Bone Mets Thread
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Cross post:
Update: Well my MO called me this afternoon. She said PET showed no uptake in liver or bones. To continue Ibrance/Letrozole. Appointment already with her Nov 25 and she said she would see me then. Processing and seeing what questions I have for her for the 25th.
So the pain above the bra closure (new over the last couple of months) is not worsening cancer??
Thankful but confused, frustrated, etc that cancer is stable but I have pain.
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Oh, Candy, I understand. You want to believe the happy test results but fear that they're missing something and that time is passing. I guess that they wouldn't do an MRI to confirm all okay? This disease is so unsettling to peace of mind. Good luck, my dear.
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Thanks Joyner. I am going to ask MO several questions at the Nov 25 appt. One of which is why then the back pain if PET shows no uptake. I do have rheumatoid arthritis so the docs tend to brush off pain issues as the arthritis. Even though I was diagnosed with the RA in 2014 and this area of back just started hurting the last 2-3 months. Yes this disease really messes with your mind and peace of mind.
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Hi candy-678, it is good that your PET scan shows no uptake. But at the same time it is frustrating because you are in pain and don't know why. Are you seeing a pain management specialist? Hopefully the pain is due to non-cancer reasons. On the other hand,if the pain is due to some lesion not big enough to be picked up by PET scan and if Ibrance is working for you, then the pain should start subsiding. Could you request for an MRI at your next visit?
I was in your position sometime ago, when the oncologist said that PET didn't show any uptake in the bones but my upper back pain was increasing by the day. After 3 months of taking pain medicines, I asked my MO to order a cervical MRI with contrast and that scan showed a lesion in the area where my back hurt. My MO said I was very sensitive to pain, but she did change my systemic therapy.
Hope you find your answers on the 25th. In the meantime, maybe some Tramadol or Tylenol would help?
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Candy, I had one other relevant experience. Early last November I had ordered a huge box of dog food as a Christmas present. I tried to move it and pulled a muscle in my back. It was bad enough that I ended up with a walker and a cane for a while. My MO was convinced that it was cancer causing the pain, and I was convinced it was a pulled muscle. The only MO who believed I might be right was my Sloan-Kettering doc. I knew that it takes 4 months for my pulled muscles to heal. 4 months later... voila!!!... the pain was gone!! Is it possible that yours is a pulled muscle??
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Talking about back pain and pulled muscles...
My mid/lower back has been bothering me since mid-July (yikes!) when I did pull a muscle overdoing it in a workout class. However, the pain shifts back and forth from left to right and it was on the right side but now is definitely on the left
I just had a wonderful massage which felt quite amazing. It feels like I want the massage therapists that I go to, to work on it forever and ever. And even after the massages, it still hurts Sooooooo that all being said and written out, I am going to request an MRI when I see my MO on Monday. This has been going on way to long and even if it is muscular, I should probably get to the bottom of it already.
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S3K5- No I am not seeing a pain management person. We don't have one locally (rural area). We also do not have Palliative care. Just my MO, which prescribed Tramadol last month to be used sparingly with Tylenol Arthritis. But I hate to use the pain pills since they cause more constipation, which I already deal with. Doesn't a lesion have to be over 1 cm before the PET picks it up??
Joyner- Who knows the reason for the pain. It hurts right on the spine- one specific spot- a couple of inches above the bra clasp.
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hi candy I’m so sorry you are in pain. For bone mets, the PET is considered the best imaging option because sclerotic lesions show on CT alone but it is hard to determine if they are active cancer or not...at least that is my understanding. Since PET and nuclear bone scan show the metabolic activity, they give more information about the bone lesions.
It is also my understanding that PET/CT picks up lesions larger than 4 MM X 4 MM. so, yes it should pick up lesions smaller than 1 cm.
Do you have a primary care doc that you see for your RA
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candy-678 , considering you have a very specific spot that hurts, I would definitely request for an MRI w/contrast. I think the lesion has to be a certain size before it shows up on a PET scan, though I am not so sure how big it has to be.
