Life does not end with a stage IV diagnosis (really!)
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Hi nopink,
Our lives will never be as they were before bc. I know some folks really detest the term “new normal”, but regardless of what you call it, I think it’s important for ones quality of life to make the adjustments that bc and tx bring. Most of us at stage IV won’t ever have the luxury to get over bc and carry on as before but we can try to build our lives back to finding joy and “normalcy” as we live with bc
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Exbrnxgrl is absolutely right I think. Some of us may not be as fortunate as she has been, but it is inspiring to know there are folk out there like her and various others who are just getting on with life. We cannot live with stage 4 in front of our faces 24/7. Dong the things we enjoy, pacing ourselves, working ( paid or volunteering) are all extremely important. As is only dealing with the people who care about us as we care about them. The rest can wait.....
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Hello everyone. I just wanted to introduce myself and thank you all for sharing your stories. Reading them have given back life. I found out ten days ago that I now belong to this club (brain Mets) and it has been a nightmare since. My craniotomy is scheduled for next week; I haven’t slept, the shock is real and the fear and mostly, I am mad. So upset that this can happen to anyone, that in 2020, there isn’t a cure for this this horrible disease and although I know, new drugs keep us alive, it’s just not enough. I believe these are valid feelings and I don’t want to sound ungrateful for medicine and everyone who works to keep us alive but it’s upsetting, no matter how I look at it. It’s unfair. I will be 30 years old next week and I have a 3 year old. I have so many plans for us. I want to be positive but the thought of death clouds my judgement. I hope to keep on reading more positive stories to keep my spirits high, so again, thank you all so much. Xx
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Roro,
I’m so sorry you joined this club no one wants to be in! Those first few days and weeks are awful. It can get better when you have gotten through surgery and have a plan in place. I needed anti anxiety meds at first...just to keep from crying. Now I’m more than 4 years out, stable and living my life. There are quite a few of us. We understand. You’ll find support, information and empathy here!
Sending you some virtual hugs to get through the coming week successfully. I know others will chime in.
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Hi Roro - I'm a newbie too. Got news Feb 10th. Hang in there. We can hold each other's hands
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Omg, Roro, yes, your feelings are very valid. You are entirely too young to be dealing with mbc. My heart goes out to you. I can only imagine your emotions going up and down and all around. It is a lot to deal with when you are only 30. This damn disease. Damn it. You are right, where is the friggin cure??
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Roro and moth- You are in my thoughts and prayers.
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Thank you everyone for the encouraging words. It’s tough. So much unfairness in this. It’s been the hardest days of my life. The uncertainty of what can happen eats me alive. I’m so tired and so wired up from the steroids at the same time.
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Roro,
I am so sorry about your dx. The beginning is tough. As to fairness, when is being dx’ed with a disease which is most often terminal ever fair? Much in life is not fair, because that’s not how life works. Breast cancer, particularly stage IV, is one of many, many incurable diseases. Breast cancer is particularly complicated because is is not a single profile disease. Yes, we get frustrated and even angry with this fact, but that is the current reality. Let those feelings flow, but don’t dwell on things you can’t change. Take good care of yourself
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Last week we were on Presidents week break. Did I go anywhere or do anything exciting? Not really... I got a new car and a new washer and dryer. You may all remember that I totaled my 13 year old car and then my 23 year old washer sprang a leak. So I spent my vacation surrounded by owners manuals because things sure have changed with cars, washers and dryers in the intervening years. Do I sound like I’m complaining? Well, not really as I’m glad that I’m healthy enough to be experiencing all these things that make life normal! And after an adjustment period, I am sure liking all the modern bells and whistles. I have booked a few days at a cabin in Lake Tahoe for spring break. It will be fun to drive there in my new car ☺️
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Roro.... hang in there. Definitely the first few weeks/ months are THE worst. 30 and brain mets must feel like the end. BUT there are many of us out there and there are many treatment options. The best advice I was ever given by an oncology nurse during my primary treatment 12 years ago was:
‘The more relaxed you can manage to be, the easier this will be firstly on you, your family/ friends and also us who are trying to help you’.
She was absolutely right.... stress is inevitable but there are strategies you can use to help. Relaxation, breathing and so on... all probably sounds like jangling beads and crystals to you right now, but worth considering.
