I need to have a bit of a vent and I know you ladies will understand where I'm coming from.
So in the UK today a well known former girl band member has announced at age 38 she has been diagnosed with MBC. I am very saddened to hear this news.
So here's my issue...social media has the usual out pouring of well wishers which is lovely to see the kindness towards this young woman but also the amount of messages telling her she will come through it, and they hope she makes a full recovery etc... it really got me thinking about how the media report on secondary breast cancer. The articles that ensued after the announcement clearly stated that she has advanced breast cancer and I quote 'is throughout her body' yet people were still wishing her a speedy recovery! I felt quite bothered by what I was reading so I can't imagine how this lady must feel reading all these messages. Then on the flip side others were saying how their mum, aunty, cousin, sister etc...had advanced breast cancer and had died fighting to the end😲, just what you want to read when you've just been diagnosed!
I suppose I'm shocked at the amount of ignorance surrounding this disease. What are your thoughts/experiences on this lack of awareness?
I read about Sarah Harding's diagnosis too and was saddened to hear about it. You're right, the media report of her diagnosis was full of ignorance.
I suppose I was also ignorant about metastatic breast cancer before my diagnosis. But I knew enough at diagnosis to realise that if it has spread it cannot normally be cured, so I knew that before my oncologist told me.
I still deal with ignorance on a regular basis. I ran into a friend outside Sainsbury's the other day and she asked if I was still having treatment. I'm tired of telling people, so I said yes and that my case isn't the same as other people we know who have had the disease. I really don't want to tell everyone it's metastatic. What would it mean to them? Would they think I'm about to die?
I just hope Sarah has lots of support from her family and friends.
Sophie
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Totally agree sophie regarding not wanting to explain to people about it being metastatic, we shouldn't have to, its exhausting and upsetting and I can't bare the head to one side puppy dog eyed look you are often met with. If it was reported on properly, factually then it would take some of the 'responsibility' off those diagnosed to 'break the news' as it were about just what we are facing.
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Hi Caroline,
I also find it exhausting and upsetting having to rehash the whole thing over and over again. I hate “the look” too. The first time I got it was when the doctor leaned over me as I lay on the table after my first ultrasound. He said there was a strong possibility I had breast cancer and then walked out of the room. I had gone to the hospital on my own for my initial examination, mammogram, ultrasound and first biopsy as I didn’t think it was serious. I was alarmed that it could be cancer, but still had hope it was just a cyst. So to hear that was a big blow. But it’s comforting to share with others who understand what this is like.
I totally understand where your coming from I do find there is alot of ignorance when it comes to breast cancer from unaffected people. I think alot of it comes from the fact some people don't know what to say and others who like to inform us of people who died well... I think they are plain stupid like you say who wants to hear that when you have been diagnosed. I was diagnosed with breast cancer a week after my 37th birthday and I had afew people say how I'm a fighter etc and I will get through it I knew they meant well but I did find it very annoying because if it was all about us fighting we would all survive unfortunately it doesn't work that way cancer has a mind of its own. We have to stay as positive as we can. And make the most of the little things. Sending you a virtual hug xx
I can really relate to what you are saying. I was 39 when I was diagnosed with this disease. It's not something you expect when you are in your 30s, is it? I saw breast cancer as an older woman's disease. The mind boggles really when people tell you about so-and-so who died from cancer. I have had that too. I just don't know what to say to that. I think people say it as a way of showing camaraderie (of sorts) if they knew someone who died, but I find it very hurtful. It makes me place myself in that dying person's position and I imagine myself on my deathbed! If people knew that's what affect that comment had on me I think they would feel ashamed of themselves. Next time I hear it I will have to speak up. I often don't as I am trying to spare people's feelings, but my feelings are also important.
I have to also agree with your comment about "fighting" this disease. To me, fighting means being in constant battle formation, and not letting my guard down. That is exhausting to even contemplate. It also implies, as you said, that by having a "fighting" spirit we will "conquer" and "defeat" cancer. But what does that say about my mum, cousin, grandfather, friends and everyone else who has died from cancer? Are they losers? No way! So rather than being a "fighter", I am living with cancer. I find that far more manageable.
Sophie
People’s awareness of MBC is virtually non existent if they haven’t been directly connected with someone they know with this type of Cancer.
I was also ignorant of the fact it existed. I was diagnosed with Stage 1 breast cancer, got the all clear after five years, then a few months later was diagnosed with Stage 4 MBC to virtually all my bones and lungs.
I think the media should do more research on MBC and explain to their readers it’s not about getting better it’s about needing support whilst we go on this journey.
We fortunately are not in the Public’s eye and we don’t have to put up with the stupid words people say but we do have this wonderful forum where we can help each other and post how we feel and also post really positive things.
