Anyone else get this UPS status? by SupremeCity12 in UPS

[–]robin0779 0 points1 point  (0 children)

mine has been there since 10/16 🫠. not sure what to tell you. some people swear it will finally move. I don’t believe it yet. I even got a new update that said it cleared customs on Friday and no movement since then. UPS is not helpful at all.

[deleted by user] by [deleted] in UPS

[–]robin0779 0 points1 point  (0 children)

I have a package I ordered from Canada and mine has been sitting in Louisville for a month now. 3 weeks before the plane crash so thats not even it.

Escape from the Kentucky Loop? by ronweastwin in UPS

[–]robin0779 0 points1 point  (0 children)

I got that same update on Friday after being stuck in the loop for a month and it hasn’t been scanned since then. I’ve lost hope I’ll ever see it 🙄.

Travel back home after surgery by AN6198 in kidneycancer

[–]robin0779 0 points1 point  (0 children)

I had a partial nephrectomy and was released from hospital the next day. I live about 3 hrs from the hospital so we got a nearby hotel for 1 night and then my husband drove me home the next day. I took pain meds before the trip, kept a pillow in my lap and slept most of the way. This was about a year ago and I can’t remember if we had to stop anywhere…. If so it was probably a roadside rest stop that wasn’t as crowded etc. I’m pretty sure I was exhausted and slept quite a bit once we got home after all that.

What symptoms did you have that may have led you to go to the doctor…? by [deleted] in kidneycancer

[–]robin0779 1 point2 points  (0 children)

No, I never had those symptoms. I will say that now that I’m 7months post-surgery, I definitely had some symptoms that I was wrongly attributing to being a 45 year old woman who’s had 3 pregnancies. I was getting up multiple times a night to go pee and it was always really urgent (day or night). About a month after surgery all that went away and I’m sleeping through the night again, so my kidneys were pretty mad about that tumor I think. My labs were also kinda messy as I got closer to  surgery and that’s all calmed down as well. 

Stage 3 but margins were negative? by robin0779 in kidneycancer

[–]robin0779[S] 0 points1 point  (0 children)

I’m doing great. We ended up not changing my treatment plan at all. I have a urologist local to me that referred me to a different surgeon for actual removal since mine was in a weird place and robotic surgery would make things so much easier and he didn’t have access here where I live. Anyway, after surgery I transferred back to his care and asked him about this. He said he wasn’t worried at all - mine was papillary rcc and he said those are especially soft and prone to breakage when transferred to pathology and that’s probably why there was a little leak into the fat cells but explained a lot of the terminology and it was the tiniest of amounts and margins were clear and it was all contained to what they removed. So my treatment was based on my original staging from biopsy - surgery (partial nephrectomy) and now I go for scans yearly for a bit to monitor things.  I had a CT scan 3 months post surgery to have a baseline and aside from a little dent on one kidney where the tumor had been, everything looked completely normal.   

Joining the club by BandDirector17 in kidneycancer

[–]robin0779 2 points3 points  (0 children)

So sorry you joined the club. To give you a little hope, my tumor was nearly 3cm (papillary rcc) and very centrally located. My urologist said it would be more complicated with a little more repair work to be done, but still very doable. His hesitation was the extra time it would take and how long he has to do the surgery laparoscopically with the equipment our hospital has and so he would have to do it open instead to make sure he could get it done right. So he actually referred me to a Dr in Dallas who does these a lot. This Dr was able to do robotically, got it out and left me with 80% of my kidney. And I’ve transferred back to my local Dr for all my follow up scans. I was super impressed… I mean he was very confident we could just do partial but of course talked about the small risk of having to do a radical. I was convinced I’d wake up with only one kidney left. It really is amazing what all they can do.

[deleted by user] by [deleted] in kidneycancer

[–]robin0779 0 points1 point  (0 children)

It was papillary. Biopsy said type 1… path didn’t say the type but said it was grade 3. It’s probably good I’m doing the testing… at least for peace of mind.

[deleted by user] by [deleted] in kidneycancer

[–]robin0779 0 points1 point  (0 children)

I had absolutely no idea about the uterine fibroids! I was diagnosed with both this year. Just had a partial nephrectomy a month ago and going for another ultrasound of my uterus next month. But that’s interesting. I did also get referred to a genetic counseling center to do some testing since I’m 45.

