Just diagnosed.. freaking out that it’s spread/ back pain

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Rachelmae77
Rachelmae77 Member Posts: 5
edited November 2020 in Just Diagnosed

hey ladies,

Well here I am joining all of you warriors. I was diagnosed last week at 43 with stage 3a breast cancer. My tumor is 6mm, at least one node and it's grade 3. I'm estrogen and progesterone positive and her2-. I don't have a treatment plan yet. They are waiting until I have my pet scan on the 14th due to the aggressiveness of my tumor and the extreme tailbone pain Ive been having for over a month. It's on my left side and sometimes comes around my hip. I have like burning down the front of my things and soreness in my bum.

I'm terrified it's already spread to my bone or somewhere else. But Ive had an MRI and a CT, both came back clear except degenerative disc in L4/L5. Blood tests also normal.

Am I just freaking out? Would a ct and mri usually show mets? If it's not that, why else would I have so much back pain all of the sudden?

I feel like I can face stage 3 but stage 4 is just so terrifying. I have babies. All in all I'm just not ok. It's like once you get the worst case scenario, you can't help but keep thinking it will happen again.

I just want to wake up from this nightmare. I need this pet scan to come back clear.

Any advice or encouragement would be so appreciated.

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  • Redkitty815
    Redkitty815 Member Posts: 44
    edited November 2020

    Rachelmae, I am so so sorry that you are here. I was diagnosed with stage 2B at 43 just about a year ago. Also grade 3, also in at least one node and I was also terrified that it was everywhere.

    You are in the very very hardest time right now. My best advice is to not cross bridges before you come to them. It’s so easy to go straight to worst case scenario, but there are lots of things besides bone mets that cause back pain—like the disc degeneration of which you have evidence. You should see if your hospital has a social worker or other mental health resources available for cancer patients—it does help. Take Ativan if you need it to get through. Make time to exercise everyday...it will help you immeasurably through treatment, both mentally and physically. I would also suggest looking at the stage 3 survivor boards, 5, 10 and 15 years out. They are very inspiring.

    It gets easier with a treatment plan because you can do something. It is never easy, but it gets better. You can do this!

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  • Rachelmae77
    Rachelmae77 Member Posts: 5
    edited November 2020

    thank you so much RedKitty! That is great advice. I’m trying so hard to stay in the now but goodness gracious it’s hard right now. It gives me great encouragement that you felt the same and are doing well.

    I actually asked for anxiety medication to get me through this time and and my cancer care coordinator said no! She said I need to “get control of rachel”. Like seriously? If you can’t get anti anxiety meds when you’ve just been diagnosed with stage 3 cancer when the heck can you?

    the 14th sounds a million years away. I’ll check out the other boards for inspiration. Thank you.

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  • LaughingGull
    LaughingGull Member Posts: 560
    edited November 2020

    Rachel, sorry you are here, I second every word of what Redkitty said. That care coordinator...what's wrong with her? She sounds nuts. Somebody should file a complaint against her. Give me her number and I will personally call her and scold her. Unbelievable. Can you call another doctor, your primary care doctor, your oncologist? ANYBODY will give you anxiety medication, in your situation! There must be a psychiatrist in the hospital where they treat you. I would escalate the issue immediately and get the pills. Your anxiety will go down when you have a plan in place, you can wean off pills when you feel better. Hang in there and best of luck with that PET scan

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited November 2020

    That care coordinator sucks. Call your reg doc or oncologist.

    Hugs to you . It’s perfectly normal the time waiting for your upcoming the PET is filled with anxiety .

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    I agree with the others about self-care tips, including talking with a doc about anti-anxiety medications. It makes sense you have anxiety and other feelings. It also makes sense to do what you can, behaviorally, to help decrease that and anxiety-reduction meds are a reasonable part of that. No excuse for the cancer care coordinator - cruel and inappropriate comments by her... Some docs worry about dependence with some of the anti-anxiety meds (Ativan, Klonopin, Xanax)- soon into your discussion mention openness to taking prn (as needed), calling if and when you need refills and the option of taking a med that does not create dependence (Buspar and Vistaril). This really should not be an issue with what you are dealing with. If it is I would find another doc....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2020

    Was the MRI of your breast or your lumbar spine? Does laying down relieve the pain or is it worse at night?


    For me the bone scan confirmed the mets although the ct picked up something. However, I had had progressive worsening pain over months from what I thought was yet another sports injury as I already had degeneration/stenosis in my back at L5/S1, l4/l5 and starting at l3/l4. This time it turned out to be mets in my sacrum, but also L5, L4, L3 only. The lumbar mets did not and do not cause me difficulty. Towards the end of diagnosis I could barely lift my affected leg and felt sick to my stomach a lot.

