Robin Grant8 said:feralridge3, rapidseal40—could you both let me know how the surgery went? Thanks. 😁
I honestly have nothing to complain about. 😉 It’s been six months since my surgery, and I have a follow-up appointment next week. I was hospitalized for three weeks. There were no extreme enemas or fasting required. 😍 The procedure itself wasn't even that long; they get you back to your room quickly and expect you to be up and moving almost immediately. To be perfectly honest, it felt like child's play to me, considering I've already endured two brain tumor surgeries. 😲 You won't be stuck in the hospital for more than a week. You receive a list of necessary tests and can just complete them in your own city. If there are no complications, they usually operate the very next day after hospitalization. In my case, I was operated on a Monday. I spent the weekend at home and returned on Monday to handle the dressings and the paperwork.
They gave me analgesics, though I didn't bother taking them. I had some minor discomfort, but I opted out. For a little while, there was some fluid draining from my ear, but that stopped after a bit.
You really have to be careful not to let water get into your ear when you're washing your hair. They told me no swimming pools and no soaking in baths. For a period, my ear would "pop" every time I opened my mouth. My ENT surgeon assured me that this was completely normal. That popping sensation has since subsided. At my last check-up two months ago, he mentioned that everything had healed well—at least what he can see, anyway, since the curvature of the auditory canal makes it difficult to view the entire eardrum.
As for hearing loss, I can't offer much insight. I am gradually losing my hearing due to radiation treatment for my brain tumor. 😢
Angela Wright said:It really depends on how you define "healing." My mother has actually beaten four different carcinomas over the years without a single recurrence—until this current breast cancer issue. Personally, when dealing with malignant diseases, I wouldn't obsess over the concept of a total cure as much as I would focus on survival. If by healing you mean remission, then yes, that happens during the process, but there is absolutely no guarantee that this crap won't come back to haunt you.
I’ve heard just about every theory under the sun since I entered this fight back in 2005. The bottom line is to live a high-quality life and hope things improve... as for what comes next, God only knows.
That is essentially my mindset. Acquaintances frequently ask me if I am "cured." Usually, I tell them that I can't be cured; I simply live with it and see how far I get (it's been six years so far). Many people fail to grasp that this isn't like recovering from a broken leg; it is an ongoing coexistence with malicious cells that could resurface at any moment. 🙄
It took me a long time to finally start relaxing and somewhat acclimating to this uninvited guest who can ring the doorbell at any second and say, "Hey, I'm back." 🙂 I will say that seeing a therapist has genuinely helped. I don't fret quite as much about the future anymore; instead, I strive to live day by day. If something is out of my control—like corporate restructuring or layoffs at work—I don't panic or exhaust myself over it. I just tell myself: whatever happens, it isn't worth sacrificing my health for. It also helps that I am nearly deaf; people tend to take every story or opinion they hear at face value and live in constant fear because of it. I remain calm simply because I don't hear half of it. 😍
Honestly, all this bullshit I've been through has brought some good things into my life too. 🙂
First off, I have to say that both my mother’s results and my own look quite good. 🙂
My mom —she’s battling breast cancer with bone metastases—has completed 12 rounds of chemo and hasn't had radiation yet. She was in her second month when she went for that bone scan (I can't recall the technical term), and the report shows that the larger clusters of metastases have shrunk or split up, while some smaller ones have vanished entirely. I assume this is the chemotherapy working its magic, but I find myself wondering if these improvements will hold steady or if they're just temporary. Angela Wright, have you ever heard of a single shining example of someone actually beating this?
Mom has completely overhauled her diet—cut out all the sugar—and she's been in such high spirits since getting these results. She also underwent a CT scan of her head because she’d been complaining about headaches and feeling like "something wasn't right upstairs." We have the report and are just waiting for an appointment with a specialist. To be honest, most medical reports look like gibberish to me; I was staring at hers like it was written in ancient Greek, but apparently, it’s positive since every single line noted "normal findings."
