Newly Diagnosed
I’ve recently been diagnosed with Stage IV and am a nervous wreck. I’m still in the process of getting scans and a biopsy to determine the extent of it. I can’t seem to cope with the anxiety. How have people here dealt with the anxiety? I’m not sure how to reach some level of acceptance so as to carry on and do what I need to do
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Akj,
You've come to the right place: everyone here knows how you feel. The anxiety is nearly unbearable at first, but it will lessen once you know the lay of the land and have a treatment plan in place. In the meantime, you can ask your doctor for something to address it so you can function.
You will find understanding and support on this forum. Use Dr. Google with caution; visit only authoritative sources. And never, ever believe statistics. Medicine is charging ahead in our area, And any data old enough to be published is already out of date.
Tina
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Acceptance eventually comes, but you can't rush it. Its not like a week to 'snap out of it', it will take time, possibly therapy work with a mental health professional, and moving from the acute diagnostic phase to a maintenance phase where you are on a stable treatment and can learn to 'trust' your body. We all have different coping mechanisms, but you are in the right place to learn from all of us ladies further down the path!
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Thanks for the words of encouragement. My doctor prescribed Busbar for anxiety but it takes a couple weeks to take effect. I’m dreading telling certain friends and family. Liver biopsy tomorrow.
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akj, sorry to hear of the stage iv diagnosis. Tina’s right, we know how you feel. I had severe anxiety hit me six months into the diagnosis in 2011. No amount of meditation, exercise or deep breathing was helping. At first I thought I was depressed but eventually sorted out that I had anxiety. My pcp had prescribed different antidepressants and then when I recognized and told him of the anxiety, I was instead given a prescription for Buspar (I think that’s the one you are taking too). I continue to take it; it gave me my life back. I take a low dose but I know up to 60 mg a day can be prescribed, so if you don’t think you’re benefitting from the dose you’re on, ask for an adjustment. And please do advocate for yourself.
Like Tina said, when you get a treatment plan, it will help. In the meantime, see if you can find things to get immersed in. Things like cleaning out a closet, taking a walk or a drive, read a really good book, binge-watching something on Netflix, ect. It may not keep the anxiety away all day, but it can give you mental health breaks that may help. I remember when I was first diagnosed, my husband had just got a new iPad and I borrowed it every chance I got to play a game on it that I could get totally engrossed in for an hour or so. Let me tell you, it really helped! Btw, I still can feel anxiety try to creep up on me, but I’ve learned to get busy with something and it goes away.
You may find deep breathing exercises to help. While I didn’t when first diagnosed, three years ago after I got Covid, I looked up deep breathing exercises on YouTube to increase my lung capacity to help me recover, not for anxiety. In doing the exercises daily, I found it had a calming effect on me as well as helping me breathe better.
Be very kind and gentle to yourself and pamper yourself any chance you get. I wish you all the best.
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Thanks divinemrsm. I started telling friends and weirdly it made me feel a little better. No need to keep up a pretense. I do yoga every day, tale walks, and obsess over Words With Friends. Looks like you’ve been on a long road
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akj, It’s been challenging, but looking back over the past 12 years since diagnosis, I’ve managed to live a full life and continue to grow, change, learn. Yes, a part of me thinks it’s so unfair having mbc. Another part is grateful I’ve had many years to experience some of the best times of my life that include some big moments and many smaller, meaningful moments as well.
I’m glad you find it helpful to tell your friends what you’re going through, and that you have some outlets to help you decompress. Trying new things and learning new things has helped me a lot. I began doing genealogy after diagnosis. I learned to play the harmonica. I started line dance class. I also began creating better boundaries in my life just a couple years ago and it’s been an eye opener to me how conditioned I was to put myself last in all things. Be good to yourself!
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akj I am right there with you. I was diagnosed stage IV 2 1/2 years ago. I was stunned! I was anxious and I couldn’t even begin to fathom how to get through the next hour, day or week. As someone above said you eventually get used to the idea. I started on an AI and although I feared side effects, I eventually realized they were tolerable. I hated the frequent visits to my oncologist. After 2 1/2 years I find my AI is no longer working and have had to move on to Faslodex injections and Ibrance. That was another big bump on the anxiety road. I had been able to live in a bit of denial for awhile and suddenly reality smacked me right in the face. How am I coping now? At first not well, but now that I have had my loading doses of Faslodex and one course of Ibrance, I am learning the routine. As it turns out my blood counts are pretty low, so I have to wait for them to bounce back a bit. I take solace in knowing I am being very carefully monitored. The people here have helped guide me through some,rough waters, and I have learned more and more to live in the moment. Take all the good and comfort you can find in a day and immerse yourself in it, it helps bide the time until acceptance comes. Many people live long full lives with what I like to consider this chronic disease. Science is making progress every day and the treatments we have now are tolerable. We are here for you
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Pathology results show hormone positive cancer in my liver. Bone scan clear. Brain scan next week. Does anyone here have an idea about what kinds of treatment I may be looking at? Mets to lungs and liver. No symptoms so far
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I would think Kisqali + Faslodex with a bone strengthener topper of Prolia or Xgeva.
