleep issues come and go. Maybe a week, sleep normally, then again. I can’t figure out the sleep one. I do take melatonin, on those nights, it doesn’t help. If it’s really bothering you, call MO. Fatigue seems to be the most constant one for me. Not sleepy, tired.

Starfyre

Thank you so much for your reply. I am still trying to figure it all out. I have a breast MRI on Tuesday. So weird that nothing shows up on any test I have has so far. Just positive biopsies.

KBL

I totally understand how you’re feeling.

GlobalGal

Dear Starfyre,

Like KBL, I have Stage 4, de novo, occult. It has not been found in any imaging of my breasts. I had breast cancer in my 3 central neck lymph nodes, which were removed as part of a thyroidectomy for papillary thyroid cancer.

At this point, I suppose I am NED. Three PET scans (and all other diagnostics) have been clear (so far).

Nonetheless, I have felt extremely exhausted for over a year, which I suspected might be cancer-related.

Turns out I have extremely low levels of Vitamin D as well as B12, so low that my red blood cells are half deformed and not carrying oxygen properly. It is not diet related, I don’t have celiac, and I don’t drink alcohol, I get 15 to 30 minutes of sun almost daily, but absorption is somehow still an issue.

Here’s hoping multivitamins help perk me up!

Spookiesmom

Not to hijack this thread. Your body doesn’t make D3. I’m in Florida, you’d think I get enough sun. When it was tested, I was way low. I take 5000 mg daily, am at the low end of normal and can really notice if I miss a few days. I also do B12, 2000 daily, didn’t see much improvement. There are some here who say to take vitamin K with the D3. If you are on a blood thinner, use caution and run that by whoever monitors your INR.