Bone Mets Thread
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Thanks to both of you for the explanation of diffused mets. I was picturing something completely different, like no solid tumors, but rather swiss cheese all over my body. My typing was done using a palpable lymph node as there was no solid tumor in my breast. Onc explained it is like a spider web. As for tumor markers, I started in the 700's. After 4 weeks it dropped to 230, and dropped smaller amounts ever since. But my last test it went up only 7 points, but I was disappointed. Wanted so much to get to single digits (its now at 117). Anyhow, hoping it was the result of dehydration and will make sure to be well hydrated before my next test.
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Baywitch, TMs are odd little markers, so please don't get discouraged by a count of 117. Some of us will probably never see single digits even though we are doing exceptionally well. My CA 27.29 was 947 at diagnosis, and it has never been lower than 133. For awhile I hoped that my next result would finally hit double digits, but it just hasn't happened. My MO told me that it is not the number but a trend that matters. A significant upward trend is a reason to scan to look for progression. A downward trend or stable results usually mean response to treatment or stability. Although I have never seen double or single digits during the three years since my MBC dx, I am doing very well, and I feel great. Don't dwell too much on your TM. Think of it as a reference point and nothing more. Being well hydrated might keep your results from slight fluctuations, but 7 points one way or the other is not a significant change.
Hugs and prayers from, Lynne
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Awesome news about a stable scan! Prayers that they continue and continue and continue. Wanted to add to the types of bone mets. When I first had my onc appt and they ordered scans, a bone scan and CT were done. My bone scan and CT came back clear because my bone mets were Osteoclasts, which are the lytic ones (Swiss cheese) and the ones that show up are the Osteoblasts, the bone growth ones. I had a PET right after that because my adrenal gland lit up and onc wanted to check that. All my bone mets showed up on the PET. My tx have reduced the activity in them, but they haven't gone away yet. So mine are partially sclerotic, healing over.
As far as TM's, my onc has never done that test. She says she feels that a lot of times it's not accurate and won't change my tx plan. I've always wondered why so many get their TM's and I don't though.
Take care everyone and Happy Mother's Day weekend to all the moms here!
Jenny
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Jumpin for Joy at Leapfrogs great.news
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Great news Leapfrog, happy for you, will join in that dance!
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Great news Leapfrog! Now you can relax and enjoy the weekend :-)
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LOL - great picture Maire67
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Great news, Leapfrog and Lulube!! We seem to be having a little stable party and I love it!
Saw my onc on Wed and talked to him about my climbing markers. He said my scan was quite good so he wasn't going to worry about it. I laughed and said I was glad one of us wasn't going to! He also said sometimes there are more cancer cells floating around but not forming tumors and the hope is the meds will keep them from doing that. And Ibrance/Faslodex has so far for me so I'm going with that.
I also found interesting that he put me back on 125mg of Ibrance after being on 100 for a few months. He thought maybe the lower dose wasn't working as well for me. Only time will tell.
Had my second esophagus stretch yesterday. Pretty dang sore this time, but doing well. My doc wants me to go one more time, but I have cataract surgery in a few weeks so the stretching will have to wait. I want to see.
And lastly, it was exactly one year ago today I was driving to the opening of a show for work, turned my head to make a turn and suddenly saw two of everything. I was so shocked and scared I continued on, sat through the entire show, went to the opening night party then drove home with one eye shut so I could see. I stumbled through the next few days, took my Mom out on Mother's Day, then finally went to my PCP who immediately sent me for an MRI which showed the tumors in my neck and skull. And the rest, as they say, is history....
Couldn't have done it all without you guys, even though I didn't say much. Thank you, thank you, thank you.
E
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Hi ElleOnWheels. I don't know you well, but that is one heck of an intro to cancer. You have the same attitude to all these symptoms ... absolutely no time for it. Can't be happening, too much to do. I also know how you feel about this group. It's impossible for me to imagine getting through this without y'all.
>Z<
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Thanks everyone for your congratulations. LOVE the frogs leapfrogging, Maire!!
