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To those Newly Diagnosed - Pay Attention

rbirdie
Posts: 12
Joined: Jan 2014

Hello - 

I have posted here before, but I am hoping that those newly diagnosed will learn from my experience. I have learned that I did not handle things well. Live and learn. 

I found out a year ago that I had RCC. My tumor was small and my doctor assured me it was no big deal at all. Almost like it was not even a real cancer. Assured me that I didnt need an oncologist, I would need minimal follow up and my chance or recoccence was less than 2%. 

I am an analyst - so I am pretty intellligent. Well, little did I know, this was way out of my league.

Lesson 1 - Research - And that does not necessarly mean google everything. It means things like this site. Survivors that have been there. Trusted sites like ACS. Do your homework. 

I had my surgery a year ago today. It was a laproscopic surgery. My tumor was small. They told me it was cancer. I was dumb. I didnt ask anything. Find out everything you can. Healthy ways to eat, signs to look for, take it seriously. You dont get do overs. 

Lesson 2. Ask questions. Ask what kind of cancer specifically. Ask how aggressive - ask Fuhrman rating. Where exactly is it?

I was very sick in the hospital. I vomited all day, every day for 5 days until there was nothing but bile coming out of me. I didnt ask why. I just was sick. They came on my discharge day and told me it was cancer. I said ok. He said it was small and would probably never come back.

Once home - I developed a fever - extremely rare for me. I never get fevers - I was worried- I knew this was not right. I called the dr and he said no worries- gave me antibiotics for week.

Lesson 3 -  If you know it is not right - then it isn't. 

Since my surgery I have been in hospital for 3 - yes 3 kidney infections. All infections have been Strep B. I believe they are all from surgery. My kidney has not stopped hurting since the surgery. I have had hemotomas in my left side. There has been issue after issue. My surgeon has blown me off. Despite what he advised me, I went to an oncologist. He pulled my pathology report. The first thing he said was - I am not positive they got it all. Well being the idiot that I am, I trusted the surgeon I went to and moved on with my life.

Lesson 4  - Keep your records. Get them right away and keep a file. I never got my pathology report. I never looked at it. Why? Because I was dumb.

Finally I came to my senses after my last kidney infection. I went to a new surgeon. I have been on antibiotics for 7 weeks now. It it not going away. I went and got my pathology report myself. 

I have an aggresive cancer and I have positive margins. My tumor extended beyond my kidney, so the positive margins were exposed to my abdominal cavity. My chances of recoccurance are high. When the new surgeon saw the pathology report, the first thing he said was " you have positive margins, did you know that?" when I told him no, he was shocked that no one went over the report with me, that no one explained what was contained in that paper. 

Lesson 5 - You need to trust your doctor, but first you have to trust yourself to take care of you. If you do not take charge of your healthcare and be your own advocate then no one else will. 

I hope that this will help someone. I should have been more proactive with my own health. I just didnt know better. 

Cheers,

Robin

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I guess the reality portion of kidney cancer has hit home. Sorry. I think the message we have been pushing for quite some time is for kidney cancer patients to be diligent in their own care. Get medical records. Second opinions. learn of options. Push for frequent testing and follow ups. Just to name a few. What concerns me is how so many people wear blinders when they get diagnosed. So many try to not accept the truth or their doctors do not give them accurate interpretation of surgery and testing results. Oh, how I hate to hear "We got it all". Or,"You don't need an oncologist."

Many of us are here only because of we grabbed our cancer by the horns and are hanging onto a vicious ride. There will be winners and losers. But there never used to be many winners. I know I have extended my life significantly. (Well not just me. Finding a Doctor who really cared was like winning the lottery.) We used to push how important it was to do everything possible to stay alive because the next big thing is just around the corner. And you have to be alive to benefit from it. That message hasn't changed. Go get'em Robin. Keep us posted . Fox.

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

A nephrectomy is major surgery. Sometimes there are complications and sometimes it does not go well. That being said there is no reason for a doctor to ignore and not go over with you a path report especially where it shows areas of significant concern.

 

Icemantoo

rbirdie
Posts: 12
Joined: Jan 2014

Thanks Icemantoo. I agree with you. But I do take responsibility as I should have been more proactive from the beginning with my own healthcare. I was uneducated and that is my own fault. We live in a world where insurance companies dictate our health and doctors work off of a checklist to diagnose us. It is our job to be our own advocates and speak up when we know something is not right. 

