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Newly diagnosed

Hello, lovely ladies.

I am newly diagnosed stage 4 after, after 4 years of remission.

I had a very good prognosis, needless to say my team and myself were shocked.

I have it in my lymph nodes in the left(where my cancer was) and in the chest lymph nodes on the right.

Wondering how everyone dealt with such a blow at the beginning.

I’m actually planning my funeral!

Lots of love,

Paulina

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Hello Paulina,

Welcome to this site, but sorry to hear you are having to reach out like this. Please reach out and ask questions, join in or just read posts on here. It will help to encourage you. My disease was metastatic from day one (although I didn't learn that until two months after my diagnosis).

Take care,

Sophie x

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Thank so much for replying to my post.

When I was diagnosed I really felt like I was the only one with stage 4, I begged my nurses to please tell me I’m not the only one.

Hopefully we have many years to come!

XX

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You're welcome! I know what you mean about how isolating the disease is. I remember thinking about all the women I have ever known who have had breast cancer (there have been a lot!) and all of them are still here to tell the tale. Not one of them was as young as me or had metastatic cancer. So whenever someone would say "So-and-so has had breast cancer" I have had to bite my tongue, because they may have had cancer but they are not the same as me. 1) They were all much older 2) They have all recovered from early stage breast cancer and 3) They don't know what I am going through. I will have to live with this disease for the rest of my life, whereas they have all been able to pick up their lives where they left off after they had finished treatment.

Sophie x

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Exzactly, how I feel. Most people I have heard of it never came back. It’s also very Radom who it comes back to? Grade 1 grade 2 no lymph nodes small cancer. It really doesn’t make sense.

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Morning Paulina,

Yes, you're right. It is also indiscriminate when it comes to age. I only knew of women in their 50s and older who have had breast cancer. Even my medical team were surprised that I developed breast cancer at my age and with no family history.

I try to be positive about it all though and look ahead with confidence rather than regret the past.

Take care,

Sophie ❤

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So true. I think we’ll I’m here right now so I’m living!

Me too about the age thing! I have no family history and was 42.

I wasn’t even thinking about checking my breasts.

It slightly annoys me about the catching it early thing and you will survive. I caught it very early!!!

Stage 1 gr 2 and it still came back.

But, you are right look to the future.xx

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You have the right attitude, Paulina!

The thing is, I was checking my breasts. I had my first breast exam and chest x-ray at the age of 23 when I was going through my immigration medical as I was getting ready to move to America the first time (I lived over there on two occasions). I remember the doctor at the US embassy in London saying that I had lumpy breasts, but I got the all-clear for cancer. I also had a breast exam more recently (I can't remember when exactly, but it's been since 2012) when I attended one of my cervical screening appointments and again, I was fine. But it wasn't until I found a lump (that turned out to not be a lump!) that I had my first mammogram, ultrasound and biopsy and the rest they say is history. So even if you check your breasts diligently and are examined, this can still happen. I was told I have dense breasts, which made it hard to find the lump.

Sophie x

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I can’t believe that-shocking.

There needs to be more research into a total cure not just early detection.

Surely someone in the medical field knows this already.

But, it has opened my eyes and I live much differently now. Of course I’d rather not have it.

Every time the kids have a school holiday we are outta here!!

My husband and I went to New York and Tokyo on our own(which we would never have done before) would have been to afraid to leave the kids.

This was during my first diagnosis. Now that I’m stage 4, we will live 20 years within the years I have left!!

There is a date in the diary for everyone, so you gotta live!!!!

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Hi Paulina,

I believe there is a cure out there too. I know that when it comes to metastatic disease that it is harder to reach that point, but it is not impossible. There are so many people who have reached radical remission. I read "Radical Remission" and it gave me hope, as well as some of Kris Carr's books (she's been living with a rare form of metastatic lung cancer since 2003), not to mention Jane McLelland and others who have either been cured or their disease has been kept under control and has remained stable for decades. I will accept one of two things: the long term management of this disease or a cure.

Good for you for going to New York and Japan. I have been on a few trips lately too, but am content to just stay put for the time being!

Take care,

Sophie x

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Love kriss carr! Amazing lady. Just got radical remission, will start reading to night.

I’m like you, I’m not taking this lying down!!

Thanks for the recommendations. Going to google Jane now.x

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I am reading Jane's "How to Starve Cancer" book. I would recommend it! I am taking loads of notes, so it might take a while to finish the book. She also has a Facebook group that I am a member of. It's really interesting!

I think that attitude has a huge role to play. Patients who are passive, only do what their doctors say and don't look into how they can help themselves are more likely to suffer. Much more is needed. My mum was a passive patient and it was hard to get her to think positively. x

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Jane-wow! Just went on amazon and bought her book! Thank you

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You're welcome!

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your post made me remember that I had felt the lump in my right breast in 1990 and had a mammogram that said it was just a thick mass, and not to worry. I too have lumpy breasts. The reason I remember so clearly is because I had received a report in the mail stating there was a suspicious area and if I remember correctly, I was told to call the hospital for further info. THAT'S when the doctor said he didn't think it was anything to be concerned about. FF to 2013 and that thing started aching and causing fever and I went straight to the hospital and had another mammogram and wellah, it was the SAME SPOT I had felt 13 years earlier and I told them so! This time they did the right thing and took a biopsy, and diagnosed breast cancer ER pos HER - Just wanted to share my experience and tell other ladies that if you feel a hard lump, even if the doctor says don't worry, get that thing biopsied, or a 2nd opinion at least. I was naive.

