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In this three-part series, guest writer Megan Conley describes her experience with kidney cancer. Megan is a featured speaker at the KCA’s upcoming IKCS 2020 and Virtual Patient Symposium (register now). 

Read part one: “For Megan Conley, an Unexpected Diagnosis”.

Read part two: “How much we take for granted.”

After five days in my Washington D.C. hospital following a partial nephrectomy for chromophobe renal cell carcinoma, my husband and I went to stay with my parents in Virginia.


Upon my arrival, I learned the health of my 13-year-old basset hound, Stella, who made the journey to D.C. with us from our home in Florida, had taken a turn. Ironically, she had a tumor in her stomach that the vet believed was cancer. 

Stella was going to be my recovery coach. That night, I stayed up lying on the floor next to her as she howled in pain. A vet came to the house and put her down the next morning. My family was so happy that I was out of the hospital, but we were devastated to lose Stella.

Between surgery and losing my best friend, I ran a stress-induced fever of 101.5 degrees. My immediate thought was I had developed an infection or contracted the COVID-19 virus and worried that my parents and husband had been exposed. I was devastated and my family was concerned that my emotional state was going to impact my recovery because I was hyperventilating from crying so hard and I would not eat. 

A few days later, I said goodbye to Stella at her grave and my husband and I drove back to Florida. Having had two renal artery pseudoaneurysms after surgery, I was concerned about additional complications the whole ride home and spent the next few weeks taking it easy, fearful to move too much and cause another bleed. During a follow up video conference with my surgeon, my incisions were healing well, my recovery was on track, and each day I felt more like myself. Prior to my surgery, I made sure to establish a relationship with a new local urologist in case I had any complications and for my treatment going forward.

FaceTimeing with my husband after my third complication. At this point, I was over it.

I was four weeks out from my surgery and feeling pretty good until I experienced another complication. I woke up in the middle of the night, had a really hard time urinating until I passed some clots, and then then urine turned the color of red Kool-Aid again. I had a pit in my stomach because I knew something was wrong. I packed an overnight bag and my husband dropped me off at the urgent care entrance of our hospital – no visitors allowed in due to COVID-19. A third pseudoaneurysm was identified and was treated with another coil embolization by an interventional radiologist.  I spent a couple of days in the hospital to make sure the bleeding subsided. 

I was not expecting additional complications a month after my surgery.  This set my recovery back both physically and emotionally. I became hyperaware of symptoms that I may or may not have needed to be concerned with.

At home, a few days after I was released from the hospital again, I woke up in the middle of the night and did not know where I was.  My chest was tight, I felt nauseous, off-balance and my hands were clammy.  I also had pain and swelling my groin area from the procedure and placement of a Mynx a few days earlier.  I called my urologist that morning and he advised me to come in and have my blood pressure checked.  After a day of vital checks and some tests, the physician’s assistant came in and said everything looked good, it was likely just anxiety. 

Anxiety? I remember wondering how I could feel anxious sleeping in my own bed.  In that moment, I realized how much grief I had been through in the past year – leaving my job, moving to a new city, salpingectomy from my ectopic pregnancy and other gynecological issues, cancer, COVID-19, and losing my dog. I just kept pushing on without recognizing the emotions I was feeling and neglected my emotional health. I tried to keep it together for everyone and act like everything was okay. 

I especially tried hard to keep it together for my parents because I am their only child and I did not want them to worry. If I seemed scared or sad, I did not want them to feel it – I would cry in the shower to hide any sadness or fear I harbored.  If I could have done things differently, I would have been more open about how scared I was. 

Life After Kidney Cancer Will Be Different

These past several months still seem surreal.  Some days I ask myself, “did that really happen?”  I was very fortunate my tumor was incidentally found; my treatment was straightforward; and, I have a favorable prognosis. 

On the other hand, I do not know if my anxiety will ever go away.  Since my surgery and complications, I have recovered from the physical trauma to my body; however, I continue to cope with the post-traumatic stress brought on by the diagnosis, surgery and subsequent complications.  My plan going forward is to stay positive and self-aware of how I feel both physically and emotionally to do whatever I can to stay ahead of any anxious feelings. 

I was also fortunate to have a close family friend to speak with who was further along in her kidney cancer journey. Talking to her through my scans, tests, biopsy and the surgery was so comforting.  As my kidney cancer mentor, I look up to her because she continues to battle something much bigger. 

