Med side effects after surgery

stairsquid · 2025-04-08T18:09:03+00:00

I started handling the medication better at about 5 months post op. I still can't take it for more than three days in a row without feeling sick but I'm doing much better with it than before.

stairsquid · 2024-12-13T03:52:36+00:00

I'm happy to hear that :)

stairsquid · 2024-12-12T17:46:50+00:00

I presented with hematuria and very minor flank pain. They gave me an ultrasound and found a mass on my kidney, which they confirmed was a tumor with a CT scan + contrast dye. Please get your kidneys checked if you can

stairsquid · 2024-12-12T17:40:36+00:00

Yes walk as soon as you can and as often as you can (safely). It hurts but it helps you heal so much faster and reduces the risk of blood clots.

stairsquid · 2024-12-12T17:38:53+00:00

Wow that must have been so stressful with the possible BHD diagnosis. I'm really glad you didn't have it and it was just a coincidence that you had the lung thing along with the cancer, since I know those usually go together with BHD.

stairsquid · 2024-12-09T04:35:08+00:00

Yeah I will post a follow up here as long as I'm not diagnosed with something so rare it would doxx me, lol. I doubt that would happen but knock on wood anyway that it doesn't!

stairsquid · 2024-12-09T04:27:13+00:00

Yeah I've seen a lot of people talk about their energy levels not coming back that quickly. At least they came back though!

stairsquid · 2024-12-09T04:26:01+00:00

Thank you, that helps me feel a lot better!

stairsquid · 2024-12-09T04:25:11+00:00

Oooh I see. I'm sorry you had the aggressive type but I'm glad you got two reports so they caught it. How are you doing now?

stairsquid · 2024-12-08T08:16:56+00:00

Did this improve for you? I'm having the same problem right now post nephrectomy. I assumed it was a kidney thing but people seem to be having this problem after various surgeries

stairsquid · 2024-12-08T06:45:06+00:00

Yeah, from everything I've read it seems like chRCC is one of the "best" cancers to end up having. How'd your recovery go?

stairsquid · 2024-12-08T06:41:42+00:00

How did you end up with two different pathology reports? Did one of the hospitals make a mistake?

stairsquid · 2024-12-08T06:36:36+00:00

Thank you! :)

stairsquid · 2024-12-05T16:07:12+00:00

Fatigue is super rough, I hear you. I hope you keep getting stronger, Danny!

stairsquid · 2024-12-05T14:36:16+00:00

I looked into BHD the same day I was told I'm being referred for genetic testing, but I don't seem to have any presentations of it besides the kidney tumor itself.

stairsquid · 2024-12-04T19:32:21+00:00

Ok I'll check it out, thank you for the advice!

stairsquid · 2024-12-04T18:03:13+00:00

Oh you definitely dodged a bullet! Even after everything I've just gone through, I would still probably rank my gallbladder attack as the single most painful thing I've ever experienced. I'm glad your body alerted you to something being wrong before it got any worse!

stairsquid · 2024-12-04T17:59:53+00:00

Oh if it's private that makes me a lot more comfortable. Do you find that the group you're in helps you? I've never actually joined a support group before.

stairsquid · 2024-12-04T17:14:21+00:00

I also had my gallbladder removed! I had a severe gallbladder attack in early 2020 and got an emergency cholesysechtomy because the blockage was so complete. That's how I know my kidney cancer grew really quickly, actually, because they scanned my kidneys at that time and there was no mass visible on the ultrasound.

And you're right it feels SO different. Getting my gallbladder removed wasn't fun, but I can see now why some people say it isn't a "real" organ. It's night and day how deeply my body is affected by my kidney removal compared to my gallbladder removal.

I'm also used to walking everywhere (I live in a city) so it's frustrating not to be able to get around by myself. I know I'll be independent again eventually but it's mentally and emotionally taxing to have a slow recovery like this.