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I'm sorry to hear that. Hindsight is a wonderful thing, isn't it? It is not your fault that things worked out the way they did. Thankfully, you received a diagnosis and are now undergoing treatment. That's how I try to look at things. If I had not gone to the doctor's at the beginning of last year when I had my suspicions about a lump I doubt whether I would have gone and then where would I be? The GP who caught it called me as she was getting ready to move away to see how I was getting along. I thanked her for saving my life.

I'm not saying I think I had breast cancer when I was 23; that's just how old I was the first time I had a breast exam. My breasts have always been lumpy since they developed, but there were no hard lumps in my teens or 20s, until this disease started (whenever that was).

Sophie x

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i vacillate between fighting this with all that is in me and letting go and letting God. Only God knows what I will end up doing coz I don't, and that's okay! <grin> God bless and heal us all, amen! <3 xo

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Yes, I know what you mean. It makes me think of one of my favourite scriptures from Philippians 4:6, "Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God." Worrying about the future will not help. I find that I often end up worrying about things that do not happen and then I have wasted time worrying about it! There is much to be thankful for. We must have hope! x

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Thank you! I remember some scripture but my struggle is in remembering WHERE it is found when I want to SHARE with someone. Of course, I love John 3:16, so was delighted to hear John 16:33, first because I love what Jesus says here and secondly, I can remember chapter and verse! Jesus says, "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world". Had to share, I could live on just reading John, so beautiful, the love story of God for US! <3

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That's easily done! I think we all have a "brain fog" every once in a while. I love the book of John too!

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The lack of sleep from the letrozole hasn't helped; I'll be sleepy watching tv but just as soon as I TRY to sleep ... BAM! wide awake! last night I took 2 Tylenol PM and slept like a baby, only waking up twice! Thank you, Jesus!

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I used to have trouble sleeping before my diagnosis, which was probably my body's way of telling me something was wrong. I'm sure it didn't do my body any good, so I make more of an effort to get sufficient rest now. I'm glad you slept better last night. Have you considered taking melatonin? I'm thinking of adding it for its anti-cancer properties.

Sophie ❤

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melatonin used to work for me but I think all the pain medicine with the broken leg messed me up. I will try it again as I don't want to take the tylenol PM every night. our body does tell us things because I was telling my ortho that before I even knew there was a tumor on my femur, my brain would not let me use that leg to push up from the floor, I would use my left leg. I found that absolutely amazing body/brain talk! I love science too! thanks for taking the time to talk, I feel like right now I'm in a me me me mode, argggggggggh ... I've become a meme! lol God bless and heal us all in Jesus name, amen!

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I know what you mean! I don't want to be relying on unnecessary drugs either if I can help it. That's why I'm looking into adding more supplements and taking care of my body. Our bodies are amazing! I have learned to listen to mine more and to try to take things easy, reduce stress, and eat better (although I cheated today and bought two homemade cakes from some children who were doing a bake sale!) As to being in "me mode" a friend gave me some good advice about that recently. She said taking the time for myself is not selfish. It's self-preservation. We need to be invested in our health and well-being.

Sophie ❤

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We have to cheat sometimes, and you helped the children! I actually liked the relief from the pain pills and am not against pain meds at all when you are hurting; the problem started when the pills worked less and less effectively and I was wanting to take one after 3 hours when it said every six hours, so I could see where it was heading. i've taken them sporadically for a very long time as I've had 3 knee surgeries on that leg, none with a broken bone though, all twisted cartilage, etc., and I have never built up a resistance to them, so that's why I think it was the heavy pain meds I got in the hospital. towards my sixth day before surgery, the nurse came to give me a shot and I said, no thank you, my leg isn't hurting. Turns out that once they stabilized the break and had my leg elevated, it didn't hurt anymore. She tried to encourage me to take the morphine shot! over and over again and I kept saying "why, I'm not in pain"? She would not answer me. They gave me so much morphine and fentanyl in the hospital when I broke my femur, I think that had a big effect on how well the hydrocodone/acetamenophin was working for my pain. When I arrived at the ER with a broken leg, I had no problem when they suggested morphine, but was happy they could help me. The pain was excruciating. i'm just a blabbermouth today! God bless and heal us all in Jesus name, amen!

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You're right! I shouldn't feel guilty for eating a couple of pieces of cake. It's not like I do it all the time.

I feel the same about medications. If I'm not in pain I don't want to be taking anything. You did what you thought was best for you. No one should try to push you if you feel comfortable.

Sophie ❤

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I live for hope and hope to live! had to say it ... my hope is in Christ!

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Yes, I feel the same way. ❤

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Hi there

Mine came back after 24 years..terrible shock..I know how you feel..it’s been almost a year since the mbc diagnosis..the whole year was hideous and a bit of a blur

I’m sort of getting better in myself and taking an antidepressant which has helped enormously

I’m scared still but I’m responding to the treatment so far and just hope it keeps me going for a long time

As Sophie just said..keep posting/reading posts etc..this group of marvellous ladies are very positive and will lift you up when you feel down..has helped me lots

All the best

Barb xx

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Gosh that must have been such I shock for you. I’m so sorry.

It’s so nice to hear from lots of ladies who are going through this too.

Thank you.xx

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Hello 🌺 This group is wonderful. We all share our experiences and concerns In my case I had breast cancer with radical mastectomy, I discovered it in my first Mammography. (I was lucky) it had not spread. There is no history of cancer in my family This was in 2010. In September 2018 I felt a strong pain in the inner part of the leg. I went to the Doctor and it turned out to be Metastasis in my hip. I spent 8 years thinking that I really had overcome it.

