New to this group and have some questions

[Mocna]

I was diagnosed with stage 1 RCC in April 2018. It was an incidental finding. I had a 2.7cm tumor on my left kidney which was removed in July 2018. Pathology came back as grade 3, clear margins, no lymph involvement. My urologist/surgeon recommended MRI of my abdomen with and without contrast every 6 months for 5 years. I had my first MRI last week and it is all clear. My question is... Is my follow up care enough? If the cancer can metastasize to your lungs and brain then shouldn't those areas be scanned as well? I am 43 years old, a mother of 2 girls and there is no history of kidney cancer or any cancer in my family. I still cannot believe this is all happening to me. I never had a broken bone, tooth cavity, abnormal pap smear, no high blood pressure, no high cholesterol... I was perfectly healthy. I am so scared it will come back. Any tips would be so appreciated

[Trooper381]

Monica I cannot speak for everyone but I have to believe that most of us are or we’re so frightened that the cancer might return. I too was perfectly healthy... kept myself in shape, didn’t smoke, rarely drank, and showed none of the usual indicators so I was floored when this was discovered and needed a radical nephrectomy. My oncologist had CT scans ordered every 6 months of my abdomen AND chest. I did this for five years then went to once a year for a number of years. Although there was always some stress in waiting for the results I always wanted to have any return caught early so it could be managed. I’ve been Healthy now for over twenty years so always keep the faith, keep a good attitude and be vigilant. PS: I was 44 and had two young children so I know the emotion that comes with the diagnosis at that time in life. Keep that chin up and stay strong...

[Mocna in reply to Trooper381]

Thank you so much for your response. I am so glad I found this group. Did you alter your diet in any way?

Also did you just have your surgeon/urologist? Or did you see an oncologist as well?

[Trooper381 in reply to Mocna]

First let me apologize for not addressing you by your correct name. So Mocna, although both my urologist and my oncologist told me there is no way to figure out why I got this I decided to go on a healthy diet. I cut sugar/sweets out, ate no red meat, drank protein shakes, took some supplements and continued to exercise regularly. I’m still pretty good about this although sweets and red meat occasionally get into the menu. I will never know if this is what helped me but I figured it couldn’t hurt. As I said I do have a urologist and an oncologist and this has made me feel confident that I’m getting total care. It’s been 22yrs. and I still visit them once a year. No more CT scans of course! Hope this helps. Again...keep a positive attitude. Won’t be easy some days but again it can’t hurt.

[MICHIGANDAVID]

Welcome to the group.

[Mocna in reply to MICHIGANDAVID]

Thank you so much. I'm so glad I found this group.

[MICHIGANDAVID in reply to Mocna]

Please ask questions. Also always remember to do your own research. There is a lot of misleading information out there...

[Judyanne]

Hi Mocna,

The AUA and NCCN have guidelines on scanning based on stage of your RCC. I have stage 3 and only had an X-ray for my lung which showed nothing. However, 6 months later CT showed numerous nodules. X-ray missed because below 1 cm. For stage 3 I should of had a baseline CT. Stage 1 is lower risk but I would check out the guideline in the NCCN for kidney cancer. My nodules turned out to be lymphoma though vs mRCC.

[Mocna in reply to Judyanne]

Thank you so much for your reply. I will talk to my doctor and ask for an xray

[4thround]

My case was somewhat similar to yours. I was cancer free for 8 years and have had metastasis since 2015 to my liver. I see my urologist yearly, a nephrologist (for kidney function) and my oncologist for frequent follow up and the latest research and medicines to fight metastasis.

In my opinion, your urologist/Surgeon will refer you if something is suspect. Many times with recurrence, surgery is not the best option. It would be advantageous to already have a relationship with an oncologist you like. So I would find that good oncologist for follow up. Also, that first year my scans were done quarterly with other baseline bone scans and tests.

[Mocna in reply to 4thround]

So you had stage 1 RCC?

And grade 3?

Clear margins?

No lymph node involvement

[4thround]

Yes. That’s right. I currently have no lymph node involvement just a large tumor on the left side of my liver.

[Mocna in reply to 4thround]

So what is your prognosis with the liver metastasis? I can't even imagine how hard that must be. I feel sick to my stomach most days because I'm so scared of it coming back

[4thround in reply to Mocna]

I don't feel so much fear as it makes me sad. However, I had been through sarcoma with my 19 year old son who died at age 25. Losing a child puts a lot in perspective. I have had all the genetic testing, nothing came up. I have 8 siblings, none have had cancer. I have always been a runner and eaten reasonably well, in fact, I had run my first marathon a few months before my cancer was discovered.

At this point, 13 years post surgery, I am still active physically, enjoying my family and 3 grand kids, dating someone,and active in the community. I am on my 6th medicine with a few bouts of side effects, but generally mild. I realize that there were no therapies for RCC even a few years before my diagnosis, so I try to feel grateful. I think most of all I fear not being able to take care of myself or caring for my family.

It helps to have an oncologist who always has a next plan. My last scan had progression and and we went on to my 6th medicine, Inlyta. I try to focus on living and not what "could happen". I sort through what is in my control and out of my control. I don't want to waste a minute worrying about something I can not change.

It's not to say I don't have days where I feel a bit down, lazy and unproductive. I try to recognize it and know what works for me to find my way out. Sometimes is hiking, seeking out friends, or a movie by myself to get away from everything. I am a woman of faith but sometimes that is the harder part of understanding this journey.

Hang in there. Keep one foot in front of the other and keep going. I think finding and establishing a relationship with an oncologist you feel confident in would help you to know there are many therapies to try if your cancer were to progress.

[4thround in reply to 4thround]

I just realized after that long dialogue I didn't answer about my prognosis. The truth is I don't know. I have not asked. I know its good that there is no lymph node involvement or spread to organs other than my liver. There are more meds to try. Being a nurse, I am following my labwork for liver and kidney function which are both stable for now.

[Mocna in reply to 4thround]

Your reply truly inspired me... Your frame of mind is so wonderful and positive

I hope to reach a point where I can feel like that, more so THINK like that.

You are such a strong woman... Losing a child must be devesta ting... I'm so sorry.

You're wonderful ❤️

[oncowoman]

Mocna fear is such a constant. I think for many people this comes as such a shock. Since you are so young have they done genetic testing at all? Even if you don't have a family history your age is an indicator. Wishing you all the best.

Debbie in NJ

[Mocna in reply to oncowoman]

No they have not done any genetic testing and there's no cancer in my family. My doctor said it's just bad luck.

[Mocna]

No they have not done any genetic testing and there's no cancer in my family. My doctor said it's just bad luck.