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Papillary Renal Cell Type II

Janna
Posts: 4
Joined: Aug 2011

Hi,
I was diagnoised with Terminal Renal Cell Type II Cancer, As of June 13th of this year.

Back History.

My journey down this road began:

June 29,2008 I woke up and went to the bathroom and as I turn to flush the toilet I got the worst shock of my life. There was nothing but blood. I knew immediately I was in trouble. We went to ER and my blood was down to 9. After several test I was told that I had a severe bladder infection. But, I had no previous signs. A leision was found in the bladder. It was removed on my 5th day in the hospital.It was negative for cancer.

In August I had a follow up MRI. And a week later I was called back for a second MRI with contrast. And again I knew I was in trouble. On Sept. 4th I got a call from the Urologist that was put on my case. He told me I had an 85/15% chance of having Renal cancer on the phone.

He wanted to take the right kidney out immediately. I said you will put it back if it isn't cancer and he said no that they wouldn't do that.

So I went to U ofM Hospital in Ann Arbor MI. It was biopsied on Oct. 19, 2008 and found to be Papillary Renal Cell Cancer. It was decided due to my health and age 65 that it would be safer to do Radio Frequency Ablation (RFA) This was done on November 19, 2008.
Had follow up CTs for about 2 years and every thing looked good. In fact I was told last year that if my CT was as good this year we would go to CTs every 2 years.

Well on May 20, 2011 I had the CT. And when I went to my surgeons office later that day I got the bad news that I had cancer again in the same kidney. But above the RFA Area. It was thought to be a different cancer since this one was bulbous compared to the first tumor. It was decided to remove the kidney and not take a chace of a third re-occurance. The surgery was done on June 09,2011. They took the Right Kidney, the Peri-Sinus Fat Bed (Where the kidney lies in), and 17 Lymph Nodes. Of the 17 nodes 7 were malignant. Making me stage 4 cancer and it was determined to be a very aggressive cancer and it turned out to be Papillary Renal Cell Type II cancer.
We were told that neither Radiation nor Chemo touches this cancer. That basically there is no cure. They can only cut out the cancer if possible. Not good news. I was sent to a Oncologist only to be told that he can do nothing for me. No trials nothing.

Then I found this site but didn't find anyone with my type of Cancer. There was papillary but not Type II. But the others all had oncologists. So I decided to call the Oncologist's office a couple of weeks ago to find out exactly why I was turned away. It was then I learned that the cancer was also in my right renal vein.

No one needed to explain to me what that meant. I knew then I was and am in deep trouble. Becaause this mens that micro -lymph nodes are cursing through my blood stream.

I asked my Primary Doctor what do I tell people as to my condition. And She told me that the term to say is I have Terminal Kidney Cancer. She asked me if I had any goals I wanted to meet and I said the most important one was our 50th Wedding Anniversary. She asked when that was and I said 2½ years. She didn't have to say a word. The look on her face said it all. She told me that I may need to decide on quality to quanity of my remaining time. Eat what you want and enjoy what you can. This is really hard to take. Since I don't feel sick. It is really hard to believe that I am terminal. I am hoping to make it past 03-14-2014. But, I want to have my mind. This is the scariest part. I have seen so many people say hurtful things to their loved ones. It is easy to say that they don't know what they are saying. But, the person who these things are said to have to live with those negative comments. And if it is a child. I have been there and it is really hard to forget nasty and cruel comments. Especially from someone who is suppose to love you.

Next Friday I go for a 4 month CT. I am so scared the cancer will be spread all over. The June sugeryy too over 6 hours. The odd thing that the doctor wrote in his last update to my Primary Doctor and me is that if the cancer is back they will treat it racically with surgery and CHEMO. The latter blew my mind. Why Chemo? Especially if it doesn't touch this cancer????
My prayers are out there for all those suffering from any type of cancer. I am sorry this is so long but it feels good to get it out. My husband has blinders on. I feel bad for him because it is going to be a rude awakening for him. My daughter and son and their families are very much aware as to the situation.

Janna

icemantoo's picture
icemantoo
Posts: 1626
Joined: Jan 2010

Janna, Here are a couple of thoughts. One is to get a second opinion somewhere nearby. I would suggest Cleveland Clinic as they are at the forefront on Kidney Cancer Issues. The second would be to connect with the 4th Angel Program which is physically located at the Cleveland Clinic, but operates independently and helps connect Cancer patients on a one on one basis to a mentor who is of similar age and gender and has/had a similar diagnosis. There is no cost for this.

