Hi! Im Kim 41 HR+ HER2- widespread mets to too many bones since 3/2021. I've been feeling so sorry for myself lately - I'm assuming this is just part of the process, but I'm curious to hear what other struggle with most. What is the hardest part for others to accept about MBC?
Mine is that I can no longer have any more children. I have 1 and I am SO GRATEFUL but I wanted more so so bad. Tia
Well for me it is feeling so guilty to put my children through this emotional roller coaster. Mainly because I totally understand what they are going through as I took care of my mother as she suffered and died years ago, and aunt. So I guess much of my pain is because of the memory of those time. So that is my challenge. Then needing to still feel needed is huge for me.
Well, I was feeling so sorry for myself that I was suicidal! This was back 2018. I was in horrible pain and my only child which I helped her to raise three kids moved to California when I needed her the most. Only thing prevented me from committing suicide was my six years old granddaughter which I love her so much. Now I am doing much better ( I have MBC to bone). Sort of stable! However you never know with this nasty disease. I promise by time passing you will feel better ❤️🩹🥰Sima
Sima- so hard on you to have them move away just when you needed them most! I’m glad you are better.. that gives us all hope that even when things are at their darkest… they can get better.
Thank you Betty exactly my point to everyone, I still feel sad that , they aren’t around! However life goes on! We still should try to be positive as hard as it is with this nasty disease.🙏😍♥️
Sima
❤❤❤
Hi Kim!It is so hard in the beginning especially. I'm 47 and was diagnosed at age 41 (like you) with denovo MBC and extensive bone mets. I'm on Verzenio and Faslodex and doing fairly well. At least take some hope from me!
The hardest thing for me is living day by day and trying not to think too much about the distant future. I'm a worrier so this is a challenge. My daughter was 3 1/2 when I was diagnosed, now is 9. It breaks my heart to think I may leave her during her teen years. Sorry for the pessimism, but it's how I think and feel.
Please reach out (to the group or me) if you want to talk more. It takes a village to navigate this shitshow.
Hugs,
Amy
Hi @luckymom13. Are you on 6 year was diagnosed ? What medicine you taked ?
Feb 2022 will be the 6 year mark. I started on Tamoxifen and Lupron, was on that for two years. I had a little progression in the bones and 3/2018 was put on Verzenio and Faslodex, continue on Lupron bc I'm pre-menopausal. They have kept the beast under fairly good control since then.I am so lucky to have had almost 6 years! You just never know
Hi Amy,
I am 52 and was diagnosed stage four last year after 2 years of being at stage three breast cancer. I have a 12 year old boy and find it very hard to keep the anxiety at bay. I was working full-time and completing my MBA when I got the diagnosis. Now I stay home but I did complete my MBA! I am starting grief therapy tomorrow since I am having a hard time coping. I would love to continue to talk if you are up to it. I really need friends who are going through this along with me. I feel so alone sometimes.
Ahhhh, the children are the real killer. My daughter was just born when I was diagnosed. I am still very angry that I won’t see her grow up. I don’t think that anger ever goes away, we just learn to live along side it.
I would have loved more children, I would have loved my daughter to have siblings. Cancer has robbed us of so much, and it annoys me greatly that people often forget that it robs our children of even more.
It's so hard
Sorry to hear that you are finding it a struggle at the moment ~ I think we all go through phases of feeling overwhelmed and wondering ‘why me’
In terms of emotional help the things I have found that have helped me has been counselling I’ve had two cycles now since diagnosis and personally found the CBT more beneficial. I also have found that books like Cancer Whisperer by Sophie Sabbage really beneficial
It’s hard to reconcile the ‘what could have been’ with where we are at times but every day is a gift and whilst it may not always feel like it I treasure what I do have and try and work out how can today be my best day
I am sorry to hear that, it is very sad. I struggled with this when I had a hysterectomy in my early thirties. So I know how it feels. I guess nowadays another treatment would have been offered.As for MBC, once I got over the initial shock I was able to celebrate that I had had 26 good years since my first BC diagnosis, and decided to live for the moment. However the restrictions of the pandemic and the treatment regime frustrate me most of all. I feel as it I've had my wings clipped!
For my well-being I've done meditation and healing skills for health courses. And I have some very good friends.
I hope your treatment goes well and enjoy every moment with your family. Carolyn x
Hi Kim: So sorry you are feeling so low. It certainly is a blallow to be struck so young. Especially, having your dreams of having more children shattered. Great that you have one precious child to dote on. Stay positive for her. Now you need a plan to fight this disease and keep it from taking over your life. There are great plans out there and lots of good medicine to help you. I am much older than you, 81 now, and have had this disease for 11 years with mets to my hip bone.
You have found a great place for support here and also information. It has helped me to cope so much.