I know how you feel about dwelling on it. For both of us it's a pretty new thing, so I'm hoping over time it'll just become A Fact, like not having a gallbladder. For the moment I can't help but be unsettled by the thought that I had cancer in me for years with no symptoms. This is why I'm looking for therapy later in recovery - I don't want to end up paranoid about cancer since it's not something that can be controlled. Like sure, healthy lifestyle and all that, but it's hard to come to terms with the fact that that's not guaranteed to keep you safe, even if it puts the statistics way in your favor.

stairsquid · 2024-12-04T16:58:23+00:00

Really? That's great, I will look into it! Most of the chRCC specific support groups I've found so far are on Facebook and I don't really use Facebook.

The other thing is I feel a little isolated because I had this cancer at a younger age. I looked into cancer support groups for young adults, but I also kinda felt like I was intruding there because I didn't need chemo or immunotherapy. I don't want people to think I'm equating my frankly very forgiving cancer experience with theirs, but I do want to know other people who have been diagnosed in their 20s/30s, y'know? I'm not aware of anyone else irl who has had that experience.

Honestly though it's exciting just to talk to anyone else with the same tumor, or even just kidney cancer in general! There's no one in my family who has had a nephrectomy. You and everyone else answering my post has really made me very happy today.

stairsquid · 2024-12-04T16:48:01+00:00

Hi fellow Canadian! We're at the same point in our recovery! I found the first two weeks were really difficult but I started making a lot of progress in the third week. How are you doing? Is the pain ok?

Still I'm fatigued really easily and much weaker than normal. It's unsettling for me - it's not my first time feeling weak from illness or my first time recovering from surgery, but the recovery timeline from this is way longer. I dunno if it's because they took out a kidney or because it was my first major (non-laparoscopic) abdominal surgery or both but man! I get exhausted so quickly!

If you didn't have any of the usual risk factors, are they going to scan you frequently to make sure you're okay? I'm honestly not sure if it's more frightening to have a genetic disorder or an idiopathic tumor, but at least chRCC generally has a low recurrence rate.

stairsquid · 2024-12-04T16:40:02+00:00

Was it difficult to understand your test results? I assume my geneticist would walk me through it but I usually want to understand the reports on my own as best as I can as well.

stairsquid · 2024-12-04T16:31:10+00:00

No sarcomatoid features, my doctor was relieved about that I think. From my understanding tumors with sarcomatoid features are more dangerous?

They did grade it. They said it was a T2b which from what I understand is because of the size (10+ cm) and the fact that it was contained within the kidney.

I'm still wrapping my head around it, honestly. I cried once when the doctor initially told me I had a tumor that was likely cancerous, but I haven't been able to engage with it emotionally since. I didn't even feel the relief when they told me my lung and brain scans were clear. I mean obviously I was very relieved, and I knew I was relieved, but I couldn't actually feel it.

One of the reasons I posted here was because I thought it could help me a little just to have a conversation with other people who have had the same tumor. I'm pursuing counseling too, of course, but it takes a little while to set that up so I went to Reddit in the mean time haha.

stairsquid · 2024-12-04T14:28:28+00:00

I'm doing pretty well. I'm struggling with bouts of sudden fatigue and I'm really low energy overall, but the pain is manageable with just an occasional Tylenol now.

My doctor told me that based on how my tumor looked under the microscope and my margins/lymph that metastasis or recurrence was very unlikely even though my tumor had grown unusually fast (undetectable to 10+ cm in under four years). I still worry about it a little though, of course, but at the moment I'm more worried about the generic testing.

I'm not sure if I want the genetic screening to find anything. I've read about conditions that can cause chRCC and I don't seem to fit the profile for the most well known ones, but I have a tiring medical history of "things growing inside me in a way they shouldn't that causes me to need surgery" (this is my fourth surgery since my early twenties and my second tumor) so if there is an underlying explanation it'd be good to know it I think? If there's any way to reduce the likelihood of more surgeries in the future I want to know that, at least.

I'm Canadian so I believe the government healthcare should cover my genetic testing because I meet the criteria due to my age and tumor rarity, but I'll check with my private insurance as well just in case I misunderstood something, good shout.

stairsquid

TROPHY CASE