Lulubee, that's another interesting point you raise about TMs and it makes total sense to me. It's great to be able to add all these little snippets. Personally, I like it when I have a registrar for my appointment if my oncologist is too busy and my appointment is straightforward (I'm at a trial at a public hospital) as registrars are still very keen and love to impart their knowledge. However, this last time it was my new consultant who gave me a heap of information. Actually, he also gave me a new way of looking at my situation. Because I'm currently stable and my only real issue is pain, which is fairly well controlled most of the time if I don't overdo it (a few qualifications there but basically I'm ok), I took a lot of positive thoughts away from the interview. He told me he's had a lot of patients with hormone positive breast cancer who have lived out their natural life span while on hormone therapy and he's extra positive now that Ibrance is available in Australia, although still very expensive - hopefully not for long, as Pfizer and the Aus Government are negotiating over a subsidised price right now. They have already put Kisqali on the subsidised list. But back to my point! After our chat I came away with the feeling that no longer am I a semi invalid, which I'm ashamed to say I think I was thinking, if you get that, but I can still realise some of my ambitions albeit with restrictions. He would still prefer that I avoid crowded places like shopping centres, cafes etc because my neutrophil level is always low but, with my friend the internet, there are still interesting things I can do to satisfy my need to achieve, so I've signed up for a course with the Open University. It will probably take all of the allotted time to complete the course due to fatigue and "off" days but it will give me a new purpose and challenge.
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Baywitch...as others have said, please don't get concerned about a change in numbers in your tumour markers. I'm well known for quoting mine were 900 when I started on Ibrance and Letrozole and they plummeted cycle by cycle down to 390, by which time I was certain I would have this thing licked within a few more months (obviously I was in denial, we don't get it "licked" when we're Stage IV but we can remain stable for a long time). Then suddenly they jumped from 390 to 450 and from there to 550 and since then, about eight months ago now, they've jumped around between 450 and 580. I've learnt they don't mean anything of significance so I don't worry. I leave that to my oncologist and as long as scans are clear, I take no notice of tumour markers. There are so many variables that can affect them. If mine increased by 7 points it would be unnoticeable. I'm not judging you for worrying, we all do that, and I did as well until it continued to happen cycle after cycle but scans were still clear.
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I was wondering if this has happened to anyone else.
After a PET scan and a CT scan without contrast determined my wife has a bone met to her femur, yesterday we received an email telling us they looked at her CT scan again and they now need my wife to get an MRI with contrast this time. To my surprise when I called to ask why (thought they might have spotted more mets), they said the met doesn't look like a standard one would. This was a shared opinion among the whole team of oncologists and even the radiologist had his doubts. The doc I talked to said had they not known she had BC, that would have not been labelled a met.
Thoughts?
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Daniel, sounds like the doctors want to make sure that the finding on the femur is a met before classifying your wife as Stage IV and treating her as such. Lots of things can light up on a PET as metabolically active lesions that are not necessarily mets. I don't know if MRI with contrast would be able to give you a definitive answer - that's something you really need to press the doctor on. I would have thought that only a bone biopsy could determine for sure if a single lesion is a met, but I'm no radiologist.
Depending on the difference in the course of treatment between met to femur/no met to femur, it may or may not be hugely relevant to find out for sure. If they are planning to go with aggressive treatment (surgery, radiation to the femur, some type of chemo and/or hormonal treatment) regardless, as some institutions do for oligometastatic patients, then it's not absolutely crucial to know (of course, it would make an enormous difference for your peace of mind for the many years to come). If they are taking the aggressive options off the table in case the femur lesion is a met, then they absolutely need to be certain that it is in fact metastatic disease.
You are in a really tough spot right now, between a sliver of hope that your wife is potentially not stage IV and the fear to hope too much. I hope that you find the answers soon and that they come with hope.
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Thanks, ladies. I feel much better now. I was just expecting, like Leapfrog, to see another dramatic drop and was surprised when it didn't. My onc warned me not to expect it after the big drop I had initially. Otherwise, I feel pretty good, so I think I'll take a break from this dastardly disease and forget about it for now.
