I'm new.
Hello, on June 13th, 2016 I found out I have stage 4 breast cancer. I'm doing what I can to get things done, to get support. I'm so terrified. What can I do?
Comments
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To Antoinette,
So sorry to have to say Hello from someone who was diagnosed straight out of the gate almost three years ago. I had really poor, poor treatment initially. Just want you to know after I got over the immense initial shock, that I have had some of the best days of my life. Oh to be sure there have been some side effects of treatment, but I have been the beneficiary of wonderful greetings and prayers. I have learned and grown. Just take one day at a time. Gather loved ones around and know that you will find huge amounts of information and encouragement on this web site. It is not without sadness here but for the most part one finds ways to cope. good luck. Carolyn from Music City
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I am so sorry to hear your news but so glad you found this site. I am new too and have found great comfort in these boards. The first month was really hard for me, I cried every morning as I became conscience and had to relearn that I was stage 4 again. I don't think I will enjoy the movie Groundhog Day ever again having lived it. I asked for a mood stabilizer to stop the tearfulness and frantically got all my affairs in order and then I had to tell myself that I am not dying today so I need to live! It is really scary in the beginning but I hope you will have your ah ha moment soon. Reading these boards and posting will help! Ask anything and everyone will respond!
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Hello Antoinetta! I third those emotions. I'm sorry you have to be here but will say that it will get better once you have a treatment plan in place and gather information. The ladies here are wonderful support. It would help us all if you could fill out a profile when you feel up to it...
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I am so sorry for the reason that you are here. You will find many supportive ladies. You are in shock and fear fear right now, but it will pass. I cried everyday for months, too. I started to feel better once I knew that the treatment was working. Then I had progressions, went thru the turmoil again. There are many options for treatment. When one fails, you will move to another. Many are doing well for a long time.Prayers and hugs to you.
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Welcome to our elite club. Even though none of us wants to be here, it is an amazing group of ladies. We can tell our opinions on treatments, etc, but more importantly we support the individual. I wish you the best.
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Antionetta -. Anti-cancer A New Way of Life was one of the books that gave me hope and made me feel less out of control.
There is hope. It seems like we are turning the corner on treatment options. But it is not like everything is just fine. Hang in there and take it one day at a time. It takes a few months to get through the emotions to the point where you are really rolling up your sleeves and figuring out, for yourself, how you are going to move forward
>Z<
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I'm new too, and terrified! So, sorry to meet you like this. After weeks of flip flopping between hysterical sobbing grief and exhausted numbness, I now get a little more peace each day. So there is hope that we'll eventually be able to appreciate the time we have.
My husband and I met with a cancer counselor who helped tremendously. She helped us talk through and articulate those over the top feelings which released some of the pressure. She also suggested some coping mechanisms that proved to be very effective. Just one session gave us a little bit of our life back. It doesn't change the awful fact of this diagnosis, but I'd recommend it.
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It is a shock, overwhelming sad, fear, tears, isolation, so many feelings.
1. Once you get your treatment plan it gets so much easier.
2. Take everything day by day.
3. Do you research, own everything, which means understand your dx, treatments, side effects, pain, control you scans, appointments, etc... What I mean is take notes, ask questions, if you don't like something you are told push back. This time in your life you need to take charge and not put 100% into those who do the scheduling, insurance, even your doctors.
4. Get on anxiety meds. Seriously, this is some heaving crap to deal with emotionally. It makes the world of difference. If you are sleeping, ask for something to sleep. You need all your energy.
I could go on.... but these are just some good baby steps.
I was diagnosed 12 years ago with cancer, 8 years with Mets in my lungs and bones. I am still here. I have had ups and down, but still considered stable.
Post questions here. Chances are many of us have been there.
hang in, onward and upward.
Janis
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Ditto what others have said. I am almost 3 years out with mets and doing well. Working, tho retirement is in the offing, trying to launch my young adults. It becomes easier with time. Life will never be the same - but it can still be great
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it's all so new and unreal I'm sure. It does get easier and wonderful advice from the ladies who have already posted. ....especially remembering it is your life! If you can't adhere to someone's schedule, let them know. Within reason schedule your scans etc. when it is most convenient for you. Hospitals want your business!
Sorry to see another Okie here!
Brenda E
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I'm so sorry about your diagnosis, Antonietta, but glad you've found us! What treatment are you on, and what specific questions do you have? The first few months are especially hard -- just trying to wrap your head around a Stage IV diagnosis. But the vast majority of us get on top of things with the great meds available these days and soon realize that life goes on -- even with advanced breast cancer.
In addition to the suggestions above, I would say, be sure you're on the best treatment plan by at least checking in with a major medical center (if you're not already being treated at one) for a second opinion. Centers like the ones in a list I'll link here see the most metastatic breast cancer and actually have better survival stats than smaller, local facilities. It's always a good idea to check in with the one closest to you, just to be sure you're on the right treatment path. http://www.cancer.gov/research/nci-role/cancer-cen...
I'm also going to give you a couple of links to other thread here I think you'd enjoy.
Tips For Fighting The Dark Clouds https://community.breastcancer.org/forum/8/topics/...
LIfe Does Not End With A Stage IV Diagnosis (Really) https://community.breastcancer.org/forum/8/topics/...
