If you are not Stage IV but have questions, you may post here
Comments
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GreenEyes,
The jury is still out on this one, but my tumor markers started rising in May 2018. I had a CT and a nuclear bone scan. The result? Extensive arthritis in my spine, my hands, my feet, just about everywhere. No mets per that test. Repeat tests in October 2018 -- same read on the scans. Repeat tests in May 2019 -- well, maybe that arthritis isn't really arthritis, but no definitive answer about whether some of it was mets. At this point, my MO says I likely have bone mets (I also have liver mets for sure) but "bones are hard."
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hey ladies! What tumor markers are tested? I don’t think my moms MO does that. Is it a specific blood test?
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UCFknights,
I think MOs only generally test tumor markers with their metastatic patients. It doesn't look from the profile that your mom is that. What I've read is that the tumor markers (CA27-29, CEA, or CA15) are not at all reliable with non-metastatic patients. However, your mom's medical oncologist also probably reviews other blood tests and they can show if something might be brewing? For example, rising alkaline phosphatase, according to my internist, is a good reflection of possible bone metastasis.(Interestingly, none of my oncologists have ever told me that, but I checked it out and it's apparently true.)
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Several weeks ago, I felt two large lumps in my armpit. I had u/s of both axilla last Thursday, and wound up having biopsies at the same time. I picked up my u/s report yesterday and it says, "several pathologically enlarged lymph nodes, the largest being 3.3cm and 3.4cm." The impressions section says that PET/CT and breast MRI are recommended for further evaluation. Biopsy results should be available early next week.
My questions ... Assuming malignancy, should I expect the biopsy results to report ER/PR/Her2 status? Treatment plans depend on those statuses, right?
I've sent a note to my PCP asking her to order the PET/CT and breast MRI. Why would they recommend both? I would think the PET scan would pick up more than a breast MRI? I have a high insurance deductible ($8100 indiv) and don't want to get caught with having redundant, expensive scans, etc. On the other hand, if this is going the way it appears to be, I'll be meeting that deductible pretty soon.
Lastly, how and when did you tell your family and friends what's going on? I have three grandkids (17, 21, 25) that I'm very close to. I don't want them to worry needlessly, but I also don't want them to be blindsided. Any advice?
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MNSusan, sorry you find yourself back on BCO after all these years, and I hope you get a pleasant surprise from the biopsy results. If I understand correctly, you only had a fine needle biopsy of the nodes (as opposed to a core biopsy of a breast mass). If that's the case, even if the pathology shows cancer cells, it's unlikely that they will be able to determine the ER/PR/HER2 status, since they are only looking at cells floating in liquid. I think breast MRI and PET are fairly standard in cases like yours, and serve different purposes - the MRI is the most sensitive test to look at the breast and see if there are any tumors, where and how big they are. It's also very sensitive for abnormal lymph nodes. If it does turn out to be a recurrence, the MRI will be useful to guide your team to a place to biopsy and/or surgical plan. The PET/CT will look at the rest of your body to make sure there are no distant metastases. It's not as spatially accurate as the MRI and thus not as helpful in determining a surgical plan.
The decision on when to tell the family is a personal one. I told my sister and my then 6-year old daughter the day after I got the biopsy results, and let them know it was stage IV as soon as I got the PET/CT scan results a couple of weeks later (my daughter probably didn't grasp the gravity of the situation, but it explained why I wasn't going to get surgery and chemo, and let her know that it's OK to talk about it). I know my sister would have been upset to be kept in the dark and she's a physician, and I would have had a very hard time pretending everything was OK for my daughter. I'm not sure that's the best way to do it, but that's what felt most comfortable to me at the time. Best of luck with your tests!
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Thank you Piggy. I had u/s guided core biopsy. They took 4 samples from the largest node. Thanks too for explaining the difference between the scans. I guess I was thinking because I had bilat mastectomy w reconstruction (implants), there wouldn’t be much to see. It makes all sorts of sense that MRI would see the nodes better and whatever else there might be in there. I don’t know what to do about telling the gkids. Lots of thinking to do.
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Hi ladies, I have developed constant dry mouth and scratchy, phlegmy throat since last November (thank goodness no coughing and swollen lymph nodes). All these symptoms are not getting worse or better. I went to ENT doctor last week to have gastroscopy the doctor said my throat looked swollen and looked like it is from allergy. Can this be one of the side effects from my hormonal treatment (2.5 years of Lupron and Aromasin)? I saw somewhere online that Aromasin can cause sore throat. Thank you for all your input!!
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You can obtain hormonal data (ER, PR, HER2) from a FNA (fine needle aspirate) as well as from the core biopsy.
You might be confusing FNA with a liquid biopsy.
