My mom was recently diagnosed, I need advice/help!!
Hi my name is Cassidy and I am just 19 years old. My mother was previously diagnosed with stage III breast cancer back in 2008 and was cancer free for 6 years, up until this past July. We all received the news that her cancer had metastasized to her spine. Since I am fairly young, I did a lot of research on this specific cancer and found myself crying for hours, especially since there is no cure. I constantly question my parents based on their tone and the words they use because I always think they are hiding something from me. Each time I start to have a panic attack, my mom calms me down by saying its going to be okay and that her doctor strongly believes she will live for years. Because I am so sensitive, I never believe them. The only words I want to hear are "we have found a way to cure your mom's cancer". Everyone always tells me the same thing and that is "be realistic, and start learning to appreciate every moment you still have with her". Although I understand where they are coming from, that is still extremely difficult for me to process because I am so young. My mom had her first routine checkup 3 months ago in November, and the cancer remained stable; no growth or spread. She is now doing a pet scan tomorrow and I am freaking out. Would anyone be willing to share with me their stories or any information/advice that would give me some hope? My mom is my rock, my everything and i can't imagine losing her this young.
Comments
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Hi Cassidy,
I'm sorry to hear about your mom's diagnosis. It's a scary time for her and all who love her.
If you could provide some more info about your mom's type of breast cancer, I'm sure other members who have similar types/treatments will be a long to share their experiences. Is her cancer hormone receptor positive/negative? HER2 status? What type of treatments is she having or has had? All of that info will help the community guide you.
As a family member, and not a stage IV patient, you might find the Caregivers/Family Forum on here a better fit for your concerns. You can find it here: https://community.breastcancer.org/forum/16
Best of luck to your mom!
Carrie -
Hi Cassidy,
Since your Mom has bone mets, you may get some comfort from visiting the bone mets board. There are a number of BC patients there who have lived for years with bone mets. They may also be able to answer any questions you might have about mets to the spine.
((Hugs)) and best wishes to you and your Mom.
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the info on here Is much better than on the regular internet. the info on the net is outdated and sometimes downright wrong. I was nearly scared to death when I looked up my stage 4 breast cancer, it had settled in the base of my spine, but a simple pill and one shot a month is shrinking it down now. please believe the medical professionals as to her prognosis, it will take years off your worrying.
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Hi Cassidy, there are a lot of great women here that have wonderful stories that will give you hope. The only thing I wanted to add was, to check out your local support groups. In my area they offer support groups for caregivers and/or the children of cancer patients. To talk through feelings or situations with people who understand.
And if you feel stressed or anxious about anything. There is no shame in talking to your own doctor to get through it.
Come on over the bone mets thread to see more specific stories regarding metastasis to bone/spine
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Cassidy, your anxiety and panic are understandable. You are very young to be dealing with your mom having mbc. My son was 18 when I was diagnosed and believe me, I felt terrible that he had to cope with my illness. But as a mom, I would have rather I was the one with it and not have my child have it. So your mom is going thru stuff and you are, too.
Do you have a trusting relationship with your mom? My son and I are close, and I told him I would always keep him informed. I have told him and my other loved ones that I wasn't going to be the type to have a severe relapse before I told anyone. They know that when there is a change and progression occurs, I will let them know. So if you feel your mom has always or often been upfront with you on other matters, trust that she is doing the same now.
Regarding anxiety, please consider getting a short term perscription to help you cope. I take an anti anxiety med that is non habit forming. My son was having anxiety and the doctor prescribed the same med to him, buspar. He needed it for maybe three to six months. It helped him work thru the initial shock. Since you are young and also female, you may have some people, including medical professionals, trivialize what you are feeling. If you think meds would help, please be persistent in seeking medical care and don't stuff your feelings down.
There are other coping mechanisms, like breathing exercises, short meditation exercises, taking a walk in nature, listening to good music, yoga. Follow what speaks to you, google it and come up with some methods to help you when the anxiety rises. Also, keep a journal and write three pages every day. It doesn't have to always be about your mom, but certainly write honestly what you feel. You never need to show your journal to another soul. But it is a very theraputic way to gather your thoughts and sort through them.
Please allow yourself to still have fun. If there are things that you enjoy and can help take your mind off of your troubles for a short time, do them. A Netflix binge, getting together with a good friend or two, trying a new recipe, going to a concert, Your mom still wants you to live your life and it will make her feel good to know you are getting your spirit lifted by some (wholesome) activities (because I am a mom, I used the wholesome word, lol.)
Try to limit your Dr. Google research. It is ridiculously scary. I don't do it. This is a great site for info, and then find one or two reputable sites and stick to them. Going down all those other roads of crazy, bizarre stories is not good for you psyche, The first thing my doctor told me after the diagnosis was not to over research everything and scare myself, and I took his advice.
