Hi ladies
I received an email from this organisation so I opened it...was about metastatic breast cancer and the opening paragraph stated that ‘on average mbc patients live for 2-3 years’
It really upset me
Barb xx
Email from ‘living beyond breast cancer’ - SHARE Metastatic ...
Email from ‘living beyond breast cancer’
Written by
Barbteeth
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147 Replies
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Well- THAT’s a pretty dumb opening line!!!
Yes it is. Freaked me out and stopped me from listening to or reading anything else
Can you copy the email and send it to me directly. I have some friends involved in LBBC I’ll complain to
*********
Got it now. Th and you. Will send it forward.
However, maybe this “average” includes those with no health ins, those who are capped, as well as being old stats. Interesting though. Such poor wording and certainly not the least bit compassionate!
Yes. Just a really poor way to engage people with mbc. Scare them off and depress the hell out of them. Wonder if they consulted someone living with this.
That’s a weird thing for them to say as they are usually really good! I mean, just look at the years on this board and you’ll know that that number isn’t true!!
How awful! Did you reply back and give them 'what for'! ?
X
Me too. Deleted it immediately. This is a legitimate organization. Think this statistic is outdated and certainly not sensitive to those of us dealing w mbc. They could have done a lot better.
So not true
Barb, if I got that letter, I’d never open another thing from them. It would have upset me so much! I’m surprised you didn’t burn it! Elaine
It was an email
Barb xx
We know better and must ignore things like this and stay positive and focused on new discoveries and next steps. We know more than most doctors at this point!
I am almost 63. My younger son turns 50 on 1/23/45. My goal is to see that. I would be 88. And until I hear otherwise, I keep that goal. Unrealistic? Maybe. But so is 2-3 years!
Anen
I love the goal setting idea, thank you! <3 my mama always added "and 20 more" to her birthday wishes! xo
Love it...start a group, that is the type of attitude all of us need.
Hi Barb,
I'm so sorry to hear that! Don't these organisations realise that we are real people, living with a difficult diagnosis? We are not expecting a cure within a year or so following surgery, chemotherapy and radiotherapy. I agreed to complete a survey about metastatic breast cancer a while ago and there was a question about how my family and I feel about my diagnosis. I was upset by the question, but answered that it's a devastating diagnosis and how would they feel if it was them? Unless these people are in our position, they have no idea what this is like and how insensitive they can be to our feelings and daily struggles. I won't be completing any more of those surveys and if I get them they are going straight into the bin!
I'm thinking of you, Barb.
Sophie
Barbteeth in reply to
Thanks Sophie
It just felt like a kick in the guts as I had been feeling positive lately
However I had some sad news as well yesterday which perhaps made me feel more susceptible...my lovely auntie Margaret died yesterday of a stroke...she was special to me and looked after me when I was a little girl after my sister died and my mum couldn’t deal with it...she was very much like me and I’ll miss her
Barb xx
So sorry to hear that. Sending you love x
💕Barb
So sorry about your Aunt’s passing. I think losses are much harder when you’re going thru what we are going thru. It reopens wounds that aren’t very far from the surface and starts us spinning our wheels. I am so sorry for the utterly bad timing of that email, which is like getting hit by a hammer. I hope you will soon feel less overwhelmed. You are a strong pragmatic woman. I hope your friends and loved ones will be extra supportive at this fragile time. I am going thru treatment for some progression now and I did not need to see that email either. It’s made my struggle worse. Sending a hug and know yiu are not alone in all this
You’re right about how vulnerable we are when faced with sad news...I’m so sorry you’ve had some progression...it’s going to happen now and again and I try to be realistic about it but it’s horrible...are you changing meds Nancy?
Anyway you’ve proved their bloody outdated statistics and will continue to do so
All the best
Barb
Xx
Right now I’m undergoing daily radiation. I will post more when I can. The Ibrance and faslodex are on hold.
Good that you can stay on the same meds for longer...same as me
I probably will need more radiation soon..having scan on Monday to see if new spot on my liver has grown
What a life!
I hope you cope ok with the radiotherapy...I found it made me very tired but it did improve gradually
All the best
Barb xx
Thinking of you Nancy as you undergo radiation therapy. Healing thoughts for you...stay strong! ❤️
Sending love and hugs for few side effects and successful treatment!
Love,
Marianne
Nancy
Sorry to hear about progression. Hoping the radiation zaps them out of existence! My thoughts and prayers are with you. Sending you love and hugs♥️♥️♥️
Radiation helped alot with my pay in (it takes some months to be effective for that). Hope you get thru this with little in the way of complications and achieve whatever the goal is.
♥️
So sorry to hear about the progression Nancy. Last thing you want is something like that inaccurate email. I hope the daily radiation do it's work. Sending you love and big hugs. xx
I am very sorry you are going though treatment for progression and I wish you well and hope the treatment is successful.
My last scan showed very slight progression in the Axilla so I am having another scan soon to see if this was just a blip or definite progression.
The last scan was the first time since fracturing my humerus that I was able to lift my arm up over my head so I actually felt everything relating to my arm was so much better.
I’ll just have to wait and see...
Jo xx
in reply to Barbteeth
Hi Barb,
I am so sorry to hear about your auntie Margaret. She sounds like she was a very special lady who played a really important role in your life. I'm sure that receiving that email and hearing about your aunt's death must have made you feel so much worse. I'm sorry you are going through a hard time. I hope that your husband and daughters are able to comfort you.