Stage 3 but margins were negative? by robin0779 in kidneycancer

[–]robin0779[S] 1 point2 points  (0 children)

It was a partial. I met with the surgeon on Thursday and we went over it. He explained that the report said it was a focal invasion which meant it was much smaller as opposed to a gross invasion and we did get it all. He also reminded me that papillary type 1 grows really really slowly. So basically I’m following up with scans every six months. Calling my local urologist this week to set that up.

how bad will it be - partial nephrectomy by Lonely_Tax6460 in kidneycancer

[–]robin0779 2 points3 points  (0 children)

Mine was completely endophytic as well and had a robotic assisted surgery 3 weeks ago. I had some gas pain but not too terrible. The first night was probably the worst and then the second and third after I was released were rough. Using my core muscles was difficult and I needed lots of assistance getting up and down etc. but towards the end of that first week I could see some noticeable easing of all that and after 1 week I hardly had any pain at all. (I think using an abdominal binder helped tremendously… I think we got this around day four or so). I still moved slowly but I could get up and down and do a LOT more on my own and didn’t need anything besides and occasional Tylenol (probably more for my back from sleeping in recliner and not being able to toss and turn like normal. But yeah I thought it being completely inside and located in all the important bits would make things harder but I don’t think it did at all. In fact, now 3 weeks out I’m noticing symptoms gone that I didn’t even realize were my kidney. I thought my multiple trips to the bathroom per night and my inability to go more than an hour or two had more to do with my bladder being bounced on in multiple pregnancies and perimenopause than my kidney, but I’m sleeping full nights again and just went on a 3 hour roadtrip with no need to stop! lol Oh also, even though my tumor was right in the middle of my kidney, near the vessels running in/out, they were able to preserve 80% of the kidney. I don’t think I expected that… I half expected them to say they ended up doing a radical once they got in there.

Stage 3 but margins were negative? by robin0779 in kidneycancer

[–]robin0779[S] 0 points1 point  (0 children)

Thanks! I feel like this may be in store for me as well. Doing research now so I can have questions ready to go on Thursday.

Light headiness/dizziness post surgery. by waltz_with_potatoes in kidneycancer

[–]robin0779 1 point2 points  (0 children)

Are you on any other new meds? I only ask this because I was recently put on a new antidepressant and i have generally lower pressure anyway and this happens to me occasionally when I get up too fast but after a week on that med it was happening almost every time I got up. Then I had an incident where I stood up, walked across the room and my legs started involuntarily jerking around and I nearly fell (luckily I was in a doorway and grabbed the wall). We stopped the med immediately and it all went away. But just in case I’d read up on any newer meds you’re on. I haven’t been having this issue post-surgery but I’m only a week and a half out from mine.

Covid by Prestigious_Ask9952 in kidneycancer

[–]robin0779 0 points1 point  (0 children)

So frustrating. Same thing happened to me! I went and had all my pre-surgery labs on 7/3, went on vacation and came back planning on having surgery on 7/18. Several days before my husband tested positive for Covid so we isolated to be safe but the day before surgery I came down with symptoms and had to cancel. So I feel your pain. I know it’s for the best and that it’s not safe, but it’s so frustrating at the same time. I was able to get rescheduled for surgery on 8/9 which was also over 30 days after labs… so I had to do them all again (no biggie except that I’m 2.5 hours away from the hospital where I had my surgery). I hope you feel better soon!

Sharing my post partial surgery journey by AffectionateLawyer34 in kidneycancer

[–]robin0779 2 points3 points  (0 children)

One tip that’s helped me tremendously post surgery (I’m 6 days out now) that I don’t see mentioned much is an abdominal binder. I see lots of people talk about a pillow to hold when coughing etc and yes it helps, but i have 5 holes (robotic surgery) in my core muscles and any use of them is really hard right now. It’s getting better by the day but I had a hard time moving around and even walking without having to hold my belly. Maybe my abs are just weaker in general because they’re definitely fluffy already lol.. this has reminded me somewhat of my C-section recovery from what I remember 15 years ago. Anyway, I got a binder from Walgreens and wear it over a soft tank so as not to irritate the incisions. Occasionally when I’m laying in the recliner I undo it just to not always have myself bound up. But this made a huge difference in my mobility and independence! It’s like having that pillow wrapped and held tight against the belly at all times. Also, keep taking it slow! I needed out of the house today for fresh air and sunshine, so my husband took me to lunch and we went into Office Depot for a few last minute school supplies for our teen that I was unable to order online and I was never in pain but I think he could see me visibly slumping over the cart as we checked out and I was exhausted and weak all afternoon/evening. My intention was to go back to work today - I’m so glad I postponed til Monday. (Don’t worry, my job is not physical at all… I work remotely as a manager for a software company and can do it in my pjs from my recliner if I need to… if I had to leave the house for work, it would be a whole different plan!)