There are great books out there to give you hope. The Anti Cancer book is a good one. Radical Remission is another. Seek out this type of literature, there is a lot of it.
I was diagnosed in early 2011 from the start with stage iv bc. With treatment, I have been stable for six years now. Every person is different, but we all take this one day at a time. Try not to project yourself out into the unknown future. Practice being more present minded, taking care of Just Today. There is a lot of fullness of life to experience in just one day. Then do it again tomorrow. Keep repeating. This is what I learned to do after my diagnosis. I believe it is called "mindfulness".
It is also helpful to frame this as your mom living with cancer and not dying from it. That is what I tell myself.
Best wishes to you and your mom. Hang in there.
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That was a lovely post DivineMrsM
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I was diagnosed with bone mets in 2009. Hang in ther
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You are 2 years older than my daughter. I was diagnosed with bone mets when she was just 7. It was probably easier to deal with as you don't understand much at 7, but as the years went by she understood more about cancer but also that our quality of life had not changed much as a result. As MrsM said above, there's a lot of life's fullness in just one day and you can stretch this out to a week, months, years...
Hoping you and your mom have the best time of your lives together in the years ahead! But don't forget to live your own life, too.
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DivineMrsM,
Thank you so much for the inspiring words, I really needed to hear that right now. No one deserves to go through this, but I am glad I am not alone and your son is going through the same thing. I really do try to stay positive and believe in my mother's doctors, I just always have that negative "what if" thought in the back of my head. I will definitely consider heading to my doctor's and getting a small prescription to help me in my worst moments. Best wishes to you and your son!
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Cliff,
I appreciate your advice on not looking into research/data on the internet because that was the first place I turned to when she was diagnosed. I am definitely going to refer to this site more. Best wishes to you!
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Cassidy
I didn't have time to read all the other replies so I apologize if I repeat what you have already heard. My doctor told me when I was diagnosed to stay away from the internet and trying to find statistics, etc. The information is outdated and combines the experiences of every kind of breast cancer and every patient's age. You cannot apply this to your mom's case.
i will tell you that I was diagnosed in February 2008 with liver and bone mets. After completing chemo, all of my scans have not shown any evidence of disease. I am starting my 9th year. Yes, many metastatic breast cancer patients can live for many many years and have a good quality of life. I know it is hard for you not to be overcome with anxiety and worry. However, the important thing is to make certain your mom is confident in her cancer team and you are supportive to her during her treatment. Positive thinking doesn't change the outcome but sure makes the journey way more pleasant. It is very scary to think of your mom as having incurable cancer. But it doesn't diminish her ability to live a long and happy life. It is possible and many many of us here are doing it every day. I know as a mom to a 18 and 22 year old, the one thing I don't want is for my children to be so impacted by my disease. I am sure she is not hiding anything from you but doesn't want cancer to be the center of your life.
Much love
Jennifer
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Goodie16,
I am not 100% with all my mother's diagnosis, but I know she has one lump in her spine and I am pretty sure she is HR2 positive. Her current treatment is Ibrance and letrozole. I've heard that combination is very promising, but I am still unsure. I wish I could actually have a conversation with her oncologist.
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Jennifer
Thank you for your advice, and that fact that you have lived with mets for so long makes me that much more positive. I think I have read your story on another site and it was very inspiring! Best of luck to you!
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Cassidy, could you have a conversation with your mom about going with her to one of her oncologist's appointments, letting her know you would find it beneficial to talk with the doctor?
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DivineMrsM, I have asked her prior for me to go with her to one of the appointments but she just says that he is too busy and doesn't have extra time on his hands to speak with me. Which I understand, but at the same time it would be nice for my conversation with him to be one on one.
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Wow. Cassidy, I would not accept that answer from your mom. In a way so as not to cause trouble, I would ask again gently if you could go with your mom to the onc. I do not see how you are going to take up too much of his time. I took numerous people with me during those first months of many visits, my husband, son and two different sisters. They all met the oncologist. And if your mom's doctor feels you are eating up too much of his time, doctors are skilled in knowing how to wrap up the conversation and move on.
Try your powers of persuasion with your mom and see f you can get her to agree for you to attend a visit with her onc. But only in a way that does not stress her out. A little nudge here or there. I think a good onc would want to answer the familys questions, and it helps them see a more rounded picture of your mom and her home situation.
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Hi Cassidy,
I'm sorry about your mom and wish both her and you well. I'm in a similar situation to you; my mom had NED for 10 years after her initial breast cancer diagnosis and was just diagnosed again with triple negative metastatic breast cancer to the peritoneum in January of this year.
