If you are not Stage IV but have questions, you may post here
Comments
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Can a brain met present with visual issues? I have what appears to be a retina issue (floater, some flashes) but just wondering about reporting it to MO.
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I asked my Oncologist about this very thing. I wondered about the PET scan looking at basically the shoulders down. How would they know if you had brain mets? His answer was I would have to mention any changes inmy vision, recurrent headaches or any mental deterioration. After that they would do an MRI if warranted. Not saying you have anything, but it is worth a mention to the MO.
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Spoonie, my understanding is that ground glass opacities are not a common presentation of breast cancer mets, but they do sometimes show up for a type of slower-growing lung cancer. They are also often associated with sclerosis and inflammation. Your profile says you have MS, and you are allergic to ovarian suppression, so I'm wondering if they can be caused by an overactive immune system (I know they can happen in autoimmune diseases like lupus). I've looked through some of your other posts, and I'm floored by the amount of suffering you've been through. I hope that you get your long overdue break soon and that 2020 treats you much better than 2018-2019 did.
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Over the years, I have developed some floaters. I also have occasionally had both "eye migraines" which cause big vision distortions short term and a period of a few months where I sometimes had the flashes of light. I remember the first time I had them, I was on the phone w/ a friend and was asking her to "please tell me you see lightning". That went away.
All of this was a few years pre-cancer diagnosis and the flashes of light don't happen any more. I had an eye exam in 2017 and another last month and all is fine.
If you are on tamoxifen, that does have a possible side effect of vision changes also.
I would definitely mention to your med onc, but also a good chance that all is fine.
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Santabarbarian, I am not a doctor, but from my readings I gather that the vision symptoms from brain mets are more frequently double vision, narrowing of field of vision, decreased ability to identify colors and such. Floaters and light flashes can be a symptom of eye metastases, although, as you said, they are more likely to be a symptom of a retinal problem. An ophtalmologist should be able to tell the difference through an eye exam, but it wouldn't hurt to bring it up to the MO. I hope it's nothing sinister - although it feels wrong to be hoping for a retinal tear....
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Thank you so much for the fast responses! BCO people are so wonderful.
I am going to eye doc in 2 hours, & have messaged my MO as well.
I appreciate your help!
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SantaB - my ophthalmologist said flashers can be a precursor to retinal problems & I should call her immediately if I had those. As for floaters, I have one in each eye and she's not worried about those. Please do let us know.
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I went to eye doc. I have a very mild site of swelling on my retina but nothing emergent-seeming. He gave me his home number and the emergency # in case as its a weekend coming up, and said if it gets worse, call. He said it was fine to go in today for secondary exam or give it till next week (I am giving it to next week as it is not worse in last 24 hours).
I wonder if the eye exam I had Tuesday is responsible for shaking something loose or causing irritation? Or did my chiropractic neck work Mon maybe irritate a nerve and give me some kind of an ocular migraine?
Thanks for your support!
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may be just one of those things- something always happens for the first time at some point often for no apparent reason but ageing or accumulation of issues or just randomly ..
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My own eye/floater experience: I have floaters too and they started about one month before my breast lump appeared. Actually I was having floaters and flashers at that time. I went to my ophthalmologist and he said it looked like normal aging, nothing terribly abnormal. Then I was diagnosed stage IV and HER2+ so I made sure my MO scheduled a brain MRI for me. It was normal. About a year later, I had sever dizziness, so another brain MRI. Still normal.
I haven't seen my ophthalmologist again and I am overdue for a visit. My MO says if there were any mets to the eye, an exam with the ophthalmologist would detect them.
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Floaters and flashes are very common and also relate to the aging eye. Unfortunately they are also occasionally symptoms of something worse. But retinal detachment causes a lightening storm. Not just the occasional flash. I know Google is often seen as the enemy here, but it brought great relief to me with these symptoms. Better yet, visit your eye dr. But do NOT panic. I did and ruined a vacation in Mexico. Damn I wish I had had access to Google in Mexico.