Nancy Moldawer, RN, MSN, Co-Chair of the KCA’s Clinical Advisory Board, on managing anxiety and depression. Visit our video library.

I know every kidney cancer patient’s journey is different, but we all share similar emotions, especially anxiety, throughout our journeys.  We all have those “why me,” “what if,” “this is it,” and “I cannot believe it” thoughts.  We have different stages of anxiety. The uncertainty between when something is found to when it is officially diagnosed. The period leading up to your treatment and throughout. Post-treatment and that “what now,” “is something wrong,” “is it really gone,” “what if it comes back,” “scanxiety” feelings. 

Finally, what I am not familiar with, but I am aware of are the feelings of those patients that continue to fight, but it is not my place to articulate. To all kidney cancer patients, just remember, you cannot control the type of kidney cancer you get, but how you handle your journey once you are diagnosed is in your control – empower yourself to make the decisions that are right for you!

Recovered and working as a kidney cancer patient advocate.

Lessons Learned

  • Life does not stop when you have cancer or when you are recovering.  You cannot let external stress affect your health or your recovery. 
  • As a kidney cancer patient, awareness of your emotional health is extremely important throughout your entire journey, including remission. Being cognizant of emotions and finding ways to manage anxious feelings will help manage stress.  It is important to do .  what is right for you.  I recommend surrounding yourself with a solid support network, like family and close friends, which can help you to talk about your feelings and work through your anxiety.  Other recommendations include: having faith, connecting with other kidney cancer patients, keeping a journal, exercising, meditating, getting enough sleep, eating healthy, drinking plenty of water and having a positive mindset – it can all add up and make you feel better.
  • If you decide to have your surgery done at a hospital that is not local, make sure to establish contact with a local urologist and hospital prior to your surgery.  If you have complications, it is easier if you already have a relationship with a local urologist.
  • You are not alone, speak with other kidney cancer patients.  In my opinion, it is better to seek out other patients and speak with them one on one instead of messaging on social media threads.  An individual patients’ perspective can be more personable and relatable.  Social media threads are one way to connect with other patients, but use them carefully because they can cause a patient more anxiety. 

Disclaimer:  This was my experience as a kidney cancer patient and not a medical professional. I have included some insights that I wish I would have known before navigating the healthcare system with a cancer diagnosis.  I hope other kidney cancer patients find these insights helpful. 

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13 thoughts on ““Life after kidney cancer will be different” (Part 3)”

  1. I loved reading this 3 part blog. I also am on my journey with Chromophobe Renal Cell Carcinoma. Had my surgery 7 weeks ago! I’d love to connect with Megan somehow.

    Kayla Bulkley

  2. This was so helpful to read and gives me hope and strength to tackle the journey ahead – I am 40 and learned two weeks ago, I have kidney cancer. Surgery is scheduled for next week!

  3. This was helpful. I had surgery seven years ago but I have pain in the area I had surgery. I’ve been to the doctor several times and things have been good. I’m so nervous of reoccurrence and I trust God. Just wondering if anyone else have problems or pain in that area.

  4. Thank you for sharing. I myself embarked on this journey and has surgery 4 months ago.
    I can fully relate to the fear and anxiety relating to scans, doctor visits etc. It can be very paralyzing and if anything goes out of the normal you automatically assume the worst. I had an accidental find myself so I can relate to the blessing but also the level of not processing everything till after the surgery was over. I feel everything very intense now and it has been a struggle to move forward, how long did it take you to feel like yourself again. Sending you love!

  5. Hi there
    My name is Yvonne and I live in Nor Cal. I had surgery July 14th partial removal of left kidney. 90 % of kidney left. Non metastasizing. Still somewhat numb in the left side. Surgery was straight forward. Your right about the anxiety after.
    Trusting God as well. Do you think I have a good prognosis ? My doc seems to think so. I did go see a naturopathic doctor. I’m not always good with my eating and working out but I usually get my 100oz of water in.