But here we are and we will continue fighting 🌺💕🌸

Strength that if you can 🎀🎀

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It’s awful when you think you have beaten it and it comes back.

Let’s hope the medicine keeps us going for many years to come!

Thank you for writing To me.xx

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I was diagnosed 15 years after the first diagnosis of breast cancer. They even told me all my lymph nodes were clear so after lumpectomy, radiation and 5 years of taking medication I really thought I was home free. Then I got to where I was having trouble breathing. I blamed it on a cold. Breathing got worse one day and I went to the ER and found out a tumor had wrapped around my diaphragm nerve and my left lung was paralyzed. Then the metastatic diagnosis of spine and rib involvement. The oncologist said they had just learned from trials that 5 years was not long enough to take the medication that it should be taken 10 years after the first diagnosis. So that was January 2016 and here I am March 2019 and the Ibrance and Letrozole have kept the cancer unchanged. I’m thankful to God every day for each day he gives me. In some ways I appreciate everything more. Love my husband who is so good to me. Been married 48 years. 2 wonderful daughters and 4 grandchildren that I plan on seeing graduate from high school. The first one this Spring. I’ve got to make it 6 more years and I’m determined!!!

Writing too much tonight. You all inspire me and I’m so glad I found this site. Reading everyone’s post helps me. Thank you all. ❤️

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It’s terrible when you think

You have beaten it and it comes back.

Sounds like you will make it 6 years no problem!! Xx

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I was diagnosed almost exactly 5 years after being told I was "cured" from breast cancer and a double mastectomy. What I thought was progressive lymphedema pain was breast cancer recurrence in my chest wall - exactly where my original tumor was located. Shocked and furious! But, after research, I discovered that it's rare to NOT have a reccurance within 5 years! I did the same thing you did, I told my husband my "unfuneral" plans and wrote a codicil to my Will. I also did research and found out all the latest on treatments for my type of cancer. There are new drugs every day, plus God's natural ways of treating cancer. The news of a possible cancer cure is all over the news, so hold on. I'll be honest, the side effects of treatment can be rough, but allot depends on how each person's system handles the meds. I'm only on my 3rd treatment med and will take a new scan in a few weeks to see if the meds have helped. I am also using Frankincense oil and CBD oil. I intend to live another 20 years! You need to have a positive additude and make sure you have an Oncologist who keeps updated constantly on the newest meds! Prayers that you have complete healing - yes, that is possible!

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Thanks for your reply.

Fantastic you are at five years, I’m sure you will have many more!

I have started with cbd oil but I’m so confused if it’s the stuff with or without the thc in it?

I’m using the 10% just cbd.

Have a great oncologist who is right on top of the latest breakthroughs-which is great!

You are so positive and it’s fantastic!! I’m sure I’ll get there.

Thank you for your kind words.xx

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I use both cbd and thc oils. We have to keep positive, it helps with the healing! Stay strong.

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I’m so confused by the thc and cbd oils. I live in the uk so can only use the CBD oils. But, im going to Canada next week and the thc/cbd is legal there so will give it ago.

Do you know which one is said to shrink cancer? My breast cancer nurse says there is going to be big things coming out very soon but couldn’t go into details. Maybe because thc is illegal in the uk?

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Hi Paulina,

I too am recently diagnosed with stage 4 metastatic BC and like you was deeply shocked at first. Rather than my funeral, I was planning my suicide! Waking up each morning, my first thought was 'I'm dying!'. However, two months on I am in a completely different place. I am on meds (Letrozole, Ibrance and Denosumab injections) which are definitely working for now, some cutaneous lumps are melting away and the onc says similar will be happening inside to bones, hazy mesentery and the couple of small spots on my liver.

My breakthrough came when I went to a meditation class. Now I do an on-line guided meditation on Youtube every day and am SO much more relaxed. I saw this piece of marvellous advice somewhere 'Live each day as if you are going to live' and so that is what I am doing to the best of my ability. I am making sure each day is very busy and doing my best to show love to as many people as I can along the way. We ladies are tough cookies at the end of the day. Best of luck to you, lovely girl.

Best wishes xxx

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Which online site do you use for meditation?

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Hi louisaMay,

Thanks so much for your message.

It sounds like I’m on the same medication as up.

Ibrance, Letrozole and the injection to stop my ovaries from working.

So nice to here you are in a better place than 2 months ago. Thank makes me feel so much better. I’m a month so far.

I use an app called calm for meditation and all sorts of wonderful things. If you sign up for a 7 day free subscription it seems they send you a 40% off code.

I’ve also reread my Kriss Carr books(love that woman) which has really helped.

I keep telling myself that no one has any certainties in life with or without cancer we are all terminal.

Lots of love,

Paulina xx

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Hi Mimigram, just Youtube, this particular one I find good for every day use:

as it's only 15 minutes long and if I have more time I try some of the longer ones. I often fall asleep which is no bad thing of course but I prefer it if I can stay awake to enjoy the deep relaxation. Hope it helps you too.

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I’m in that place now, so want to live a long life but so scared that I think what’s the point. Wake up everyday as if I’ve been punched in the stomach. I’m glad to hear this might pass x

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I felt the same way? I wake up everyday thinking has this really happened or was it just a bad dream.

I recently got on an antidepressant and it really helps. Just helps you to function. I have an 8 year old and haven’t been to the school gates since I was diagnosed because I couldn’t be bothered with the small talk. I’m now almost ready(a month after diagnosis) to start going again.

The thing is, there is a date on the calendar for everyone, with or without cancer. when I keep telling myself that.

Do you have children?