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akj, I'm so sorry about your Stage IV diagnosis. It is, indeed, mind-blowing. I just wanted to share one piece of "advice." If you get radiation this time, and they call it "palliative", don't think it's the same as "hospice." It simply means that it's meant to help with symptoms as opposed to having a curative intent. When I heard that word, I was about to put a rush-order on my coffin. For once, Dr. Google was kind to me when I looked up that word. (I've fired him more than once!)
I wish you the very best.
(((hugs)))
Carol
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Thanks Sunshine 99. Turns out I have brain mets too. The ultimate insult! I started Femara and am waiting for approval from insurance to start Verzenio. I have a new oncologist that I think I love. She referred me to radiation oncology and to palliative care. It all sucks so bad but at least I know the complete picture now and have a plan. That does make me feel a little better.
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akj, that does, indeed, suck! I hope you get insurance approval soon.
Have you looked at some of the other Stage IV forums? There is a thread that is open to all called, "My Husband, My Life, My Cancer" and there is a woman named "mara" who has had brain mets for quite a while. I don't remember how long, but I find it oddly comforting to know that brain mets is not an immediate death sentence.
I have a blog and I talk about what it's like to get a Stage IV diagnosis and all that goes with it. I try to inject humor into it. It's not a Debbie-Downer blog and you might enjoy reading it. No pressure, though. There's nothing in it for me if you do decide to read it.
(((hugs)))
Carol
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akj -
As I tell many others, your diagnosis is not your life plan. Many new medicines come on the market every day. In 2008 I was diagnosed denovo and was told I didn't have much chance to live. From the beginning herceptin (new) and anastrazole/arimedex (for hormones) have kept me alive. I still receive herceptin every three weeks to this day. Anastrazole 1 pill a day.
About 5 years ago, I pre-planned and pre-paid my funeral, so my adult kids wouldn't have to do anything. I even have a gravestone at my plot with my name on it.
As you can see, I don't believe I am jinxing myself by talking about it. If I die tomorrow, I would still have a long haul behind me. Can't complain.
Keep reaching out to others on this board. They are a great group and good for your mental well-being and for knowledge. P.S. I also started Prozac some years ago.
Love,
Anna
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thanks amontro. It’s just so hard to get us
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akj, are you HER2 low by chance? If so, Enhertu has been working well on brain mets for many of us. Brain Mets definitely suck but after 5 years dealing with them, I no longer look at it as the beginning of the end, just more treatments. I wish you excellent luck!
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illiemae, I’m her2 negative, er pr positive. I’m going to start Verzenio next week. I saw that you’ve had brain radiation? How was it? I’m meeting with radiation oncology th
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akj, I’ve had it 6 times over the last 5 years, both with mesh mask and head frame. The mesh is claustrophobic but not bad. The frame is horrific for me because I hate needles and they inject numbing meds into your forehead, then screw the frame in place. Radiation itself is a breeze, it’s about 20 minutes and they play any music you request. As much as I hate the frame, once it’s on, everything is fine, just feels a bit awkward and heavy. This is the frame.
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Thanks illimae. Just got back from the rads doc. My brain mets are tiny, numerous and diffuse. I’m not a candidate for any kind of focused radiation, they’d have to do whole brain radiation. My brain mets are not causing symptoms so I’m going to hope the Verzenio works on them. Follow up scan in two months. Did you have side effects from the rads
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I didn’t but I only had 1 short session each time. WBR is different and does usually include more SE’s, nausea and fatigue being pretty standard. Check out the Brain Mets sisters thread, Mara and several others have been through it. I’m not familiar with verzenio but I do hope it knocks those buggers back.
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akj,
I encourage to you to check out the Abemaciclib Verzenio for Stage IV thread. Read through the long but very informative introduction and especially absorb the comments by researcher Constantine Kaniklidis. Constantine's advice on how to management the diarrhea is very good. As are the many tips from women who have been on the treatment. I was told that Verzenio is especially effective for liver mets. I got about 2 years from Verzenio, with no progression, before deciding to quit because of side effects. But you'll read in the comments that many women are successful in managing the side effects. And know that you can ask your MO for a dose reduction to help reduce side effects if needed. The best to you. I hope you get a good long run.
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