Sophie x
Barbteeth in reply to
Yes they’re supportive..hubby will take me to the funeral...it’s in Hartlepool where I come from ...it’s the church where all my family were baptised and married...there’ll be a requiem mass and I’m getting worked up about it
Must get a grip
Just off to meet some chums...it’s one of their birthdays so I’m forcing myself to go...might take my mind off it...having afternoon tea
Barb xx
in reply to Barbteeth
I'm glad your family are being supportive and giving you what you need at this difficult time, Barb. The memories will probably start coming back as you return to the church where all those family events took place.
I am thinking of you.
Take care,
Sophie x
Barbteeth in reply to
It’s a lovely old church and just opposite was my convent school ( not there now though) so that was a big part of my life until I was 18 and left to study in Sheffield so the whole experience will be very emotional
I’ll get through it...I’ll see lots of my cousins and people I’ve not seen for years
I always avoid funerals in general as they upset me but I must go to this one or I would regret it
Thanks for thinking of me
Barb xx
in reply to Barbteeth
Take care, Barb. I know funerals are difficult, but hopefully seeing your cousins and getting to say goodbye properly will give you a sense of relief.
Sophie x
I’m so sorry for the loss of your Aunt Margaret. Sending healing hugs from across the pond...❤️❤️❤️
Oh Barb. I am sorry to hear about your Aunt's passing. And what a bunch of blinking idiots who scripted the mbc email. That would bug me too. Just remember we are all unique and should not be compared to other stats. We dont know their history, age, preexisting conditions, mind set and so much else. Focus ahead!
I know you’re right but this stuff can twist things on your mind so you don’t know what to believe
Barb xx
Barb
So sorry to hear about the passing of your auntie Margaret. Sounds like she was an angel on this earth when you very sadly lost your sister when you were a little girl.
I have avoided funerals since my diagnosis but I know the time may come when I have to go ......
Sending you a hug 🤗
Jo x
Barb, sorry to hear of your sad loss , as your aunt was no doubt very special in your life and I am glad your husband is taking you up north for the funeral . Take care x 😘
in reply to Barbteeth
Barb - please accept my sympathy. What a loss for you. What a gift she was for you.
It’s American ! But that’s no excuse.
I don’t think they looked at it from our perspective and they should have. They obviously got our names and emails from some source, probably this one, and they should have considered how the wording would affect us, their target audience.
Hi nstonerocks ! I do not know how LBBC sources their contact lists, but I want to assure you that your names and emails are not given out from this site!
Missa I was thinking Health Unlocked, not SHARE. I’ll check my settings and make sure I opted out of sharing my info and email
😂🤣😂
Barb,
It feels like a kick in the gut when I read studies like this. Let’s all prove them wrong!
Tam ❤️
Many ladies on here have done so...if they know the statistics are outdated then why throw those at us?...why not be honest...obviously they’re not walking in our shoes and can’t possibly understand what it’s like day after day trying to stay normal
Barb xx
I feel this way when my PCP shoves a DNR form at me to sign every time I have my yearly physical! I get furious!
Whaaaat!!!
I’d bloody chuck it at them...how insensitive
Barb xx
Thanks for validating my feelings. I’m looking for a new PCP!
in reply to Tam-56
Tam — I switched oncologists after my MBC diagnosis. I realized I needed a warmer approach with this development. I am so relieved I switched. It’s helped me to have a more caring provider. I hope you find a better PCP soon.
Geeze. I don’t even know what to say.
Thats not accurate information. It must be a typo right? I have never read that before!
Hi Barb, sorry to hear about your auntie, life is a bit of a b....r isn't it? When I was given my diagnosis my oncologist told me..two to three years. I wish now that I hadn't asked. I am sure that these new medications will be proving the statistics wrong. Cheers, have another glass! Fayx
Sorry that it upset you. This is a great organization. We went to their fall conference and the speakers were tremendous. It is well worth staying connected to. Perhaps an email to them would be a good idea
The stats are 5 years old and go 5 years back. For example...they are from 2009-2014...They don’t take into consideration my Perjeta that’s only been out about 5 years and I believe Ibrance about the same. I believe most of us on here are living proof that 2-3 years is really on the shorter end of things! 😀💕🎊
Reminds me of the time we were at the doctors, just the internal med doctor, not the onc, and he looked at me and out of the blue said, "you won't live past 10 years" and I got so mad at him and told him, you don't know that, only God knows how long each of us will live. MONTHS after not being mad at him anymore over that statement, I told hubby, maybe he thought he was giving me hope since I am stage 4, maybe, just maybe, he thought I THOUGHT I was dying in a year or in months; why else would he inject that into the conversation when we weren't even talking about that??? ... anyway, no time limits, we get one day at a time and that's it! no one knows how many days ANYONE will get. They honestly need to do away with the stage 4 classification or make a stage 5, because people who are uninformed associate it with being on our last legs. The people who sent you the newsletter by email SHOULD know better though ... sheesh!<hubby's word><grin>
Nothing changes. In 2000 when I was diagnosed with stage 1 and no node involvement, all the books and articles said expect up to five years. Now I am told to expect up to ten years with all the new treatments.
Barb I am so sorry about the loss of your special aunt.
