Bone Mets Thread
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About Deanna, she had been having more fluid to drain off and was having (had?) a stent put in. She was also having to get more frequent blood transfusions and did acquire some sort of infection of late that they were trying to get to the bottom of. I'm definitely surprised of her passing. It didn't feel like she was close to that, but again I'm not in her inner circle (just a FB friend).
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I’m so very sorry to hear about Deanna. She was such a sweet soul and so very helpful. I will miss her. Prayers for her family
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I, also, am one who was first greeted and welcomed on the Bone Mets thread by Deanna. Like dear Lynne, who has been my mainstay, being supported there by Deanna and all the other wonderful women was what kept me going when I was first diagnosed with mbc, over four years ago. Deanna was there for everyone, so generous with her infinite knowledge and her motivating encouragement. Very heartbroken. May Deanna rest in peace, and deep condolences to her loved ones.
Valerie
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Hi Faith123, I have had bone mets for 6 years now and it has remained in the bones. We are in no greater risk of it spreading to the spinal cord because of their location. I have had radiation and other systemic treatments for bone mets. There are many treatments available to keep the bone mets stable for years. I am sure your oncologist has discussed these with you. If you are ER+/PR+ and Her2-ve, then hormone treatments ma be the first line of treatment. I hope you are not in pain due to bone mets. How did you find out about this?
My initial diagnosis was cervical mets, so my MO referred me to the nuero surgeon who follows up with MRI every 4 to 6 months, just to ensure that the tumor is not invading the spinal cord space. Depending on the location and number of mets on your spine, it may be a good idea to consult with a nuero radiologist or a nuero surgeon. It will put your mind at rest, knowing you are being followed by an expert in this field.
From my experience and from everything I have read, bone mets are slower growing than other soft organ mets. So hopefully, once the treatment plan is in place, you will start living your 'new' normal.
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Today I come to this thread and I am just shocked and heartbroken to learn of Deanna's passing. I haven't been on FB lately and had no idea what she was dealing with; she seemed to be doing so well and not one I was worried about. I second all the wonderful recounts of her positive attitude and support for us all. I too was one who Deanna first greeted on this thread and she gave me such optimism for the future. Thank you Jen, for letting us all know. I am still just in complete shock and will miss her so. May she rest in peace and her family find comfort. My condolences to all her family and friends.
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Thank you so much SK35,I’m still learning so I’ve been doing a ton of research just trying to get as much information about this.
I found out about the Mets in May when I had some back pain,I put it down to post partum aches and pain as I was pregnant last year and gave birth in Nov.
Was diagnosed with “pure” DCIS in 2017 and had a mastectomy and few months of Tamoxifen.
I will definitely see a neurosurgeon.
I had Radiation done and I’m now doing A/C 4 cycles and 12 of Taxol and Herceptin.
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Damn
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Has anyone with bone mets been referred to physical therapy by their oncologist? I thought I was going to get help to learn safe core strengthening exercises. The physical therapist does not want to “touch” my bones and is doing lymphatic massage.
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I just started PT last week but my oncologist didn't send me. I have had very little pain and I'm thankfully getting mobility back quickly now after compression fractures earlier this year. I went to an orthopedic/spine person who manages people with my conditions
1. osteoporosis
2. Paget's Disease of Bone
3. Metastatic BC to spine and possibly some other places. My lesions for mets and the lesions for Paget's Disease are similar, lucky me! The spine was biopsied and came back positive so right now every other lesion is a guess.
4. Three areas of compression fracture (cervical thoracic and lumbar regions)It took a long while for them to send me to PT but I'm glad I'm there. The therapist is working on stabilization of my back and pelvis first for a few months and then we'll see how it goes moving on to core strengthening. Meanwhile I'm doing the exercises she gives me religiously. I'd love to go back to workouts other than walking!
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hi! I have a question!
Does anyone know how long bone Mets take to develop?
I know mitotic rate (grade) of the cancer plays a part in it.
One of my great mysteries that I may not ever know with MBC to bones, is how long was I walking around with bone Mets for? Was it 2 years? 5 years? 10 years?
Does the cancer always start growing FIRST in the breast and then move to the bone? Or could it start growing in the bone first before any evidence of breast cancer is findable?
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LoveFromPhilly , I think it is called 'Metastatic Breast Cancer' since the cancer cells originated in the breast and then migrated to bones and other organs. If it originated in the bones, it would be called bone cancer and not metastatic breast cancer. I may be completely misunderstanding this - hopefully other knowledgeable ladies will chime in!
We will never know how long we have had the bone mets since the imaging is done only when symptoms come up. My pain started about 5 years after my initial diagnosis. At the initial diagnosis, even if there were stray cancer cells in the bones, they may be too small to show up on the PET scan. Cancer disease is such a mystery!
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My RO said my bone mets were probably there for well over a year b4 Dx. He says all St 4 women should get full body scans and brain scans as he feels my 20 brain mets were probably there from the beginning too,
L
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I agree with your RO, Lita. I was dx with bone mets de novo, well a couple weeks after initial dx, because MO ordered a PET/CT as part of the dx, and voila! She estimated I'd had them for at least a year if not two, but I wish I knew also. I never had any pain in those areas, so I had no idea, but I'm glad my MO was proactive. My understanding is bone mets are slow growing compared to other areas for metastasis.
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I have wondered about this, too. Even though I was also Stage 4 de novo, I was so shocked to learn that 30% of early stage women also develop mets, I asked my oncologist if she routinely gives early stage patients a scan at diagnosis and she said no! The only reason I had a PET was that my breast MRI showed a lung nodule. So I wonder how many ES women could have mets from the very beginning. Also asymptomatic here too - I had lost weight, was working out and kept saying "I feel better than I have in years!" and then the lump showed up.