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Yes 8 and 5. I’ve just started going to pick them up. I was in bed for 3 months. I’ve lost my confidence. In fact I seem to have lost myself completely. Been on antidepressants for nearly 3 weeks. I just can’t get my head around the uncertainty. We’ve been invited to a family party and I really don’t think I can go. I can’t remember how to small talk! X

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I totally know how you fell. I was godmother to my best friends a week after I was diagnosed. I really didn’t want to go, but I have to say that it was a fantastic day. For a good full day I didn’t have cancer! I drank champagne, made lots of small talked and just lived.

Everyone underestimated their own mortality. No one knows when that will be.

I try to live in the moment now. I try and really be present for my kids(which I wasn’t all the time) instead of getting annoyed by the noise they would make, I now enjoy it.

Do you mind me asking are you er+ or her+?

Oh and I haven’t told anyone except my 2 best friends.

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Er+ I’m finding it very hard to engage with my kids after being out of it for so long. We’ve told family and a few friends my husband needs the support. X

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That’s very good you are er+! Lots of medicines out there.

I’m not saying it’s easy by any stretch of the imagination, but I have come to a train of thought that if something was to happen to me( which it will to all of us at some point ) that I don’t want my kids to remember me lying in bed all the time being upset and not engaging with them.

I totally get you though, I felt the same way.

You will have many more years left to love them.

It’s bloody scary-I know. Try to and remind yourself that no one has any certainties in their life. Not anyone.

Having cancer has just really let us really know that we are not immortal.

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Thank you for that. I’m really struggling today. I missed a Letrozole the day before yesterday and since I have been having terrible hot flushes. I’m really fed up with side effects. Hopefully my body will settle in to the drugs at some point. I’m back on the Ibrance tonight. So many pills. Are you ER+? Where are your mets? X

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Are you on escatalipram? Apparently that type of anti depressant helps with hot flushes, I don’t get any? Which is odd but I am 45, so I guess I would probably start menopause soon anyway. Yes, I’m er+. The first time around I was her2+ and the targeted therapy killed it. I’m hoping this er+ targeted therapy does there job too.

My mets are in the lymph nodes in the left and in the chest lymph nodes.

Have you heard of Kris’s Carr? I love her book crazy sexy cancer survivor. It’s a real pick me up! Not the cancer tips one as much.

There is a app called calm, which I’m loving right now.

One lady said it takes about 6 months to digest the diagnosis, so don’t feel rushed.

My wbc wete too low to get my Ibrance for a week and I almost had a heart attack!! I think it’s look at a cronic disease which lots of people live will and none of us can stall when they walk down the street.

When I went to get my bloods done last week, the cancer appointment Centre was like a nightclub!!

From people 15-90.

We are not alone, although it often feels lonely.

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Don’t know where you live, but I’m in London uk.

If you ever wake up in the middle of the night(as we are probably on different time zones) feel free to email me.xx

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I’m in Dorset. Thank you. How long have you been on Ibrance? X

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BTW it’s really good to connect with you. I’m 42. The whole kids thing is a whole other story. Glad to have met someone in the same boat X

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So totally the same time zone.

It’s good to know there are people out dealing with the same thing.

I’ve just started My second cycle of Ibrance. Fingers crossed the wbc are okthis time.

Be careful the week you are off to stay away from crowds.

I had no idea and was on the tube, went to a concert and loads of restaurants!

Best to lay low that week.

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I’m just about to start my 3rd cycle. Last time I was in bed for 2 weeks but I’m worse than you. Bones, lungs and liver X

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Sorry, just had to cook dinner(which I couldn’t do for at least a month)

My mother’s friend lived for 15 years with it in her bones, lover and lungs.

Anytime you feel down, I’m here.

My friends made me go out and get my hair washed at a salon yesterday, as I hadn’t washed it fro over a week! Could not be arsed. I know what it feels like to want to stay in bed.

One thing, when I was first diagnosed I had read from some stage 4 ladies that their biggest regret is that they didn’t live in the years before it came back. I made a decision to live as much as possible after my first diagnosis and not have I lived!! I’ve been out of the country for at least 4 months the last for years on holidays.

You don’t want to regret not living if something happens. My husband and I go to the gym once a week together for a sauna, I take each of my children to different things, swimming lessons, football....

Just try and live in the present moment.

There are no guarantees of tomorrow for anyone.

I went to paper chase and bought the black scrapbooks and have started to put photos and little messages about the photos and why they are special to me. Lots of just me and each son. Making them lovely with stickers etc.

You will have years with them still, try to enjoy them.

Believe me I know it’s bloody hard.

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How long did you have before it came back? I was 2yrs. I was quite stressed which I think may have prompted the reoccurrence. I haven’t cooked since November. I had both my femurs pinned in January so I’m only just beginning to walk. I did some laundry for the first time yesterday. Such a strange concept that I am getting better although it’s not going to last. I was so ill at the beginning I was on an oncology ward for 2 weeks X

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Mine was almost 4 years. I really don’t think stress, the food you eat, alcohol or anything can make it come back. So don’t blame yourself. It just takes 1 tiny cell to dodge the chemo.

As my oncologist says it’s just bad bloody luck.

I wasn’t stressed, I was having a great time traveling the world and it came back.

I’m the same, could not be arsed with laundry, cleaning etc.

Any mundane crap was not on my list and still isn’t.

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Did she have it in all those places from the start? 15yrs is good inspiration. X

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It’s interesting. She was one of my mums good friends. I was in my early twenties so heard she had breast cancer, but didn’t really give it a second thought. I was in my own world.