Blessings Hannah
Sandra, I agree with you. My onc, who has no compassion whatsoever, told me that if I lived two years post diagnosis, I’d be a “clinical success.” I think the stats he was referencing are outdated, but even the updated stats are a disappointment. We just need to remember that those are based on averages, and there are MANY factors that affect our survival.
I believe that this disease is very individual affecting all patients differently, just as the different drugs do. True there are common facts in all but ultimately each individual response to the disease is different. I think your ONCO Sucks, and would not spend one more dollar with such a negative caretaker. You need and deserve encouragement, optimism and true caring as you are not a statistic. Just saying.
Thank you! Agreed, and you’ll be excited to hear I fired him earlier this month. I managed to switch to another onco who has a wonderful rapport with his patients, including an MBC friend of mine. I meet with him on March 6th, and while I’m nervous, I’m also feeling hopeful.
Thanks for the encouraging words. Don’t know what I’d do without this support group.
Barb: So sorry for the loss of your beloved Aunt. I pray God would comfort you in your loss & give you peace in the difficulties of the day. ❤️🙏❤️
Well, we know that is not true. They are probably trying to sell something or request some type of donation so that they put FALSE statement in the opening paragraph to catch your attention so that you will read the rest.
I am so sorry about your Aunt Margaret. Whenever I hear or read information like that I just ignore it. People or organizations that say that crap are idiots and extremely insensitive. I think our greatest strength is our mind set. Don't get me wrong I have my downer moments but then I just pull my big girl panties up and tell myself this isn't going to ruin me.
Sending you love and hugs for you and your family.
Love
Robin
Barb,
That would have upset me too! I wouldn't have continued reading!
Barb
So sorry about the loss of your beloved Aunt. May you find comfort and peace in the love you shared.
I get too wrecked when I see statistics about mbc survival. I just put my trust in God- when it’s my time it is but until then I will do all I can to fight this damn beast.
♥️♥️♥️
Hi all - I was upset after reading Barbteeth's post about that email and fired off an email last night: Here's what I wrote:
To LBBC:
I wanted to let you know that apparently a newsletter you sent out was upsetting many people with MBC. I will try to include a screenshot from my phone on this email but apparently you included a statement that MBC people would only live for 2-3 years. Really? Thanks. Since I’ve only been an MBC survivor for one year, guess I won’t be donating to your organization after two years.
I haven’t read the newsletter you sent but I have gone to your last conference in Philly for MBC and am appalled you would include an insensitive statement that could upset the very group you are trying to support.
Please try to be considerate with your future letters.
LBBC responded this morning with this:
I wanted to reach out to thank you for sharing this feedback with us, both your own and those of several others who received our email. I want to apologize to you, and to the other women and men who were hurt by it. In our desire to educate a general audience, we did not fully consider the impact of those words on people coping with metastatic disease today.
The commenter who noted that this statistic is out of date is very likely correct. Much of what we know about diagnosis and survival rates is based on old information, from before the identification of HER2, intrinsic subtypes, and some of the information we have about biomarkers today. One of the things I find most frustrating – and that we educate our Hear My Voice advocates about – is the lack of information available about who and how many people are diagnosed with metastatic breast cancer, the types they have, and the implications for their survival. It frustrates our efforts to support research and cures. For that reason alone, we should have been more careful with our words. But it is also true that the conversation about length of life is private, and one that should happen between a doctor and a person coping with MBC, at the time they choose to have it. In our enthusiasm to communicate urgency to the general public, we should have considered the impact on those we serve.
I am sorry, and I truly appreciate that you shared feedback to give me an opportunity to think about it. I hope you will consider giving Living Beyond Breast Cancer a chance to do better in the future.
Warmly,
Janine
Janine E. Guglielmino, MA
Senior Director, Programs and Partnerships
Office: (484) 708-1542 | Mobile (215) 431-9332
LIVING BEYOND BREAST CANCER
I plan to respond to LBBC and will recommend they focus on the positive.
On that note, I wanted to share that I donate my $ to Breast Cancer Research Foundation because they are currently the largest private funder of metastatic breast cancer research in the world and they often have positive articles. A recent one is about a woman who was diagnosed with MBC in 2015. According to the article, she qualified for a targeted therapy. For the first time, her scans reported regression in her brain lesions and tumor markers.
“This was the first good news I received in over a year,” she says. “This is a direct result of research.”
And guess what? She ran the Boston Marathon last year (which even my 30 something co-worker who runs about 10 marathons around the world hasn't been able to qualify for yet). And she just ran the NYC marathon last month.
Link to article: bcrf.org/blog/mother-daught...
So take that LBBC and your outdated stats!
Just read this...an inspirational story!
That’s the sort of thing we want to hear not doom and gloom statistics
Thanks Jonesburger
Barb xx
What great news. I could cry.
in reply to Jonesburger
Good for you! I think you did the right thing writing to this organisation and letting them know how their actions have hurt people they are supposedly trying to help. I don't give to breast cancer research charities, I won't be completing any more surveys and don't plan to attend any more cancer forums. There is too much talking and not enough action. We need a cure, not more talk!
Sophie
Well done you for letting them know how insensitive their correspondence is to ladies with mbc
Thanks so much
Barb xx
in reply to Jonesburger
Wow! Good for you. What a difference you made with your sincerity and tenacity. Thank you for doing this.