  6. it is a year since i had my right kidney removed..a successful operation
    However I now feel so very weak tho 3 checkups have given me a clean bill of help
    am depressed and spend as much time as possible in bed
    any advice, please

    1. Have your iron levels checked-mine tanked after the removal of my kidney and my hemoglobin levels were very low too.

  7. Dear Megan,
    Thank you for sharing your story. I can’t imagine how difficult must have been for you not to be able to have your husband comforting you during your hospital stay. What’s important is that no matter how hard it was in those moments you were strong and fought back, of course with your ups and downs, but you won the battle! This is a lesson for anyone who pays attention!

    Your lessons learned and advice given to patients are extremely valuable! I too had a papillary rcc discovered incidentally in July 2021. PN followed in September, fortunately without complications. However, I had to travel from Canada to US to have the treatment done in a timely manner. The alternative was to wait until January 2022 to have the surgery performed locally, most likely not as successful.
    It is indeed a different life after the cancer diagnosis. I cannot make long term plans, because I cannot see myself in the distant future. I have to take one day at the time, and that’s ok. What I fear most is not to worry my parents who are in the old age. Just like you, I am an only child.

    It is true that I became hypersensitive to any pains no matter how little they are. I currently am less than two weeks away from my first surveillance scan. I am terrified to be honest. My emotional state has seen better days. But I trust God who will guide me through this like he has done it in the past. I will have the strength to hear the news with my husband next to me.

    God bless you Megan! Keep writing about your journey!

  8. Megan, Thank You for sharing your journey wit us.I was diagnosed with right upper lobe kidney cancer, it was found during an ER visit.Instead of a blood clot, they found kidney cancer. I had my surgery April 2022, and will be returning to work in early July. The adjustment for me was slowing down, I am a very independent and move fast in everyday life. Since the surgery I don’t have the same energy level and that bothers me.I am Forever Grateful to God the cancer was found and had not metastasized to no other organ.I still have some pain around the incision site,and the five mini holes from the robot. This journey has been Life changing for me, for someone who hates water,drink 32oz a day.I am walking daily for regain some strength only to discover they are short. I just wonder when will I fell like myself prior to surgery. My Motto: Cancer Mess With The Wrong Chic”! Be Blessed

  9. I have a Complex cyst, upper right pole, MRI and CT show it as Cancer
    Dr says he has to cut me open due to location of cyst not being accessible though lap roc surgery
    Concerned of the complications of having surgery.
    If I do it soon, i can save my kidney. Its about 5cm now
    Mine was also found whle checking for something else
    Known about it for 8 yrs, Dr says prob had it for 15 or more
    Its at the point where its pressing on innards and causing discomfort
    Someone want to encourage me?
    no family, no one to turn to to talk about it
    How will recovery be?
    How big is the incision?

    1. Thanks for your comments!
      My husband just learned of having lesions and tumors on his kidneys. He is going to be having surgery on 10/27/22. To have his left kidney removed.
      I think he is a bit worried but I feel that God will give him peace over this…
      After the surgery is over I will answer your questions about the size of the incision, etc… For now, just be encouraged that everything will be alright…
      I’ll be praying for my husband and I’ll add you to my prayer list. My husband is Mel and my name is Melvishia. We both trust God for whatever happens.
      Have a great day and I will comment again soon. God Love you and so do we.

  10. I was diagnosed with RCC as well about a month ago. I went to see 2 doctors and was mentally ready for my RN. It is 6 cm with extension into the collecting system. I was referred to another doctor who operates at my hospital of choice and has excellent credentials and trained at Cleveland Clinic. He gave me an option between PN and RN because he has experience with complicated surgeries, due to the location of the tumor. I am nervous and scared because I don’t know what to choose to have. I am concerned about the possibility of spread during surgery and recurrence after. Is it safer to do a RN and leave it intact? Will my nerves and stress level be less with a RN. I know I will be nervous and ever time I have to follow up after a PN, I will be very stressed. I am a stressed person in general so I am sick to my stomach just trying to decide and get this done.

  11. I was diagnosed with RCC in October 2022 on my health portal, then trying to reach a urologist was a night mare. Thankfully I was given the name of a urologist in a neighboring city who was highly recommended and he took me right in. I am having surgery to remove 2 masses in my right kidney this Thursday 1/12/23. If the doctor is not able to remove the masses they will take the whole right kidney. Anxiety is ever present and I find that talking to others about how I feel helps as well as prayer. I will admit I am scared. I am strong and healthy but not young any more and God willing all will be well. All your stories were amazing and I hope to find the strength you all have. God Bless you all on your journey.

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