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Possible Bone Mets——how do I prepare?

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At this point….I'm trying to stay positive but I will not be shocked if it has spread to my bones, specifically lower back area. I CAN NOT and WILL NOT see a doctor until January 7th, the appointment has been made for a few weeks. I have no insurance until Jan 1st and my Critical Care coverage does not start until the 1st as well. I WILL NOT bankrupt my family for a few weeks. So please understand….I fully intend to see my doctor—but not immediately. So looking for info in the meantime—being told to see someone now is not an option.

That said….if it turns out not to be—great. But if it is….is there something I can be doing now? I keep reading about Vit C…maybe I should start taking some? Thoughts? Something else?

Also….I thought I was educated…but the more I look at met treatments the more confused I am. Any simple links you could share?

What questions/tests should I ensure I get going at my appointment? I have a "new" Onco…..I have only met her once. My first Onco that I loved changed cancer focuses. She seemed aggressive so I stayed with her as I didn't have to beg for scans every 6 months. So I think she will jump on this, but want to know for sure what I should expect or request.

Just waiting is not helpful on keeping my brain straight—I need to be doing something in the meantime.

TIA

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Comments

  • alicebastable
    alicebastable Member Posts: 1,946
    edited December 2019
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    You had low stage and medium grade cancer, why do you think you have bone mets? Hormonal therapy can cause all kinds of aches and pains. Try to do a lot of fun things before your appointment to keep your head clear.

  • rah2464
    rah2464 Member Posts: 1,192
    edited December 2019
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    I echo what Alice says. I had significant pain in my left hip (yes, cancer side) that we watched for 4-5 months. Then at one Onc visit, she felt my remaining lymph nodes were possibly swollen. That triggered an US, and I then said well lets check those bones then if we are going down this path. Fortunately all turned out well, no evidence of disease but that hip pain continued for another two months until I received a refill of Tamox from another manufacturer. I am pretty tough, but my hip pain was significant for a long period of time. These anti hormonals can definitely do a number. So here is hoping that your pain is from the meds. You are wise to get it checked out. Good grief we sure do need a medication that isn't so disrupting.

  • flashlight
    flashlight Member Posts: 311
    edited December 2019
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    Hi GreenEyes81, I agree with Rah2464 and Alice. What anti hormonal are you on? I know today I ache all over and where I had radiation feels heavy and sore. I have read where some take a break/holiday from their medicine to see if they feel better. I do the Livestrong program at the Y. Hopefully, some exercise/stretching will help me to feel better. Good luck to you. Wishing you the best.

  • wallycat
    wallycat Member Posts: 1,344
    edited December 2019
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    DH had virtually zero pain and we found his cancer incidentally when he finally developed a pain in his shin (unrelated to the cancer). He has it spread through his whole skeletal system and has no pain. Cancer is very unpredictable. I totally get the worry. Totally. Hard to tell someone to try and stay calm till you see someone but that's ultimately the only thing available. You sound so angry about the January visit; please don't be. We don't judge. We've all had to make choices and decisions we wish we could make differently but people do the best they can with what is available and possible. No one judges. I hope you can have some semblance of calm before you see someone.
    I agree that antihormonals can be brutal. You didn't say how old you are...between age and lack of estrogen, so much crap can happen to our bodies in terms of pain.

    Best to you. Post back and let us know how you are doing.

  • ctmbsikia
    ctmbsikia Member Posts: 758
    edited December 2019
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    Agree it could be the hormone therapy affecting your bones, and not mets. I have a DEXA (bone density scan) coming up and I am prepared to fail it again. My lower spine hurts, but the pain is not a constant and it feels better with movement and exercise. That's how I talk my self out of every pain is a cancer, because it's not. Good luck to you.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited December 2019
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    Hello all,

    AliceBastable - our stats on here is only the tip of the iceberg. For me, when you factor other issues in I am just if not more at risk as someone that is triple negative and grade 3. I am supposed to see a doctor every 2-3 months with tests, scans, and blood work rotating with every visit.