Oh I hope so...it’s hard to stop obsessing over it...I just don’t want more radiotherapy as I’m not totally recovered from the last one
Thanks for your good wishes
Barb xx
My Oncologist said he considers my MBC a chronic illness and I’ll live a normal life. I am on Ibrance and Letrazole.
I went to a Palliative Care Doctor due to pain and cramps in my back and intestines. She reviewed my pain meds and added Gabapentin. She recommended Vital Reds which is a powder and found on Amazon. She also said to drink Ginger Cumin Tea from Trader Joe’s as it reduces inflammation. Then she recommended acupuncture. I had two sessions and have not had to take my heavy pain meds.
My husband said I look better and move better. I will have another session next week. Let’s send each other sunshine thoughts.
These negative comments are not true.
Love all of you. Reenie
I am so sorry to hear of your bereavement.
As to the email, I had a similar experience a few weeks ago. I belong to a closed Facebook group for primary and secondary breast cancer. The charity breast cancer care previewed an upcoming campaign where those of us with mbc were described in a very negative way, using a term I found highly offensive. I had not long found out about the progression to the liver and was feeling particularly vulnerable. I spent the whole weekend so angry that I really just didn't know what to do with myself.
Most people on the Facebook page were polite but said they felt the term unsuitable, I wrote a very strong response about how offensive and upsetting the term was. I also wrote to the charity and asked if they intended to air the campaign and got a defensive reply that no one else found the term offensive and it was important the campaign was hard hitting.
I spoke to contacts and colleagues about action I could take. The use of the term I think breaks discrimination law, they are also a charity which carries responsibilities and the advert is offensive. So that's the charity commission, advertising standards and the equalities commissioner. Once I'd got a plan I felt better. I'm pleased to say that I haven't yet seen the advert but at least I'm prepared if it is used.
These are charities who are supposed to be on our side, well all I can say is that with friends like this who needs enemies.
in reply to Julie2233
Hi Julie,
That must have been so upsetting for you. I think that some charities feel that they can hide behind a cloak as they are a "charity" after all, but that does not absolve them of responsibility to act in an ethical, upright manner. The response you got tells me that they are not really interested in the people who are actually living with metastatic breast cancer, but that they have their own agenda. If they were interested, they would not treat us with such disrespect and insensitivity. I hope you are feeling better about things today.
Sophie
Julie2233 in reply to
Once I'd devised an action plan I felt better. In the uk anyone with a cancer diagnosis is legally defined as disabled and so are protected by the equalities act, they cannot just say what they like without consequences. Since my diagnosis I have become far more strident about making my point when there is an issue and I feel a lot better for it 😊
in reply to Julie2233
Yes, I'm from the UK too, Julie, and don't agree with being treated like that. It's completely out of order. Like you, I have become more proactive and outspoken since my diagnosis. I don't think it's right or fair for us to be treated like that, especially by these so-called "charities" that are meant to be advocating for us. I find it hard to trust them. What is their real objective? Do they really want to find a cure or just make a load of noise and seem to be "helping" cancer patients?
Barbteeth in reply to
Sophie as you know I’m not a fan of so called charities...there’s a lot of attention seeking involved and as for the pink brigade I find it distasteful but that’s me!!!
As for the money raised...who knows how it’s divided up....doubt it’s for mbc...usually awareness...well I think we’re all aware by now and the money could be put to better use since 30% of primary breast cancer will become metastatic apparently
Barb xx
in reply to Barbteeth
Barb, I feel the same as you. I also dislike the way some charities operate and are trying to be seen to be doing something. Much more should be done to help us all survive breast cancer, not just those who are early stage. I know they are not all like that, but some are. One of my clients is involved in several different charities, including a local homeless charity, dog rescue in Romania and Greek orphanages, but she doesn't make a big deal about it. She only really talks about it if I bring it up or I ask her how her collections are coming along.
It's funny you should mention the "pink brigade" because when I saw my oncologist on the 11th I was wearing a lot of pink! A pink coat, scarf, sun glasses, flower in my hair and I have a pink phone cover too! It's just pure coincidence, as I love pink and am quite girlie! But I hope my oncologist didn't think it was all breast cancer related. I don't feel the need to do that.
Sophie x
Barbteeth in reply to
I sometimes wear pink as well...just bought a pink jumper....that’s hilarious you turning up in pink gear for you appointment!!
Yes there are a lot of good people out there who unselfishly raise money for many worthy causes but don’t brag about it
Barb xx
in reply to Barbteeth
I bet your pink jumper is pretty. I didn't really think about it at the time and how all that pink could have been interpreted! I was also wearing a black evening dress and my favourite black heels. Not that it made much difference, as I had to undress for my oncologist to examine me. I get examined every time I see her.
Sophie ❤
Barbteeth in reply to
I never get examined
Barb XX
in reply to Barbteeth
My oncologist has examined me every time I have seen her, apart from one time when her nurse wasn't there. I've got a feeling she is keeping tabs on the tumour (and not telling me her thoughts), as it's been shrinking a lot. She told me in a dismissive sort of way that the radiologist stopped measuring it on my scans a while ago, as "the trouble is it's hard to measure." I corrected her and said it wasn't a problem for me!
Sophie ❤
Extremely insensitive. I don't always open everything and I'm glad I didn't this one! Grrrrr!