Everyone knows someone that has passed away with this illness but like you quite rightly say why do they have to mention it.
Thank you for posting your thoughts, it’s good to see the response and know we are not the only ones that think this way.
Take care
Cheryl
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Hi Cheryl,
You're right, we are not in the public eye, so in some ways we are spared. I was also thinking of two of the Nolan sisters who are both currently dealing with a cancer diagnosis. It must be hard to feel the need to explain to the world what is going on in their lives. It's certainly not something I want broadcast.
Sophie
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That’s right Sophie. I feel it’s private outside of my circle of acquaintances. I didn’t realise two of the Nolan sisters had Cancer. The family gene pool must have been researched.
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Yes, Linda and Anne are currently undergoing treatment for cancer. Their sister Bernie had breast cancer.
Sophie
I agree with everyone else. My wife has MBC but people only hear the BC part, which leads to misunderstandings. Maybe the term should be shortened to MC, and then it could be classed as a distinct condition in its own right. People instantly understand if you say you have MS, so why not the same for MC?
Hi Sandra,
I think you made the right decision for you. Once the news is out there, you can't put it back in the bag. One thing I can't handle is the pitying looks. It was bad enough getting them from the doctors and nurses when this whole thing kicked off, but I wouldn't want it from anyone else. We have full lives to lead, despite this disease.
I know colleagues and family mean well but they are under the impression I am now in the clear.
No one around me seem to understand
I am in a really dark place.
I was told 2 days before my operation, my job will be deleted in the new structure.
I am scared and can only focus on being without an income.
All I keep hearing is concentrate on recovery. I feel so alone and tired of "fighting". I know I am being selfish but don't really want to be awake each day.
I am incredibly sorry for what you're going through, between the diagnosis, the surgery, and then the job elimination...I can only imagine...
If your company has singled you out for job elimination because of your illness, that is not only evil, but possibly illegal.
I feel compelled to mention one thing...if not for you then perhaps for others.
Has your job been eliminated yet or is this still to come? If it hasn't been eliminated, would it be possible for you to go out on disability now?
I don't know what country you're in or what types of benefits you get from your employer, but if you have disability as an employee benefit, you should qualify as Stage IV, based on the surgery and even "just" the treatment.
Even without considerations about insurance, can you "notify" your employer that you're disabled and need accommodations (lighter workload, ability to nap/rest during the day, etc.) under the Americans with Disability Act?
Once you're on disability/considered disabled, it's very difficult for them to eliminate your job in the restructuring. I don't know if this is an actual law or just something some employers do to avoid possible issues, but I worked on more "reduction in force" lists than I care to remember, and anyone on disability or who was designated as disabled was immediately removed from consideration for a layoff.
If it's possible for you to do this, I would urge you to give it a try...
Hi, I am Birdi, MBC, stage 4. One day at a time. When at times it was one hour at a time. I admit sometimes was one minute at a time. I have had same feelings too. You are not alone. Contact me at any time.
I understand where you are coming from. I was diagnosed with BC in 1991 at age 42. I was diagnosed with MBC in March of 2019. I have a tumor in my liver. Who would have thought that I would be diagnosed with MBC 28 years later. I didn't and the doctors were surprised. I have two sister-in-laws who asked me if my treatment was over. I had to explain to them that my treatment will never be over. I have an ophthalmologist who basically said the same thing to me and said "you don't look sick". I have a friend who had breast cancer 18 years ago and didn't realize that MBC means breast cancer has spread to other areas in your body. There is a lack of awareness and ignorance and I have to admit I was one of them before my diagnosis. I thought that if I got BC again it would only be in my breast, not the liver, bones, brain, or lungs. Sending best wishes to all in our journey.
I have a friend who is a nurse (RN), but not practicing. Yesterday, she said she would call me but I said I wasn’t up to it as the new chemo was causing a lot of side effects. She said she was surprised and thought I was over all that. I retired from a great career at age 53. Why would I do that if this disease were curable? I guess we are left to educate others.
Yes, so sad about that young woman, I was not familiar with her but just looked her up....So tragic to be that young, as some in our community here are...
And I know that people's ignorance can be upsetting. But the way I look at it is that there are “only” a gazillion things to know/understand in life, and our capacities are limited, so each of us can only know so much. I, for one, have a hard time knowing/understanding all the things that apply to me, my "circle”, and day-to-day life, let alone things that don't directly affect me...So I def cut people slack, especially since I now cringe when recalling people who had told me years ago about metastatic diagnoses that I didn't grasp and to which I responded with ignorance/lack of adequate empathy...
One other comment...I know everyone has their own circumstances/reasons for disclosing/not disclosing, but I'm def a discloser. I guess disclosing/discussing freely is one way to combat the ignorance?