    I know it's really scary to potentially be facing stage 4, and have back pain at the same time, but if it came on that suddenly and some of the other scans are already clear then it could very well be something else. I'd just like to warn, though, that if at any point you have incontinence or numbness in the genital area to get to a hospital at once as that can be a sign of cauda equina which needs immediate attention to decompress the spinal cord (not cancer related, not common but good to be aware)
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  • Rachelmae77
    Rachelmae77 Member Posts: 5
    edited November 2020

    Hi Sondra, thank you for your response. Everyone here is so generous to help. They did an mri of my whole spine as well as a ct of my whole spine and they both showed nothing suspicious. Except the degenerative disc disease on L4/L5.

    The pain is bad but not unbearable. Its pretty consistent. It hurts when I move and when I lie down. It hurts the most when I sit. If I bend forward or to the side I get a stabbing pain on the left side of the tailbone. I will pay attention for the numbness or incontinence... so far none of that. I’m so sorry you are going through this. It’s so terrifying. I guess what really worries me is that there really is no reason for me to have this pain. I haven’t done anything to cause injury and I’ve never had these issues before.

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  • Mountainlover
    Mountainlover Member Posts: 89
    edited November 2020

    Rachel, I went through the shock of a breast cancer diagnosis only a few months ago and I can confirm , like others have already, that the first weeks are the worst! Things got so much easier for me after the surgery. I hope you get clarity very soon. My GP actually offered to give me anti anxiety meds without me asking! That's when I went to see him a few days after being diagnosed to get his views on alternative hospitals and surgical approaches. He gave me sleeping meds too which I didn't need in the end. He kept saying that one should not hesitate to take such meds under these circumstances and indeed, I had no problems weaning from xanax (and opioids, too) a couple of weeks after surgery. I hope you get all the support you deserve as soon as possible.

    All the best

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  • illimae
    illimae Member Posts: 5,710
    edited November 2020

    The beginning sucks but you never know with cancer. I was diagnosed stage IV from the get go at 41 with a hip bone met (no pain there, ever), it was a total shock but visible one CT and bone scan. I also had a sore thumb, I was convinced it spread there too, turns out it was how I was holding the steering wheel of a new car, lol. We get a little crazy early on but things do settle once you get a plan. Good luck.

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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited November 2020

    Hello Rachel

    I'm so sorry you're going through this. It could just be that the degeneration in your lumbar region is just that and not related to cancer so don't despair.

    Nine years ago I found a lump in my right breast and it turned out to be a grade 3 tumour. It responded very well to chemotherapy.

    Why not yours too?

    Hoping for the best for you.

    Alice


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  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited November 2020

    Sheesh, Rachel! What kind of "care" coordinator tells you to basically "suck it up, buttercup"? It was my PCP who first gave me the news that my cancer had returned and she asked me if I needed something. Very kind of her.

    I agree with the others. Call your PCP or your MO and ask about getting something to help with the anxiety.

    Let us know how you are doing.

    (((hugs)))

    Carol

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  • msphil
    msphil Member Posts: 1,536
    edited November 2020

    hello sweetie i was diagnosed at 42yrs old while preparing for our 2nd marriages. Had the same thought bout it spread. Got my cry out with my mom fiance and best friend then decided to fight the good fight with Hope Positive thoughts. Yes i had my moments of doubt but got back onto Hope. I am this yr a 26yr Survivor Praise God and also our 26 yr anniversary. msphil idc stage2 0/3 nodes 3mo chemo before and after L mast got married then 7wks rads and 5yrs on Tamoxifen. Hold on.

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  • Rachelmae77
    Rachelmae77 Member Posts: 5
    edited November 2020

    Thank you ladies so much. You really got me through the last few days even though I was quiet. It’s crazy to think that with all the hell ahead this time is the worst. But it makes sense as the veil of certainty and any sense of control has been lifted in an instance. I feel like I am grieving the person I will never be again and the life I designed that will never come to be. I know both may be better in the end but the grief is necessary I suppose.

    I will keep you updated on the pet on Saturday. I’m trying to take solace in the fact that the ct and mri are clear until then.

    All that being said, I went to my primary care and met my surgeon today and neither of them would give a girl a xanex. Freaking twenty year olds stressed out about their job at the Starbucks get more drugs than me. It’s insane. I’m about to choke someone out. 😂🤦🏻♀️🤷🏻♀️

    Xoxoxo

    Can’t thank you enough.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2020

    Rachelmae, I had the same thing happen to me. I had ovarian cancer and was very very sick with huge ascites, a PE and surgery that cut me from my pubis almost to my sternum. Same year, about the time I was finally starting to feel better, they found LCIS on my breast biopsy and thought I might have breast cancer. I told my gyn onc that I couldn’t eat or sleep I was so anxious. Pretty much got “well you know drugs for that tend to be addictive”If they wouldn’t give me any for a possible second cancer diagnosis in less than a year I guess they never will...

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  • Rachelmae77
    Rachelmae77 Member Posts: 5
    edited November 2020

    that’s so ridiculous Melissa. Seriously those drugs were created for just this moment. We are grown ass women. Not drug addicts on the streets. I can’t even imagine going through all of that at the same time. You must have been beside yourself.

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