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New To Kidney Cancer - Looking for Advice

NYCKidney10
Posts: 7
Joined: Jul 2019

I'm very glad I found this support group, as I am going through an enormous flood of emotions.

 

I'll keep my story brief, but would love any guidance anybody has based on your own experiences.

 

BACKGROUND: A few weeks ago, I noticed blood in my urine and after two ER visits caused by this and major left flank pain, a CT scan with contrast revealed I had a mass in my left kidney. While the tumor was relatively small, since it was pressing against the side of the kidney, it was likely to be a Stage 3A and the entire kidney was to be removed.

SURGERY: I had successful surgery on June 28, two weeks after my first symptom, and the pathology revealed that 12 lymph nodes as well as the arterial vein did NOT have any cancer. Also to note: CT scans of my chest and a look into my bladder prior to surgery showed nothing had spread. So the surgeon removed a significant margin around the kidney as well as the lymph nodes to try to do his best to remove what we hope is everything. The reason it is still scored a 3A is that the tumor went into the exterior fat of the kidney. I also have papillary Stage 3A, which does not have any clinical trials available, as clear cell seems to be the more prevalent one.

ONCOLOGY: I met my first oncologist last Friday and as expected, he said all I can do right now is get regular scans (every 3 months for at least the first year or two) and hope nothing dormant reveals itself. Should that happen, the hope is that there is more science and at that point, I could use immunotherapy or perhaps some clinical trials if they are available for this to combat the spread. As an FYI, my wife and I are seeing another oncologist this week, as a second opinion is always valued.

PSYCHOLOGY: This is the hardest part ... the uncertainty. This all came as a complete shock, as I'm 44 years old, totally healthy otherwise and have an infant daughter. The struggle is the fact that there is nothing proactive I can do anymore. I always feel most comfortable doing SOMETHING to tackle any issue I have in life, and this is the biggest challenge I've ever had.

Is there anybody out there who is going through something similar with a similar stage? If so, how do you handle the waiting? What has your journey been so far? Any advice for relaxation techniques, other support groups, ways to focus on living when your body feels so anxious about the future?

Thanks in advance for your help. I really appreciate it.

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

 

 

If I am reading the pathology report correctly, I have papillary renal cell carcinoma.  Tumor size 17.5 cm x 12 cm x 11 cm.  Type 2.  Grading of PT2b pN1.

My cancer was discovered 6 1/2 years ago.  Surgery on 2/1/2013 to remove the problem kidney, related adrenal gland and 15 to 18 lymph nodes.  Cancer was in the kidney, the adrenal glands and most of the lymph nodes.  The cancer reappeared in my chest on two different occassions.  The first in perhaps 2015 and the second in perhaps 2016.  Right now, the cancer is under control.

Initially, I did get into a clinical trial whereby Everolimus was tested to see whether it had an impact on people who had recently gone through surgery -- but had not experienced a recurrence.  Upon my first recurrence, I was treated with radiation and went on Sutent.  That lasted for maybe a year before it came back again.  I then went on to Votrient, which has been very effective for me.  

 

 

Enough about me.

You ask about the waiting.  It's toughest as you start out on this "life with cancer" routine.  I was fortunate enough to have some good results and have survived more than twice as long as my surgeon suggested at the time of my surgery.  With good results, the waiting business gets easier and easier.  Even after the recurrences, the waiting wasn't as tough as it had been early on.  I think that's because we understood that there are several drugs out there to try as possible solutions.  We felt that we'd find one that worked.  And we have.  I know that will change some day, but we're feeling good right now.  My suggestion for you is to solicit successful stories from people who have walked this path before you.  Realize that, while this is very new for you, it's old stuff for others.  Learn from their experiences.  Expect successful results.  There are plenty out there who have had a run of good results.  How long that run will last is another question.  Surprisingly, the question of when negative results will show up isn't something that I concern myself with too much.  Perhaps because I'm at a different stage of life (I am age 69 and retired) than you are, I can more easily put that question to the background.

I hope this helps a bit.

As an aside, we whole-heartedly believe in the importance of a good diet -- many foods are thought to be helpful for one's body as it tries to deal with cancer cells.  Also, exercise is important.  Our faith has also been a big help.  Oh, and a good oncologist is critical.  One with a positive attitude.  My surgeon's attitude = not so positive.  My oncologist's attitude = just the opposite.  It's good that you are looking for a second opinion.

You have my best wishes and please keep the forum advised of your progress.

 

Dutch

NYCKidney10
Posts: 7
Joined: Jul 2019

Dutch -

Thank you so much for your thoughtful response and I'm so happy to hear you have everything under control. You have a great outlook and I really appreciate your openness in sharing your experience.

We have our first scan in late September and the host of upcoming scans combined adds up to lots of anxiety, but we're trying to figure out ways to deal with it. Everything is just so fresh now.