Take care, visit here often and ask any questions you may have. You will get answers.
Cheers, June S.
Hi Kim, the hardest task for me is not to remember every moment of the day of the life-threatening situation we live in. I am not the happy go lucky person anymore. Physical challenges remind me of things I am trying to forget. Feeling sorry for myself is not unusual. But;
My 18 years old lives with us, he lives a normal life and grounds me with his normally. When I go out, the fresh breeze of fresh air, the stary skies, the bright sun - all remind me of the beauty in living. So busier I am, less time I spend thinking about my condition.
To summarize: I never supported self pity, now I seem to enjoy it occasionally, I also developed a sense of entitlement: I have stage 4 cancer therefore everyone must be nice to me.
A very dangerous thread of thoughts. I struggle to remind myself that everyone struggles with something., and I strongly believe that depression is worse than cancer.
Therefore my main challenge is to avoid being sucked into the dark hole of depression, a place that self pity will rapidly drag me into.
Let's face it: cancer sucks. The least we are entitled to is happiness, otherwise we are cursed twice.
In 73 and have too many mets to nay bones as well. Chideen are not something I worry about but I do feel that I am lacking the possibilities of doing all sorts of things that I had planed, for one, travel: my husband and I had done two River trips on Viking and I had really enjoyed them. Some girl trips with a bunch of friends were also something I was planning. Buying an old house and renovating it was a dream. Taking my grandkids to Disneyland, all thing that I eiherdont have the energy to do or an afraid I’ll run not nedical problems while I an doing them (I’ve already run into that problem): while you are much younger than I am, the lack of being able to carry out those possibilities affects us both. Writing this at 4am so disregard any typos! Elaine
I'm so glad you are getting so many responses! I can't imagine not struggling with this diagnosis in the first months/years! I was diagnosed with E + her2neu - metastatic (bone) breast cancer in March, 2004, the month of my 58 th birthday. I had remarried just two years before that, to a man whose first wife had been very ill with MS for a very long time! I was so sad for him! Education is one of my highest values, so I set out to learn all I could about MBC.... spent quite a bit of time at the closest large book store scanning all the books about BC, lol. I bought the 3 that spoke to me the most. About six months after diagnosis, the cancer center were I am treated had a weekend retreat for patients with BC. I went, not knowing if there would be anyone else there with MBC and was delighted to meet about six other women who also had mets, the very first time I met other metsters face to face. That was a huge help to me, plus I learned that there was a self led group of women with mbc who met for lunch (and talk!) every month. The other thing that was a huge help to me was having a good response to treatment! At the retreat, we heard an audio CD by a psychologist named Belleruth Naperstek, who has studied the mind-body connection extensively. She has a very soothing voice and led us inward to explore our bodies and relax what is tense and troublesome. Afterward I found her work on Healthjourneys.com and bought her cancer and her surgery CDs. (also on iPod downloads and who knows what else by now) Listening to the surgery CD worked so well for me that when I registered for any procedure, my blood pressure was normal instead of high! Like many, I was angry at first. I wrote angry prose, poetry and songs and I hit many pillows with my fist or another pillow. That gave the physical release I needed, LOL! I also attended some bc conferences. I found the annual conference of the Metastatic BC Network to be the most helpful for me. It was short enough that I didn't get exhausted and long enough to include several year speakers, mostly oncs and other medical professionals. We were also encouraged to spend time with each other and there was time for that. They also had us stand when we were assembled early on, in response to how long we had been living with MBC. There were some 20 year survivors there and that was sooo hopeful. I think it was there that I heard how unhelpful and unrealistic, for us as individuals, survival stats are! The numbers are brought down alot by those who were very far along when first diagnosed, those with highly aggressive and fast growing cancer cells, and those who, sadly, for any reason cannot follow a treatment plan.
Somewhere along the line, I realized that this was going to be a long term thing and that if I got all worried over every little change, I would ruin what ever time I have left! So when tests approached, instead of praying that all would be good, I started praying that anything that needs to be known would be seen. That is somewhat about control, at least for me. I have no direct control over cancer cells. What I do have control over is finding an onc I trust, asking questions, following a treatment plan, asking for help when I need it (a biggie for me!!!) and finding things that I enjoy, that give my life meaning and focusing more on those larger things than each little blip with cancer.
Another thing that has helped me is really coming to terms with both death and the dying process. Those things do not scare me. I've been fortunate to have had quite a few opportunities to spend time with people during the last week, day or even moments before they die and what I have seen has not been scary at all. I have seen people die from cancer and they have been comfortable and not been suffering.
Something I have also done is follow a "rule" of if I even think of calling the doctor or going to the ER, I do it. Better a tad too often than not quite often enough. (It is also helpful to me to write notes like this. Helps me organize my thoughts and, hopefully, touch someone else in a way that is helpful)
I hope you will do well for long time, too. Hang in there and know that you have alot of sisters-in-mbc here who understand what this is like!