    One of those factors is I am unable to take any hormone meds, including AI's. So the pain is NOT from any treatment.

    Rah2464 - I am so glad your pain went away. That is a very long time!

    flashlight - Stretching tends to help, but it NEVER has gone away and it worse in the mornings and in the night.

    wallycat - Thanks, I am actually not mad. :) I just did not want to ask for help/feedback only to be told to call my doctor. :) I am 38, I was originally dx at 36 and had a reoccurrence already. I'm sorry to hear about your DH, how are they doing? Are they responding to meds?

    ctmbsikia - Again no hormone therapy.


    I'm not sure why my stats do not say I am no longer taking HT, it is in my personal side. I took Tamoxifen for 5 days, had debilitating side effects which landed me in the hospital for two days. The biggest side effect was fluid around my heart.

    So, is there anyone out there WITH bone mets that can share how they got started? Treatments? Scans? Etc?

  • ctmbsikia
    ctmbsikia Member Posts: 758
    edited December 2019
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    You should delete the 7/13/2018 hormonal therapy from your profile if you're not taking it. Good luck.

    There is a bone mets thread you can always try there, just type it in the search option.

  • wallycat
    wallycat Member Posts: 1,344
    edited December 2019
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    I'm so terribly sorry you are dealing with this at such a young age. I hate how unfair life can be.

    DH had castration surgery; now is on antihormonals (for men). He had 5 radiation treatments on the bones that take the most weight and things are improving. His PSA went from 10,000 + and just friday, it has come down to 550. Yes, 4 is the worrisome level, but we take our joys where we can. He is also getting Xgeva shots monthly. His most recent scan showed shrinking of some of the bone cancer and his prostate has shrunk dramatically. We just hope this (horrifically expensive) treatment continues to work.

    So as for treatment, if you cannot take anti-hormonals, did they discuss ovarian suppression or removal of ovaries? That would be similar to DH's castration surgery. Once you have the ovaries removed, you could qualify to try the aromatase inhibitors and see if you can tolerate those. I'm sure the bone mets thread, as someone suggested, will be helpful. I just hope you can wait till you see your doctor before you scare yourself for something that may not be the cause.


  • olma61
    olma61 Member Posts: 1,027
    edited December 2019
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    Bone metster here - I had no pain (and still don't). I found my breast lump, was first diagnosed Stage II and during the diagnostic period, was given a breast MRI which led to a PET scan which found my (suspected) bone mets. Then had a bone biopsy to confirm.

    The best diagnostic scan is either a PET scan or a nuclear bone scan for bone mets. And the biopsy is needed since inflammation / arthritis can also show metabolic activity on scans.

    As far as treatment, I am HER2 positive so your mileage may vary. I had Taxol / Herceptin /Perjeta for six months and started hormone therapy when that was over. Radiation is given for painful bone mets or to treat perhaps a single bone met. Surgery is only done to repair damage, not to remove mets that have yet to cause problems.

  • olma61
    olma61 Member Posts: 1,027
    edited December 2019
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    Forgot to add - as far as what I did while waiting for treatment - the only "complementary" things I did was to exercise almost every day and eat a low calorie, low carb diet, under 1200 calories per day. I was already doing those things so I continued. The exercise helped relieve stress and both fasting and exercise are said to improve response to chemo. By the time I was done with the six months Taxol, I was NED, so maybe what I was doing helped, I don't know for sure.

  • sondraf
    sondraf Member Posts: 1,630
    edited December 2019
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    Also mets - de novo, but ER+. On the same regimen as most others ER+ ladies as its the New Standard of Care - Ibrance/letrozole with hormone suppressant and bone strengthener.

    In my case I thought I had an unrelated SI joint issue (which I have had issues with my whole life) and it took ages to get that diagnosed for what it was (long, long story). It made me stiff, altered my gait, and I had increasing leg weakness and difficulty holding my body up. They just juiced it with radiation last week and its much better, but its not 100%.

