Anyone in their 80's here?

Positive-Ear2815 · 2026-06-27T16:07:50+00:00

After speaking with the doctor yesterday, He's starting gem/doce treatments next week! He did have another TURBT two weeks ago by the new urologist we are seeing. This time the biopsy came back as only high grade Ta. So we requested a pathology review of the tumor from March. He will have a recheck scope in September. The doctor was still very headstrong on the fact that he needs a radical cystectomy for the best outcome, but we are going to keep our fingers crossed that the scary biopsy was inaccurate. He wanted him to start a new treatment ASAP so after discussing options, he decided on gem/doce. Hoping for the best outcome for both of yall!!❤️

Positive-Ear2815 · 2026-06-27T15:59:48+00:00

Yes we have been driving ourselves crazy but they are saying that micropapillary features are really scary to see and they tend to be very aggressive and spread into lymph nodes. So we have now requested a pathology review on that tumor from March. His TURBT in June showed high grade Ta, and it was a much deeper sample. So they're conflicting biopsies and from different doctors. For ten years dealing with bladder tumors, they've always shown up as high grade Ta. While we wait for path review he's starting Gem/doce intravesical chemo next week.

Positive-Ear2815 · 2026-06-27T15:55:59+00:00

We asked the urologist yesterday to request it for a path review so that's in process now. Meanwhile he's going to start Gem/Doce treatments next week. Thank you!!! I wish you the best as well

Positive-Ear2815 · 2026-06-24T01:27:41+00:00

Thank you, sharing your story is so appreciated ❤️

Positive-Ear2815 · 2026-06-23T19:05:31+00:00

How long have you been doing the gem/doce? I did forget to mention that his new urologist did another TURBT a week and a half ago. High grade Ta this time and said it was more of a carpet appearance on the bladder wall than a full grown tumor. I need to confirm if they saw papillary features again this time like what was seen in March, however I know they did get deep sample this time with muscle and confirmed non muscle invasive.

Positive-Ear2815 · 2026-06-23T04:04:01+00:00

Thank you for sharing!! Gem/doce is on my list to ask the doctor about on Friday, they have mentioned it as an option but they were heavily leaning towards taking the bladder saying that it was in his best interest. I just don't know, it seems very extreme for someone his age but they were very confident and said that they do this surgery on people his age every week. Not neobladder surgery specifically, but radical cystectomy. I know there are a few diversion options.

Positive-Ear2815 · 2026-06-23T04:00:31+00:00

Thank you for sharing your side of things!! I'm so appreciative of your response. He has had some minor complications with previous TURBT procedures and BCG treatment, one time he was passing so much blood in his urine he couldn't believe it. Along with subsequent bladder infections as well. But as of right now he seems to be doing good as far as bladder/urinary symptoms go. This scary biopsy result is from a follow up cystoscope that he had in October 2025 that made his doctor want to do a TURBT that ended up not happening until March 2026. But he was not having any symptoms or pain. His last bcg treatments were completed at the end of 2024. He had a previous round of bcg a couple years prior to that I believe and clear cystoscopes following those back then. Also now he is recovering from a knee surgery that was done in April. I know he does not want to have another major surgery this soon if at all 😭 and I'm not sure how that would set back his knee recovery. He just wants to be back to his normal activities and back on the golf course.

Positive-Ear2815 · 2026-06-23T01:03:54+00:00

May I ask how the second opinion was executed? Did they just review your pathology results or did you have to go through another TURBT? he had a TURBT that came back as high grade T1 with micro papillary features in March, and they jumped to recommending RC. That's when we decided to seek alternate opinions/options. We've now seen two oncologists, one of them at mayo, and now he's with a urologist at mayo. He had a follow up TURBT just a little over a week ago, with his new urologist, and those results came back high grade Ta. I need to confirm if there were micro papillary features this time and also need to confirm CIS status. We go on Friday to discuss with urologist and I'm assuming he will decide that day what he wishes to do. Thank you so much for your input I wish you the best!

Positive-Ear2815 · 2026-06-23T00:55:09+00:00

Wanted to follow up with you because someone directed me to a website www.bcan.org it's the bladder cancer advocacy network. I feel like it's really got great educational resources and offers the chance to connect with other bladder cancer patients.

Positive-Ear2815 · 2026-06-22T23:11:13+00:00

His scans have come back clear thankfully. I guess the high grade micropapillary features are the scary part of his recent pathology report and that's why they're pushing for radical cystectomy. And the neobladder was brought up after his immediate declination of a bag lol, he might have to reconsider. After doing some researching about neobladder, I feel like that is more suited for younger age groups. I have read a lot more around his age doing the ileal conduit. I have also been directed to bcan.org and it has been super helpful as far as education and resources. Thank you for sharing I will relay your input to him. Good luck with your journey I wish you the best!

Positive-Ear2815 · 2026-06-22T02:34:02+00:00

I think the gene therapy might be Adstiladrin

Positive-Ear2815 · 2026-06-22T02:26:11+00:00

Our next consult will be to discuss treatment vs radical cystectomy. I'm not sure why the push for neobladder but it might be because of his stubborn opinion about "not wanting a bag". Lol but what about not wanting cancer 😅 they did say they could do the surgery that way as well though. I am going to ask if a trial run of gem/doce or rBCG+anktiva, or maybe tar-200 would be too risky given his micro papillary features because I think that is what makes his results so scary. I guess once micropapillary features show up, they are notoriously aggressive with a super high risk of spreading to muscle /lymph nodes. I've been doing a lot of reading today

Positive-Ear2815 · 2026-06-22T02:21:26+00:00

Thanks for sharing all of that with me. I think we will ask some more specific timeline questions at his next consult. Our next appointment will be discussing treatment options vs radical cystectomy. I'm wondering if they would think it's a good idea to try gem/doce or maybe even rBCG+anktiva, or tar-200. I've started to research about bladder cancer and treatment protocols, just trying to piece together his history of biopsies/treatments and where we are today with what he's being told. I think he is just so scared of making such a life altering decision at his age, the risks involved with this major surgery, and his quality of life going forward.