17 years!! Thank God for you!
Tia,So sorry you are feeling down, but we all feel that way from time to time. I think it is just a part of the emotional struggle that naturally comes with MBC.
You are so young and I think it's harder for younger women.
My advice is treasure every moment with your child. Children are a gift to be cherished and nurtured. I have only one also and she has been my strength through this damn cancer.
I find I am a different person since I received my cancer dx. I struggle to find myself again. I was a happy go lucky, successful and confident, and adventurous person. My struggle is with getting back to her and be better able to deal with the anxiety and fear of the unknown that comes with MBC. I am working with a counselor to help me with this.
No one can navigate this mess alone. Reach out for help in addition to posting on this board. We are here for each other and we understand!
I wish you strength and peace as you deal with this Rollercoaster.
Love,
Marianne
Hi Kimberly,I also have Mets widespread to my bones. Recent scan showed one spot in liver. I am on my fifth line of treatment Xeloda. The doctor is saying that mbc is a chronic disease now and it’s not curable but treatable. But I hope that the cure will be found. I live with hope. Read and watch our postings about ErSO and you will live with hope as well. It’s a very promising compound that showed 99/100% success on animals, The big pharma Bayer got exclusive rights on global production. It may go to human trials soon. Search ErSO, read postings and you will live with hope.
Good luck!!
Marina
I am so sorry that you are struggling so much. This is a difficult disease. Even with all of the treatments available to us, it is sad to know that there is no cure at the moment. When I was first diagnosed last November, I had a hard time accepting the diagnosis. I was angry at God, angry at my doctors and angry at myself. I, too, felt sorry for myself. I struggled with the knowledge that I might not be around to see my son get married or my daughter have grandchildren. When my doctors told me I could still have some years to be around and have a quality of life, I did not really believe them. But I decided I needed to be proactive about my disease. I was not just going to rely on the medications. I asked my doctor for a recommendation for a nutritionist and a therapist and have been in active communication with both of them. I found a women who has the gift of healing touch who does remote healing sessions with me. I started eating healthier, exercising more and trying to live one day at a time. I found a good meditation CD to listen to and started doing some deep breathing exercises. I listen to talks and read books about healing cancer and try to adopt some of those ideas. I am 66 and have adult children, so that makes it a bit easier than having a young child. Also, I live in a golf course community where there are several women who are currently dealing with Stage IV cancers or have survived them and we talk and try to inspire each other. When I wake up each morning I thank God for one more day and ask Him to help me make the best day possible. I believe that no one knows what the future holds, even people who are perfectly healthy today, so I try not to worry as much. Everyone handles this diagnosis differently. Do not feel bad that you are feeling sorry for yourself, it is part of the grief process after diagnosis. I will keep you in my prayers and hope that you can find strength and faith to keep fighting. Sending you some hugs.
I was first diagnosed at 35 with TNBC. Chemotherapy brought on a miscarriage, an early menopause and dashed all hopes of ever having any children. Now, at 62, I still mourn for what could have been. I did become very depressed and am still on anti-depressants which do help keep me more positive.
I got DCIS ER+ when I was 51 and then a few months ago, MSBC widespread in bones, chest nodes, pleura and lungs. Also, collapsed vertebra in spine.
They have been unable to determine receptor status and so are assuming it is ER+ until they can obtain a better sample.
Not knowing if I'm on the right treatment is frightening the life out of me, but I look at it as trying to stay alive and healthy for as long as possible as I'm sure there are going to be some really advanced treatments coming soon. There have been some excellent advances in the treatment of many cancers and this seems to be accelerating lately.
So, I'm like the author of the previous post; I listen to talks on Youtube and read books about healing. I've been particularly interested in the concept of 'spontaneous remissions' and how the body can heal itself. I've researched diet and supplements and the benefits of meditation and relaxation techniques. There's some good stuff onYoutube. I feel that by doing these things, I have some control over the disease and I'm doing what I can to supplement the treatment I'm on.
I sit reading the books on my Kindle while travelling to the hospital and waiting for my appointments, even while having my zometa infusions. while getting ready in the morning, I listen to a TED talk on Youtube or something. Anything which gives me hope.
I've also found going out for walks in the natural environment, such as woodland, soothing.
So hang on in there. If we can keep ourselves going, there will be a treatment soon which will be a game-changer. Keep healthy and active until then!
So glad that you have one… but I understand.. I had wanted one more too. For me facing the growing pain is the hardest. But I am trying to not let it wreck the here and now. But big fear of pain in the future.
Friday first scan since MBC treatment...
MBC Medicare Drug Plan
Thanks for responding! - MBC and work/life changes