As for the brain MRI, I insisted after I was diagnosed Stage IV. I told her I was having headaches and pain in my eyes while driving to make sure she would order one for me. I actually had developed eye floaters and had been to the opthamologist one month before I found my lump. But so far two brain MRIs reveal nothing.
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Olma, you've triggered my memory! Now, that I think about it, it wasn't that my MO was so proactive during dx, but now I remember my breast MRI showed something in my liver. It turned out to be benign, but that's why she was able to get approval for the PET. Can't believe I forgot that part! So I guess only if something shows up in the lung or liver or elsewhere with a routine MRI will a patient get a PET, but still not a brain MRI. After two years of clear scans, I asked my MO about a brain MRI because I'm Her2+ and had read an article that it tends to move to the brain. She told me to "give her some symtoms," and she was able to get it approved.
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I have always wondered why the insurance companies will approve every 3 month scans - CT's, bone scans - but not every 3 month, or even 6 month, Brain MRI's. We must have neurological symptoms to get Brain MRI approved. So the mets can move to brain and go unchecked until we have symptoms. My CT's I get every 3 months are not cheap but insurance is still approving them. Hope they don't stop approving them. But I cannot get another PET unless the CT shows a concern per my insurance.
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yes yes exactly!
I think I confused a few people with my post and they thought I didn’t understand where breast cancer starts. I do understand that breast cancer starts in the breast.
However, I just wish I could find out how LONG was I walking around with bone Mets and breast cancer before it became apparent I had an issue in my breast. I was diagnosed de nova with innumerable bone Mets.
It is frustrating to me for some reason to not know how long I was living and walking around with this disease process happening in my body.
Thank you to the folks who PM’ed me on this topic hug
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I assumed that everyone with positive axillary nodes had full scans but it seems this may vary by hospital and/or doctor.
I’m my case, my MO ordered a Bone scan and CT body before our first meeting, which was when and how my bone met was found and I was diagnosed stage IV de novo. A Brain MRI was done at that time too due to HER2+ status, which was clear. Brain mets discovered about a year later, after complaining of a 3 day headache (unrelated but lucky tension headache).
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LoveFromPhilly and others interested in her question - Looking for something else, I came across this on MedScape tonight.
'Born Bad': Some Cells Spread Even Before Cancer Is Diagnosed
The researchers studied Stage IV colorectal cancer patients and conclude that seeding of metastatic sites takes place possibly years before the primary tumor is even detectable. They now want to determine if the same is true for breast, lung and other cancers.
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My mother in law has been diagnosed twice, two seperate breast cancers, and still hasn't had a PET scan. It's bizzare. I was originally diagnosed in 2008, didn't get a PET scan until 2018 when the back pain started and the MRI showed tumors.
I think anyone who's been diagnosed with cancer should get a PET scan but you know, insurance doesn't agree, even though if it's caught early it would save them money.
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i was diagnosed with stage 2, no PET was mentioned by MO because they know insurance does not approve it. I told them i'm in pain (even my pain is not at the met location) so insurance approved it. PET discovered my bone mets right before my first chemo, so chemo was cancelled & i went straight to Ibrance.
I wonder if i'm still "stage 2" if i did not ask for PET. Also, if i had chemo, it might put my mets into undetectable stage until several years later?
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"Also, if i had chemo, it might put my mets into undetectable stage until several years later?"
42young, great question. I finished treatment in October and I have a spot that lit up on a bone scan and a PET scan but then had MRI and they still can't tell what it is. It's a central lucency with a sclerotic rim and the MRI report says it's not typical of any specific benign lesion. Basically it doesn't look benign but at the time of the MRI a few months ago, did not look aggressive (malignant). Made me wonder if it was a met that healed during my long treatment that included Taxol, then AC, then Xeloda.
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Pesky904, in your case: you don't know for sure unless anothet PET was done prior to chemo, so they can be compared.
I personally think more women were at stage 4 from the start, but chemo made the mets ( especially bone mets) inactive & become undetectable.
For those who are hormorne positive, tamoxifen or AI's might keep bone mets inactive for several years, so they don't know they have stage 4 until they have symtoms several years later
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hello all,
Hope you can help with a question - I’ve searched and scanned thru pages of posts but haven’t found anything about repeating a biopsy on the same bone. My only lesion is on L2 but the triple negative pathology results didn’t convince my new MO because the FISH analysis failed. I guess bone is a tough area to get accurate results. Since I had both triple negative and HER2 positive as stage 3, I want to make sure, too. But now I have a compression fracture on L2 that causes me a lot of pain so the thought of another biopsy and delaying radiation scares me. Any similar stories? Thanks for taking the time to read/respond.
Melissa
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momchici - I was NED on H&P & Arimidex, one bone met recently became active again. My MO did not do a biopsy, her reasoning was that the one met would be treated locally with radiation and the systemic treatments were keeping the rest of the cancer at bay so there would be no reason to change treatment at this time. With only one bone met, you may be in the same situation.
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Hi All,
Is it possible to have progression (spinal Mets)while currently on chemo(A/C) ?
On my third infusion and I’ve been having horrible back pain,and flank pain and the back of my legs,my MO wants us to do some imaging so we can see what’s going on.😥
Really hope it’s not progression.
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Yes, Faith, especially if the chemo "isn't working." They had to take me off Taxol and move me to something else because I had serious progression during my cycles. This is why my MO schedules me for scans every three mos. It's the only way to know for sure whether or not it's working. Not every chemo works for everyone. They have to find the right "key" for the lock.
Sorry my words aren't happier. This is a MISERABLE disease!!!
L
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Lita57,this disease is absolutely horrible!!!
Praying for it not to be progression
Will keep you posted after my MRI on Tuesday.
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