Kathy
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Piggy, I was wondering about your saying ‘lots of things can light up on PET as metabolically active lesions that aren’t mets.’ I can’t say that I’m in the know about this and would like to hear what some of those other things are, if you wouldn’t mind further explaining.
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Hi Daniel,
Early March I had a PET/CT scan, which showed activity in the left femur ONLY. The oncologists and radiologists were therefore unsure about the correct diagnosis (BC met, new different kind of tumor (possibly haemtological) or something benign e.g. infection). I was therefore referred to specialists that perform bone biopsies, - that was mid March, and received the result after Easter. Waiting for clarification was tough, switching between hope and anxiety . Early April it was confirmed that it was a BC met, and treatment could be initiated. Clarication helped me get on with things.
Waiting is hard, I know, but I am guessing, like in my case, they want to be sure. A single met to the femur isnot that typical, it could be something else, and either way, it will define the need for treatment and if so, the optimal treatment plan.
I hope your wife and you soon get an answer.
Meja
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Divine Mrs, my understanding is that a number of things that are not cancer can show up as FDG-avid on a PET/CT scan, including infection, inflammation, autoimmune processes, sarcoidosis, and benign tumors. I remember that the sign-in sheet for the PET asked a number of questions about recent injuries, illnesses or surgeries, presumably to give the reading radiologist a heads-up that something other than a metastatic lesion might show up. I think one of the ladies here mentioned that her buttocks where she gets Falsodex tend to light up on PET. Doctors sometimes use PET scans for intractable fevers because localized infections can show up as hot spots.
In terms of bone lesions, both healing (for example a healing fracture) and degenerative processes can appear as FDG-avid on a PET scan, and it's hard to tell for sure which is which. My diagnostic PET said, for example, " an additional focus of FDG avidity within the right sacrum has an SUV max of 5.8 but is directly adjacent to the sacroiliac joint and may be degenerative in nature". It didn't say that about other lesions, so I think the location of the others made it less likely that they would be degenerative.
The articles below are a quick sampling if you are inclined to read more - the first one is an overview of false positives specifically in cancer patients undergoing treatment, and the second is a case study of multiple fractures showing up as potential mets on a PET/CT.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32593...
https://pdfs.semanticscholar.org/b9fc/17db0e597171...
I think that the case study scenario where there are multiple scattered FDG-avid lesions in places not normally associated with arthritis or other degenerative diseases that turn out not to be mets is less likely to happen (which is probably why it got published). Probably even less likely to happen in the absence of previous trauma (the patient in the study had been in a car accident). But for a single lesion I think the physicians should try their best to confirm that it is indeed a met, especially if it would alter the course of treatment.
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Meja and Peggy, thank you for replying.
My wife has already started hormonal treatment, so they havent picked the aggressive route. She has already been staged, thats why this is sounding odd. After your posts, I am debating whether getting an mri is the right way to go about this vs. getting a biopsy of the tissue. That sounds like it would put an end to it in a more definite way. What if the mri is also inconclusive!? Is biopsying bones too invasive and/or to be avoided? I might just bring it up to the oncologist.
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Leapfrog, overjoyed at your news and glad to hear you're planning your next adventures. Way to seize the moment!
Elle, interesting news about going back to 125mg. I have a big trip planned in August and negotiated a reduction to 100mg. Aha, I thought, this is my in for the reduction (which I've been waffling about). Then my MO said, yes, 100mg it is for August, then we'll pop right back to 125mg. Dag nab it! If I really notice a difference, that may tip the scale to pushing for the lower dose.
Hope everyone has a wonderful Mother's Day. I don't have kids, but celebrate my mom and the mom I am to my nephews and my friend's kids.
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Leapfrog - looking at things that way will result in great improvements in QOL as well as outcomes. I am glad you shared your new perspective.
PIggy - I broke a lot of ribs in a bike accident last year. They were reported in PET scan as new lesions, even though I told them about the fall. They are all gone now. They were just broken ribs. So, yeah. PET scans have false positives.