The doctors work for us. We can fire them if they do not do a job to our satisfaction. 

firedude21
Posts: 52
Joined: Sep 2014

After a partial of my right kidney in 2004 I had scans every four months for a number of years. Sometime later, I believe around five years I was scheduled for a scan every six months. I believe that it was around eight years that my scans were scheduled yearly. This August I was diagnosed with a tumor in the bottom pole of my right kidney that had spread to my hip bone. If I had it to do all over again I would have insisted on a scan at least every six months. I believe if I had done that it would have been much more likley that the cancer would have been contained in my kidney making it much easier to deal with. Just something to think about.

 

The best to all

firedude21

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Robin, sorry you need to be here...  And you learned some lessons the hard way for sure.  I wish we could get to every person prior to surgery and offer suggestions.. but that just rarely happens.  Not all doctors are at the top of their class.. just like in any profession. 

I fired two Oncologists.. it is important that you see a top Oncologist.. even if that means some travel.  Google your Doctor and see what they specialize in.  The same for surgeons... but in your case that is already done and over.  A more experienced Surgeon may of done your surgery differently, hard to say for sure.

Follow Up, you should be getting CT Scans (with Contrast if possible) every 3 or 4 months, for about 2 years.

Speaking of scans, equipment and Radiologists are not all the same either.  Some places have old outdated equipment.  A Radiologist may not have RCC experience and not know exactly what to look for.  Scans should include the Chest, Abdomen, and Pelvis areas.

What type of RCC do you have..?  Clear Cell is the most common.  Clear cell has some typical places it shows up first..  the Lungs being the most common.  

Good Luck..!

Ron

 

rbirdie
Posts: 12
Joined: Jan 2014

Ron- thank you for the guidance. It was clear cell. I have pretty bad asthma and have had issues with my lungs before. I would suspect that may be my weakest point. I am not sure if that is how it works or not. 

The only follow up I have had so far was an ultrasound of my kidneys. Nothing else. 

I have been in alot of pain for the past 2 days. My new doctor is thinking there may be more going on besides a kidney infection. He has ordered a CT scan (no contrast). Contrast is an issue as I have a severe allergy to shellfish and they do not want to give it to me - even with the premed. I had the mri before, but had a bad reaction to the gadilyn (spell check needed). 

I will be honost-- I am worried. 

 

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

I would be rather concerned because you first wrote that you have an "aggressive cancer" and yet your only followup has been Ultrasounds.  If so, that really is not acceptable.

In fact you should be under the care of a renal cancer expert.  You should not settle for anything less.

Contrast becomes important if your CT-scan reveals mets in soft tissue like the liver.  It will help the tumors become more distinguishable from healthy tissue and they can take a more precise measurment of their size.

rbirdie
Posts: 12
Joined: Jan 2014

I am concerned about the follow up and have gone to another doctor. He ordered a CT scan. As of now I have only had the ultrasound to screen for the cancer reoccurance. The CT is for my chest to pelvic area. Alot more coverage than a US. It is a step in the correct direction. 

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

it's ok to have a scan without Contrast. A good Radiologist will find Mets if there are any. Of course we all worry, that is one reason we are here. Ron

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

I have not heard the Term "positive margins" what type of report is that found in? I have access to all radiology reports and don't see that there.  My husband is "Stage 4 advanced and aggresive"

We are going for re-Scans with contrast next week. 

I love your post.  Its sad but it rings true for us too.  My husband had a tumor removed in 12/2012.  He didnt go for the follow up appointment because he had no insurance and never knew it was cancer until 5/2014.  They should be responsible for making sure we find out we have cancer (a letter, a phone call).  But the self responsiblity part says he should've gone for the follow up appointment.  What a painful lesson to learn.  How often we go to follow up appointments for Dr's to tell us everything is ok.  Its like they cry wolf. 

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

GSRon I found you answered this in another post.  Thanks!

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

One more thing...SInce I have the definition now:  The margin is described as negative or clean when the pathologist finds no cancer cells at the edge of the tissue, suggesting that all of the cancer has been removed. 

This statement "the pathologist finds no cancer cells" is what my husband was told in 2012.  He thought it meant he doesn't have cancer.  UGH!

rbirdie
Posts: 12
Joined: Jan 2014

I had no idea what this meant until the new doctor I am going to explained this to me. He drew me a picture and told me how it applied to me and why it was important. He went through the pathology report so I understood what it meant. I should have done this in the first place. 

a_oaklee
Posts: 526
Joined: Nov 2013

R birdie.  It was very kind and thoughtful of you to share this information with others.  Please don't be so hard on yourself.  All of us are learning as we go.  There are vast numbers of people who are not on the internet and they are not getting the best of care.  Ignorance is bliss for many people.  I'm glad you found this site and are now being proactive.  Try to remember all the things you did do right.  You had your surgery, and you found a new doctor that you like.  Keep going forward and enjoy today.    Annie

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

it's good to know you are in good hands now :-)

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