You mentioned some advice for moving forward, including exercise and a good diet. I do exercise regularly - I'm a runner - although that's been on hold as I continue to heal from surgery. But with regard to foods, have you or anybody here found any foods in particular that are helpful in providing immunity benefits?

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

You asked about food options:

Diet and cancer.  There's divided opinions on this.  You'll hear nothing from your oncologist about diet being a possible factor in one's ability to deal with his/her cancer.  I've had a good run of over six years and my wife and I are sold on the idea that diet really is something to be considered.  I get by on a low doseage of Votrient (making side effects more tolerable) and we think that diet has something to do with that.  My oncologist has an open mind about it, but isn't sold -- not enough science to it.  He does want us to continue (with Votrient and with our diet choices) as "if it ain't broke, don't fix it".  Finally, it's interesting that many cancer drugs are plant-based, suggesting to me that what we eat makes a difference.

My wife broke open her file of cancer information.  I'll try to share.

One sheet of paper has her listing of foods which are thought to fight cancer.  Included:  garlic, broccoli, brazil nuts, lemons/limes, blueberries, artichokes, salmon, scallions, kiwi fruit, olive oil, black tea, apples, avocados, bran cereal, cabbage, brussel sprouts, carrots, cherries, coffee, corn, dates, ginger grapes/raisins, kale, mushrooms, peas (and other legumes) and pomegranate juice.

Another thought:  vegtables that are yellow, orange or red are said to be beneficial -- tomatoes, red/yellow peppers.

We try to limit our use of red meat in our diet.  Likewise for processed foods.  

Spices:  tumeric, garlic, ginger, black pepper, cayenne pepper, oregano.

Another clipped article contends that "diets that include fruits and vegtables rich in antixidants or other compounds known as phytates can prevent the development and metastasis of kidney cancer".  Fruits and vegtables are thought (by this author) to decrease the chance of developing cancer as they contain anti-inflamatory and antioxidant properties.  The last point from this aricle is that fruits and vegtables rich in carotinoids (orange-colored fruits and vegtables such as carrots, tomatoes, apricots, ginger and squash) help to prevent cancers of the kidney.

Whole grains and cereals, legumes and nuts -- all thought to be beneficial.

Add spinach and beets.

This is a rough recap of what I see in my wife's files.  There is plenty of literature out there; you can spend hours researching.  

We don't do a lot of fast food.  Most restaurant food isn't the greatest for my disease -- but, we aren't going to discontinue eating out with friends.  Certainly, the words "high glucose corn syrup" is a warning for us.  All of this is a general guideline for us.  We aren't totally immersed in these foods.  We have just tried to shift the balance away from processed stuff.

Again, many will agree with some of this.  Many will disagree.  It is our belief that moving our diet in this direction has been helpful for me.  It'd be hard to imagine how it could be hurtful.

Dutch

 

 

NYCKidney10
Posts: 7
Joined: Jul 2019

totally missed your dietary advice. Thanks so much! I will start looking into this. Really appreciate it!

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

-the worst is over and you can lookl forward to walking your daughter down the aisle.

 

 

 

 

 

icemantoo

NYCKidney10
Posts: 7
Joined: Jul 2019

Icemantoo - Thank you so much for the kind words. You probably won't be surprised to hear that we've heard that same sentiment from a lot of family and friends - albeit people who have never had to deal with this - but it is hard to imagine.

stub1969's picture
stub1969
Posts: 790
Joined: Jul 2016

I'm so glad you found us.  We'll try to do what we can to help you out with your questions or concerns.  Don't worry--we've all been there and had the same reaction, same anxiety, same fears, and many of the same questions. 

A couple of little tips about this site.  At the top right corner is an icon "Search CSN Content".  Click on that and put in a topic that you want to read up on and you'll be able to tap into past posts.  This really helped me out when I first started this journey.  The second tip is if you click on the "name" (for instance my "name" on this site is stub1969) you'll have access to that member's personal page where they describe their journey.  I would encourage you to fill this out.  I found it to be rather therapeutic when I did it.

A shout out to my midwestern buddy, Dutch!.  Great advice from both Dutch and Iceman.

I want you to know I hear you loud and clear.  I was 47 and very active when I was diagnosed.  In fact, I was training for a half marathon.  My wife and I have three children, two of them were still in K-12 school and the other was in college when I was diagnosed.  I was devastated and so worried about talking to them about this and what the future held for all of us. 

Fortunately, I have been clear of cancer for the past three years.  In my search for answers to why I got this cancer, I went through genetic testing.  My results were negative for any mutation or genetic abnormalities.  So, I'm just going to mark it up to bad luck.

oh--one more thing...I hope it isn't too late to encourage you NOT to search Google for answers.  The data is old and out of date.  Plus it is a real downer!   June 28th isn't that long ago so try to focus on healing.    

Blessings!

