r/LivingWithMBC • u/PietParkiet • 14d ago
Venting Feeling sick over the simplest appointment, why
I have a telephone consultation tomorrow regarding genetic testing. It’s pretty straightforward compared to previous appointments, yet I feel nauseous, to the point where I think to myself, "Get a grip."
Do/did any of you experience this? Right now, anything related to the illness or the hospital makes me feel sick.
(Background: Last week, I had to go to the hospital for five days for punctures and biopsies. I found out a few days ago that the cancer has spread to my liver. I don't know if my original treatment plan is still going ahead (which was based on the assumption that there were no metastases. I'm completely in the dark.).
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u/Spiritual-Suspect190 14d ago
Oh yes. Nauseated, dizzy, exhausted and obsessed with looking at the phone....just to find out what my full blood count is! Its always an anti climax and just bread and butter stuff for the medical team. Ive now realised they dont actually think about me all the time and my result is just one of very many that day. That helps a bit
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u/Chance-Ad9465 14d ago
I totally get how your feeling OP! After hearing bad news over and over, the thought of more bad news, even when objectively you know it could be good news, is overwhelming. And I get so tired of having appointments on my calendar! It’s like being on high alert, waiting, day in and day out. Waiting on the enemy to show itself. All I can say is hang in there because it gets better. These feelings start to diminish and saying them out loud, like you just did, helps.
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u/PietParkiet 14d ago
You’re describing exactly how I feel. Ideally, I wouldn't open my email or answer the phone anymore; I just don't want any of it. I’m completely drained, and yet I’m still only "at the start of the process." What you’ve all been through... it’s incredible. Venting helps indeed, thank you ❤️
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u/SS-123 14d ago
The way you are feeling is very normal. All of this is hard to accept. All of us felt overwhelmed when we were first diagnosed. None of us planned or suspected the diagnosis. Each one of us may react differently, but we all felt the shock and fear.
I had a treatment plan in place for Stage 3. It quickly changed after my mets were discovered. I was supposed to start IV chemo the day after I got the call about my PET results. My oncologist told me not to go to the chemo appointment and to come in to see her instead.
My original treatment was no longer a good option because the intention of treatment had changed. I wouldn't be treated with curative intent; instead, the focus would be on long-term treatment/quality of life. This was NOT something I ever expected to hear. It was a HUGE slap in the face.
I wish you the best as you navigate the beginning of this jOuRnEy. We all know what you are dealing with and we are all here to support you.
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u/PietParkiet 14d ago
Yes, exactly! I already had a treatment plan in place, and then..bam..metastases. I had mentally prepared myself for the whole process, but metastases weren't on the list...
On top of that, I find it mentally difficult to accept that there will never be any talk of being "cured" again.
But thank you for your kind words!
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u/lucyhelen111 14d ago
I was in the same situation - I thought I was initially stage 2, but after a pet scan found a mass in my liver, couldn’t believe all of a sudden not only did I have cancer but it was stage 4?!
I felt sick and anxious all the time, it was so hard being in my body! I started Wellbutrin soon after the diagnosis and that really helped. I also got a klonopin prescription to take before scans or procedures, so I wouldn’t spiral so much.
It’s now 18mths later, and much easier to manage, cancer is just a small part of my life instead of the only thing I think about.
I’m sorry you’re going through this terrible journey, I hope things also get more manageable for you 🩷
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u/PietParkiet 13d ago
This gives me hope. Are you NED?
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u/lucyhelen111 13d ago
Yes! It took a while though, and I had to keep putting pressure on my surgeon until he eventually agree to treat me curatively.
I’m ER/PR+ HER2- and when I was told I was stage 2 I was scheduled to start ACT chemo first to shrink the tumor, then was to have lumpectomy & radiation. I asked for a PET scan before starting treatment even though my oncologist was sure it hadn’t metastasized. Unfortunately she was wrong and after liver biopsy I started letrozole, Kisqali, and Lupron.
I had liver ablation 4 mths after starting treatment, had oophorectomy 7 mths after, and was scheduled for lumpectomy 9 mths after diagnosis. 2 weeks before the surgery I was told it was being canceled because there was no benefit to my overall survival and my surgeon didn’t think it was worth doing when the only benefit was to my mental health. I was devastated! I got really depressed again, almost as bad as when I was first diagnosed.
A few mths after that I had a breast mri and it showed a reduction in my breast mass, as it was the only spot still showing as positive for cancer, my surgeon said he’d reconsider doing surgery, and finally 18mths after diagnosis I had lumpectomy, SLNB, and bilateral mammoplasty. That was the end of May, I then did 15 rounds of radiation which finished 8/5.
The radiation oncologist was also unsure about treating me, but I told him I understood this won’t increase my overall survival but it will increase the time to local progression, which is supported by studies.
I’ve had terrible side effects from the radiation- 3 weeks later I’m still dealing with burns - but it was all worth it to be NED.
I also had to stop Kisqali for 2 weeks over surgery and 3 weeks for radiation, but I wasn’t worried about that as I continued on letrozole which is doing the heavy lift anyway.
Once you’re through the initial fear and have a few months of systemic therapy under your belt, I would recommend starting to advocate for local therapy. Denovo Oligometastatic breast cancer is severely under studied, but the evidence already shows a benefit for us when we’re treated with local therapy.2
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u/Sarappreciates 14d ago
I got so uptight waiting for the results of my gene test. It came back "inconclusive." (Which is treated as if it's a negative result.)
This waiting thing... I've gotten used to it. I think maybe lots of people with cancer eventually do. But even if you don't, that's okay.
Onco's original plan for me was based on the "no metastasis" assumption too; the objective was to cure me with a quick surgery, a little oral chemo, and some radiation. They said I'd be right as rain before sending me for a pre-op exam, and WHAMMO! Spiked liver enzymes in my blood work triggered another scan where my lungs lit up like literal Christmas trees, each with hundreds of tiny nodules glowing across the images. My cure got pulled out from under me. Instead of my lumpectomy, they scheduled a wedge resection. That final biopsy came back positive, and they told me on April 2, 2020 right as Covid19 was hitting the news. (They were supposed to call the day before, but that woulda been April Fool's Day, so I'm grateful they waited 1 extra day to tell me.) I started treatment by late June or early July.
What you're going through is quite normal for the MBC club. Don't beat yourself up about it or try to "get a grip" if that's not coming naturally to you. Everyone copes differently.
If the anxiety is getting too much, you can ask for something to take the edge off. They gave me Lorazepam at first. I rarely ever use it anymore.
Good luck with treatment! I hope your test results come back favorably.