I'm sorry Barb that the post or email has upset you so much!! I'm also sorry and you have my sympathy on the loss of your Aunt. But you said she died of a stroke so this just goes to prove no one knows how long they have!!!! It doesn't matter how healthy or unhealthy someone seems to be you don't know when your time will be up!! Look at the people killed in the school shootings. People killed in car accidents. And recently in our area two people who one in there mid 30s and one late 40s very physically healthy runners ,swimmers, bikers , and they died suddenly from aneurysms. So just keep statistics in there place cause no one knows how long they have!!!! Keep up the fight don't let worry bring you down!!
Hi there
Oh I know this is so true but the odds of dying from an aneurysm are pretty low....I’m 65 and most of my chums of the same age are pretty confident that they’ll live to see their 70 th birthday and beyond whereas I doubt I will...that’s the difference
Harsh but true
Barb xx
Hi Barb, I can relate to what you’re feeling. I was just diagnosed in May, at the age of 38, and told by my callous oncologist that I likely won’t see 41. Some people (who don’t have cancer) tell me, “None of us know how long we have on earth,” as if to comfort me. And while that statement is true, it takes on quite a different meaning when you’ve been told with certainty that your lifespan will be shortened. I know that seeing 50 will be a miracle for me, and 60 is just a fantasy, but if I can’t allow even one small part of me to cling to the hope that something will change and I manage to beat all the odds against me, then I am giving in to the statistics. It is hard to wake up each morning with no hope.
With that said, as hard as it is to hear, I’m thankful there are organizations out there stating the cold hard facts, instead of glossing over them because nothing will be done to save us, otherwise. With the treatments that are available right now, I will not survive to see 45, let alone 50. But people (who don’t have cancer) still believe that I can be cured with chemo, radiation, and surgery. I’ve been told everyone survives breast cancer or that nobody dies of breast cancer at a young age. Or sometimes they tell me I have a chronic disease, as if I’m going to live a long time and just need to take a pill now and then. They need to know the truth, otherwise research for metastatic breast cancer will continue to be underfunded. And research takes a lot of time and money, so we need it funded now.
In the meantime, I try to remember that we’re not statistics, we’re human beings, there are tons of variables that affect those numbers, and something could happen that may change our future in a positive way. 💕
Poor darling having this at such a young age...my primary was when I was 40 and after 24 years it’s back now...I naively thought back then that only old ladies got breast cancer
People just don’t get it do they?.. I’ve been asked numerous times when my treatment will finish and when I say never...people are astounded
My oncologist told me at my first visit that this disease was incurable but treatable...like a chronic illness....this I find hard to believe...how can you compare mbc to something like diabetes...I think she was trying to cheer me up or trivialising my situation which I don’t like
I’m interested to know what treatment you are having?... I’m on Ibrance letrazole combo with denosumab monthly injections but have had liver progression so more radiotherapy I’m afraid which I hated last time
What a life
All the best
Barb xx
Barb, I feel the same way when someone calls MBC “chronic”! I do think they’re trying to make us feel better, but like you said, it feels like they’re trivializing our disease.
I am on the exact same treatment as you, along with a monthly Lupron shot to shut down my ovaries. I’m thinking I will give in and have an oophorectomy, if for no other reason than to cut out one of the drugs (I hate drugs so much).
You’re so right—people don’t get it. I suspect that many don’t believe I have MBC, or they think I’ve chosen to opt out of treatment. I haven’t had surgery, I have all my hair (though it’s thinner), and I suppose I look healthy even if my treatment makes me feel 95 years old.
I’m so sorry you had progression. How are you feeling today?
I’m fed up today...had a scan and review and the new liver nodule has increased in size so more radiotherapy...it made me so fatigued last time so not looking forward to it again...no choice though
Hate all this
Barb xx
Barb, I’m so sorry to hear this. I hope that the treatment helps to contain it, even though it makes you feel so crummy. Are you some place where it’s snowy? I live in northern Michigan and we’ve had quite a bit of snow and live on a beautiful river, so at least when I’m feeling fatigued I can sit back and enjoy the peace. I hope you have a cozy place to rest as you let your body heal.
I’m in UK...Nottingham...we’ve had flooding and my horses field is like a pond in places
Barb xc
in reply to MJ_Michigan38
Hi MJ,
You are right that your oncologist is callous. What a cruel, insensitive thing to say to you! We are similar in age. I was diagnosed last year at the age of 39, but likely had cancer for several years before I was diagnosed. So like you, it came as a shock to my medical team to be diagnosed at my age with no family history and in good health prior to all this. People who are not living with this disease do not understand how hard it is to be told what will kill us. So it's also very well people saying we don't know how long we have left to live or that an accident could claim our lives. I don't find that reassuring either!
My hope is that new treatments come along that will not only prolong our lives, but cure us of metastatic breast cancer.
Sophie
MJ_Michigan38 in reply to
Sophie, it’s shocking how many of us are diagnosed metastatic under the age of 40. I think it’s just that scans are better at detecting the cancer now. My only symptom was a small lump. They were so sure I was stage 2, but a PET/CT scan showed I have innumerable bone mets and seven tumors in my breasts, not just one. Like you, they believe I had the cancer for awhile, but they think it’s slow growing.
I, too, am hoping for a cure. These drugs that extend our lives by months are not enough. Like everyone, we want the opportunity to live a long life.
in reply to MJ_Michigan38
Yes, it is shocking! I think when we are young, we are sometimes overlooked. We are not having mammograms that older women are routinely offered and so it's not always caught early. I was also told it was likely to be early stage until I had a PET CT scan that confirmed the disease was metastatic.