Best wishes

Icemantoo

jam66
Posts: 55
Joined: Jun 2011

Hi Janna,

I agree with Iceman, get another opinion. It totally sucks that you have to go through this...I'm so sorry. My sister just sent me this link:

http://www.youtube.com/watch?v=Y3csN9A6s5E&NR=1

http://www.youtube.com/watch?v=S8ylpgN_5mg

I just learned that my lousy cancer is most likely in my liver. So this lady is my new guru. Take care,
Jennifer

ams123
Posts: 71
Joined: Aug 2011

Hi Janna - I am sorry to hear your story. I'm wondering if you are on the Kidney-Onc mailing list, it has some of the smartest, most knowledgeable people who are more than willing to give advice and suggestions. Here is a link to the site were you can join: http://cancerguide.org/kofaq/

I hope you find someone to help you.

Linda

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Janna,

You are now an official member of a club no one wants to join, its a club where all members pray for the day when it is no longer needed. Your story strikes a nerve in us all, mere words are of little comfort but you need never apologize for coming here to "get it out", we have all taken advantage of the understanding ear and shoulder to cry on that is found here. We are your new brothers and sisters, a family outside your family that is here when you need it. We support each other on this journey that no one should have to take. Try not to let the word "terminal" get to you, we are all terminal from the day we are born and only God knows for sure what is in store.

Stay strong my sister,

Gary

Janna
Posts: 4
Joined: Aug 2011

Hi Gary and all us who have one cancer or another. I sent this up-date to all my family and Friends. And I thought I would forward it onto you. This is a letter you also because there is confort in knowing we have a place to go where everyone knows where you are coming from. Because you are either on this same journey. Or have been there.

MEDICAL UPDATE
I want thank every one of you for your prayers and good thoughts over the last 3 years.
My CT Scan on Friday October 7 showed no tumors in my Abdominal Area. They did find what they think is pneumonia in one lung. But, I don’t any symptoms or anything to ascertain that I have Pneumonia. But, they put me on an antibiotic to see if the spot disappears. If not they may have to more testing. Also there is a questionable area in my tail bone area. They are having the radiologists take another look at the area. I may have to go for a bone scan.
I will be having CT Scans every 6 months for the next 2 years. And, if nothing shows up by then they will be doing CT Scans every year for 2 or three years. After that they will be every 2 years for life. I am Very Happy but Guarded on this being the end of my journey into the un-know n
I am now a little more optimistic of being here for our Golden Wedding Anniversary on March 14, 2014.
I was told by my primary Doctor that when people ask me what the Statius of my condition is that I tell them that I have Terminal Cancer. With the possibility of having less than 2 years left. My Surgeon never used the words terminal. He was very upset when I told him. But I am not, because what else would you think when you are told that this cancer is incurable. He said that neither Radiation nor Chemo would touch it. He told me if tumor or tumors come back and can be operated on they would do this. Also a possibility of putting me on Chemo in hopes it will slow down the cancer. But there were no promises that it could or would slow it down.
And then there is the fact I have no symptoms’ .In this case would I want to take the chemo and end up being very sick. I will cross that bridge when and if that the time comes.
AGAIN,, THANK YOU ALL FOR ALL THE PRAYERS AND CARDS THAT YOU HAVE SENT ME OVER THE LAST 4 MONTHS.
God Bless you all.
Sincerely
Janna

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Janna,

Terminal is for buses and trains, not us!! You seem to be taking control instead of being controlled, a positive attitude is extremely important in this fight. Continue to live in the present and concentrate on all of the good things in life. Worry only about that which is within your ability to change, you can force cancer to be only small part of who you are. Stay informed and ever vigilant so that if or when you are called into battle you are prepared to fight but don't let the black hole suck you in. Think long term, its important to feel optimistic about your 50th and beyond. It has been 37 years for my wife and I and I fully expect to be at the party in 13 years, promise you'll have a piece of cake at yours for me.

All my best to you,

Gary

Janna
Posts: 4
Joined: Aug 2011

A

Hi Everyone: I am writing to let you know that it looks like I just might make it to our Golden Wedding Anniversary after all.  Our anniversary is 4 weeks away from today.  It is so hard to believe.  My 2 children and their spouses as well as my husband's 3 sisters and their husbands and significant other as well as some dear friends are putting on a anniversary party on March 23rd.  I still won't purchase anything relating to this milestone until March 14th. 