I personally took an age to accept I needed to look after myself in my head as well as my body! And I also work very hard at being the patient the medical teams were happy to spend time with because I’m not difficult ( I am actually very difficult as my husband will testify), I’m smiley happy ( I am actually a grumpy old woman) and although I question EVERYTHING, I also try and listen.
We’re here and we’re aiming on this thread to try and keep life as normal as possible ....for us.
Check out some of the other stage 4 threads too. There’s def one for your particular situation. I found the one that fits my diagnosis / meds to be very supportive and helpful.
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Roro,
I am pushing towards 2 years since I found out it had come back, and was now never leaving. You will get your legs under you again! This is not to say you will never feel wobbly again, I struggle from time to time... But, I try to stay in the “I don’t want to miss the now” frame of mind.
Take care!
Stace
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Roro - I'm twice your age, and still I feel your disillusionment and pain myself. Yes, the 1st weeks/months are the WORST! Then you get a plan and slowly start to feel like you are doing something positive. My advice is to take a brazen and vocal advocate w/you to MO appts. My DH fills this role nicely. And tell the MO all the issues you are having, physical & mental. My MO ordered PT to get me back to moving and Lexapro to calm me down. I'm very thankful for both. Best wishes.0
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Roro - so sorry to read about your diagnosis at such a young age, but so glad you found this thread. Just to echo what others have said - the first few weeks/months are the WORST. I was absolutely terrified. When you have a plan in place and then start to implement it, it does get a little easier. I fully agree with those that have said PT and Anti - anxiety meds or activities are hugely important. I could not have survived without the anti-anxiety medication, and I wish I had paid attention and done the PT that was prescribed because 8 years later my body is still paying for it. (I had extensive bone mets) This thread is a great source of inspiration.
My husband and I just returned from a ten day road trip - skiing - through Utah, Wyoming and Montana. It was my attempt to turn my husband (he's my second husband) into a "real" skier. (he hates it when I say this) I grew up on skis, and to me it's second nature... he is a mid-western farm boy, so I think my expectations were a little out of whack. Anyway, he tries very hard, and we had a lot of fun. I don't have nearly the energy I did 10 years ago, but I keep trying to tell myself it's my age in addition to everything I have been through. I was grateful to be outside every day enjoying the sunshine and the snowstorms!
XO
Andrea
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Andi you are just such a STAR!
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roro,
I was also 30 at DX. I was dx de novo to the liver and also has a 3 year old son. My biggest struggle was thinking about him needing a mother and him not remembering me. I thought I was dying right then. I still do struggle with it sometimes, but like others have said, after some time, things really do even out and settle down. I'm 32 now and currently NED and have been for a year . Things are mostly back to normal for me besides all the appointments and such . I have another scan soon and hoping it is still good.
But yeah, the beginning was such a shit show and the unknown made my anxiety soar. I couldn't look at my son without breaking down.
Once you get a plan in place, and give it some time, I think you'll be a little more calm
If you need someone to talk to that's your age, feel free to reach out. It's a special Kinda lonely when you feel like you're the youngest in the centre. When I did chemo, boy did I ever get the stares. Everyone so much older so curious as to why I was there. I look very young ( according to most patients I see at work " Aren't you too young for a husband and a child !!! aren't you too young for hot flashes?"") -- so it is always little frustrating when I go to the cancer centre. I garner a lot of attention lol
anyway, this is a good board to hang out in. IT just shows us that there is life beyond that 2-3 yr stat
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Thanks for the thread Caryn, and your words of encouragement. I'm still working on the shock of it, started new tx on Monday and trying hard not to let it steal my future, got a lot of life yet to live. Thanks for reminding me it's still possible!
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Hi Caryn , your welcoming post is just what I needed, I was just diagnosed with mets to the bones on Thursday, I am in shock and very scared. I was diagnosed with pancreatic cancer seven years ago, had whipple surgery, chemo and radiation.. a year later diagnosed with bc, had lumpectomy with radiation, next year was diagnosed with triple negative bc, had bilateral mastectomy and more chemo, have been good up until Thursday....I had a ct which showed three spots on my spine, had bone scan yesterday, don't know results yet and next weeke will have needle biopsy. I've had so many procedures and cannot take them telling me it's only mildly discomfort anymore, I know better, I want to be put out for this biopsy, can you guys tell me what to expect, I need to hear from people who have been thru it not the medical personnel who say it's just a little discomfort. I am in shock and afraid of what lies ahead, especially for my kids and husband, who have stayed by my side during these seven years...they told me I have to have dental clearance if I'm a candidate for some shot, can you guys tell me what to expect, thanks so much and sorry for rambling, I'm nervous and very anxious, thank you..