Then when I was moving to England 20 years ago(I’m Canadian) my Mum told me she had lung cancer. I thought shit that’s bad luck, having another cancer. Then my father died 7 years, she told me her friend had bone cancer now. Of course when I was diagnosed it all came together. I don’t know about the liver, but 100% in liver and bone. She also travelled everywhere, Australia, South Africa. You would never have know she had metastatic breast cancer.

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Sorry to hear about your father. She sounds inspiring. I think my problem is being so weak from being stuck in bed then the operations. I have already been extremely ill with this. I am feeling better now but still weak. I also get really cold as I’m quite thin. I’m actually really miserable I really need to turn a corner! X

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Don’t rush yourself. I’m sure my mums friend was terrified when she was diagnosed. I didn’t see that side of things. I know they told her she had a couple of years at best! Have you heard of the calm app? I really love it. You put some headphones on line down and they guide you through any kind of meditation. The anxiety one is really good. I stayed in bed for a month and I’m still being forced out, by my friends. I took my son to football this morning and will go to the pub tonight with friends. I’d rather just curl up in bed but I’m still here breathing, so forcing myself to get out there. I still hate to be alone. My husband works from home 4 days a week then my housekeeper comes the other day. I’m still afraid to be alone in my thoughts. We both have to remember that we are still here.

Not one person walking the earth is guaranteed tomorrow is coming.

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Yes terrified is a good word to describe me today! X

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We all are I’m sure, just at different points. It comes in waves for me.x

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Thank you for chatting. I’m going out for a walk now so hopefully that will help! X

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Have a nice walk. And have a look around at people. Most people have some kind of shit in their lives.x

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I can identify with that..I was diagnosed before my retirement date so stopped work 3 months earlier

My staff had organised a big celebration at the races..lots of old friends were coming

I couldn’t face it..though they all wanted it to go ahead but I cancelled the whole event because to me there was nothing to celebrate as I thought I would be dead soon

I’m just starting to mix with people a bit more but my confidence has gone and I can’t be the old carefree me anymore and it’s so sad

Barb xx

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I wonder how we can pull through this? I’m worried with the summer coming how I’m going to cope with all the kids events and things. It’s my daughters birthday in 2 weeks. She wants a party with all her class. Which is a lot of parents. How will I cope? X

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It’s tricky

When I was initially diagnosed my girls were 6 and 2...I remember dragging myself to a Christmas concert by myself ...about 4 weeks after my mastectomy ...I just snuck in at the back and didn’t talk much to anyone..they’ll not know anything unless you tell them...remember they’re only interested in themselves and their kids!!..sounds harsh but it’s true..if anyone says you don’t look well just say you’ve had a tummy bug or getting over a cold...any old illness will do...they won’t care

Look after you and don’t worry about what people think or say

You’ll get through it.

Barb xx

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DON’T plan your funeral instead Read “Radical Remission”! I’m just about a year into the “new normal.” I have sad days plus some bad days but there are many reasons to be hopeful.

Meditation helps keep me on an even keel. I have learned to do self Reiki and am now exploring BodyTalk. I’m also doing conventional Western medicine with an excellent oncologist. I get a second opinion when changes occur.

Sending thoughts for strength and healing.

Becky

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You are so right! I need to be planning my remission and thinking of living not dying.

My friend suggested reiki to me, so will definitely look into that.

Thanks for taking time to write me. It really means so much that all you ladies have taken time out to write to me.

Xx

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Just got radical remission yesterday! Looking forward to starting it today!

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I hope you find it helpful. I think it is based on solid research and the core principles make sense. Some of the healing techniques are a little out there! I also recommend Kris Carr's books, especially the diet one. I'm doing meditation and visualization using Bellaruth Naparstek's CDs. I have Fight Cancer, Depression, and Relaxation and Wellness. You can get them on Amazon.

Becky

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Thanks Becky!!x

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Hi Becky, Where are you in Maine? I'm stage 4 MBC to lungs and

chest lymph , just diagnosed Stage IV in January 18th, 2019. I go to

the Cancer Center in Brewer, Maine. Live in Bangor. Work for myself,

live alone, daughter grown living in NYC. Hard she's so far away.

Mary.

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I’m in Freeport. I too live alone. My MBC diagnosis was in May 2018. My daughter is nearby but is having her own issues with infertility.

I have bone mets and just learned I may have them in my abdomen. My subtype of bc tends to go there.

Would you like to chat or email? If so, my email is writeme62@gmail.com.

Sending you strength and healing.

Becky

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Hi Paulina,

It was such a shock to me too! I think most on here will agree.

I almost made it to five years clear. Thought I was all set and finished with this damn cancer. They say the 5 year mark is cool! What a lie! And here we are.

I find this site to be filled with wonderful warriors who understand our trauma and are encouraging and supportive. No need to plan your funeral. With all the new treatments we will be around for a long time! Try to stay positive and post when you need to. It really helps get over the shock- though I'm still working on that. This dx has blown my mind but I'm doing my best everyday to cope and not dwell on it. It's hard but we don't have a choice.

Have faith in you onc and be good to yourself.

Love ,

Marianne

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Marianne, what a great post.

I’m so overwhelmed with the response from all you lovely ladies!

Thanks for your he great advice. I’m going to try to put it out of my mind and live as much as possible without thinking about it. Hard I know, but I guess what choice do we have?

Thank you so much for your words of encouragement!xx

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You are welcome! We all need each other!

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Hi Marianne,

What a lovely response! I agree with you.

Take care,

Sophie x

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Thank you Sophie and you take care too!