I have reasons.  First I don't want to jinx us and secondly For the last month or so my stomach and lower to mid back haven't been feeling so great.  Is it nerves or is it something else.  I am scared to say anything because should I have the CT Scan early and they find something they will most likely want to operate again.  And I would most likely would be out of commission for some time or worse.  My CT is due On April 26th but if things get worse I will call the surgeon to see if we can up my appointment to have the CT Sometime after the 23rd. Though, not sure what medi-care will say about having it before a year.  They just might not authorize it.  We can't afford to pay out of pocket.  And besides  I don't think giving myself an extra 5 weeks  of not Knowing will make that much difference. Then again it could.

Maybe what is going on has something to do with  the surgery I had 2 years ago  January.. Evidently the surgeon burned my small bowel while trying to burn out adhesions during a navel hernia repair. And instead of doing what is normally done, he took the tissue around the area and wrapped it a few times and sewed it down.  Hence the bottleneck now in the bowel causing major blocking issues.

We thought I had gotten Food posioning in July of 2012. I called my Kidney specialist and he told me, that I needed to go to ER because of having only one kidney.  After 9 hours in ER I was finally taken back. Eventually a CT scan was done and it showed a kink in my bowel from scar tissue.  Causing blockages.  I have had 4 issues not to the extent of this one but still bad, since July of 1012.  I try to make sure I take care of that issue.  But, that doesn't account for the major discomfort in my kidney areas.  I have no clue as to what to expect or what I would or should feel in the case the cancer has returned.  There were no signs either time I was diagnosed. My only kidney is working at 37% at my last check up.  

I learned a couple of weeks ago that with the cancer in 2011 being found in the peri-sinus fat bed that that was really bad as well I learned a year earlier it was also in the Renal Vein.  The latter I learned, is why I was turned away by the Oncologist.  I was sent back to the care of my surgeon and primary doctor as well as a Nephrestist in my area.   Plus with having 7 out of 17 lymph being malignant.  Things don't look too promising for me.

You know, I was always concerned that I wouldn't be here for this major milestone in our lives until a couple of weeks ago when I realize gee,you were so concerned about yourself you never even gave a thought that something could happen to your husband.  Boy, was that a wake up call.  For he is always out there on the roads in inclement weather especially this year.  This is the first time he told me he would call me when he got to his destination in 50 years.  And it was his idea.

No one knows what is going on with me.  Because, on the outside I look good, so I can cover up how I really feel.  Plus, let's be honest no one really wants to hear this stuff.  Unless they are in the same situation. Though there are a few I can vent to. When I have bad days I come up here and write about it to myself.  It helps a little then I delete it.  I think it is getting those feelings out there to see.  And then decide whether to say anything or not. 

 As for getting second opinion.  I tried that with all that were mentioned.  And Not one would accept me.  Cancer Centers of America, John Hopkins, Harvard, Duke, The Mayo Clinic etc. As soon as they heard where the cancer was found they said that they couldn't help me.  So as far as I know there is no where to turn.  Just wait for it to raise its ugly head again and hopefully it is in a place where it can be removed.

So thank you all for your suggestions and good thoughts.

Janna

 

  

 

Srashedb
Posts: 217
Joined: Dec 2013

Janna:

your posts really confuse me; my husband is stage 4 and was from the time he was diagnosed.

We were told that at this time it is not cureable although there are some promising treatments being tested. Once cancer hits stage 4, cure is not the aim.

that being said, he has some experienced doctors on his team and their aim is to monitor and treat early. He had 2 mets in his spine and had a laminectomy on one and cyber surgery for the other.

he had a radical, laproscopic nephrectomy and had a 10 cm grade 2 tumor also in the renal vein which is how it went to the spine. In between the surgeries, he had a 16 day small bowel obstruction which cleared on its own but after losing 25 pounds. Adhesions were thought to be the cause but that is just a theory.

No one, except for one inexperienced doctor, ever told him he was terminal; if you read these posts, you can see that there are worse cases and better ones. The bottom line is that there are treatments and there is hope based on those meds. While it is true that standard chemo and radiation do not work on renal cancer, other treatments do. Truth is that other cancers don't do well with chemo either.

Please go to doctors who are experienced with renal cancer which are stage 4.

Sarah

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Janna, 

I have just finished reading all of your posts, I am a little perplexed to your outlook on your life after the cancer diagnosis. Doctors can never advise us that we are cured, even if the primary tumour is removed and contained. There is always a degree of risk of reoccurrence elsewhere. My primary tumour was ablated by Radiofrequency ten years ago, a new tumour appeared at the same site early last year. The new tumour was removed by a partial nephrectomy, unfortunately secondaries appeared in less than a year. Now obviously this is a different ball game, the treatment being based on control via drugs and surgery where possible. There are many members on here in the same position to differing degrees, and are doing very well!

