If you are not Stage IV but have questions, you may post here
Comments
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Maryjv...I was 38 and had idc and dcis. It was in my lymph nodes. They gave me 3 months to live. That was November of 2009. Have hope! Have faith! You have a wealth of knowledge in the ladies on this site. And you have soooooo much support here too. Please try to just think about today. I know. It’s hard. But worrying about it is taking so much good energy from you that you could be investing in your 7 year old. I promise, you’ll be ok. There are ladies on here who are survivors 20+ years! Hold on to the end of that rope! And know...you are not alone!! Welcome
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HAPPY THANKSGIVING EVERYONE!!
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thank you for your encouraging words, I do try to stay positive and I know I am in Gods hands🙏 Happy Thanksgiving getting ready to enjoy this day with family
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Happy thanksgiving to you all as well. Maryjv we are happy you found us. We're all here for you!
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Hi all, I'm posting because I'm trying to find the link to a study or thread that someone posted somewhere on the forum earlier this year. It was an article about the different way that gastrointestinal lesions appear with ILC. I have a colonoscopy coming up and would like to print it out so I can be prepared to "educate" the doctor if needed. I've been searching but cannot find it, though I clearly remember someone posting about it, possibly in a stage IV thread.
If you know what I'm talking about, could you kindly direct me? I'm learning that we have to be on our toes as far ILC is concerned.
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My question is, what is "Stage V"? I was in conversation with someone this week who said her mom had been diagnosed with stage IV lung cancer, and then it turned to "stage V." Also there is a topic in the Stage IV forum about stage V something.
What is meant by that?
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Hi MountainMia, in breast cancer there is no stage V......after Stage IV there is only death.
Each cancer type has it's own way of numbering stages so perhaps there is a stage V in lung cancer, I don't really know.
Hi Whatjusthappened, have you check out the topic on the main site of BCO?
Love n hugs to you both. Chrissy
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Whatjusthappened, was it EV11’s July 17 post here in the stage iv Clinical Trial thread that you are trying to remember?
https://community.breastcancer.org/forum/8/topics/868597?page=16
MountainMia, there is a thread in the stage iv forum called Stage V MBC Fitness, but the OP (original poster) used the term to mean, in her words, “We’re doing fine, ready to live with this beast.” Personally, the term made me think stage V=death. But it is a great thread nonetheless.
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ShetlandPony, thank you so much for the redirect. That does sound like what I'm looking for, though I don't remember lurking on that particular thread, lol. Might be that it was mentioned elsewhere as well. I'll have to PM EV11 and see if she'd be willing to share.
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There is a teen in my life who's mom had a recurrence when the girl was 11 and died a year later. Fast forward a few years and kid is mourning big time. Afraid of loss. Afraid to feel. Numb. Mom and I were the same age for everything-birth, college, age of kids...too close for comfort. Freaks me out. My aunt died 7 years after treatment. My 7th year is coming up and I hope I live to see 8. I have no idea how to help her move through this. My kids are my everything. I'm sure this kiddo was her mom's everything. If you have any resources or tips could you PM me please? Thanks.
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Maybe a retreat or camp for children whose parents have passed? I wish my ex brother in law had done that for my nephew.
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Has anyone with Lung METs had PET Scans and/or Chest CTs that show Ground Glass Opacities in BOTH lungs and increasing/spreading between scans?
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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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