At Home With Too Much Time To Think

LisaSeattle
LisaSeattle Member Posts: 8 Member
edited August 2022 in Kidney Cancer #1

After a sonogram, I had a CT scan w/contrast on May 4th and was told that I had a 7.8 centimeter mass that was likely kidney cancer. On May 27th, I had a radical left nephrectomy through flank incision. Pathology report came back that it was clear cell renal cell carcinoma. I was in the hospital for six days and have been home on medical leave (will return to work on July 22nd). Thankfully, margins were clear and will return for three month scans in September.

I'm six weeks post op, and still have consistent pain at the surgical site... it's tight, hurts when I move, and feels like I've been doing the ab workout of the century. I'm having anxiety about multiple things and thought this forum might help. I'm anxious about returning to work (in the restaurant industry). I'm having trouble trusting my body. Going from healthy to unhealthy within a few hours is something that I haven't really processed yet, as things happened so quickly. I know statistics are in my favor in regards to the odds of it coming back. But how do you not be scared that it or something else is around the corner, hiding in your body somewhere?

I suppose this sounds more like a journal entry than a specific question for the group. I'm 45 years old, and this is the first time I've posted something like this on any sort of website. I'm hoping that by finally making an entry into the conversation, it's a step forward for me in the healing journey.

Wishing healthy healing for everyone here.

Comments

  • AliceB1950
    AliceB1950 Member Posts: 237 Member

    I'm sorry you're still hurting, but you had open surgery, which means they cut a lot of muscle and nerves. My nephrectomy was laparoscopic, but I've had other open surgeries and didn't feel even semi-normal for about three months, and finally pretty good at six months. But with any of my surgeries (too many!), there are ALWAYS occasional twinges and zaps, even years later.

    I'm not sure what to tell you about getting past it mentally. My first cancer was in 2008, and that one occupied my head for quite a while. It didn't help that several friends from work got various cancers around the same time! I got my first low-grade skin cancer about a month later - that just made me angry, which kind of helped. Eventually, I didn't really think about the first one, and just kept up with my dermatologist for the skin. Then, in 2018, I got diagnosed with breast and kidney cancers less than a month apart. Busy year! But for some reason, they didn't freak me out like the first one. Maybe it's knowing I got through that, it was cured surgically, and in the past. So far, that's how these two have been, too. It helps once you resume your regular working life. Of course you'll be tired the first few weeks, but once you settle into a routine, it should help you not think about the "what if" so much. If you do find yourself unable to stop thinking about it, ask your surgeon or primary doc for a therapy referral; I've heard it's quite helpful for a lot of people who have had cancer. And do try to focus on the last part of that sentence: HAD cancer. My attitude is that it's in the past, and unless/until I'm told otherwise, I'm cured and good to go. Good luck!

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member

    As someone who had two open abdominal surgeries (before I had the robotic partial for kidney cancer), I can attest that open surgery takes a LOT longer to recover from. As Alice said, open surgery cuts more and cuts through muscle that, when it’s knitting back together hurts like a sun of a …..gun. But, over time, the pain gradually reduces.

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    Thank you so much, AliceB1950. Gosh, it sounds like you've been through so much. I'm so grateful you're doing well and are able to share your perspective. It's really helpful to hear from people who have been through this. Continued good luck to you as well!

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    That's one way to put it, Bay Area Guy. Haha. Thanks for the message. I'll keep being patient. :)

  • Tobi
    Tobi Member Posts: 61 Member

    I understand the feeling if being healthy then you weren't. I am 49 and it has been almost a year since my neph and I don't worry so much anymore. Like you I know the odds are in my favor. I think the hardest thing was everything came at me so fast that it was over before I could process it all. I had a lot to work through but once I did it helped me feel better mentally about things and worry less. I hope your healing process goes smoothly, and you are able to find some peace with it all. Most of all just give yourself time to work through it, there is no rush and you are not on anyone's time schedule but your own.

  • Allochka
    Allochka Member Posts: 1,060 Member

    Hi,

    wishing you a speedy recovery from surgery!

    Regarding anxiety - it gets easier with time, I promise! I suffer from health anxiety myself, so it was very-very hard for me not to worry about recurrence when husband got diagnosed with kidney cancer. It was in 2014, and he is fine since then, fingers crossed. After a year I k8nda stipped worrying THAT much. Things get a bit stressful around follow up scanning, but this too gets better.

    Hold on, we are here for you to get you through! Many NED years are waiting for you!

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    Thank you, Tobi. I really appreciate your reply.

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    Thank you for sharing that, Allochka. The support means a lot. I hope for the continued health of your husband!

  • tgpath1
    tgpath1 Member Posts: 97 Member

    It definitely takes time to get past the constant fear, but it does get better. One of the things that you have to keep in mind is that you will now be getting scans on a regular basis that will show anything very early on. So IF you have anything else, it will be found very early. take comfort in knowing that if you didn't have this, you would not be getting scans and it would be far scarier! I love getting my scans because it gives me a certain peace of mind. After 18 months, I am finally at a point where I don't live in constant fear. Good luck!

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    Thank you, Tgpath1. That's a really good point. Perspective is everything.

  • Mmoses25
    Mmoses25 Member Posts: 319 Member

    I’m just checking on you to see how your doing my scans were every three months I just got moved to every six months I hope things are going well for you anyway just seeing how you were doing

  • LisaSeattle
    LisaSeattle Member Posts: 8 Member

    Hello, Mmoses25! I'm doing well, thank you. I went back to work this past Friday. And I was able to take my dog for a hike today, which we haven't done in quite some time. My first set of follow up scans is in September. So happy for you that you've been moved to every six months. Thanks for checking in. I appreciate it.

  • Mmoses25
    Mmoses25 Member Posts: 319 Member

    I know you were worried and look at you going back to work good for you you sure in my prayers

  • Mmoses25
    Mmoses25 Member Posts: 319 Member

    Stupid autocorrect should say you are in my prayers

  • Deanie0916
    Deanie0916 Member Posts: 614 Member

    Hi Lisa good to hear you are getting back to doing some things that you enjoy. I agree with all the above posts that scans are a good thing helping to keep watch and that perspective helps with scanxiety...even though I still experience it. Best wishes and prayers for your continued full recovery!

  • Lisa 1102
    Lisa 1102 Member Posts: 17 Member

    Just saw this thread and I hope you are feeling better each day. I had a partial laparoscopic nephrectomy of my right kidney in October, 2020. I was stage 1a (my tumor was less than 4 cm) and I felt great at the time I was diagnosed so learning I had cancer was devastating. My most recent scan was in April, 2022 and my surgeon moved me to 1 year scans. I went from 3 months, to 6 months, to 9 month scans until this April. I had more frequent scans (I think) because they discovered 2 nodules in my left lung. These have been stable and the doctors believe they are likely benign. Even though my surgery was laparoscopic, I still experience occasional mild discomfort in my right side. My surgeon told me that such complaints are very common following all types of surgery, likely due to the damage to nerves, muscles, etc. which occurs during surgery. I do experience anxiety at scan time, but I tell myself that if there is a recurrence, it will be found early. I hope that your recovery is going well. Be patient with yourself!