Let's hope we can benefit from better drugs and that we can all live to old age. I can't help envying people who are in their 50s, 60s and beyond, because I want to grow old too.
Sophie
MJ_Michigan38 in reply to
I completely understand feeling envious of those who didn’t get the disease until they were older, as I often feel the same way. Then I meet those who’ve had MBC since they were in their 20s (and one girl diagnosed with it de novo at the age of 18!), and I wonder if they envy me for getting twenty more years than them. I just really really hate this disease and the lack of progress that has been made in research.
in reply to MJ_Michigan38
I hate this disease too! I sometimes stamp my foot like a sulky child and pretend that I am stamping the disease into the ground! I meant to say I have envied anyone older than me who doesn't have cancer. I feel an affinity with other women who have metastatic breast cancer, even if they are much older. It's those who are older without cancer I have trouble relating to. Many take their good health and longevity for granted. I want that too. I have never heard of teenagers diagnosed with metastatic breast cancer.
Sophie
MJ_Michigan38 in reply to
Sophie, Oh, yes yes! I completely understand and feel that way too towards people who take their good health for granted. Or when my friends who are beginning to turn 40 complain that they don’t want “to get old.” Growing old is such a privilege and should be cherished not dreaded!
in reply to MJ_Michigan38
I know what you mean, MJ. My dad is in his 70s and moans whenever he has to have so much as an injection! He's fighting fit and doing really well, but he takes his health for granted. I feel the same way about people complaining about growing older too. I want to tell them: "You don't want the alternative!" They don't understand that we want what they have, so even if they have aches and pains I would settle for that if it means living a long life.
Sophie
Barbteeth in reply to
Although I’m a lot older than you Sophie I feel the same about people older than me who moan about trivial health issues
I’ve started reading obituaries in the Times and so many people live to be very old and I envy them...however when I was working I used to visit old folks homes to make new dentures for them and I used to think god I hope I never end up in one of these places!!
Weird what goes through your mind
Barb xx
in reply to Barbteeth
I'm glad you can relate, Barb. I think that with our diagnosis it puts things into perspective more, don't you think? We face our mortality and think about what that means for ourselves and our families. We look at what others are complaining about, but we want what they have and that's longevity! If only we had a simple blood test to worry about. Instead, we have to have blood tests to check our bone profile, liver and kidney function, and our oncologists keep an eye on how we are responding to treatment. There is so much more involved than a simple blood test! The bottom line is that we want to grow old!
I'm taking my dad to the hospital on the 29th for a CT scan. The endocrinologist wants to investigate his adrenal gland further. The blood test he had in August did not seem to suggest he has cancer as the hormones that they would look for were not elevated. But they just want to be sure. It will be weird being in the CT department for someone else rather than myself. It's been a while since I have been on the other side!
Sophie x
Barb and Sophie, it’s certainly true that perspectives change once cancer hits. After I announced my diagnosis, several people asked what grand things I planned to do with my time left (as if I’d won the lottery instead of being diagnosed with a terminal disease), when really all I want is to grow old with my husband and not worry every day if my time is almost up. It may sound boring to them, but they really have no idea what beauty there is in the blissfully mundane.
in reply to MJ_Michigan38
Hi MJ,
I agree! I don't see how people can view this diagnosis in the same way as some kind of windfall. It's certainly not something we would have wished for in our lives. Like you, I want to grow old with my husband. We have been together for over 20 years and married for over 17. How about you?
When I was first diagnosed I noticed some elderly people in town as I was sat at the bus station, and I envied them their longevity! So I do find it hard when people talk about their minor health problems and we are facing a much more serious diagnosis. So I will settle for boring and "Pass me my slippers and cocoa" (or whatever elderly couples talk about!) at 7:00pm!
I ran into one of my former pet sitting clients in town this afternoon (he has cancer too) so he understands what this is all about. As we were comparing notes with how we were doing with treatment, I told him we need to set up our own club called "The survivors". That is what we all want, to be able to survive this disease. I am working hard at throwing the kitchen sink at this disease and hoping something sticks!
Sophie
MJ_Michigan38 in reply to
Sophie, that’s so fantastic that you and your husband have been together for 20 years! My husband and I just got married in August, a few months after my diagnosis, but we’ve been together for 8 years and we’ve known each other for 27 years (we went to school together and were in the same year). We dated very briefly in college, then went our separate ways for 10 years. We both lived and worked abroad and just happened to wind up back at home between stints, so we met for coffee one day, and that’s where our story really begins. What’s been extra heart breaking for us is that after three long years, he got his license in July to work as a deck mate on cargo ships, just two months after my diagnosis, so we now spend months apart from each other.
in reply to MJ_Michigan38
Congratulations on your marriage! Wow! I can't imagine what it must have been like going to school together and knowing each other since childhood. My husband is 13 years older than me, so that would not have happened in our case. He is American, and I am British. We met when he was in the USAF, stationed in the UK the second time.
It must be hard living more apart than together these days though. I can relate to that, as my husband and I would spend months apart during deployments, temporary duty and so on. In fact, the same month we were married he left for a few weeks. I was a newlywed, living in a foreign country and not yet able to drive over there, so it was a challenge! But I had some friends there, which helped, and I managed.