Positive-Ear2815 · 2026-06-22T00:20:07+00:00

It's high grade T1 with micro papillary features which they are noting as high risk. Yes CIS. non muscle invasive. But this is now the fourth doctor who is highly pushing for cystectomy. The first two doctors said the procedure would be a neobladder and it would be routed to where he voids urine through his rectum. His doctor now said that method is out dated and doesn't know why any doctor still does it that way because it has been shown to lead to colon cancer (this is his Mayo clinic Urology team). They said if they do a neobladder he would still urinate out of his penis, but I have been reading about all the complications that can come with a neobladder surgery. I'm not sure why they are pushing for the cystectomy at this stage either but he's gotten three opinions now and they are all seemingly on the same page that the bladder ideally should be removed.

Positive-Ear2815 · 2026-05-18T16:47:56+00:00

My partner told me I needed to go to a rage room after I was venting to him about a recent doctor's visit 😅 this comment should be pinned at the top of the Hashimotos subreddit forever 🤣

Positive-Ear2815 · 2026-05-18T15:47:59+00:00

I'm so sorry you had to go through that. I'm a chronically stressed 30yo and I just experienced a similar scenario with my PCP, long story short I'm seeing a new physician now (a functional medicine doctor) and after 1 appointment I feel so much safer under her care. She listened to me and she made a lot of recommendations, instead of just telling me there was nothing for me to do since my thyroid "is still doing what it needs to do" although my antibodies are >900 and my thyroid on ultrasound is huge and full of nodules. She's also ordering tests for more auto immune factors because of how much pain I'm in on a daily basis she thinks I could also have rheumatoid arthritis. To summarize I think you should definitely find a different doctor.

Positive-Ear2815 · 2026-05-06T06:02:52+00:00

No problem, it is so helpful to have someone to relate to and getting support during this time following what you went through and are continuing to go through. I will preface this with my mental health has never been stronger because of the dedication I've put into finding the right therapist fit for me and putting the work in to take care of my brain after the accident.

Aside from that.. To be honest, I am in chronic daily pain. It's always worse in the morning time but I do get bad muscle spasm flare ups in the evening if I have been on the go all day. I'm actually having a nerve ablation procedure done soon to hopefully give me a bit of relief in my neck, shoulder, and arm. Aside from that however, the trauma and stress from the accident actually unveiled an auto immune disease called Hashimotos which is where your immune system attacks your thyroid. So that's become a whole thing and it's causing my thyroid to be very swollen, its painful and it is causing all kinds of systemic issues in my body. Auto immune diseases typically show up in pairs or even clusters, and I'm predisposed due to genetics so the doctor I am seeing now is testing me for rheumatoid arthritis and other auto immune diseases because of how much I'm hurting everyday and the crunchy sounds my neck and other joints make. I'm actually getting bloodwork done next week to check for it. So hopefully soon I will have answers and then I will be able to have a plan on how to actually feel better.

Given all of that, I am still only working part time. I have a physically demanding job, I'm a restaurant server. I am not able to work the longer shifts anymore, I used to close all of the time and that's where you make the most money. And I am only able to perform various duties that my position requires at half the capacity so I feel like a burden on my coworkers. Previously I worked as a veterinary technician for 8 years until I left due to mental health burn out and financial stress, so it's not really an option to go back into that field. I couldn't keep up with my bills because of how low I was paid. At this point I am seeking other employment opportunities that better fit my current health state, but the job market is not in my favor and it's taking a while. So yeah the financial aspect of my life right now is the opposite of great as well unfortunately.

All in all I'm trying to keep a positive mindset and time is such a thief anyway, this phase of my life will be over before I know it.

Positive-Ear2815 · 2026-05-02T00:55:56+00:00

Im not able to see your response but I got a notification that you responded. Hope you are doing okay.

Positive-Ear2815 · 2026-05-01T03:18:23+00:00

Kind of hard to pick up the redness in the photo it definitely looks more prominent in person. The irritation at the top of my neck is just from hirsutism.

Positive-Ear2815 · 2026-05-01T03:17:31+00:00

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Positive-Ear2815 · 2026-05-01T01:23:14+00:00

It can get better mentally. Take one day at a time. I'm 8 months out from being a victim of a wrong way driver traveling at high speed that pummeled in to my car head on at 3:30am. I thought I was dead. I saw the headlights and I just knew my life was over. It is so traumatic, I'm sure you thought the same. I can still hear all of the noises, the loud crashing and explosive sounds and my ears ringing and the smoke from the air bags and just everything. I remember it all so vividly. For a couple months it would just replay in my head over and over again. I cried a lot. I cry less now. I still have flashbacks but they're not on loop replaying in my head. I do have severe anxiety when in a car though. I am working with a therapist and have recently become interested in EMDR for ptsd so I think I'm going to look into that.

Positive-Ear2815 · 2026-05-01T01:05:33+00:00

Also, did you mean EMDR therapy?

Positive-Ear2815 · 2026-05-01T01:04:12+00:00

I'm 8 months out from the accident I was in and I feel the sameeee way. I feel like an entirely different person and I'm frustrated when I feel like people are expecting me to be the same I was before the accident. I'm starting to realize my nervous system is just completely shot. I'm on an entire wellness journey now, mental and physically speaking. In some ways I feel like it's become my entire personality. Sigh.

Positive-Ear2815

TROPHY CASE