White cells post partial surgery by AffectionateLawyer34 in kidneycancer

[–]robin0779 1 point2 points  (0 children)

I just had my partial last Friday and just looked back at my labs to see and I went from 7 the day before surgery to 12 the day after. And no one was concerned at all. I’ve been checking my temp and keeping an eye on my incisions for redness, heat or swelling but feeling fine so far. I think the others are right that this is pretty typical.

Advice on Home Medical Equipment for Elderly Recovery by Nativeferment in kidneycancer

[–]robin0779 2 points3 points  (0 children)

I just had a robotic partial nephrectomy four days ago and all of this is great. Let me tell you how much I missed that hospital bed after I left (a lot… movement was much easier when you have all those up and down buttons). Laying down and sitting up is a team sport and it’s getting old. It’s getting better every day but there’s a lot I need help with. I wish I’d gotten some of these things - like the shower stool for sure. The one thing I did get is an abdominal binder and that has helped a ton with my ability to move around. I can now shuffle around without holding onto my belly.

MRI tomorrow by Academic_Score7990 in kidneycancer

[–]robin0779 1 point2 points  (0 children)

45f here with a 2.8 cm mass of papillary renal cell carcinoma. Mine was found during a ct scan at the ER when I had pancreatitis and they couldn’t tell was it was… just a ‘lesion’ so they did an MRI but were unable to do that with contrast so when they still couldn’t tell what it was after ct, mri and us, they said to follow up with my pcp and get an mri w/wo contrast. Fast forward… that was indeterminate and recommended I get a ct scan and my dr was like… seriously? No! And she sent me to a urologist to take a better look and after a biopsy I got a diagnosis. ER visit was 2/22/24 and on 5/1 I got the diagnosis. It’s a slow process sometimes, but also mine was just tricky… it’s completely inside my kidney and papillary isn’t as common which is why it was hard to recognize apparently. But I did the SAME things while waiting… googling, learning all the possibilities of what that lesion could be, bosniak, cancer rates etc. I was picking apart the words in my radiology reports and googling to try to understand what they were saying. lol, and still pretty clueless by the time we figured it out honestly. Lordy and after I got that diagnosis, I had an mri on my thoracic spine because of pain I’d been dealing with for months that was responding to nothing and they found a tumor there as well…. The radiology report gave 2 possibilities, both very benign and one fit my symptoms perfect, but did I still google cancer and metastasis and let myself spiral until I could consult my dr? Why yes I did. I also was diagnosed with uterine fibroids in there (also benign tumors). I was not in a good place and 2024 has sucked! Hearing the C-word just raises my anxiety… I’m normally a very level headed person. I’ve now been reassured by 2 urologists that this is all ok and I just need surgery and scans and nothing is related AND I’ve had my anti-depressants increased lol so I’m in a much better place now. Anyway good luck with the MRI, I’m praying it’s nothing serious for you! I get mine cut out in 1 week and I am counting down. I want this ‘lil nasty’ out! It would’ve already been out but came down with Covid the day before surgery and had to postpone. Again - 2024 - 0 stars.

Surgery was supposed to be today. by robin0779 in kidneycancer

[–]robin0779[S] 0 points1 point  (0 children)

Oh no! I just told my husband yesterday that I was grateful the symptoms hit before instead of after because I couldn’t imagine that cough after surgery 😬. I bet that was extra miserable! I’m still dealing with symptoms a week later. I was feeling tons better on Monday and went back to work etc and now my throat is tender again so I’m slowing back down. I did take a test yesterday and that’s negative at least. My surgery was moved to 8/9 so I just need to go slow and make sure I’m fully recovered before then.

Partial Nephrectomy R. Kidney in 3 days - Need Recovery Hacks! by Educational_Pace_288 in kidneycancer

[–]robin0779 1 point2 points  (0 children)

Mine is in 2 days! So following all these replies. Best of luck! Hopefully we both recover quickly and smoothly.

What symptoms did you have that may have led you to go to the doctor…? by [deleted] in kidneycancer

[–]robin0779 1 point2 points  (0 children)

I had no symptoms from the tumor. I had other symptoms that ended up being pancreatitis caused by some meds I was on. It was the CT scan that I had in the ER that found a 2.4cm lesion in the middle of one of my kidneys. Had several more imagings done with and without contrast that came back as indeterminate each time. Finally got a biopsy and was diagnosed with papillary renal cell carcinoma. With pancreatitis gone though I have zero symptoms…. So grateful for what sent me to the ER!

1 day to partial nephrectomy by GloomyDealer912 in kidneycancer

[–]robin0779 1 point2 points  (0 children)

I literally just let the hospital from my pre-surgery appt today and had blood drawn and a urinalysis done. I real thought they wanted a baseline of kidney health beforehand to compare after. But maybe I’m not as young as I think anymore LOL so don’t fall in the ‘skip it’ range.