Is your husband hoping to stay in this job long term or maybe look into doing something else at some point s he can be closer to home? It must be hard for you attending appointments on your own and dealing with your disease without him there with you.
Barbteeth in reply to
Sophie I had a mammogram when I was 40....they were doing a trial in Nottingham on younger women...had it in the spring....all clear...found a lump myself in September and it was malignant...when I asked why the mammogram hadn’t picked it up I was told that breast tissue in young women is too dense so a waste of time for diagnostic purposes
Barb xx
in reply to Barbteeth
That's interesting, Barb. I would still have been too young though. I only had a mammogram after finding what I thought was a lump (it was a spot; the lump was found during the mammogram and confirmed after I had an ultrasound and biopsy). I was also told that it was hard to find the lump, as my breasts are dense.
Sophie ❤
Barb, you’re so right, and I have explained to people that have inquired that 1) I was “too young” to be getting mammograms, and 2) I had seven tumors in my breasts, only one could be felt, and NONE appeared on my diagnostic mammogram, not even the palpable one, because I have such dense breast tissue.
Your right, and very little has changed for people with MBC. The best most expensive medicines only work for a short time if at all. My Guardian 360 test shows mutations, with no know medicines that work against. I may not live two years.
Hi Barb,
I used to feel that way. I was diagnosed at 71 and thought I would not see 72. I now will be 75 in July and think maybe I will see 80 who knows. A women went through a stop sign and I hit her car last week on my way home from chemotherapy. No one was hurt just my front bumper and the side of her car. But afterwards I thought well I guess it is not my time yet. We really don't know so let's just enjoy every day we can HaHa 😂
In the mean time I go crazy clearing my house of clutter, and paint everything so my kids will not come in have to clean up after me. I try to think I will live till 80. So pay no attention to me.
I try to think positive not always so easy.
Barbara
1) Anyone who has ever taken a statistics class learns that survival statistics such as these can only give you average information that is generalizable to the population, but it cannot tell you ANYTHING about any one person.
2) The U.S. 5-year survival data are based on only patients diagnosed as stage 4 "de novo," and do not include patients who progress to stage four as a reccurance.
3) 5-year survival data is always five years out of date and 10-year survival data is always ten years out of date. Since current patients are taking Ibrance (and other new regimens), we absolutely cannot know how newer treatments impact survival five and ten years out----until five and ten years goes by.
4) A certain unfortunate subset of patients who are diagnosed as having stage four breast cancer are discovered to have VERY advanced involvement and they tend to die right away. We've all heard about people/acquaintances with the diagnosis--- and the next thing you know, you hear that they're dead, just a couple of months later. It happens. Statistically, this skews the distribution to clump toward the left. In other words, the good news is that if you don't die right away, you're more likely to last longer. This sounds somewhat silly or logically questionable, but it's a real thing.
5) Some folks find comfort in gathering data and looking at hard, cold facts. I am one of them. Death statistics help me enjoy each and every day and remind me to live in gratitude! I am a realist and my personality LIKES being super honest and having clear info. The U.S. SEER statistics are real, but you need to know how to interpret them AND you need to look at the subset data AND you need to know that today's patients are receiving different therapies. Don't pray for me or paint any rosy fake pictures for me, please. I actually think it's good for everyone to realize that there are no guarantees. Anyone could get hit by a bus, have a stroke or heart attack or die from a gruesome accident or disease at any time. Just enjoy the day. My best friend tells me she prays for me; she is so sweet and sincere in her faith, but I am not one to engage in magical thinking. Research actually shows that intercessionary prayer does not work at all. Not at all. Sorry, but that IS what the research shows. I told my friend that it is clear to me that god, in all her wisdom, clearly wants people to die from cancer---otherwise why would she have invented cancer? (I am a reconstructionist jew and I do not believe in any supernatural personality--but, I admit, it gives me a kick to refer to god as a "her.") My friend looked all shocked, but, gosh, everyone needs to die of something. We can't have every human beings live forever and clutter up the earth. So, what I'm saying is, it doesn't have to all be sad, sad, sad. Carpe diem and l'chiam and may the force be with you. There is a season for everything, a time to live and a time to die---and there is BEAUTY in the Biblical poetry and in the Beatles song. Feel it all. It's TOTALLY okay to be sad and mourn your own upcoming death, but we don't have to stay in the bummed out place. Look at the situation square in the face, I say, and concentrate on gratitude and being in the moment. That helps me. In the meantime, recycle, return your shopping cart to the corral in the parking lot, vote, be a good person, and carry on. Just sharing, in case this helps others.
I work in local government and it's not unknown for exactly the same set of statistics to prove 2 diametrically opposing arguments! I love statistics and I love how creative people who use them are 😊 No matter how good, they can never reflect the outcome for the individual and charities know that but they make good headlines!
in reply to Lynn-in-California
Gosh, your grasp and presentation of statistics is very helpful. Thank you for sharing. Much appreciated
I'm not keen on it either, Sandra, but I go along with it.
Sophie ❤
I’m sorry about your aunt, Barb. I hope she had a great life and that you will be able to remember her with great fondness and love. The funeral will be hard, but you are right, you shouldn’t miss it. Hugs, Elaine
I’m afraid the reality is that the median survival rate is 2 to 3 years. New drugs such as Ibrance are changing this for some patients who get an extra couple of years, but not for everyone. If we can’t speak the truth then we can’t fight to improve our outcomes.