I have bone mets on most of my spine, so I have to take Tramadol 2x/day, Tylenol Pm at night and Celebrex for pain. I do get constipated for which my GI doctor has asked me to take Miralax every other day. I get very nauseous on opiods, so I avoid them. In my case, if I don't take the pain meds, I cannot move or carry on my daily tasks. I have maxed out on radiation therapy to my spine, tried radio frequency ablation, nerve block, etc but all these were temporary relief.
I hope you are able to manage with minimal pain medicines.
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Candy, I see ILC in your stats, so I’ll share some info I heard from expert radiologist Gary Ulaner of MSK. He spoke about imaging ILC mets on a webinar earlier today. He said that while PET can be more sensitive than bone scan, SOME ILC bone mets can be non FDG-avid. This means they do not eagerly take up the radioactive glucose and thus do not show up on PET. In this case, a CT is better. So I would ask your onc to make sure the radiologist compares PET and CT for you. Also ILC bone mets are more commonly sclerotic.
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Shetland,
You said "ILC bone mets are more commonly sclerotic." Can you explain?
I also have ILC, and was interested in your response to Candy. My MO is asking the radiologist who read my 10/30 CT scan to read it again. But related to your comments, he said in the body of the report that he was not sure what he was looking at -- whether it was sclerotic or whether it was actual mets to the bone. From what the MO said, if it's sclerotic it's healing -- does that me
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Is it possible there is a compression fracture or nerve impingement? Neither would show up on PET, and sometimes fractures take a few months to show on CT and other scans. So an area where you have had pain shows up 3 or 4 months later as a fracture. I would ask your doc about this.
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Shetland that's an interesting point you raise. There is a woman with ILC bone mets in my metastatic support group and she always has to get two different PET/CT scans, one with FDG and another with a different contrast media specifically for her bone mets (on separate days). For the life of me I can't remember the name of the contrast media used, but Candy it might be worth asking about, or I could contact her directly and ask her what they've been using if you'd like.
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Thank you ladies for all the good advise.
Olma- I do see a rheumatologist for the rheumatoid arthritis (and Sjogrens Syndrome and Antiphospholipid Syndrome- 2 other autoimmune disorders). I was on medication for the RA and Sjogrens BEFORE the cancer. But with the cancer diagnosis and the cancer meds, the rheumy stopped that med. He is hesitant to restart, due to most of those drugs lowering white counts and potentially causing lymphoma cancers. Catch 22 situation. So, as of right now, my autoimmune disorders are not under treatment. Yet again, rural area and the 2 docs do not collaborate with each other on how to treat me.
Lori- No need to ask about the contrast for a PET. Because since my PET results were good, I am sure insurance will not approve another one. This is only my 2nd PET because insurance denied them until I had documented changes on the CT.
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Philly - I've had that too, with pain that comes and goes on the left side. I don't have mets to the left pelvis, so its more driven by the altered gait from the right side and whatever the hell is going on over there. Do you think you have altered movement patterns in any way?
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hi Sondra - good question! Well it’s not actually that it comes and goes from the left side. It actually started in my right side for about 4 months and then SWITCHED to the left side a few weeks ago. It has never stopped hurting. My work is incredibly physically demanding (I am an acupuncturist and bodyworker and I do tons of hands on work and adjustments with patients 4 days a week). I know for sure that the pattern of being a body worker has imprinted on my body in some way. Hence, I get worked on by other practitioners sometimes 2x/week or 2-3 times a month depending on how much pain I am in. Maybe I am just one of those folks who has a ton of chronic pain? But actually this is all new to me, and the last time my back hurt was when I had tumors growing in my spine so of course I want to be hypervigilant and get an MR
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LoveFromPhilly ,does acupuncture help with bone pain? I am considering it since my bone mets in the spine are extensive and the pain seems to be ever increasing. I am on too many pain medicines. So I am willing to try other ways of reducing the pain. I'll have to find a good acupuncturist close by who is in network with my insurance.