Honestly, I wouldn't even be surprised if she pulls through. This is her fifth bout with cancer—breast, uterine, melanoma, thyroid, and now breast again. She is one tough woman.
As for me, I’ve started going in for regular checkups. Next week, I’m heading to see a neurosurgeon with my MRI results. The report itself came back clear, though we still need the neurosurgeon to give the final word.
I’ve survived six years so far. At this rate, I should probably live long enough to finally pay off my mortgage, and until then... well, there's plenty of time. 😍
boldhound99 said:Hey... I'm reading back through this old post of yours and honestly, it feels like I wrote it myself... how did you end up fixing your hearing problems in the end?
I feel exactly the same way. 😢 It is genuinely, deeply frustrating.
Grace Diaz86 said:The luxury retreats were meant for healing, while Suburban Springfield is just a dump—unfortunately.
And the waitlist is endless; they don't even take anyone in for three weeks. It is just pure misery. 😢 I have been looking into private assisted living facilities that offer palliative care for my mother. $1667 Every month, it costs about 😲
Is anyone else actually using this stuff? I’m trying to figure out the best way to get my hands on it outside of a standard pharmacy. Right now, I’ve been taking the 750mg version, which I order via email through an American distributor. I placed an order for two bottles over a month ago, and I've been going back and forth with this woman via email, but she keeps giving me the same old line—that their supply can't keep up with demand and they'll ship mine as soon as they can. I won't go into the full, tedious saga of this entire ordering process, but frankly, the whole thing smells fishy to me. Anyone else?
I’m going to switch gears here, because this conversation has drifted far away from the brain tumor topic. I mentioned a long time ago that something else would likely get the better of me before a brain tumor ever could. 😍
It is incredibly difficult to fully shake off fear; sometimes it just clings to you, as persistent as a mosquito. 😁 I try my hardest to keep it at bay, along with any negative thoughts, though I admit I don't always succeed. It is a good thing I am seeing a private psychiatrist. ☕ It really helps.
The issue weighing on me right now isn't the upcoming eardrum surgery, but rather tomorrow's gastroscopy. I've been having some issues in that area, and my paternal grandmother passed away from colon cancer when she was only in her early thirties. I didn't sleep well last night. I spent the hours wrestling with these dark, negative thoughts that constantly spiral toward the idea of falling ill. I try to push them away, but they just keep circling back. 😢
On top of everything else, this gastroscopy is really weighing on my mind. I suppose I'll get through it. 🙄
rapidseal40 said:Here is another issue regarding a perforated eardrum 🙂. My perforation is actually fifteen years old; I got it from a blow to my left ear, and right after that impact, my hearing dropped. I wanted to go diving so badly, but I couldn't because of it. To be honest, I avoided seeing a doctor for years because I have this deep-seated anxiety whenever I have to deal with medical professionals. Since then, I've dealt with frequent ear infections and pain. Eventually, you just have to face reality, so a few days ago, I finally saw a specialist. He performed an audiogram and examined my ear; apparently, there is a significant hole, and my hearing loss is around 15 decibels. I am not entirely sure if that qualifies as a major loss. He recommended surgery, and I agreed, so I went to the hospital to schedule a date. What gave me pause was when the doctor mentioned—strictly because the law requires him to disclose it—that there is a less than 1% risk of total hearing loss in that ear during the procedure. He emphasized how rare that is, but still. I am wondering if anyone else has heard similar things. The surgery would be done under general anesthesia. The main reason I want to go through with this myoplasty is that the doctor told me I’d essentially have a "new" ear, allowing me to dive again and experience true stereo sound 🙂. If anyone has any insight or advice, I would appreciate it. Thanks
You see, you see, they didn't tell me the part in bold. 🤷 I am currently waiting for my surgery; my appointment is set for four weeks from now. If I had been hesitating before, I might have gone back and forth on whether to agree to this, but those doubts are gone now. Ever since the temperatures dropped, it's been nothing but trouble. My ENT surgeon told me he guarantees an 80% success rate for the patch, and the rest is up in the air. I have a narrow and unusually curved ear canal. Oh, and just to clarify, my eardrum didn't rupture; I simply have a perforation. 😢
Am I understanding this correctly? If I already have a specialist at the general hospital, does that mean I can't get a referral to see someone in Chicago? I'm talking about follow-up appointments with an oncologist I've been seeing for five years now, and I would really love to stay with him. If I'm forced to do my checkups in a place like Des Moines... that's going to be awful. It's hard to believe they only have one oncologist working there, and even then, he was mostly being covered by an internist. 😕 It isn't that they wouldn't accept an oncologist, but from what I've heard, they simply don't have any available.