Let us know how else we can help you! (((Hugs))) Deanna
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Hello, I am new to this as well. I found out in January I am Stage 4, with mets to spine, liver, and mainly lungs. Lungs have been the worst, as I am tied to an oxygen line I can't escape. I luckily have lots of "family support," but am still at a total loss as to where to start thinking this thru. And actually feel completely alone, and like I would do my family the biggest favor by just getting "out of their way" quickly. I have been in chemo since January, with most of an idea about the "plan," but still feel completely out of control of EVERYTHING. I don't have much faith in counseling, am a pretty private soul, and have met before the one counselor I believe is provided by my insurance co, and really wasn't impressed. I am in such a fog, am completely energy-free and lethargic, and end up wondering why I am not "doing better" at this, for lack of a better term. Also, feeling awful for feeling so awful, as my conditions could be a million times worse than I feel like they actually are, when I take the true measure of it all. Such a back and forth, and up and down from day-to-day. Then figure that is to be expected, and the cycle starts anew. I really just can't seem to get much of a grip on any of it, or how I feel about any of it, or how I should feel, or anything else... Recent chemo (Gemzar) seems to be doing it's job, and I think it's driving me nuts just sitting around from week to week waiting, or whatever it is I am doing.
Thanks for listening, I don't really have anyone who just wants to listen to me cry. Reading back, all I think is geez what a whiner, and try to tell myself that's o.k. I have a great cat who's totally freaked out by it all...
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1vamom - Just wanted to let you know that I read your post and I am listening. You have been through so much this past 6 months.
These days I live in an alternate universe, where I have cancer , as well as a normal one. I don't expect that anyone outside this forum or the few people I know with cancer can get it. In that way I avoid feeling alone. I just step out of the normal world and into this one when I need to talk about cancer. Because no on else will get it.
This is where you can talk about it...
The lungs thread seems like one place to start ... these ladies will know what it is like to be tied to an oxygen line.
It's very important to "whine" ... to dissect what is getting you down as you did. Most of us will never get rid of the cancer, but when you break it down, you may be able to fix this piece, or maybe that piece. The whole complicated interrelated mess is too much to fix, but people will chime in with what helped them with that little bit.
Hang in there and keep whining and asking questions here. The cancer isn't going away any time soon, but there are little solutions that can give you back a sense of control.
Oh I hate the lack of control.
>Z<
ps if you update your profile with the current diagnosis and treatment, people will have more context for your posts.
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I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here.
The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier, and you'll find many people who are doing well with a good quality of life!
If it's possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer (if you were previously diagnosed). If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).
Even if you are hormone receptor negative (ER- and PR-) you may still consider hormonal therapy according to the latest (2014) National Comprehensive Cancer Network (NCCN) Guidelines, "Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms. The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results are incorrect. (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients). From: http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#33/z
This is very important: Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.
You may also want to seek a second opinion at any point about treatment.
I've compiled a 120 page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32
Two published books which you may want to read are:
"Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber (the book zarovka recommended). The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.
"Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.
Please post if you have questions, and wishing you a great outcome!
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Antonietta, 1vamom, welcome to the forum. So sorry to meet you.
1vamom, You need help. An antidepressant, maybe? You say you have lots of family who care for you but you don't feel supported. Can you figure out what would help you feel supported? The "I just want to die" feeling is usually depression. Please talk with your docs about this.
Antonietta, you're in what I think of as the "shock and awe" period. That can last anywhere from weeks to months. We've all been through it. Ask for whatever help you need. Better living through chemistry. I couldn't sleep after my diagnosis and took sleeping pills for a couple of months. If you need anti-anxieties, anti-depressants, etc., etc. It may or may not be for forever. Oh, and as my onc originally told me: "don't give away your stuff".
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Pajim, I like the sound of your Onc! Mine in the beginning was so grim I DID get rid of a bunch of my stuff! Not too much I regret yet but still.....Even now she is not terribly great at instilling hope.
VAMom, Welcome and so very sorry to hear of all the emotional trauma you are going through. I can honestly say we have all been there and it does settle down and get easier as time goes on. A lot of us have felt like we are "in the way", not doing a better job of dealing. It is totally OK to be a whiner. We all need to and have certainly vented here about the fear, anger, confusion.... you name it. The only things I can suggest are to come here and read about other women's experiences and most importantly, try and get up and out every single day whether it is for a short walk, a cup of coffee or walking the mall. Distraction and exercise helps tremendously. Let us know how you are doing.
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Welcome Antonietta, Sherriw and 1vamom. I'm glad that you found us, and I hope you find much love and support here. I am almost 2 years into my diagnosis (stage IV from the start) and I find my self nodding in agreement with all of the above posts. Don't be afraid to ask for help. I had my husband come to every appointment with me in the beginning. It was a lot of info to absorb and my mind was in a fog for at least the first month. I also took an anxiety drug (Ativan). I needed a lot of convincing that I needed it, but it helped me sleep which was becoming a real problem. The treads that dlb mentioned are also very helpful. I especially love the "Life does not end with stage IV....really" thread.
Most importantly - be kind to yourself. You are going through a lot and your emotiions will be all over the place. Few people in your life will know what it is like to walk this path, that is why we are here. People in your life will say stupid things. Love them anyway, they are probably unsure what to say or how to help. Someone else mentioned living in two worlds. I feel like that every day. Two years in and most of my life is back to "normal" ( same job, friends, hobbies, little to no pain) and yet it is anything but. Lastly, seek out the stories of those who have been Stage IV for many years, with good QOL. They are out there, and becoming more and more numerous with increasing advances in medical science. Those stories helped me so much in the beginning. I started to believe that maybe I could be one of them. You could be too, so make the most of it!
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Hi Antionetta. Boy do I remember that feeling. I was diagnosed with MBC at 32 in 2014 and have been what we call NED (no evidence of disease) ever since. It will take time to process your feelings, so don't rush yourself. You'll settle into a treatment plan which will put your mind at ease. We're here when you need us. I'm in Arkansas so perhaps were close enough for a visit someday.
Kelli
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I am new too....diagnosed May 22nd. Less than a year ago, I had a clear mammogram and now MBC!!
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