Bones mets with ILC question!

jojo68
jojo68 Member Posts: 881
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi Ladies!

Freaking out here...have a question about bone/spine mets with Lobular...

As some of you may know, I had double masec/recon this past January and am now on Dr. Wong's herbal protocol.  I am feeling great except, my lower back and hip pain has gotten alot worse since my surgery.  I did have a bone scan before my surgery and it was clear as well as a ct scan...BUT, we all know how Lobular may not show up!  I have had progressive back pain since the birth of my girls 6 years ago...I was thinking it was due to my botched up epidurals.  There are days here or there now that I have such sever lower back spasms that it brings me to my knees.  I went to a chiropractor and it helped and icing makes it better.  I am so scared.  What do I do?  Do I go for an MRI?  How do we find Lobular mets to spine if this is what it is?  Yikes....

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  • Racy
    Racy Member Posts: 2,651
    edited July 2013

    bump

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited July 2013

    joellelee-I had my bmx last April. I have been having low back pain and pain in both hips. I too have dam lobular. After each surgery the worst pain was low back pain. I don't know why. Even when I had my exchange and ovaries out last month my back hurt the worst. Most of the hip pain is when I sleep and I have to keep rolling over all night. I had a bone scan yesterday. I did see the screen a few times and the hips were lit up like the 4th of July. Not sure if it could mean arthritis or mets. I have to have a dam CT scan on Monday and will get the results on Wednesday. My tumor markers were elevated last week so MO ordered the scans. Like you said, lobular tends to hide. It didn't show up on the scans when it was in my ovaries. I know it can reallyl wear on you. I would talk to your MO and see if he wants to do another bone scan.

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  • urbanfarmer
    urbanfarmer Member Posts: 38
    edited July 2013

    Joellelee, I also have lobular cancer, and innumerable osteoblastic mets to my spine. They didn't show up on my initial bone scan, or on another bone scan months later. They did show up on both CT scans I've had and were very clear on an MRI. If I were you, I would try the MRI for peace of mind. Have you ever had one? 

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  • jojo68
    jojo68 Member Posts: 881
    edited July 2013

    Wow!  Thanks, Ladies!  This is scary!  I wonder why the mets wouldn't show up on a bone scan as they don't tend to be in 'sheets' in the bones, more so in soft tissue.

    I had the initial bone scan and Ct scans last year upon diagnosis and were clear.  I had an MRI of my breasts and another MRi of my liver area for suspicious shadow, but have spot of fatty liver....I will see about an MRI of my back...but, gosh, scary about the ovaries not showing anything/

    Diana, I will be thinking of you, good luck!!!  How did they find it in the ovaries?  After you had them out?

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Joelle, I would recommend a careful MRI of the spine. I have had bad to severe back pain most of my life. It turns out that I have severe scoliosis and a herniated disk. The herniated disk most likely happened during my pregnancy with dd (very common, especially if you have a crooked spine).

    Don't get all freaked just yet, but do get it checked out. 

    If it turns out to be non-cancer back problems, then the best defense is exercise, exercise, exercise. It is not a good idea to go to a chiro if you are not sure what is wrong. They can make things like herniated disks worse.

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  • jojo68
    jojo68 Member Posts: 881
    edited July 2013

    Thanks, Momine!

    When I went to the chiro last year (prior to diagnosis) he did say I have some scoliosis and one leg is longer than the other..and, he did make me feel a whole lot better!...I am trying to stay calm...I just freakin hate this sneaky ass cancer!!!  I apologize for the language...havin' a hard day  sniff...sniff...Frown

    Can my family doc order the MRI do you think...My onc is 2.5 hours away and so sick of travelling there...probably dumb question...LOL

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Joelle, if you have scoliosis, you really need to get your spine checked out properly before you let anyone "adjust" it.

    I would think your GP can order the MRI, or else an ortho. However, it would probably be smart to check with the onc as well, to see if it makes sense to do it with contrast.

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  • Robyn_S
    Robyn_S Member Posts: 197
    edited July 2013

    Joellee might I suggest that you take a holistic approach and treat back pain as though it is a pain in the neck rather imminent mets.

    Have you tried strengthening your back and core using strenghtening exercise (which also helps greatly with stress) this is known to help alleviate back pain rather than resting and letting muscles atrophy. Overweight? Losing weight can help reduce your er+ cancer recurrence risk and reduce the physical burden on stressed joints. An optimistic attitude that celebrates life and lives in the present can go a long way to reducing the anxiety of recurrence that all of us potentially face but in reality many may never meet.

    Peace.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited July 2013

    Momine- some have a ct with the contrast and some without. I have to have it with on Monday. What is the difference as far as mets goes? Also without estrogen what are you doing to have a healthy heart. I was reading that so many women get heart problems and even die because of lack of estrogen.

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  • Bighair
    Bighair Member Posts: 13
    edited July 2013

    Hi,

    I have stage 4 ILC and my bone mets in my spine show clearly in a CT scan.

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