Buckle up, it’s gonna be a bumpy ride…

Poswatz

Had a CT scan a week ago to check out my appendix after a colonoscopy, and the radiologist found that I have a “complex multi septate cystic mass with thickened septations and mural nodularity measuring 9 cm x 6.5 cm exophytic to the mid left kidney.” It’s def Bosniak III, potentially IV. 

My family has a propensity towards cancer, and every person had a different kind. Stomach, colon, lung/liver, and glioblastoma multiforme to keep it interesting. I’ve been wondering for ages “what” kind of cancer I’d develop, not “if” I’d get it. Now it may be looming. I always try to be pragmatic.

I see the doctor who ordered the scan on Tuesday; unsure of what will happen next. Have also put in a note to my gp via portal. I’m expecting surgery, and bracing myself for a full nephrectomy; anything less will be a blessing.

I’d love to hear your stories, especially post-op and oncology experiences, so that I can feed my pragmatism and get a better understanding of what may happen.

Also, please know that I am here for you as well, and will do my best to support and help anyone I can. It’s nice to not be alone in all this. Thank you!

RadRuck

I just robotic partial nephrectomy on 4/21, so just under two weeks.

That first week post-op was honestly rough—pain, insane fatigue, and just a lot of mental processing—but things have slowly started to improve. Walking has been a game-changer for me. Even just short laps around the house helped reduce the pain, cleared some of the fog, got rid for the gas, and gave me a small sense of control during recovery. I am still getting greatly fatigued, which is the weirdest part for me because I was super active prior to surgery.

I can imagine the whirlwind you’re in right now, especially with your family history and the looming uncertainty. But I want you to know you’re not alone. Please feel free to reach out whenever, whether it’s to ask about post-op logistics, what helped with recovery, or just to vent. We are here for you.

Sending you strength as you head into Tuesday’s appointment.

Poswatz

RadRuck, thank you so much for your response. I will continue to update as I go through this journey.
And you hit the nail on the head-my biggest worry is post-op and recovery, and what to expect. My family is overly dependent on me (my fault, but I don’t regret it) and they need as much mental prep as I do. ;)

ApeWithAnxiety

I just had a partial nephrectomy on April 3rd, about 5 weeks ago. In reading stories here and elsewhere I'm struck by how different everyone's story is. But here are my observations, take it for what it's worth.

The gas pain was pretty bad. I was also quite worried about constipation from oxycodone because you're not supposed to strain. Even taking MiraLax and Dulcolax 2-in-1 daily wasn't enough and they almost sent me to the ER when I hadn't had a bowel movement after 5 days. And I stopped taking oxy after two days post-op, and before then not taking it as much as I could have. Eventually the Magnesium Citrate worked. But it was frustrating as I could have used more pain meds.

Sleeping was difficult. I could only sleep in a recliner. There was an uncomfortable sloshing and cavitation feeling. I was active before surgery and not overweight. Anything bending the mid-section was difficult for a week or two. Fortunately, gas pain was minimized when lying down.

The bone-deep exhaustion is unlike anything I've experienced and I've had multiple surgeries. It was a tiredness that truly defies description. Maybe it's internal healing. Maybe it's poor sleep. But even after sleeping I would wake up and for hours (really, indefinitely) feel just as exhausted as right before needing to fall asleep. It went away after about 17 days.

I haven't read many people experiencing this, but I'm prone to depression and it always gets really bad after surgery for some reason. The emotional toll, the lack of activity, feeling stir crazy, the medications. It all gets to me.

AliceB1950

https://csn.cancer.org/discussion/329327/buckle-up-it-s-gonna-be-a-bumpy-ride

I had a full nephrectomy in 2018 for a 7 cm cancer. It hurt for 3-4 days after, but it was manageable with the prescribed pain pills. I had surgery on a Tuesday and was home Wednesday afternoon. I was told to walk as much as possible, which I did indoors that first week. The second week, I was slow hiking in a favorite local park, on a fairly level trail. From that point on, I was doing all my normal activities, just a bit slower and being careful not to lift anything that would interfere with the incisions healing.

I'm sorry your family members have had so many kinds of cancer. Mine had breast, uterine, kidney, and skin. I've had all four of those, and when I had genetic testing.through the hospital, no connections were found showing a predisposition to cancer. I have a sister who is a few years older, and she has not had any k8nd of cancer. It's a crap shoot, and some of us just happen to get the crap.

I had breast cancer and kidney cancer at the same time, so it was 6 months of constant appointments, tests, scans, surgeries, and then daily radiation for six weeks for the breast cancer. What helped me mentally and physically was to schedule as many fun things as possible between all of that. My husband and I planned picnics, day trips, even a few short out-of-town trips over long weekends. If there wasn't time for full-day excursions, we'd go to local parks or other nearby activities. We went to an awesome concert the day after i had a biopsy. I got called to schedule surgery while at a park about a hundred miles from home. Looking back, I remember the fun things much more clearly than all the medical stuff. It really helps to be proactive on the positive activities.

Good luck!