    Mets were found during my scanning post mammogram/ultrasound/biopsy set - so through CT/MRI/nuclear bone scan (no biopsy for me). Supposedly its lower lumbar vertebrae only, but they don't hurt and the (two) whole MRI spine scans I had showed nothing close to impinging on the spinal cord, thankfully.

    At your meeting you may want to ask her about what a non-hormone based treatment would look like for you given your past issues so you at least have an idea as to what the paths are, to set your mind at ease.

  • KBeee
    KBeee Member Posts: 695
    edited December 2019
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    The treatments would depend on the pathology; it can change from original diagnosis. If triple negative, chemo would be involved. If HER2+, you'd expect something to target that. If You are ER+ and HER2-, then they usually start with IBrance and Letrozole or Falsodex, but it would depend on what you can tolerate.

    I am high risk and have already had a recurrence as well, so I do understand the elevated fear that comes when "the other show has already dropped". I had severe pelvis pain (still do) which ended up being unrelated to cancer. Hoping you back issues are as well. Keep us posted after your January appointment.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited December 2019
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    ctmbsikia - I went ahead and removed it. Maybe that will help avoid confusion. Thanks.

    wallycat - Thank you for sharing. I had one overy removed years ago…so mine was minimal. At 36, I just am trying to fight and do what is right while still having quality of life. It may be something to revisit.

    Olma61 - Thanks! Was the bone biopsy more painful or bigger deal than you breast biopsy? SO HAPPY to hear you are NED!!! I intermittent fast, but have got a bit "lazy". Getting back on that, the health benefits are amazing!

    SondraF - Thank you, I will ask about non hormone treatment regardless of results. I did not they could even do that nor thought of it. Glad they were able to get it figured out.

    KBeee 0 Thank you for the specifics. I'll spend some time researching those specific meds. I just don't want to go in and be blindsided. My previous doctors gave me results (good and bad) over the phone…which for me is perfect. Process in the privacy of my home and come in the appointment ready to go to work.


  • windingshores
    windingshores Member Posts: 160
    edited December 2019
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    What was your Oncotype Dx score if you had one?

    Also, why could you not take anti-hormone drugs? I know if Tamoxifen was not tolerated, doing AI's at your age may be difficult but if one ovary is already gone, could you suppress the other one?

    I had sensitivities to all generic AI's and have to take a brand name Femara. I wonder if trying a different company or a brand name would help you. I don't know if, after two years, they can be helpful though. Maybe someone else does.


  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited December 2019
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    Hi windingshores, I had an Onco each time actually, 15 and 14. I Tamoxifen for 5 days, had sevear reaction that included a 2 day stay in the hospital which found fluid around my heart due to the Tamoxifen. Thus no more, and my Onco recommended no AI's either. After my five days, I would be scared to try the others. It was pretty intense. Thanks though!

  • olma61
    olma61 Member Posts: 1,027
    edited December 2019
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    Hi, greeneyes, the bone biopsy was a bit of a bigger deal than the core needle biopsy I had on my breast. Although, I was not cut open, it was all done with needles, but I needed anesthesia and it was a "one day surgery" admit to the hospital. I felt nothing during the procedure, was a bit sore after but nothing Tylenol couldn't handle.

    Yes, I am lucky that I have responded pretty well to the Taxol and the ongoing Herceptin and Perjeta (and anastrozole). But...a year after chemo was completed I had one met show activity again on my PET scan and I had radiation. Back to NED in October...next scan April.

    And the fasting, you're not alone, I have been lazy too! I am struggling just to make sure I am fasted for 13 hours from evening til I wake up! I downloaded an app called Zero, it's simple it just lets you keep track of the start and end times and show your history if you save each fast. It helps me keep track because I don't always keep regular hours. I do think IF has some benefit especially during chemo, but even after and even for people who haven't had cancer.

    If you do wind up with mets, download BestBird's book about MBC (or maybe even now, it will answer many of your questions about treatments) Might be helpful on the hormone therapy issue, too.

    Info is here: https://community.breastcancer.org/forum/8/topics/831507?page=5#idx_124

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited December 2019
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    Olma61- thank you! Checking her book out now!!!!