My mom was very private at first regarding this too and it stressed her out because she was always my family's rock as well. She still is quite private, but she agreed to allow me to come to her oncologist appointment yesterday (after one month) because I was persistent about her getting the best treatment available for her rare metastasis. I agree with DivineMrsM, a little nudge here and a little nudge there worked well... the important point I gave to her was that I was there to support her, to ask questions, and to take notes that help with her treatment/medicines.
And... I should really take my own advice too... but like everyone said don't let the diagnosis, the "what if's," and negative consume you.
Best wishes.
Tracey
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Hello again,
So it's been a year and my mom just got another scan done and she originally only had mets in her spine, but now there's one on her hip and leg. She just told me today that she had stopped her medication (took a break) for two months. That's just seems like a long period to me. She is back on it now thank god. I just need some positive words because I don't know i what to expect anymore. Have any of you guys stopped your medication before? My anxiety is just going up the roof after she told me it spread.
Thank you!!
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Cassidy, don't get too worried. I have bone Mets in spine, ribs,hips, femurs and neck. I am 5 years from diagnosis and still going strong. I did take a 6 week break 19 months ago due to insurance issues. Nothing bad happened.
Stay strong and enjoy everyday!
Hugs and prayers,
C
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Cassidy, don't get too worried. I have bone Mets in spine, ribs,hips, femurs and neck. I am 5 years from diagnosis and still going strong. I did take a 6 week break 19 months ago due to insurance issues. Nothing bad happened.
Stay strong and enjoy everyday!
Hugs and prayers,
C
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Cassidy, I'm on a break right now whilst we wait for my lungs to heal up. When all is said and done the break will probably last for a month.
So long as her doctors knew she wasn't taking the meds it's fine.
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Cassidy, in some ways you are between a rock and a hard place. You want the best for your mom, and yet it is beyond your control whether she takes her meds or not.
I cannot imagine why she would stop taking it. It seems unfair for her to dump that news on you like that. You will have to accept that she is going to do what she wants, after all, she is an adult and it is her body. One can only surmise that had she taken the meds without stopping, perhaps she would not have progressed.
My mom took meds to stay sane. She would stop after a year or two, thinking she didn't need them any longer. Then she would have a break from reality and it would take weeks and months to get her back to normal with meds. I would beg her to keep taking her meds to no avail. I thought she would do it cuz she loved me and all her other kids. Nope. Maybe it was because it was one of the few things she had control over. She had numerous breakdowns as I grew up and beyond till she passes at age 71.
Maybe having progression has helped her see the very real necessity of continuing her meds without ceasing. My very best to you and her.
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Bigbhome,
Thank you for telling me where your mets are and how long you have lived. Makes me feel a lot better. I'm just praying she doesn't go off her medicine for a while so there is less of a chance for progression!
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DivineMrsM,
I am still upset that didn't tell me that she was going off her medicine. According to her, she did tell her doctors and they were the ones who recommended the break because her body was not doing well at all. I just feel like 8 weeks is way to long. If she didn't tell me about this break, who knows if she will tell me her next. You are right, it is her choice. My dad keeps stressing to me how I have to consider the idea of quantity versus quality. Of course I want my mom to be happy and to live comfortably, but I also want her to live as long as possible. Being her daughter, of course I'm going to be selfish and choose quantity over quality. I thought she said she was getting used to her side effects of the medicine but I guess that was just because she was off I guess all I can do is just remain hopeful and keep praying. Thank you though for the kind words though!
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Cassidy, one thing I seem to be more aware of and more accepting about in the past year is that expression, " Life is messy." I grew up with others around me often criticizing me for making mistakes or not "knowing better" and it made me think life could and should be more controlled, that others avoided these difficulties by always doing the right thing.
I am in my 50s and just now starting to let myself off the hook and relax about not always having my ducks in a row. It is a lesson I wish I'd learned years ago.
The issues you deal with surrounding your mom are areas of personal growth for yourself. My suggestion is to learn some calming strategies for yourself, such as breathing exercises, yoga and mindful meditation. Relationships with parents isn't always easy, but this is what life is about on some levels. We grapple with wanting to do the right thing and trying to figure out what the heck the right thing really is. Sometimes there are many answers and not all of them are right or wrong. They are just possibilities of how things could go.
I would make the most of being present with your mom in the here and now. That doesnt mean do lots of big, impactful things. It could simply mean the two of you taking a day here or there, sitting on the porch drinking coffee, going to a flea market or antique store, taking a drive along a country road, watching a movie, checking out a new restaurant. Just sitting and talking in the living room is a good way to practice being present and not projecting yourself into some unknown future. Try to take things one day at a time.
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DivineMrsM,
Thank you so much for the advice. As hard as it is mentally, I am definitely going to try and spend more time with my mother doing small things. Especially this summer before I go back to school in August!
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DivineMrsM, you rock! Love
Ebru
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