I make it a point to regularly assist those who are clearly struggling with physical deficiencies. Now, whether these individuals are genuinely oblivious or simply choosing to remain silent, I honestly can't say. For the last few years, there’s been a woman stationed near the hospital entrance holding up signs, practically shoving them under everyone's noses. I can't recall if anyone actually stepped up to help her. Personally, I found the idea of just handing out cash at a medical center to be quite foolish; after all, healthcare isn't cheap.😢
Angela Wright said:It doesn't necessarily mean she's weak; rather, that kind of attitude toward the outside world is a sort of defense mechanism. You know, they love to dramatize things and act out, but deep down, they truly want to get better. My Mom was just like that.
This is one hundred percent spot on. Take my Grandma, for example—she complains and accepts help, but then operates on this principle of "poor me," sometimes even refusing assistance just so she can stay the protagonist in her own little drama. Since all of this weighs heavily on me, I’ve had to create some distance because the negativity was starting to take a toll. Ironically, since getting sick, I’ve actually become my own top priority. I am fighting for myself the best way I know how; it's my life, after all. She gets to decide how to live hers, too. I found a method that works: every time she would start overwhelming me with how miserable she was and how much I was hurting her, I would simply "cut her off." Once she realized she couldn't play those games with me like she does with everyone else, the constant whining started happening less and less. It sounds harsh, I know, but like I said, I have to put myself first.
As for my brain tumor... well, it's gone. 🙂 I’ve had my checkups, and the MRI looks good. Since it's been five years now, I'll just go once a year for monitoring. This whole process drove me crazy twice before, constantly hanging around hospitals every single time. Plus, I still need to deal with that hollow feeling in my ear. I'm setting up an appointment with an ENT surgeon in about ten days.
Looking back after five years, I can say that the tumor and the fight for my life actually brought a lot of good things with them. I discovered parts of myself I didn't even know existed and realized certain (crucial, I believe) truths about life. I'm still putting the "puzzle pieces" of my mind together, but I finally feel—regardless of any psychiatric "depressive episodes"—that I'm moving in the right direction. I've realized just how much impact the mind alone has on quality of life, specifically regarding the alignment of conscious and subconscious thought. When I think about who I used to be, it's no wonder I ended up where I am. ☕
And it really is true: help yourself, and God will help you. There’s one more thing I wanted to mention. It's such a shame that doctors who provide actual emotional support—even just through a few words—are so rare. During my darkest moments, I often thought back to what my former oncologist (who is retired now) told me. When I asked him about the prognosis for my specific type of tumor, he simply looked at me and said, "You're a fighter; you're going to make it." I will never forget that. I only wish I had seen him before he retired so I could thank him personally for those words. That happened during my second round of chemo, back when I was scrambling to scrape money together for Temodal. It just goes to show: a few words mean everything when they are spoken sincerely and at the exact right moment. 🙂
I'm sorry this topic is so somber and heavy, but I truly admire you, Angela, for your desire and persistence in trying to help others. 🙏🙏🙏
My mom came home from her oncologist today feeling completely overwhelmed and confused. 😕 The report says:
... we realized that E-cadherin was incorrectly dictated as positive when it was actually negative, which would point toward invasive lobular carcinoma of the breast....
Honestly, if they had just put a comma after "negative," things would have been much clearer. 🤷
Anyway, she starts chemotherapy this Wednesday, and they'll be running it alongside radiation therapy.