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S3K5I pm’ed you!
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S3K5, I don't post much, but I tried acupuncture for neuropathy and in my case it did not work, but everybody is different. Have you tried medical marijuana? I get it with the opioids - I use them sparingly and obviously can't use them when I am working on the ambulance - so Advil it is. I am not a yoga person or exercise for that matter 😳 but I have been thinking about that. Good luck!
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My First Rads question - Im due to get 5 rad sessions to my sacrum met next week - did the planning today. They mentioned likely flare of pain for a couple of days afterward. Does everyone get this? How intense are we talking here, or is it dependent (as with everything) on individual circumstances? Ive got some morphine and GP on deck in case I need more than ibuprofen, but just a sense would be good! Hoping to obliterate what has felt like a damn rock in my SI joint for the last four months.
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Individual I think. I had some flare after rads to thoracic spine. It last just a few days and was nowhere near the pain I had been experiencing due to compression fracture at T11.
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Hi S3K5 and Mediclisa!
A couple notes about acupuncture (from the passionate acupuncturist!)...
1) Acupuncture will not be very effective for neuropathy unless the acupuncture treatments begin either BEFORE chemotherapy or right at the start of chemotherapy. Mediclisa - I am going to assume you started acupuncture for neuropathy after the neuropathy had already started? Is that correct? Lots of great studies around this. Unfortunately, people usually don't try acupuncture until the symptoms arise, and specifically for neuropathy, it just doesn't really work. The systemic adverse effects of the chemo are already in place.
2) As for acupuncture for bone pain...so this is a little bit complex. The reason being, is that yes, for some folks where the issue at hand is TRUE bone pain due to cancer, acupuncture just may not be able to touch it. I think of bone pain as really some of the deepest, difficult to reach pain. Acupuncture needles CAN reach some of the bones without injuring to the body, however, most people in our society have a fear of needles and even getting them onto the table to allow for needling of the bone tissue, to hopefully activate some release of the pain cycle, is quite tricky to do. On the other hand, some people (even myself!) experience bone pain and muscle pain from the treatments (lupron, xgeva, aromatase inhibitors, etc...). For bone pain caused by treatments (and not malignant tumors), this is much more possible to treat with acupuncture and find relief. The next big issue related to this is finding an acupuncturist who really "gets' it, and understands that the treatments need to integrate more techniques to help alleviate the pain.
3) Acupuncture is not a "magic bullet." Similarly, if one were to go to physical therapy to address an issue, they would go 2-3x/week for at least a month. The same is necessary with acupuncture. It is difficult for people to commit to getting treatment that often. There are variables that make it hard such as financial burdens, difficulty in finding a good provider, lack of insurance coverage (in certain states), time management, and the commitment to one-self to get the treatments for example. I do find that if one can make it to at least 1 appointment/week for at least 4-6 weeks, they will notice an improvement.
Hope that all makes sense.
Acupuncture can sometimes get a bad rap and it is because of a lack of education around how it works and why it works, and how to make the best out of your acupuncture appointments.
Wow! I feel like I could use what I just wrote as a blog post, LOL! Very informative :0)
Feel free to ask questions!
Best to all xoxo
Philly
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I had 10 rounds for my mets in the sacrum. I could barely walk and couldn't lift my leg and pain was excruciating. After the first treatment I had zero pain and after five I could walk to the table. The doctor and techs couldn't believe it. I had no pain flare. I may be one of the lucky ones. Try not to fear. My treatments knocked the mets down
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I was barely able to walk prior to radiation to my sacrum. After each treatment I felt better and was finally able to walk without a cane. The pain never fully went away and I still have quite a bit of pain if I walk or stand for an extended period of time. My shopping days are basically over and forget about exercise, but no cane.
