Papillary Renal Cell Type II

ams123 said:

Mailing List
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

Janna said:

UPDate

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

Janna said:

Up Date

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

 

  

 

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 said:

Hi Janna, I have just

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

 

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 said:

I have papillary renal cell type 1-- I think

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. 

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.

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!!!