I’ll admit to sharing not only with everyone I know (in excruciating detail, every blip on a lab report, etc!) but even with strangers (the plumber, seat mate on a plane (remember planes?), etc.) if the topic is even slightly relevant! (It's sort of like the people who've run a marathon who just wait for you to mention that you ran track in high school so that they can tell you all about their most recent race... ).
I think and speak about it as something potentially of interest…I have a disease/circumstance that most people fear and so I can put a face to it, possibly share in their experiences with a loved one/learn from them (I’m always interested to learn about anything related to the dying part), and answer any questions they might have about my experience. If people initially express pity, I assure them it’s not needed…unless it IS needed that day, in which case, bring it on!
There’s something weird in our society that makes sickness and death sort of taboo? It almost feels like “shame”. I’m def not ashamed, I’m more like proud. It’s such a huge part of the human experience and I do feel like we in this community are in the “master class” on this universal topic. For me, one of the numerous silver linings to the big dark cloud of this disease has been that I learn so much literally every day…learn’s not quite the right word…”understand” or "internalize"? Like the big things. I’m a much better, wiser, more interesting-to-myself human being for what I’m dealing with and connecting with others — even the plumber or seat mate — is more meaningful if it’s about something real, not the weather. p.s. I have several long-term correspondents, long-distance friends who began as seatmates!
Does that make any sense? Probably too woo-woo for the morning… Just wanted to share a slightly different perspective on the topic…
Lynn you are so awesome, love your detailed and personal responses to so many posts. God Bless!
Also, I have embraced a Catholic practice called "Memento Mori" Remember your death...there is a bookstore run by Pauline nuns that sells prayer books and rosaries.
Iwasborntodothis! (this will also be too long... : ) )
I keep a list of words that I read and have to look up, hoping for the chance to use them (I like words! ). Today, I was finally able to use one...My sister, Laura, was asking me if the storm, also named Laura, was going to affect me in Dallas. I said "No, it has curved east and is headed to you....kind of like an OUROBOROS!!".
So I figured that, having accomplished that verbal feat, I was done for the day...!
Then I read your response which gives me a similar opportunity (banner day! )...
...I'm wondering if your comment was sincere (I hope so... ), or an ASTEISM (which I would completely understand and probably agree with! ).
I type quickly, so can get wordy, plus so many of the posts get me thinking or remembering something, which I enjoy...
I figure that people don't, like, have to read my musings and if you or someone else happens to get a kick out of something (or a thought triggered...), great!
By the way...memento mori is such a wonderful concept. I'm going to add it to my list and find a way to incorporate it into my vocab!
BTW, I looked into the Pauline nuns via their website, and saw a highlighted post, that I could possibly relate to: "I was born to comment" - Sr Mary Lea Hill, FSP "
Lynn, thank you for your inspiring and informative posts. I always look for your responses as they make so much sense. I don't post much but read everything and am thankful for this forum. Madlyn
Lynn, I appreciate your post. I was with my dearest, decades long friend when her biopsy scan results were given. When the oncologist said "you have stage 4 MBC", tears instantly sprung to my eyes. She, however, went into instant denial and while willingly followed all treatments prescribed by her oncology team, the "metastatic" part of the diagnosis didn't register with her.
Very participatory in her care, what shocked me most was the sudden absence of her and her hubby's large circle of couple friends. It was as if the word "cancer" itself was catching...much like what can happen when people announce a divorce. A few would call me asking about her and say: "I'd call but don't know what to say..." How about a simple: "I'm thinking of you and wondering how today is going for you?"
It continues to surprise me how others react to friends, acquaintances and loved ones in times of crisis. Those who one would think would respond often don't and those one wouldn't expect, often do. It must be fear of possibly saying the "wrong thing" that has some scatter to the winds when support would be so very valued.
I've learned through this experience with my friend, how little is known or shared factually with others particularly when the word "metastic" is included in the diagnosis. So much more needs to be done to inform and educate the public at large so I applaud your sharing your experience with others.
I have stage 3 chronic kidney disease (ckd) and when I share my experience initially, sometimes others immediately respond with: "So when will you start dialysis?" and I see that look of pity on their faces. Like you, I share my experience willingly with others and wish for more education and publicity about how to manage and deal with serious chronic diseases. I want to learn all I can about how to better manage and maintain my kidney function. Knowing the facts helps me tremendously. My friend wasn't interested in all in researching but passively accepted whatever was prescribed without question.
Each journey is different and how we each respond is different too. What brings us together in these health forums is, regardless of the details, sharing the common goal of wanting to support and learn from one another.
Yeah, I agree. I can't think of another life event that creates and elicits such a wide range of reflexes/responses. There's no judgement about this at all, no right or wrong way, it's just interesting. I guess that's why it's so difficult to know what to say to someone in this situation and also why so many are taken aback by what others' say.