    Thank you all—this is all great info and will keep me going studying! lol On a side note, I have tried to be more active the last few days….it has helped. Not gone a 100%, but the pain has been better. Hoping for a disk/ issue. But in the mean time, learning and ready to go to battle whenever the moment arrives.

  • olma61
    olma61 Member Posts: 1,027
    edited December 2019
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    Congrats on getting moving a bit! Hopefully, your pain will turn out to be not cancer related and you can find some relief when you see your doc. Take care!

  • divinemrsm
    divinemrsm Member Posts: 6,202
    edited December 2019
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    Green Eyes, I completely understand the part of how you are not going to bankrupt your family. I feel the same way.

    I've had bone mets about nine years. A few proactive suggestions. Take Vitamin D. Start now and have yours checked when your insurance kicks in. I take 5,000 iu a day, its very inexpensive. Many women with bc have low Vitamin D. You could also take a daily calcium pill.

    I was a big diet soda drinker. That shit is not good for you. If you're a soda drinker, eliminate it. Drink lots of water every day.

    It's hard not to worry, but as others said, allow yourself some activities you can get lost in, whether retail therapy, a day trip somewhere or a big night out, going to the cinema, whatever. Find ways to occupy your mind until the first of the year.

    All my best to you.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2020
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    It's finally here! Appointment in the morning for a single mammo/single ultrasound. Have no idea why, but super thankful my Onco put in order for diagnostic—as close to immediate results as you can get! Then Tuesday with the Onco for next steps and blood work. Still hoping its a Vit D/iron issue for the fatigue.

    Back pain and fatigue are still going strong. Started having a new pain on my chest a week or two ago…that one is odd. I'm not sure that I feel a lump…but if you push just right I'll catch my breath and probably slap you. Incredible pain, in a very specific location and nothing like mussel pain. Pretty nervous about the ultrasound wand thing though…that is not going to be pleasant. Talked to my DIEP surgeon….she was gently concerned about chest wall recurrence possibility and glad to hear I was getting it checked out.

    Anyone have a chest wall reoccurrence? Was it painful? None of my other lumps were painful in the least.

    I just need peace of mind….the not knowing is worse than the knowing.



  • KBeee
    KBeee Member Posts: 695
    edited January 2020
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    My recurrence was techincally called a chest wall recurrence. I did not have pain, but have heard of others who did if it was near a nerve that still functioned.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2020
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    Thanks Kbeee. How was yours found?

    My mammo/ultrasound yesterday showed nothing. Just left onco office- game plan is xrays today, CT scan Monday, appointment with MD tomarrow who will get more labs for non cancer issues and a follow up with onco with all tests completed in two weeks.

    I was surprised at the CT rather than MRI or Petscan....any thoughts in that?

    Praying stuff is released on MyChart. Lol my CBC panel looked good today.

  • sondraf
    sondraf Member Posts: 1,630
    edited January 2020
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    CT scan picked up my pelvic met and they had that back before the mri and bone scan, which they used to confirm mets. However, given the size of the lesion, stevie wonder probably could have picked it up so who knows, but it did clear me of any squishy bits cancer down there that could have been pressing on the back.

    My left hip was xrayed after the tests at the request of MO as they wanted to check a spot there, but it was less invasive approach that would still get them the info needed.

  • blah333
    blah333 Member Posts: 68
    edited January 2020
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    Saw this post, sorry you have already dealt with this twice and are scared about mets. Is pain your only symptom? I have read a lot through old posts and it seems most people worried about mets who actually DO get diagnosed with them are worried because they were told there were small lesions visible on a scan or something like that. Most people who write in worried about a weird pain, it ends up being nothing. Stress can even cause pain!

    But I do understand, I am naturally paranoid and worry about worse-case scenarios as well. It is probably difficult for you to trust your body right now. Personally I have back pain sometimes because I have some rib dysfunction caused by swelling/missing lymph nodes. Not sure it's costochondritis but if I'm very active or wear a shoulder bag or even lay on my side in bed "wrong" OR even driving 45 min, I can get bone pain. I had a cold recently and my bones ached, there are all kinds of reasons you could have pain.