Angela Wright said:Just give whatever support you can, and make sure you're doing it solely for your own sake—for your own peace of mind and mental health. Don't leave any room for yourself to regret it or feel like you're being blamed for anything later on. And yes, prioritize yourself first and foremost. Everyone fights their own battles. There are countless ways to offer support without overextending yourself beyond what's necessary or even possible. You mentioned your brother is healthy and that you two are close, so it’s only right that he’s the one stepping up to drive, cook, and handle the logistics. Keep staying brave.😉🙂
That’s actually my goal here—to help as much as I possibly can. I honestly could be doing so much more if I were able to drive, but because of my epilepsy, the law won't allow me to. Though, in all honesty, it wouldn't even matter much since I don't feel capable of it myself. It’s just a shame we live on opposite sides of town. My brother is heading out this Saturday; he lives and works about 200 miles away. He'll be staying here for about a month in total. His boss gave him the time off to help out with his mom. 🙏 🙏
Angela Wright said:The one thing you can actually believe in—the one thing you have to—is that she’ll fight with everything she’s got, heart and soul. That’s the only certainty. In this life, there are no guarantees for anything else. If those radiation beams hit her bones, they'll stop eventually. What matters most is ensuring there's a response to the chemo when the time comes. Just be there for her. Be her support system.
It isn't easy being a pillar of support for someone who treated me pretty poorly growing up, which only got worse after she remarried. My brother—well, my half-brother—gets all the affection because she treats him so much better, something she admitted to me just a few years ago. My feelings toward her are a complete mess. Our relationship is nothing but misery; there's zero closeness here. 😢 Most of the help I provide is strictly financial.
Angela Wright said:I hope you're doing okay and that aside from your ear, everything else is fine. You really are an incredibly resilient woman with that diagnosis; you've got such grit, both mentally and physically.
My former oncologist (he's retired now) once told me, when I asked about my survival odds, that I would definitely make it because I'm a fighter. I held onto that thought during the darkest moments. That was back when I first started saving up money for Temodal. Though, I suppose "grit" is a pretty subjective term. 😉 I'm actually considering seeing a private psychiatrist. This whole situation is incredibly stressful for me, and I'm terrified of my tumor returning. 🙂 After everything I've been through over the last five years, I decided I needed to do something for myself... I realized I am the priority. Me first, everyone else second. But now, that resolve is wavering. I'm torn between whether I should "die" for her or stick to my guns. 😕 I am truly terrified of a recurrence.
Yes, my recent check-ups were clear. The issue is this hole in my eardrum. They won't say for sure if it's a side effect of the radiation. Because of that defect, I've dealt with two severe throat infections. I'm waiting for an appointment with an ENT surgeon and some diagnostic tests. Regardless of what the tests show, I'm going to insist on getting that hole patched up. I don't want to deal with constant infections and swallowing antibiotics all the time.
I honestly don't even know where to begin. 😢 My mom just got home from the hospital; they had to perform a mastectomy. She saw her surgeon yesterday, and she’s heading to the oncologist tomorrow. It turns out the cancer has already metastasized to her bones. 😢 For months, she kept complaining about this intermittent pain in her hip and knee. Her primary care doctor sent her in for some imaging and then referred her to physical therapy. Things actually seemed to get worse during that time, and I kept nagging her to stick to her exercises, but she just wouldn't 🤦 I had no idea that breast cancer frequently spreads to the bone like this. The absolute worst part is that she knows exactly what this looks like, because about 15 years ago, a very close friend of hers faced this exact same diagnosis. As of right now, she seems motivated to undergo treatment—or at least, that’s how it appears to my brother and me. Generally speaking, though, she is such a pessimist that, frankly, I’m struggling to have faith that she’ll pull through, especially since this is her fifth bout with cancer. 😢
I’m honestly at a loss for words here. 🤷 I’ve been scouring the internet, but I haven’t been able to track down my mother’s official pathology report, which just arrived two days ago. 🙂
carcinoma lobulare solidum
I am reading up on various types of lobular tumors, but I cannot find any mention of this "solidum" subtype anywhere. The literature says these types make up less than one percent of cases, but if it isn't even listed, how prevalent is solidum really? 🤷
The fact that it is invasive is deeply unsettling. For now, my mother is maintaining a positive attitude. Her surgeon mentioned that this is a rare variant of carcinoma, so I think I’ll just tell her that I couldn't find anything helpful online. She is heading into the hospital this Tuesday, so we will simply have to wait and see what the next steps entail.