I agree. I get that all the time. But then, it irritated me when people who'd had Stage 1 or even Stage 0 advised me on Stage 3C. Not the same, as we now see.
Hi there, I have exactly the same feeling! I have had advanced breast cancer for three years and although I am doing really really well, there is a complete lack of understanding about the whole business of secondary cancer. First of all we have several different names for it, secondary, advanced, Metastatic, chronic etc
Then having to explain that no matter how hard I ‘fight’ ‘battle’ or ‘stay positive’ I am not destined to be cured. My sister died of the same thing- was she rubbish at fighting?
I hear you! That's why I HATE all the pink ribbon crap. They run around telling people how they're 45 year survivors, but never point out what stage of breast cancer they had. So the public thinks that all breast cancer is the same and if you just eat right, exercise right, are crazy cheerful with the "right attitude," you can beat this disease. I guess those who die, didn't do all the right things, because so many others have lived... Then there are the drug ads for Ibrance and Verzenio. They advertise that the drugs "substantially" extend our lives and in the tiny print on the bottom of the commercial for 2 seconds it mentions that "substantially = (on average) 18 months. Nobody sees that, and the public continues to think that we should all be surviving for 45 more years because the pink messaging is that breast cancer is all the same, whether it be stage I or IV.
Really interesting to read your collective thoughts, thank you for taking time to reply.
I totally get that for some of us, the less people know about what we actually go through and ultimately what it means for us the better as we don't want looking upon with pity and ignorance is bliss in terms of shielding loved ones from the nitty gritty. Like someone mentioned there's a lot of different terminology to describe stage IV breast cancer and it is confusing to get your head around.
I just feel that more needs to be done to highlight secondary as all the focus is on primary.
I find great comfort in this group. Truth is prior to meeting with my onc. and pretty much knowing I had MBC I thought I was going to die within the year. That's the degree of knowledge I possessed. I was diagnosed and treated for stage II breast cancer 18 years prior. I am approaching my one year mark of treatment for MBC.
It's been a rough year. Verzenio kicked my ass and yet did curtail much of the cancer. I ended up with inflammation of the lungs though and had a couple of months break from the Verzenio before starting on Ibrance. Ibrance agrees much more with my system overall. I'm completing my second cycle.
I've grown with this groups help to understand that this is a marathon with likely many twists and turns along the way. I'm educating myself as I go. For much of the first year I didn't have the room to look into much. Now I do. I have had a much better quality of life the last couple of months. For this I am so grateful.
I guess I'm sharing all of this to say that MBC is a complicated chronic disease! I barely can wrap my own head around it!I try to share with others when they show interest or I have a need myself. I asked my onc. how many years do I have left? She said many, many years. I hope that's true for all of us with good quality of life!
We apparently are the survivors on a relatively new frontier. That's kinda cool.
I thought that too. I was diagnosed right off the bat with MBC and thought I’d have to say goodbye to all my friends and family- I knew nothing! In the months that followed it felt like I’d joined some secret cult that no-one wanted to be a part of. After FECT for 12 rounds, and surgery, I have now been on Ibrance for 21 months ( with Anastrozole) and I feel good. Due to COVID I haven’t seen my consultant for 5 months which is a bit of a worry but he checks my bloods and calls me once a month to see how I am before prescribing the next round. We’ve learnt more because we live it every day. We are the lucky ones..........today at least.
The Chaplin came around not long after my diagnosis of MBC saying don't worry you will soon be better, my partner went mad with him. If people say hopefully you will be cured or you look better, I just agree because if I tell them I cant be cured then they feel sorry for me then that makes me feel worse. I was on the ward with people with COPD and they felt sorry for me but copd is only going to get worse and my meds help me breathe better even if it is a short time
People are always telling me how well I look and asking if I’ve finished treatment. It’s true I have never ever looked healthier! I do talk about the disease, just like Lynn Fish above, to anyone who wants to listen but I do have techniques to keep it at a level I feel comfortable with and stop the pitying looks.
I went to the dentist today and the dental nurse mentioned the lady who is the subject of this discussion. When I explained that mbc was treatable but not curable I saw the penny drop.
I’m lucky (sort of!) as I grew up in a family with a lot of cancer so I feel that I know what to expect and that takes away a lot of the fear. With so many people now expected to be diagnosed with cancer at some point in their lifetime, I feel that talking about it is quite important and if I can do it, I should, but everyone has to decide what’s best for themselves and if that’s not talking about it, that’s fine too.
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(It's sort of like the people who've run a marathon who just wait for you to mention that you ran track in high school so that they can tell you all about their most recent race... 
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Do you ever have guilt of living when someone else passes away? 