Stub 

NYCKidney10
Posts: 7
Joined: Jul 2019

Stub - Thanks so much for your words of wisdom and congrats on being three years in the clear. That's incredible news.

I totally hear you on the Google front, but it's sometimes tough because you want to feel informed and like your best advocate, so sometimes research can be helpful - at least in better understanding what you have and what doctors may have explained to you. That being said, I totally agree with you that the data on there is scary and definitely a downer and it's hit home hard for me and my wife this last week as I continue to heal from surgery.

Thanks so much on the site navigation advice as well. I will definitely take a look.

Much love to everybody!

eug91's picture
eug91
Posts: 139
Joined: Jan 2019

Sorry you had to join us, but this is a terrific forum with a lot of great folks. We know what you're going through and we know how rough it can be, but we know that you can get through it. We're here for you if you have any questions or concerns or just want to vent. 

I don't have a ton of advice since I'm only eight months into this whole you-have-cancer experience myself, but take it a day at a time. You're only a few weeks out from your neph, but even now, you've probably noticed how much you've physically recovered day-by-day. The mental part is just as hard - maybe harder - but take it day-by-day and you can get stronger. 

You've got this!

NYCKidney10
Posts: 7
Joined: Jul 2019

 

 

Eug -

You are totally correct in that the mental part is incredibly challenging, especially now that I am significantly better physically since the surgery almost 3 weeks ago. I can’t help but try and be my best advocate and look up research from doctors through Google, Twitter, or even on Podcasts affiliated with hospitals.

I realize this is probably not the best course of action, as it has taken a toll on my well-being. I have tried to use the search function here to see if I can find as many fellow stage 3a papillary survivors, but it’s tough to navigate.

Just got back from the market, where I bought a ton of organic vegetables and fruits. I do believe diet helps, if anything state of mind. I look forward to when I can get back to exercising, which will also help my mental state. 

But I won’t lie… I am scared and the unexpected is very difficult to navigate. Any advice you would like to provide is greatly appreciated.

Thanks again to you and everybody for your responses and support

eug91's picture
eug91
Posts: 139
Joined: Jan 2019

I wish I had some great advice, but we're all just trying to figure it out. Take the healing process one day at a time - both physically and mentally. You're only a few weeks post-surgery. And understand that you're not alone in this. We're all going through this and we're all getting through it together. 

We're with you! You've got this!

 

MizzouFan
Posts: 10
Joined: Nov 2015

NYC, yes the uncertainty is the hardest thing to deal with in your situation, do your best to keep everything in proper perspective, easier said than done. You have Papillary RCC, you need to know type 1 or type 2 as they are different. The two types differ in effectiveness of PET Scan surveillance and drug therapy, educate yourself, your knowledge, peace of mind, and quality of your healthcare are the only things you can control. Good luck, you and family have a long journey ahead, you running a marathon not a sprint. Best Regards Mizzou

cubsfan9
Posts: 66
Joined: Oct 2013

Good Morning!

I have no expreience with papillary, but would offer a couple of other support groups...kccure.org and smartpatients.com

As for the emotional side of this, I think we all have different ways of dealing with it.  I am the caregiver, my husband is the patient.  For me, knowledge is the key.  If I know what I am dealing with and what the options are I feel empowered.  My husband, on the other hand, deals best by being as active as possible and doing as many 'normal' things as he can.  It is, as you stated, a shock!!  I hope you will, in time, be able to adjust to the New Normal and discover what coping techniques work for  you.  When we were told at the beginning of this journey that kidney cancer could be considered a chronic disease....well, just couldn't wrap my head around it!!  My husband's initial diagnosis/surgery was in 2004!  

stephbryan
Posts: 1
Joined: Jul 2019

I am so glad I found and joined this group today.

I had an open partial nephrectomy on June 26,2019. During the night when everyone is sleeping my mind runs wild. You are not alone. There are alot of what if's that cross my mind.

It's a real struggle and I have not found the answer on how to get past this. I try to talk to and surround myself with positive people. Still I worry what will come when I have my follow up in October.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

You've got cancer, and cancer still kills people.  So you have every right to be worried and frightened.

But it does not kill everyone, not any more, and you can demand the very best and most recent treatment.  Make sure you get it. Thorough follow-up vigilance is vital.

Anything that helps your overall health, both physical and mental, will assist but health food is not therapy.

Learn to live with it and enjoy what you've got and hopefully will have. 

Stay positive and get on with life.  

Best wishes, Fred 

AliceB1950's picture
AliceB1950
Posts: 32
Joined: Jun 2019

I have a different take than "Reality." You HAD cancer.  Everything was clear after your surgery, right?  So eat reasonably but not fanatically, get your scans as scheduled, finish healing, and go out there and live your normal life.  Unless/until it comes back, you no longer have cancer.  If it should return, you deal with it then.  Why cheat yourself out of living by dwelling on the what-ifs?

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