I believe in America things are slowly improving thanks to more flexibility in treatments. Here in the UK things are not so good, we have rigid treatment lines and poor trial access.
Also, both here and in America the big breast cancer charities invest poorly in metastatic bc research. This must change. 30% of primary patients will get metastasis and funding for research into our disease needs to reflect this. Currently it falls way short.
I’ve joined METUPUK where we demand improvements in all of the areas I’ve discussed. If we speak out and campaign then things will improve and we can turn this killer into a chronic disease, but this won’t happen unless we fight for it. Just like the aids epidemic in the 80s.
There is also the American METUP who are doing great work.
Also, just to add. Research discussed at the recent ABC5 conference has shown those diagnosed de novo actually do better than those diagnosed later.
Hmmm...not what I want to hear
Barb xx
It’s a tough pill to swallow isn’t it. I wish our outcomes would improve. More people are living longer as more people are being diagnosed. I know with bone mets only ladies can potentially survive decades.
Unfortunately it’s in my liver. We must demand change. We’ve been left at the bottom of the pile for far too long. Here in the UK it’s still killing 11,500 women a year. This stat hasn’t budged in decades.
Things can get better but only if we make the powers that be listen to us and take action.
Barbara,
I think that all of us with MBC are changing up all the numbers for survivors data. We are living longer, staying on medications longer and they don't seem to update data quick enough to account for that. I read, in a cancer journal, about a woman who had survived 27 years with MBC. That was at least 2 years ago. I know that's not normal but I keep that number in the back of my head just to remember it can be done!
I’ll also say, I still think we should have hope. There are an army of strong women fighting our cause. I have faith we will get see the changes we desperately need.
With better drug and trial access we can all live longer, but it’s not going to happen unless we fight for it. If you’re wealthy (I’m not) the treatments available are boundless.
We should all have the same opportunity at life.
What are these boundless treatments available for wealthy people?
I’m unaware of this
Barb xx
There are drugs we can’t access. Even drugs like Ibrance if you’ve already had one treatment line then you’re not entitled to give it go unless you can pay privately.
Also treatments such as SIRT, Chemo saturation, cyber knife, gamma knife etc are not readily available.
Even things like having our tumours profiling costs money unless you’re lucky enough to get onto a trial.
Ah ok thanks for that
I’m fortunate then to have private insurance
It’s not fair on those ladies who don’t though....something must be done
Barb xx
I wish I’d had private insurance.
I’ve made sure my family all have it now. You never know when you might need it.
I’ve learned the hard way we can’t rely on the NHS here in the UK. Although they do a wonderful job, they have to follow the tough NICE guidelines. Xx
Well my hubby was offered private health insurance when he worked for a company about 30 years ago and when he left that job we just continued to pay it...I used it 25 yrs ago at initial diagnosis when I had a mastectomy and it’s been a godsend if only for somewhere with nice surroundings and a car park!!!... my consultant years ago said that private treatment was no better than nhs except the food better if you stay in...I think times have changed since then
Barb xx
I agree that stable is good, Sandra. Your tumour has shrunk a lot. You must be so happy with that!I wanted to see the images of my latest CT scan, but I forgot to ask. But my oncologist did send me a copy of my radiology report and some other things I had asked for, so I'm happy about that. I do think there is something going on with my tumour. It has been continuing to shrink with each post-diagnosis scan (six in the last 18 months). But with this last CT scan it's the first time I've been told it was hard to see on my scans and even harder to measure in the consultation room. So I think my oncologist is keeping her cards close to her chest. But I think I am getting close to NED. I don't want to get my hopes up, but that's what may be going on.
Sophie
Top tip for you ladies. If anyone is currently looking for trials or treatments I strongly suggest you sign up for mytomorrows.com.
It’s a brilliant free service. Through accessing trials we can hopefully keep dodging bullets for longer
But, we're not average! We are doing everything we can to if not defeat our cancer, at least push it back again and again. As I recall those statistics are dated and everyday new treatments are being tested, some of them like Ibrance giving longer lives to many of us. Stay hopeful and positive. You are not a statistic.
I know I have no choice but it took ages to get over it last time...and another one might appear in that time
I know my oncologist wants to keep me on Ibrance letrazole combo and I understand that but if it’s not working on liver mets what’s the point!!
Barb xx
What a very insensitive thing to say especially in the opening paragraph. Although we know the statistics are outdated, it still hurts. I’m so sorry Barb that it ruined your day.
Yes we just don’t need that...it’s really bothered me and I’m very down in the dumps...on top of which I learned yesterday that I have a new liver met and will have to have SABR again so after reading that email I’m wondering is it worth it as I’m 18 months down the line and if it’s going to give me only a bit longer and quality of life rubbish etc etc...you know where I’m coming from?... it doesn’t encourage me to carry on with treatment although I probably will just to keep family happy....it’s not them who are suffering though it’s me
Sorry for rant
Barb xx
Rant all you want. You deserve it. I am finding it very interesting the difference in our medical systems. In the US, it seems more people have private plans although there are still many who do not. It makes me think deeply about candidates for the presidency that want everyone on the same plan much like Britain and Canada. I would love to hear more, good and bad. I have been extremely fortunate with my insurer's coverage throughout all of my cancers.
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