>Z<
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Hello all strong ladies out there, I'd like to have your opinion about my treatment plan.
I was diagnosed with Stage IV de novo BC (ER+ PR+ Her2 -) with mets to hip ribs spine and scapula. I took 4 rounds of AC chemo and then 4 rounds of taxotere and my PET showed partial response after both.
My Onc now is considering hormonal therapy, and as I'm Perimenopausal (53 years), he decided that I should take Tamoxifen for 1 year till my menopausal status are confirmed then switch to femara.
I don't know if that's correct as all I read was that I should have ovarian suppression with Zoladex and femara right from the start.
Also I'm concerned with changing tamoxifen after 1 year even if it's still working.
What's your opinion and should I seek the help of another Onc. ?
Thank you so much ladies.
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Tropa- Always, always get a second opinion. I was diagnosed at 48, had chemo, which put me into menopause, and went straight on to exemestane. Assuming they follow your estrogen levels carefully, you could go onto Ibrance-Femara firstline
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Tropa - If you have doubts, get a second opinion. They can determine your menopause status now from bloodwork. I don't know why one would wait a year to determine it. So that is an odd statement and not a reason to put you on tamoxifen vs letrozol. Tamoxifen may be the best strategy here, but that is not the reason. When I am getting incorrect justifications from a doctor, I become skeptical of everything. Second opinion?
It's not a crazy plan they are proposing, just not well explained. That is still a problem.
>Z<
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Z, you made me laugh with your insight. I AM too busy for this crappy disease. I just keep plowing on... makes me worry for my sanity, or lack thereof!
Jaylea, I'm kinda bummed about going back up to 125 but truly didn't notice much of a difference. Maybe a bit more fatigue. We thought it may be affecting my swallowing issues but that was not the case. Hey, if it works, I'm all in!
Happy, happy Mother's Day to all you amazing Moms out there. My children have 4 legs... but I still have my mom to celebrate (she's 87) and many friends. Have a wonderful day!
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As far as the menopause issue---I read that in order to classify someone as postmenopausal you have to look at blood work AND not having a period for 1 year. Correct??? I don't know.
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My estrogen level is like 55 but my FSH is high, so he said that I haven’t reached menopause yet.
Do you think it’s reasonable to be on Tamoxifen for a year then switch to Femara ? I know I should stay on a drug till it fails me before I can switch to the next one. Or correct for me ?
Is Zoladex then Femara and Ibrance an option for me ? Have anyone been on that combo ?
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Bloodwork showed that I was not in menopause, so they put me on Lupron to suppress ovarian production of estrogen. Then I started letrozol and Ibrance as a first line treatment. This is pretty common. It doesn't sound like you are menopausal either, but the question of tamoxifen vs letrozol/ibrance is subtle. They are both reasonable options. Again a second opinion at a major cancer center would be of great interest. They need to take into account the specifics of your cancer and your treatment history. Not an easy call without knowing your full medical history.
I guess I don't know for sure if they could determine positive menopause status from bloodwork because, in my case, I was not menopausal, so I should not have commented on that.
>Z<
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Serum estradiol and FSH(follicle stimulating hormone) can be used to help determine menopausal status. They are used in conjunction with what's going on as far as menstrual cycle, etc. The levels will vary in each individual. I think that my MO ordered an Estradiol when thinking of switching me from Tamoxifen to Arimidex. But then along came Mr. MBC and I went on to the Ibrance/letrozole. Best, MJH
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Tropa - I would get a 2nd opinion for sure. It seems more common for MOs to go straight to an AI with ovary suppression than to start tamoxifen and switch when you are naturally post-menopausal. Let’s say all is well on Tamoxifen, then you switch to an AI and the things stop going well... do you then go back and re-try Tamoxifen? The tamoxifen then AI transition seems to be more common in early stagers than with MBC. Sounds like matters are a bit confused since you presented with MBC so he is doing a combo of early stage treatment (with the hard core chemo) and MBC treatment. And why no Ibrance if you are Hormone +
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Z, thinking of you and keeping you in prayer still! Big hugs!!!
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