Worried about possible bone metastasis

TDF · October 2014

I hope I'm posting in the right place, please forgive me if I'm not. I was diagnosed with invasive lobular cancer with tubulolobular characteristics in 2006 and underwent lumpectomy, mastectomy and dose-dense chemo. A few months after the chemo ended, I developed spinal pain and was diagnosed with degenerative disc disease, likely caused by the Neulasta which had given me horrendous bone pain. I eventually had to have a spinal decompression/fusion and a titanium cage was implanted. In 2010, I lost my job due to illness, and hence lost my health insurance as well. I only just got insurance again this year thanks to the Affordable Healthcare Act, so I hadn't been able to follow up with an oncologist or get a mammogram or MRI or anything since 2010.

Several months ago, I suddenly started to get some pain in my right ribcage and severe pain in my hips at night that my orthopedist thought was nerve pain from my back but it's unlike any other nerve pain I've had before, too persistent and gnawing, it feels like the bone-deep pain the Neulasta gave me - but I couldn't afford an MRI at the time either.

Just last week, I developed severe nausea and vomiting - every 10-15 minutes - and had to be taken to the ER by ambulance, where I was admitted. The admitting doctor said my blood tests showed I was anemic and had high blood calcium before they super hydrated me with IV fluids, and that I needed to follow up with my primary doctor right away because he was worried my breast cancer had metastasized to my bones. I was discharged on Saturday and saw my primary doctor Tuesday. He re-ran blood tests to get current numbers and said I was still slightly anemic and my blood calcium was on the high side of normal but he thought it could still be slightly diluted from all the fluids they'd given me. He also is worried about the possibility of bone metastasis and wants me to see an oncologist ASAP, referring me to the North Shore Hematology Oncology Associates group. They're getting me in this afternoon. I'm terrified and can't sleep, I don't know what I might be facing, what tests I'll have to have, what treatment, etc. Any advice or suggestions or recommendations anyone can give would really be appreciated, thank you.

Moderators · October 2014

We welcome you here, and hope for a clean bill of cancer health for you!! You are in a wonderful community who understands your anxieties. Is someone able to accompany you today? Please keep us posted. We're all here for you!

((((hugs))))

The Mods

TDF · October 2014

Thank you. I have a great network of family and friends just a phone call away, and I'm living with my parents. Unfortunately, they're both elderly and in poor health, so I don't want them to come with me. I also have a very good friend who's offered to drive out to go with me, but she's about a 3 hour drive away and I won't ask her to make that trip just yet. If it turns out that it is metastasis and I have to go through treatment again, that may change. I tend to worry about worrying people too much, if that makes sense, so it would probably be more stressful for me to have someone there, at least at this stage of the game. Just very worried and afraid that, given all the symptoms, that it has spread to my bones. It sounds morbid, but I'd almost - ALMOST - rather just have the diagnosis already so I could get on with doing whatever I have to do, rather than playing the waiting game. This feeling of limbo is the worst.

Anonymous · October 2014

I'm like you - I don't really want anyone around while I go through "stuff." I tried desperately to take a cab to my mastectomy (knowing I probably couldn't drive home), but my sister showed up anyway. While waiting at the hospital, my other siblings showed up! They don't realize we're not all alike - it actually made it harder for me to have them there. But...at least I know it was because they cared, even if they didn't understand. As usual, I felt I was babysitting them (though I'm the youngest). I don't want people to see me go through labor or surgery or sickness. However, when we do need them, it's great to know we have a system who will support us.

For now, you've come here to get some fear off your chest "anonymously," and I hope it works for you. At least you're having your tests quickly, that's got to help just a tiny bit, right? So you hang tough today and promise yourself a treat of some sort afterward - no matter what results you get. A long walk if you have good weather, ice cream, a new song on your ITunes account, a pair of earrings, just sitting and watching people and wondering about their stories. And be sure to come back and let us know how it all goes.

Best to ya.

pajim · October 2014

TDF, I hope your appointment went well. You really should take someone with you when you're this stressed. It's hard to hear or remember everything the doctor says.

The first step in deciding whether you DO have mets would be some kind of scan, either CT or PET or bone scan.

IF they actually find them (which is not a given here), you will be in treatment for the rest of your life. However, the goals of treatment are different. You want to get the best quality of life for as long as possible. If you're ER+ they'll start you on a hormonal. You wouldn't think little pills like that could keep cancer at bay but they do. For a good long while.

There's a thread on the Stage IV board titled "Life does not end with a Stage IV diagnosis -- REALLY". You might feel better if you were to read through that.

https://community.breastcancer.org/forum/8/topic/818931?page=9#post_4104766

Sending you hugs, and hoping all the tests come back negative. . .

Pam

TDF · October 2014

I saw the oncologist and the good news is that I really like both him and the staff from the nurses to the medical receptionist - they were all very kind, very personable and very thorough. One and all, they looked me in the eye when speaking with me and didn't try to rush me in and out like some medical offices do, thank goodness.

The bad news is that, after reviewing my history and my current symptoms (abnormal blood test results, increasing pain in hip and shoulder, and frequent night sweats) and giving me a complete physical examination, the oncologist is concerned that it may be bone metastasis. So he's ordered a battery of tests - blood tests, 24-hour urine test, mammogram, bone scan of my whole body, and CT scans of head, chest, abdomen, and pelvis with both IV and oral contrast. If any of the imaging tests show anything suspicious, he'll then be scheduling a CT-guided needle biopsy of the bone.

On the one hand, I'm terrified that I didn't get "I don't think there's anything to worry about, let's just wait and see". On the other hand, I want the tests done already and someone to tell me what's going on. The blood tests they took in the office, and the urine test I'm in the middle of collection for and will give to the laboratory tomorrow. The mammogram I can't schedule until I get my old films in the mail - they were supposedly mailed yesterday, so I'm hoping I'll get them Monday. The bone scan is scheduled at the hospital for Tuesday, and the series of CT scans are scheduled at the hospital for Wednesday.

I'm terrified of what they might find. My previous bone scan 4 years ago had shown some uptake in my hips but at that time they thought it was likely just arthritis since I didn't have any other symptoms then. So I'm pretty sure they're going to see something this time, even if I don't know what. So it sounds like I'll probably have to at least have the bone biopsy and since I've never had one and don't know what it entails, I'm really scared. Both of how much it might hurt and of what the results might be. If anyone can let me know what their experiences with bone biopsy were, I'd really appreciate it. I'd much rather know in advance that it's likely to be painful than be blind-sided with the pain during the actual biopsy. Local anesthesia doesn't work well for me (it only numbs the surface and leaves the deeper nerves fully unanesthetized), so if I know in advance what's what, I can speak with the doctors and make arrangements to work around that. Any advice, suggestions, information would be greatly appreciated, thanks.

Worried about possible bone metastasis

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