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re dental clearance- there must have been a misunderstanding there. Only teeth with poor prognosis recommended for extractions ( ie those that would have needed extraction anyway just later). This is because if you are taking certain drugs and need to have the tooth removed there is an increased chance of necrosis of the jaw. But teeth almost always can be treated so there would be no need for extractions.
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Hi atall,
Glad I could help! Although I have tried to keep this thread focused on how much “normal” life there can be at stage IV, I hope I can set your mind at ease regarding a bone biopsy. My bone biopsy was on my upper femur. I was given Versed and a painkiller via IV. I was conscious but Versed makes you not care what is happening and it has amnesiac properties so you don’t remember much. During the biopsy I was frequently asked about my pain level. It was very easy for me, but I realize that we are all different. Versed is my favorite drug for these type of procedures!
Dental clearance refers to your dentist determining that you do not need any invasive dental work. I don’t believe you mentioned extractions so I am not sure what Anotherone is referring to, although extractions are invasive. Bone strengthening drugs such as Xgeva or Zometa increase ones chance for osteonecrosis of the jaw (ONJ) which could be exacerbated by invasive dental work. I was on an older bone strengthening drug for about two years but have not been on one for over five years.
Take care
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thank you so much, I will mention this versed to my Dr. May I ask how long you've been stage 4? I am in shock and feel so overwhelmed right now while trying to stay calm for my family but inside I'm a wreck, are these shots they give you not too bad, I retired two years ago from our county department of social services and the last two years took a job at our local elementary school as a lunch monitor, I love working with the kids, gives me a reason to get up in the morning and would hate to give that up.....
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ah , I just realised that clearance in this context was probably meant to refer to a dentist checking you and oking that drug ( biphisphonates they are) , not to " clearance" as we dentists often use it meaning extraction of all teeth 😱
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thank you for explaining, I am so confused right now, cannot think clearly, it's like here we go again, put on that warrior personality, battled pancreatic cancer seven years ago, had whipple surgery, then bc a year later, now this.......very overwhelming......
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anotherone,
LOL! As an elementary school teacher I didn’t realize what clearance meant in the dental world. Rest assured, no one needs to have their teeth extracted to use bisphosphonates!
atall,
I have been NED for 8 1/2 years. Although this is not common (they call those of us who are in my position outliers or exceptional responders) little by little we are seeing more of it. Not enough, but more
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Wow Atall, you’re in the scariest place right now.... but it will honestly improve even though we don’t really know what’s for us.
Re dental clearance I had a locum dentist during my primary diagnosis -who didn’t have English as a first language- tell me that if I had ‘any infection, all teeth out’... to which I basically freaked! My usual dentist, who’s great, proceeded to tell me they called the locum the ‘pus police’ and there would be no need ever to take my teeth out.... YIKES!
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wow, that's crazy! What's a locum dentist????? Don't want one of those!
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that is WONDERFUL! I've been Ned for seven years with the pc......now this bc had to go and ruin it......
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Hi Atall, locum just means a substitute when the main guy is off.
I’m NED for Breast cancer just nowand hopefully if you’ve already achieved that for PC ( wow well done!) you can get there too for BC... meaning that your body must react well to the drugs. However, that‘s all probably up in the air for now, but we’re here for each other, so keep posting how you’re getting on!
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Hi my name is Yvette I was diagnosed with malastic breast cancer stage 4. I had radiation and chemo on feb 11 the dr told me that the cancer has spread more in my bones.And that my chemo would be stoped so i can take Ibrance and some other medication that is suppse to stop the estrogen in my body to starve the turmors.I admit i am having a hard time dealing with it.I am a mother of an 18 year old autisic son and i have 2 girls a 7 and a 5 year old. They keep me going but everyone tells me that is should rest and take my meds.Thank you for reading
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Hello Ivette, welcome. I’m sorry you find yourself here, but know this is a great community. Although resting is important so is paying attending to our kids and family or doing whatever we think we must. Take things easy but ultimately listen to yourself. I hope you find support and answers here. Xx
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