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SandyBeach, I had a fine needle biopsy (FNA) for a lymph node that found cancer, and when I asked about the ER/PR/HER status they said that they couldn't determine it because there wasn't enough material in the aspirate. They did a core biopsy of the breast tumor for that. You bring up a good point though - maybe it is technically possible to get enough material in a fine needle biopsy to do a full determination, and it just wasn't the case for me.
stephilosphy00, I don't recall anyone specifically complaining of a swollen throat from AI's, but general dryness does seem to be a fairly common side effect. If the doctor thinks it's allergies, you could try an OTC antihistamine like Claritin, Allegra or Zyrtec for a few weeks and see if it helps. Also, use of a humidifier at night might alleviate the worst of the symptoms if they are indeed caused by dryness.
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I'm seeing/hearing a lot of excited chatter about oral docetaxel and how it might be have fewer SEs and be more convenient for patients than IV treatment. That all sounds well and good but to the best of my knowledge most insurers cover IV chemo drugs differently than oral formulations of the same drug and I've not seen that addressed. Are any of you using oral docetaxel or in discussions with your MO about it? Is the reimbursement issue anything that's a part of the discussion?
Thanks for sharing any insight.
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Hopeful82014, right now oral taxols (oral docetaxel from Modra, oral paclitaxel from Athenex) are still in clinical trials, so the issue of cost has not yet come up, since the clinical trial sponsor provides the drug at no cost to the patient. Once they get FDA approval the companies will probably run reimbursement scenarios and price the drugs as high as they can while still ensuring that most insurers would cover them. I have no idea how much that would be, but my wild guess would be somewhere in the vicinity of Abraxane prices, unless the efficacy results really are much better than infused taxanes.
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Thanks, Piggy. I know my insurer doesn't cover any oral chemo drugs but have no idea whether others do. Perhaps the manufacturers will off patient support programs to help cover the cost once they come on the market (which is almost a given, it sounds like). Otherwise, it seems to me that some of the excitement on the part of the medical community is overlooking real barriers to use, which is sad.
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Hi, I had stage 1 IDC over 10 years ago.
On Thursday I am about to have tests to discover details of a mass in my heart.
If that is cancerous, would that be Metastazied from my breast? Or I guess they test it. Would it read as IDC or just a different kind of cancer?
I am getting a bit freaked out. I've been waiting 3 weeks....thanks for any thoughts, I think my theory is cracked...
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hello ladies,
I have had two issues come up in the past two weeks. I asked y’all a couple of thyroid questions and you were very helpful. My next test for that is tomorrow.
My other issue has been knee and hip joint pain both on the left side and only the left side. It is affecting my movement and slowing me down quite a bit. I talked with my Onc and he said cancer usually would affect both sides especially the hips. He seems to be leaning more towards arthritis, but of course I am concerned about bone mets and am confused about why it would usually be both sides. Is it possible to be only on the one side in two different places? Has anyone experienced anything like this? I have an appt on Thursday with a bone and joint doctor but just wanted to hear everyone else’s thoughts before I go in. I am thinking about asking for a MRI just to rule some things out
Thanks for listening!
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Lories, the pathology will tell if if BC metastases or a new cancer or a benign tumor. Hangin there
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Nano I have no advice. Hopefully someone here can advise you. Good luck.
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Nanomom11,
Did your oncologist suggest a bone scan? I would ask about that. A regular joint and bone specialist may not be able to tell you much about cancer. It's just outside of their lane for the most part.
A nuclear bone scan can at least pinpoint some of what's going on. It may/may not be able to distinguish between arthritis and cancer spread, but at least it's a start.
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See what they say thurs. Xrays will show if it's arthritis. If it isn't, a nuclear bone scan is an excellent idea. It shows if there is metabolic activity or not. No metabolic activity, no cancer.
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Hello everyone,
I would like to know if someone here gives me idea what bone Mets on the hips. Do the pain stay constant, worse, or come and go. Can you do strenuous exercise with the pain. I have feelings on bilateral hips but the X-ray show nothing and X-ray on lumbar shows pinch nerve and Dr treat it as back problems. I don't know if bone scan or MRI.
Thanks,
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Hi Houston,
I had mets in my left hip. I did not have any pain.
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Hopeful -- I have private ins thru the state Marketplace and my IV chemo was covered same as dr & hospital. Oral chemo is covered as prescription drug. In my case that means that they fall under the same deductible and OOP max. I turn 65 in a few months and will have to switch to Medicare. Drugs are treated separately from hospital and Dr and there is no OOP max for prescriptions. My oral chemo is so expensive that I'll be paying alot more annually when I have to switch. Each plan is so different, you should check cost of a couple drugs you think you might take just to compare.
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Houston - supposedly I have a met on my left hip - no pain, no idea it was there. Mets are usually to one particular point and the pain doesn't come and go or switch sides, if the pain shows at all. By the time met pain shows up its usually because its a fracture or the bone is in bad state to the point you wouldn't be able to exercise strenuously,
However, lower back problems, such as a pinched nerve, which could be from a narrowed spinal canal (stenosis), degeneration, arthritis, or slipped/herniated disk would cause pain in the lower back, and/or referred pain to the hips. Hip pain isn't necessarily from the hips, more often than not it can be generated from areas like the L5/S1, the SI joint, the glutes, or the piriformis muscle. Depending on what exercise you are doing strenuously, you could have some sort of mechanical issue that is impacting how you carry your body, leading to alternating hip pain. A physical therapist would be able to help pinpoint any oddities and help correct them.