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Paulina I’m so sorry for your diagnosis!! I was stage 4 right off the bat and it was absolutely terrifying but now I’m 3 years in and still on my first line of treatment and doing great. No one even knows besides my husband and my wonderful doctor of course. I just knew I needed to deal with it myself before dealing with everyone else’s reaction. I’m so glad I made that decision back then!

Take it one day at a time, try to take care of yourself, eat healthy and rest when you need to.

We are all here for you! ❤️

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You are just like me.

I haven’t really told anyone except my two best fiends and my husband.

I feel the same as you.

I’m not ready to tell anyone and besides who knows how long we will be on this earth for!

Fantastic you are on your first line of treatment!!

I hope it stays that way for may yesrs to come.

xx

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If you can watch crazy sexy cancer or google Kris Carr for some encouragement. I also like the website Chris beat cancer, lots of people beating the odds there.

When I first was diagnosed I said to my doctor, I only have a 22% chance of living 5 years and he said no, you definitely have more than that!! And so do you!!

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Love kriss carr!! Haven’t watched her documentary, but have read the books. Thanks for the recommendation!!xx

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Welcome to the club :-) Its a horrible shock and I think most of us have been through or are still going through what you are. This is a great place for sharing and getting inspiration. You aren't alone there are many of us going through this with you.

I have also planned my funeral and sorted my will, it got it out of my head. It's now in a drawer and I don't need to think about it anymore. The one thing you will realise when you read some of the posts on this site is how many treatment options there are for us now and you still have a future just like all of us on the site.

I was diagnosed with breast cancer in April 2016 and then metastatic breast cancer in march 2018. I've had a year on ibrance, faslodex and danusumab and apart from a little tiredness I feel fitter and healthier than I ever have, though I appreciate that not everyone does. The shock will wear off and then you realise that you still have a lot of living to do :-)

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Thanks so much for your encouraging words. Really means a lot.xx

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Our reports can’t always be good but we can keep on fighting for the next report to be good. You hang in there. There are many treatments out there and one will work for you. I believe in prayer and will certainly keep you in mine. Lease don’t give up.

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Thank you.xx

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Welcome Paulina. I'm so sorry you have to be here in the club none of us want to join. I was diagnosed Stage 4 right out of the gate last May. To say it was a shock goes without saying and I felt numb and felt like I was living in a bad dream that I hoped I would eventually wake up from for many months. I started Ibrance, Letrozole and q 3 monthly Zometa infusions to strengthen my bones. I have extensive bone mets. This group is fantastic and honestly most of us think we are the only one when we are first diagnosed but this group shows us that we are not alone and can all fight this beast together. I'm actually reading Kris Carr's books right now and enjoying them more than I thought I would. I am due again for repeat scans on April 1st and hoping to get good results. I feel so much better and hoping my scans reflect that. We got this girl! Take care.

Sandra

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Thank you Sandra. It does feel like a horrible dream.

So happy to have found this group. You feel

So alone when you are first told.

Good luck with your scans.

I’ll be praying for you.xx

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Hi ! Wishing you the best with your upcoming scan. I have that book! I found joy in reading it-all things considered with the crazy diagnosis!

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Thank you so much. I am determined to stay more calm about the whole thing this time around....easy to say but I know I won't get my results until the 11th so I am hoping to stay the course. It is what it is so no point in increasing my stress level for something that is already a reality and I trust my oncologist.

Yes I am finishing the Kris Carr short companion book now and except for the diet portions (which basically seems I would have to give up everything and I have no intentions of doing that) is very informative and inspirational. I think I was supposed to read the 2nd book I have first but oh well. Take care and I've been enjoying our beautiful weather the last few days so to me you are new so welcome. I look forward to getting to know more about you.

Sandra

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Hi. I read all the replies from our sisters. Be strong. I had a lumpectomy 10 years ago and last year had stomach issues.

I had Three gastroenterologists, three endoscopies, two colonoscopies, and anal surgery and I was told it was not cancer. Finally I found a competent gastroenterologist who found my MBC.

The diagnosis took so long that my opening between my stomach and intestines closed down and I was hospitalized to resection my stomach and intestines. I was in the hospital three weeks.

I lost a year of treatment.

I am 68 and have all the feelings that my sisters share. We all have a different story. Some of the treatments were not available a few years ago.

This is a wonderful forum to share feelings and encourage each other.

Keep reading. I am at an Enterprising Woman Magazine seminar in Florida. I am receiving an award. I want to share my MBC struggles with as many women as possible, so we can inform our sisters of this heinous disease and the progress the medical teams have available.

Thanks again for being here for me. I learn so much. Reenie. Rochester NY

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It’s such rubbish when they say after 5 years you are cured.

They really need to spend money on curing stage 4! So many ladies go on to get it at some point.

Well done for you award.x

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Hi All Beautiful people, I have been reading these posts for sometime now. My mother has diagonised with BC in late 2017, gone through 3 cycles of Chemo, then surgery, post that 3 more cycles of chemo followed by 15 radiations. Post that things were lot better from July 2018. Routine checkups did not point towards any further migration and this was confirmed in the PET scan report in May 2018 that no other organ is impacted. Out of a blue she started having some stomach pain in Feb this year and the Ultrasound report highlights some bulkier metasis in the liver. Follow up PET scan report confirmed the spread to the liver and this is in advanced stage. The biopsy report was ER/PR + and HER negative. The oncologist has advised to start with palbociclib and Fulversant. One month of medication is over and all of a sudden my mom has become very week. Got admitted to the hospital for last 3 days and getting discharged today. The Bilirubin level is at 10 now and there are some chest infections. Doctor has advised to review the condition after 4 days and suggest on the next steps. I am just trying to figure out what to do and how to do things now. Any help is highly appreciated. Wishing you all a great recovery too.

