Bone marrow

[Jhshl512]

Hello everyone. I’m hoping to get some positive feedback. I went to my Onc PA yesterday and received some upsetting news. I asked my PA to look at my MRI that was ordered by my neurosurgeon as I had not heard from him yet. I had never seen reported on any of my scans that the cancer had infiltrated my bone marrow. She turned to me with a worried look and then went to talk to my oncologist. She came back and said it’s something we already knew and that my bloodwork would look very different if there was a problem. Although I would love to cling to that thought, I’m really not so sure. I’m 66 and 12 years living with MBC.

Any thoughts or advice would help. As always, thank you for listening🙏🏻

Lori

[nonna70]

I would ask the oncologist to go over results and explain them thoroughly; you have a right to know.

[Jhshl512 in reply to nonna70]

Yes I totally agree and thank you

[Dragonfighter in reply to Jhshl512]

I agree, and sooner rather than later. No need to stress if there is no need to stress! All the best to you.

[Gallivanter]

I've had MBC in my bones for about a decade...To my knowledge, it's been in the marrow most of this time, at times very extensively.

I don't think the word "marrow" ever showed up on a scan report, but would come up casually in conversation with my oncologist, which leads me to believe that when you have widespread "bone mets", unless they are small/superficial, it's just a "given" that it's in the marrow?

The "only" issue that I'm aware of is that it can inhibit the production of various blood cells, the ones we all track on our lab reports.

[HelenWi in reply to Gallivanter]

I don’t think it’s given that bone mets are in the marrow. I think the most common case is that mets are on the bone. At least in my case, it has turned out that the lesion in the marrow is not detectable in a PET scan.

[Gallivanter in reply to HelenWi]

Agreed...but with "widespread" (I think this is an official term, I've heard it from several oncologists) bone mets, I think it's quite often the case.

[Tantalon7211 in reply to Gallivanter]

It’s encouraging to hear from someone that has had over a decade with bone Mets- that’s wonderful where are your bone Mets and did you have radiation? I have bone Mets in my pelvis area and very painful in hip - possibility some on my spine - taking Ibrance -

I’ve heard that people can live for several years with bone Mets and you’re proof

Congrats

[Jhshl512 in reply to Tantalon7211]

Yes I am proof, so keep fighting. I had bone Mets found in my spine in 2013. I had to have surgery due to the fact it was pressing on my spinal cord. Tumor removed and rods and screws were placed to support my spine. 2023 again my spinal cord was once again in jeopardy. Surgery again. Once again more rods and screws to support my spine. I also have Mets to my pelvis. This is the short version of my story. Yes, I have had radiation to both areas which helped tremendously. I have been on so many treatments. I am now on taxol. I have to say and I don’t know why but I am pain free. I thank the Good Lord everyday. There’s always HOPE and always BELIEVE. 🙏🏻🙏🏻

[Gallivanter in reply to Tantalon7211]

My bone mets are in virtually every bone that they look at...every vertebrae, all over my pelvis, hips, femurs, ribs, skull...These cause me no problems except for the time my femur snapped, two years ago, after hurting for a few months. Since then, I feel no effects of the cancer.

I did radiation 10 years ago for the first met, T12, then about three years ago in my sacrum because they thought it had spread to my meninges, which later turned out not to be the case (phew!).

I also have a few mets in my liver as of 2 years ago which I had ablated (but still some there...cause me no problems).

[Jhshl512]

Thank you for your knowledgeable reply and I hope you are correct. This was the only time it showed up on my scan. It was a MRI of my spine. I’m also glad to hear that you have been, like me, dealing with this for more than a decade. Keep up the good fight!!

[JEE123]

I agree with Galivanter. Bones are typically an area for mbc. Is this a new location for you.

[Jhshl512]

No. it’s been only my bones since 2013

[atoth17]

I have MBC in my bone marrow but it was only confirmed with a bone marrow biopsy. There was one part of my bloodwork that was a little “off” and what made her want to go ahead with the biopsy (I’m sorry I can’t remember what it was). I have known now for over two years and we have not done anything different treatment wise.

It’s alarming to think of it being in the marrow but I honestly don’t feel any different than before I knew and I had probably had it in the marrow for a long time, according to my Oncologist.

I hope this helps a little bit.

[Jhshl512 in reply to atoth17]

It so does!! Thank you❣️

[HelenWi]

I was diagnosed with MBC in 2022 and only this summer realized that one of the initial lesions in the femur was in the bone marrow. At that initial stage I didn’t really read the mri report very carefully. Over the last two years my bone mets were all stable but this thing in the marrow didn’t show up in the PET scans, similar to your case. I’ve had increasing pain in my thigh over the last year, and had an MRI done this summer only to find that same lesion in the femur — in the marrow. It made me a little mad that it seemed to have been forgotten and now had increased and caused a small fracture. My onco told me the same thing yours did… if there was a real problem, the bloodwork would be really out of whack. We had this lesion radiated to take the pressure off the bone.

It’s great that you’ve been living so long with MBC. To me it indicates that you cancer is manageable and you shouldn’t worry about the marrow.

[Jhshl512 in reply to HelenWi]

Thank you HelenWi. It’s really amazing that I can turn too all my warriors and feel so much better than I do after speaking with my Oncologist!

[Dragonfighter]

I like this site because everyone here is going through cancer. To my knowledge my oncologist has never had cancer.

[Jhshl512 in reply to Dragonfighter]

Although I love my oncologist, well said

[Totheriver]

I have had bone Mets for 5 years and am not sure if it is in my bone marrow. I will have to ask my oncologist the next time I see her, I am still on my first line of treatment. I have had a couple of sessions of radiation for troubling spots. The cancer also broke my femour so had surgery .

Hope things continue to go well for you💕

[Jhshl512 in reply to Totheriver]

Wow! 5 years! There are so many more treatments ahead for you! Keep up the good work and thank you🙏🏻

[Totheriver]

Thanks.