Angela Wright said:Once the pathology report on the excised tissue comes back, they'll finally know exactly what they're dealing with and how to proceed. I assume this initial diagnosis was just based on the biopsy, and we all know how often those can differ from the actual surgical pathology. You certainly have every right to expect some clarity.
My mother didn't mention anything about a biopsy. 🤷 It sounds promising over the phone. My congestion cleared up and my throat stopped hurting, so I’m planning to go see her this Sunday.
Here I am again. 🙄 It isn't actually about me, it's my mother. Exactly 25 years ago, she had a breast removed due to carcinoma. She has always been diligent about her check-ups, including this year. This past Monday, she came home with her test results, called me immediately, and told me she has to undergo surgery. I scribbled the diagnosis down on a scrap of paper, but I can't seem to find it anywhere now. 🙄 Basically, the Latin terminology refers to breast cancer (I did a quick search online), and the suffix—if I recall correctly—was something like III a-a. I am assuming those Roman numerals indicate the stage. So, the timeline was: Monday, results arrived; Tuesday, she was hospitalized; Wednesday, pre-op prep; and today, the surgery took place around 2:00 PM. By 5:30 PM, she called me sounding quite cheerful, saying they had successfully removed that little lump. Honestly, the brevity of the whole procedure leaves me feeling a bit confused. 🤷 The surgeon actually asked her why she waited so long, since she had felt the lump a few months back. She explained she’s been preoccupied with other health issues (which is absolutely true). 😢 Am I hoping for a good outcome in vain?
For those who might remember me, I should mention that there hasn't been a recurrence since 2009, and currently, I am dealing with the side effects from brain radiation. I don't have much trouble with the partial epilepsy because I'm on the right medications. However, the radiation significantly damaged my hearing—it's an 81% loss, which resulted in a 50% disability rating. My current issue is a perforated eardrum. It's hard to say with absolute certainty if it's a direct consequence of the radiation, but it has caused balance issues, occasionally resulting in mild dizziness and nausea. On top of all that, I've been struggling with a severe throat infection, similar to one I had back in November, though perhaps slightly less intense. I am currently waiting on a specific test ordered by my ENT specialist. Aside from those things, I don't really have any other major problems. 😍
What does a TA, TG, and ENG workup actually look like? An ENT surgeon is sending me in for these tests to figure out if my mild dizziness, occasional bouts of nausea, and some shaky balance are leftovers from treating a brain tumor, or if they're stemming from a small perforation that turned into a much larger hole 😲 after my ear was (almost) completely cleared out.
The logic is this: if the issues turn out to be neurological, they won't touch the ear at all; I'd just have to live with the hole as it is. 🙄 However, if the cause of everything I'm feeling is indeed that perforation, then it’s back on the operating table. 😲 My specific headache is that my ear canal is narrow and curved, so they'll likely need to dilate it. Honestly, just the thought of that dilation makes my skin crawl. 😲
Jonathan Johnson4 said:Radiation isn't actually linked to that, though your hearing could certainly be damaged by it. An eardrum rupture usually happens due to physical trauma (less likely) or a middle ear infection (much more common), where pressure builds up and forces its way out, causing the perforation.
Two different specialists have already confirmed that my hearing loss was caused by brain radiation. 😉 I dealt with infections in both ears earlier this year, and the ENT surgeon told me they couldn't definitively say whether the perforation was triggered by those infections or by the radiation treatment itself.🤷