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I found this.... implicates the chiropractic adjustment in retinal injuries!
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"Spoonie, my understanding is that ground glass opacities are not a common presentation of breast cancer mets, but they do sometimes show up for a type of slower-growing lung cancer. They are also often associated with sclerosis and inflammation. Your profile says you have MS, and you are allergic to ovarian suppression, so I'm wondering if they can be caused by an overactive immune system (I know they can happen in autoimmune diseases like lupus). I've looked through some of your other posts, and I'm floored by the amount of suffering you've been through. I hope that you get your long overdue break soon and that 2020 treats you much better than 2018-2019 did."
Thank you so much for the kind reply, Piggy99!
I really appreciate the support for a better 2020. I sure need it. It's been a VERY VERY rough year, plus with my 4 year old kitty dxd with Gastric Lymphoma last month, I'm doing the best I can just to hold it together. IF I have to add Lung Cancer to the mix in 2020, I really don't know what I'm going to do. That would be Cancer #3 in under 2 years. Le Sigh.
Hoping there will be a more positive explanation somehow for these newly appearing GGO's that have begun spreading in the past few months. I have a appt scheduled with my RO to see about her thoughts on whether or not this can "safely" be considered RADs scarring. Seems odd that it would be extending into my Right lung. I trust her opinion tremendously so I'll feel much better after hearing from her.
I did eventually find some helpful information on GGO's here, "Management of Ground Glass and Subsolid Pulmonary Nodules".
I'm also seeking a 2nd opinion from a Pulmonologist in Jan. I just really don't want to miss anything and sometimes I think our Breast Cancer team gets too focused on just BC and not other possibilities. When I read that GGO's in women who are Non-Smokers, in my age range of mid 40s, with previous lung scarring (RADS) being at higher risk than the average population for Lung Cancer (adenocarcinoma, BAC, AAH), it definitely makes me want to get a few heads in on the game so to speak.
Like you mentioned, which I hadn't really thought of, it makes sense that my MS could be playing a role in this. That is one of the differential diagnosis that can be seen, now that I've done more research. I see a specialist for my new dx of MS in FEB and will get their opinion in regards to my first PET Scan results. Hopefully I can chalk these GGO's up to one of the more benign reasons asap.
Thanks as well for the info about METS to lung not usually presenting in this manner, that was a huge relief to read. I'll take whatever good news I can, that's for sure. I'm on antibiotics right now to rule out possible bacterial/pneumonia/etc reasons for this uptake on my PET. I will be extremely happy to hear someone tell me that this isn't early/slow growing Lung Cancer! Fingers crossed that will happen in January!
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The lung section of my PET Scan report:
"Cluster of abnormally increased number of small to upper limits of normal left mid and upper anterior mediastinal lymph nodes which have low uptake. .... Mild pure ground-glass opacity in both lungs, greatest in the upper lobes, especially in the left upper lobe and lingula. Linear atelectasis and fibrotic change in the left upper lobe and lingula could be in part related to prior radiation treatment. Current involvement of right upper lobe and lingula not seen in prior imaging.....Mild nonspecific ground-glass opacity in the lungs could be inflammatory.... Mild fibrotic change left upper lobe and lingula may be related to prior radiation treatment. Follow-up imaging in 3-6 months recommended to monitor for progression or consolidation."
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I have had floaters since my 30’s and the occasional ocular migraine every 2-3 years
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santabarbarian- I had happen exactly what you describe in 2016 and flew to an ophthalmologist. I forget the exact diagnosis, but it is a normal occurrence as one ages. So, no worries. The flashes will go away and you will adjust to the floaty and not notice it. Hugs, Mary Jane
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Thank you Mary Jane! Seems to be improving!
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Has anyone had "arthritis" show in an X-ray but turn out to be mets?
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Has anyone had neuropathy that turned out to be bone mets?
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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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