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Hi Philly, thank you. Your post is very informative and great to hear from an expert. I did try acupuncture after the neuropathy started. The practitioner put the needles in my scalp, fingertips and feet. I could only do 8/10 fingers - it was so painful. He couldn't understand why I had so much pain. I actually teared up and I have a very high tolerance for pain. The other areas did not hurt. As of now, I have permanent neuropathy in my feet and fingers which makes it tough sometimes to start IV's in my job. Thanks again for the explanation and will keep in my back pocket for other issues. 💕
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Thanks ladies for the reassurances, both of the possibility of being pain flare free and at how quickly I may (may) expect relief here. I never got Lasik because the thought of a laser near my eye was too scary to contemplate and now Ill just have a laser near all my major soft bits instead. I don't really have pain anymore on that side, its just stiff and uncomfortable and impacting everything else which then also becomes uncomfortable.
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Question for you bone metsters out there who also have lobular cancer -- what imaging technique have you and your docs decided is the best to follow these? I have lobular that is in my liver, and that seems to be settling down a bit on Ibrance. However, there have been some questions about whether or not I actually have bone mets. I pushed my MO to ask the radiologist to re-read my most recent CT because of his characterization my potential bone mets in one place as "I don't know what I'm seeing" and in another as "extensive mets in the spine" (I'm paraphrasing here). The possibility of bone mets is all new to me, and my MO and the radiologist are both saying "bone mets are hard to diagnose. To add to that, I have read that for lobular folks, bone mets usually show up as sclerotic and my MO is saying that means that they are healing. So I am just a little bit confused. Any advice is appreciated. Thanks
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Hi BevJen,
I'm not lobular although I strongly suspect there is a lobular component to my MBC given how it behaves. I have spent quite a bit of time thinking through the question of sclerotic versus lytic bone lesions. I think the challenge is the use of the term “healing". By their very nature, all sclerotic lesions are healing as the bone is responding to the cancer by laying down more bone to try to repair the damage. This is as opposed to lytic lesions that are eating into the bone. However, this does not mean the cancer is no longer active although that can be the case at times.
As you have indicated it is often difficult to figure out what is really going on with bone mets as scans can be inconclusive. Bone scans are useless for my sclerotic mets but CT shows extensive bone mets throughout my spine, hip, long bones, sternum and even the base of my skull.
My MO did not immediately react when the CT scan first described progression as he also said it could be healing. He said it can be difficult to tell if it is true progression. However, when the next scan also described progression with even more extensive bone mets he changed treatment. Now they are described as stable (although the skull mets were a surprise and we don't know if it's progression as they don't typically scan there - very rare... lucky me).
My theory on sclerotic mets is that it represents slower growing cancer which would fit with ILC. In this case the body has time to mount a defence against the cancer, laying down more bone to protect. I'll be interested to see what other lobular folks have heard.
Pat
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Dear Sadiesservant,
Thanks for that information. That's more of an explanation than I have gotten so far from my MO.
So have you ever had PET scans? Wouldn't the SUV values they show determine if it's progressing or not? If a higher value on subsequent scans, then perhaps progressing? If a lower level, then perhaps not? Just speculating here and trying to figure this all out.
I also see that you've had radiation to your bone mets -- what exactly prompted that? The radiologist is, for example, describing some very slight growth in T5 -- I'd like to blast that one with radiation, but don't know if the MO will go along.
Thanks.
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Dear Sadiesservant,
Thanks for that information. That's more of an explanation than I have gotten so far from my MO.
So have you ever had PET scans? Wouldn't the SUV values they show determine if it's progressing or not? If a higher value on subsequent scans, then perhaps progressing? If a lower level, then perhaps not? Just speculating here and trying to figure this all out.
I also see that you've had radiation to your bone mets -- what exactly prompted that? The radiologist is, for example, describing some very slight growth in T5 -- I'd like to blast that one with radiation, but don't know if the MO will go along.
Thanks.
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