    Sorry I don't have more to add. Just saw you are also in your 30s and worried. I am also currently waiting for an appointment for a CT scan to see if I have a recurrence and was also surprised (and alarmed) at the CT order vs. ultrasound or MRI. I tried to read around online about why a breast doctor might order CT, and it seems mostly to check out the chest wall. I guess that makes sense for people who have had mastectomy and can't have a mammogram. I am also worried about chest wall recurrence, but I have a lump present.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2020
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    SondraF Did you have any pain with your pelvic met? If so what kind? Any other symptoms? Thank you for the vote of confidence in a CT! :) Were you Denovo?

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2020
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    blah333 I just responded to your PM :)

    At this point I have fatigue, some headaches, and a specific spot on my cancer breast that is very painful. I also have has significant stress in the last few months that could explain the fatigue. I have actually had back problems in the past…this feels different but may not be. It is most painful in the night and mornings, no ryme or reason. I can do the same thing and it hurt one day and not the other. 100% of the time is feel's like burning pressure…then on and off sharp pain with sciatica down my leg.

    If you can feel a lump…why is it not being biopsied?

  • sondraf
    sondraf Member Posts: 1,630
    edited January 2020
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    I am 42, de novo. Pain was gradual onset over a period of a few months after I twisted wrong in an exercise class but chiropractic was improving it, oddly enough, which is how I made it through my initial scans. Pain was always worse in the evening, and I could not lift my leg by the end in order to take a step, nor hold my body in a straight standing position, before it fractured. Pain was always present in the background, but manageable with ibuprofen. There was also a distinct heaviness to the leg. I have no pain from the other mets in lower lumbar where they all congregated.

    Only other sign of breast disease was fatigue (had a very stressful project last spring and live in a stressful city) and a nipple retraction right before the exercise 'accident'. I had no breast pain but I also had a reduction some years ago so I don't have any feeling in the breasts/nipples and the tissue and shape has changed over the years. No one in my family has had cancer going back at least four generations on both sides, except for a grandfather who got melanoma. We do have long history with back and hip pain issues, though.

    If your pain can be described as sharp, burning, or traveling down - that is sciatica and something is either hitting a nerve or you could have some light degeneration in the spine, arthritis, or partial herniation. Stabbing, constant, 10/10 pain could be a fracture. Throbbing that comes and goes could be muscle related - I get that some now as I re-strengthen muscles as the pelvis/sacrum heals which is different from the sharp, almost grinding, pain from when it first fractured.

    Look up a Dermatome chart online - that will allow you to see where your sciatic pain is originating in the back. Radiating down the leg is usually L5/S1, and a lot of lower back issues start in the late 30s/early 40s. My herniation was at 38, caused by straining the lower back and glute muscles after a period of inactivity and stress. Xrays should pick up bone issues in the back like arthritis and disk problems. I had a lumbar MRI because of significant nerve pain and loss of feeling in my toes, so they wanted to check for impingement.

    Good luck.

  • KBeee
    KBeee Member Posts: 695
    edited January 2020
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    I felt my chest wall recurrence.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited January 2020
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    Just got a call….xrays were not clear. I don't remember a lot what she said other than "inflammation"—went into "hold your shit" together mode…...results forwarded to my MD whom I see this afternoon. She said if I did not already have the CT scheduled, it would be now.

    SondraF Thank you so much for the details, I'm looking that up as it will help when I see my doctor today. After reading your post…I think she used the term "degeneration" also, not a 100% though.

    KBeee Thanks

    Any recommended questions for the MD regarding the X-ray today? I'm off to Google….but thankful for any input.

  • sondraf
    sondraf Member Posts: 1,630
    edited January 2020
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    At your age I would be surprised if a lumbar xray didn't throw up some sort of degeneration and inflammation! Definitely continue holding shit together sounds like they think they know what it could be, but CT to confirm/second check.