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Hi paulina, Sorry to hear about your diagnosis. I know it is difficult especially given the nature of your original diagnosis. I had my first recurrence last July, right before our first family trip with my then 11 month old. That was sooo much fun lol. I went down the rabbit hole and all it did was take away four days of me spending time with my family and REALLY being present. I was in shock too as it came 3 1/2 years after my bilateral mastectomy, 6 months of chemotherapy and 28 radiation treatments. A part of me felt like I failed. I was not in a good place mentally either. Some days are much better than others. I try to remain positive and keep it moving the best way I can. My daughter is what gets me through my days. This forum has also been very helpful. As you can see, you are not the only one, there are a lot of us! Keep in mind, there are many more treatment options than there used to be and there will be many more to come. Stay positive! PS. Plan fun things!! ;-)

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So sorry for you too. You are right you do feel like you failed. But as my oncologist says it’s just bloody bad luck.

Antidepressants have helped massively, I don’t know how I would get through the day without them.

Like you my keeps keep me going and fighting. Remembering too that not one person walking the streets has any certainties.xx

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Do you mind me asking what treatment you are on?

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I was on Tamoxifen after I had my first recurrence last July. Just switched 2 weeks ago to Ibrance and Letrozole. I also have a zometa drip every other month and monthly lupron shots. I am currently in a holding pattern to find out when I can remove my ovaries/fallopian tubes and or have the full hysterectomy.

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I always forget ...when I started Tamoxifen, I also started the lupron and zometa. I always forget to include since they are not pills taken daily!

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Similar to me. I’m on Ibrance letrozole and the zoladex shot. Take numbing cream for that-bloody hurts!!!

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Hi Paula Same story here.. first cancer August 2015. Stage 1 TNBC.no lymph nodes. Affected.. they said they would never see me back. So here I am ..swollen lymph nodes on right side of chest wall where I had my Breast cancer. I began to plan my funeral when I tried to join a TNBC foram.. nobody passed stage 3 was allowed to join...they didn't want to hear about stage 4 (no hope). I've decided I'm not planning my funeral .. I began to read a book called RAISE YOUR VIBRATION by Sabrina Reber. And I've never felt SO Happy. full of joy and Love. I've decided to live ... I've had my 4th Taxol yesterday. Trying the cold cap this time.. I've began juicing to keep my bloods good. But like you I CANNOT believe it has returned when I had caught it so early first time around..I'm 48yrs.. with 4kids. From 10-15yrs

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Hi Kathy,

I found I lost my faith in my team after it came back.

Even when mine came back they said don’t worry it’s just a tiny local recurrence and we will sort it.

They wanted to do an pet scan just to make sure it’s all ok, but not expecting anything.

Well, unfortunately it came back in the lymph nodes on the other side.

Yes, it’s super annoying about the whole if you catch it early you will be fine-not true!!

I sometimes want to scream when I see/hear that.

I found all the helplines so useful when I was stage 1 and in remission.

As soon as I became stage 4 it seemed their time had changed, now I don’t bother with them.

I’m definitely going to get the book you have read, I’m always up for a good uplifting read.

Good for you for deciding to live!! You are here so you mine as well live!

No one has tomorrow guaranteed.

Nice to hear from you!xx

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Thank you all for the posts. They lift me up. I still struggle with this stage4 shit. I was seven years in remission before it was found again so who knows how long it was really there. I haven’t accepted it and don’t know if I ever will. I don’t want it as all of us feel. Just damn bad roll of the dice.

I still have faith in God and power of prayer and people coming together. I don’t talk about it much but am pro-active. I finally found a therapist who knows mbc and gets it. That would not be if it weren’t for all of you sharing here. It made me search and reach out more. I still have not wrapped my mind around it and it’s more than two years. Its not negative- I try to keep it on the back burner. I want to focus on each day and what it brings. I am still working. I went back to college in my 50’s to become a RN. I will not let mbc take my thunder from my passion of nursing. I have older children who have children- grandma of 5. Today I was tired but went to see my two year old grandson. I forgot all about mbc😄fifth cycle of ibrance started. Next pet won’t be until May or June.

Again, thank you all for being here and for being you. You all make the difference to me.

Much love

Frances

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Frances thank you for your posts too. I read them all as a fellow nurse. I was a nurse from my early 20's and know how hard it is so when you just mentioned you started in your 50's I was so proud of you. We all need the support of others and this group of women who truly get it is so comforting and inspirational. Keep positive. Take care.

Sandra

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Sandra

Thank you💕💕💕

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Hi Paulina,

I can 100 percent relate to you. In May I was diagnosed with a reaccurance after 5 years. The recurrance is in my superclavicle lymph node above my clavicle bone and in my mammanary lymphnode in the middle of my chest.

I understand your shock. I threw a big party to celebrate 5 years last March and then 2 months later was dealing with this whole life change! I have learned to live a day at a time and am hopeful that there are so many new treatments available since my stage 2 diagnosis in 2013. My oncologist refered me to the social worker immediately who suggested a wonderful young women’s METs support group that has wonderdul,strong, educated, positive women who are at all stages of their METs who are such an inspiration. It is at that group I also discovered SHARE and this online outlet. Having to live with this disease everyday for the “rest of our lives” is a struggle but I have surrounded myself with people that help Me through it. I also see a psychiatrist at the breast center who has prescribed me some anxiety meds that take the edge off a little and she helps me set small goals to stay healthy and happy.

I never expected any of this. I am angry, frustrated and worried at times but somehow continue on with a different outlook on life and a different tolerance for others.