You had your kidney removed in 2011, with follow up scans every six months for 2 years. This would indicate you have had five scans with no signs of further cancer. I assume that is the case as you don't mention a reoccurence. I think I would be overjoyed with those results. If the next scan in April is also clear you state that scans would be every two to three years. It would seem to me, unless I am completely dense, that at this point you would be in remission not terminal!

Allowing yourself to wear an expiration date stamped on your forehead, as a reminder every morning when you look in the mirror is not good! You have already shown by continued clear results that your doctor was talking out the back of her neck. No doctor worth there salt should make such statements, leaving  their patients feeling hopeless and helpless shows lack of care. Sadly you seem to have built your future around this one doctors prognosis.

You have a scan coming up in April, you should make a determination, if this scan is also clear, then change your outlook and dump the label.

If you have to have a label then scrap - Janna with terminal cancer, and become - Janna proud cancer survivor!

I hope your scans continue to be clear! Don't restrict your life enjoy it, it's so precious. Enjoy your wedding anniversary, and look forward to many more:)

 

Djinnie x

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Janna... time for me to open my big mouth..  I would ignore your primary dr on Cancer, period.  Keep in mind there are many different Cancers, and they are not all alike.  Kidney Cancer, is not curable today.  But there are many treatments that give a lot of time for us.   Do some research and see what may work for you, should you need it.  Your last scan says you have a LOT of time left... more than months...

OK, some places won't take you because you do not have any active Cancer.  Find an Oncologist that will take you...keep looking.

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Hi Janna,

I have pRCC- type 1, and was diagnosed as stage 4 in April 2009.  Although they insist I have type 1, I also have the leiomyomas usually associated with type 2.  The cancer was in my kidney, renal vein, and lymph nodes.  All were removed.  I later had a nodule in one lung removed.  Now I have tumors in the lung, some lymph nodes, and the abdominal wall.  I have had treatment with IL-2, Votrient, a trial drug, Inlyta, and will start a Sutent/Gemcitibine combination next week.  Even with all of that, none of the oncologists has ever told me to say I have terminal cancer.  The word has never been used.  They only say, "We are trying to find something that works for you."  I am being treated at Emory Winship Cancer Institute in Atlanta-- maybe you should give them a try.

So, I have more than 2 years on you, and I'm still here, and you will be, too. Find inner peace, do your best, and don't worry about the rest. 

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

I'm sure everyone gets tired of hearing my story. But I want to tell you Janna.  My tumor also invaded the renal vein. 6 months after surgery I was told that it had progressed pretty extensively and 3 or 4 oncologists told me there was nothing they could do. NOTHING they could do. But I did find another oncologist who had a better plan. Her plan was not to just treat me but to CURE me.

I'm 2 weeks away from 3 years since diagnosis. 2 years past original expiration date. I am strong, healthy and fit. A few tumors remain but are stable. It is expected that I will live a long time and kidney cancer should not be what will take me out.

The message is that there is hope. Please see someone else. Don't accept your doctors prognosis. Hell, shoot for your 60th anniversary.

gatorbob
Posts: 21
Joined: Oct 2013

So you're still at Winship!! Same place,new treatment. I'm still there in Phase 1 doing the Lily thing.No tumor growth in 18 months!!! I'm starting to feel some minor side effects,nothing I can't handle!!! What's your treatment day??? Mines Thursdays. Next one om 3/13. If our dates coinside....lets have coffee. Caroline and I would like to meet you!!!!

Good luck!!!!!!!!!!!  BC

gatorbob
Posts: 21
Joined: Oct 2013

Janna,I hijacked your site to leave a note for Phoenix Rising.

This one is for you!!!! Never,ever,ever,ever be happy with a first opinion!!! NEVER!!!!!! I have stage 4. I've been at Emory,Atlanta,Winship Cancer Center,in a phase 1 trial sponsored by Eli Lily. I'm 18 monthe with no tumor growth and no mets!!!! No side effects!!!!! There are clinics countywide that are begging for our type of cancer to continue the trial.We are quite rare!!Go the government trial website and search kidney cancer. Lots going on!!!!!! Mayo would love to get your call!!!

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Hope to meet you soon Gatorbob! I left a more lengthy message in the LY trial thread.

Janna, I hope you're still tuning in.  There are more of "us" out here and we're doing great!

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