A lumbar MRI would show the structure of what is potentially causing the back/hip pain, and you would want to speak to a neurosurgeon about that.
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I’m at the 5 year mark. My aunt died at year 7 and I’m hitting panic again. Since I done have mammoa to gram how do they monitor for recurrence other than a pain that lasts for two weeks? My cancer breast tumor location and shoulder socket have felt pain since surgery. For those with double mastectomy how was the recurrence found? As +++ I worry about brain and liver and chest wall. I think I could figure out lung Mets. Thanks
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hi. Metastasis is cancer spread to another organ hence mammogram has nothing to do with detecting it.
Don't be so sure you will detect lung metastasis as I felt shortness of breath and cough only very late in it, when my whole chest was riddled with them.
I would say liver and brain MRI and chest xray as the least harmful scans that would show well brain and liver. I am not sure what is good for mets in bones detection apart from bone scan which I think is related to quite a bit of radiation ..
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If you are asking about recurrence to breast tissue or a new primary - I think there is a more specific thread for that below the Stage IV threads.
For question about telling if you have mets - I'd probably been walking around for up to a year with them without knowing before starting treatment. It is what it is, other than pain (mine was back pain, but in the same spot where Ive had recurring problems for 30+ years), cough, or severe headaches you wouldn't know. The outcome is the same whether they catch it early or late. Finally, cancer isn't some sentient thing that understands statistics or genetics. Other than one instance of melanoma in my family there is no cancer of any type going back many generations. Look how that turned out for me. Just because your aunt may have died at year 7 doesn't mean you will. Instead you may be the one who gets to live a long and happy life -you've got a good start already!
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Was hoping someone from the [Jane McLelland protocol / COC protocol for STAGE IV members ONLY] could answer a question....
I am researching this approach and in reading through your posts most of you have some very detailed stats about your tumor/mass. My report is so incredibly basic in my mind, literally just shows what is in my profile. Where or how did you get pathology so detailed? I was thinking about sending off to MD Anderson or somewhere for a second opinion.
On a side note - you are all amazing with the amount of research and knowledge you bring to the table with this approach! Thanks in advance for sharing! -
Hi rlmessy,
Scan\biopsy reports have most of the details. You can ask your MO for your records. They normally also provide a foundation 1 test or something similar with MBC diagnosis. Some information the foundation report has includes which mutations you have and provides recommendations on what cancer drugs will work.
I'm not sure what testing they do now for early stagers. It was 17+ years ago for my initial dx and things have changed so much.
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Dear RLMessy,
I would post this question, then, on the Jane McLelland thread -- come on over. Folks there are very welcoming and share a lot of good into. Are you stage 4? Doesn't look like it from your published stats. Perhaps that's why you are posting here? That's the one thing that sends people over the edge on that thread.
I was originally diagnosed in 2003 and I actually saved my original pathology report (paper) along with all of my doc's notes. If you only know what you've posted, then perhaps it's because at that time, there were no patient portals, etc. With your 2019 diagnosis, though, you should have additional pathology. Contact the hospital where you had that surgery done and/or your doc from that experience, and they should have an additional pathology report.
What you may have also noticed on the Jane McLeland thread is that a ton of us have had Foundation One reports done. To my knowledge, you can't send an old path specimen to F1; it has to be a fresh sample. But you can ask your doc about doing a sample based upon a blood test and see what he/see says. The F1 reports are incredibly detailed and will reveal any mutations in your tumor that can help with selection of ongoing treatments.
Also, a second opinion is never a bad thing. You will need some additional info which will be determined by whichever hospital you choose. I would research and see if you can find out who specializes in your type of cancer (esp the papillary aspect). Make sure that you are getting a second opinion from an NCI/NCCN center (you can access lists like this online). It may require a trip to wherever you want to get the second opinion from, and then perhaps whoever you see there may work with your current oncologist.
Hope this helps.
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BevJen & Simone...thank you. I am not Stage 4 so that is why I posted here. Trying to be respectful and not highjack a thread.
There just does not seem to be alot of info on the approach that is as detailed and researched in the other threads about alternative treatment options. Plus a bit of stigma about choosing alternative treatments is out there.
I am interested because I lost a treatment option when I had a bad reaction to Taxol. And, I had planned to do complementary alternative treatments anyway.
Just having to rethink treatment plan and timeline due to the Taxol being pulled.
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Hi.
Has anyone experienced isolated elevated GGT levels? Mine were super high at 105 and then a repeat one month later was raised to 115. All other liver tests (AST, ALT, etc.) were well within normal range. I don't drink alcohol and have a BMI of 19. Any ideas?! Thanks, I appreciate this community.
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