I have had good results on letrozole and Ibrance in my past 2 scans. Tumors shrank and no progression. I am currently off the ibrance and getting radiation to lympnodes and re-radiation to My breast for 25 days. I never thought I would have to go through this again. It’s been very difficult for me. It all sucks!! But I say the serentity prayer daily and breathe.

Hugs,

Kim

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Hi Kim, I’m so sorry we are in the same boat.

I started antidepressants as soon as I got the diagnosis.

Thank you for all pf your tips!

I just started writing on the forum on Friday and am so overwhelmed by how wonderful everyone is.

I’m on my second cycle of Ibrance and letrozole, so no scans yet. So not looking forward to that.

I keep reminding myself that I didn’t any certainty in this life before this diagnosis and I don’t have any after.

I meditate everyday now

Thank you so much for writing to me.xx

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Can I ask if you had symptoms or just a routine scan? I had no symptoms at all, seems like it’s in the same place as mine

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First I got red and a burning feeling from middle of chest up into my upper chest on right side for about a week. I thought it was related to excercise I was doing. It went away. A couple weeks later I felt a lump right above my collar bone as I was having a conversation with someone. I Called oncologist immediately. I think They did ultrasound and then biopsy same day and confirmed it was breast cancer. Then I had a full body pet scan, Where they also found very small amount in middle of chest mammanary lymph node. (I’m convinced that redness I had was the cancer moving up through my lymphnode chain)

Three months before all this I had a mammogram and saw my oncologist for my 6month follow up. He never suspected anything. I had been on Tamoxifen for 5 years and we decided to stay on it another 5 since I tolerated it well.

I never had a pet scan when I was first treated (lumpectomy, chemo, radiation of breast only). The Dr didn’t think it was necessary because I didn’t have any symptoms of mestastis. When this happened 5 years later he said it was probably in my chest wall all along, since the beginning. With Tamoxifen keeping it at bay I guess.

When I saw My breast surgeon who I also see yearly and feels my lymph nodes he said he would’ve never felt it if I didn’t tell him it was there.

I am very in tune with my body. And knew immediately when I felt it that something wasn’t right. And I wasn’t even aware that this was a common place it would travel to. Nobody ever told me to pay attention for it.

I read that the superclavicle lymphnode’s job is to trap toxins before they go into the system. Looks like it

Was doing its job.

Sorry for the lengthy response.

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Interesting. Similar to me I had just had a mammogram 6 months before and nothing. I then had sharp pains in my breast and is sensation in my arm pit.

Could that you caught it quickly.

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This group is a godsend. Without all the shared experiences, here I

would be truly lost, Thanks all.

Mary in Maine

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Paulina, a stage IV dx is alarming and mentally devastating news. I have been stage IV since my original dx in November 2013 with Mets to my liver and I am still here. For me I used visualization, excercise (walking, swimming and yoga), meditation and a firm belief I would be okay. I never thought about or even began to plan a funeral. I focused on what I felt were tangible goals. My daughter got married 8 months after I started chemo, I was determined to be at her wedding where I would dance and celebrate with her and our families and friends. We also purchased a house and renovated it while I was going thru the worst part of chemo, I was exhausted but busy and distracted from my dx. After that there were other goals or milestones I looked to for inspiration. It’s not easy but it’s helped me. My next thing is our youngest daughter’s graduation from college in June, she was 16 years old when I was dx and she was present for the worst part of my treatment. Find things and reasons to be here.

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Thank you for your wonderful advice. It really makes a difference to hear from people like you who are living their lives, and are still here many years later! Thank you XX

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I just reread your post. It’s made me feel so much more posative. Thank you,

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Me too. Trying to be positive today - although still in bed! X

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Useful caution, as I am on Letrozole. thank you.

Hi Paulina

When I got my stage IV diagnosis in Jan I also got very

depressed. The oncologist couldn't promise how long I'd live,

and old articles about my condition (mbc of lung with pleural

effusion and shortness of breath, plus a severely messed up

mitral valve in my heart requiring some sort of surgery soon

) were very grave.

I adjusted my will, reconsidered my funeral plans, and

decided what things I needed to do before my death.

(I am about 20% there, by now, writing up job instructions

for whomever would take over management of my properties).

Meanwhile, I have benefited greatly from this site and also

have researched alternative "cures" to try, and sent for and

started taking all sorts of anti cancer supplements and

the pleural effusion is being drained by a pleurex catheter

every other day, which has improved my ability to breathe

greatly, so I am encouraged I might make it another couple of

years.

Nonetheless, I have come close to accepting that I may soon, or sometime

soonish, take a long trip, and may not hug my only beloved

daughter for another 40 or 50 years. On the other hand

I expect to join lots of dear friends and relatives on the other side,

and pets, so it is not entirely scary. Just hard {very tearful)to say goodbye,

here as I am very invested and involved here for 81 years.

One advantage I see, I am now summarily warned I may die, and it has

given me the motive and opportunity to finish things I've left hanging

for too long. I never before really confronted the fact that I

dont have forever here . Whether I live another 10 years more,

at least I have been forced to accept life doesn't last in the body

forever. It has forced me to "grow up" ... and gratefully admit it

has been a good long run, already, beyond which many of my

friends weren't able to make it.

But my emotions have stabilized and if I get any encouragement

from future exams and oncologist appraisals, I will definitely

be in a better frame of mind than I was 10 weeks ago when I

got diagnosed with stage IV. So, it can only get better, with luck.

Keep us posted, please !

Mary in Maine

PS Keep a watch on advances in immunology very promising.

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