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2006 HAD KIDNEY REMOVED-IT'S BACK

Steve51
Posts: 23
Joined: Oct 2016

Okay, I'm new here, but not to kidney cancer. In March 2006 mine was left kidney. I had it removed and it was 12cm. I was 54 at the time. After 5 years on the program, I thought I had clear sailing ahead. May 2015 I received a call from my doctor and something showed on my right lung in my annual CT scan. It was RCC and had it removed Aug 2015. Now, another showing. Again, right lung and again, the biopsy revealed RCC. I've never had any treatment other than surgery. I am now waiting for an appointment with the surgeon. We have all lived through the fears that is associated with this site. I have been so fortunate to be free of symptoms for 9 years. I'm now 65, retired and living a storybook life. It's very difficult not to think negatively when you have two recurrences within a year. Has anyone else had anything similar to my situation? Yep, the fears are back and I'm looking for some encouragement. Thank you

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

Hugs!   I take Votrient.  Wondering if they are considering targeted therapy for you?

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

Hello and welcome! 

Sorry to hear about your recurrence. If I am not mistaken, Donna here was Stage IV, had couple of recurrencies and then became clear and is currently NED for 8-9 years! 

As suggested above, perhaps it is time to think about medical therapy? 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Is that really the only treatment youve had? I find that astonishing on a tumour that size. There are so many immunotherapy treatments out there now, surely your doc would prescribe one. Are you living in the middle of nowhere. Is there a teaching hospital near you?

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

have mets. Some not for years like you. Find an up to date doc and join the oral med route. Maybe more surgery. However, you must be living the good life because most of us don't get to be as fortunate as you with so little non cancer activity for so long. I'm almost 6 years and ALWAYS have new tumors. But nothing is out of control yet. i'm 64.

Steve51
Posts: 23
Joined: Oct 2016

First, thank you for the imput. My health care provider was Kaiser Permanente in Los Angeles. Now I'm being treated at the City of Hope in So. California. I am very lucky to be here. What great people. I will be having surgery next month. And, I'll be back to comment on new drugs I'll be on. Thanks again

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

You are at a hostpital with cutting edge care for kidney cancer. You will get good treatment, the best in So Cal as many will agree. Trust your doc's. Best to you. 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

I agree. City of Hope is a great place for treatment. So good to hear you're able to go there. All the best, keep us posted...

sagibala
Posts: 4
Joined: Jun 2016

Sorry to hear this.

Was it clear cell cancer?

It may happen this type of cancer comes back many years after nephroctomy at times.

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Sounds very familiar to my story. Right kidney removed. remission for 9 years mets to lungs. Scary as hell only to be delt with one day at a time. I am on cabometyx now and am very happy with the lack of any bad side effects. Best wishes and God bless you.

Steve51
Posts: 23
Joined: Oct 2016

Thank you all 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Steve,

I am so sorry to hear that after all these years your cancer has returned. I am sure it must feel devestating. Please keep your chin up. Treatment has come a long way, baby!!

Please keep us posted on how things are going!

Hugs

Jojo

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Oh Steve, sorry you are going through all of this, enuff!!

But know we're here for you along the way, all the way!

Remember that. So many here are still fighting the fight!

We will walk along side you! Keep us posted!

Hugs, Jan

Steve51
Posts: 23
Joined: Oct 2016

Again, thank you all. Your words and kindness mean so much.


Surgery was Tues 11/1 and it went well. It was right lung very close to the heart. It was tricky, but Dr gave a thumbs up. I'm doing okay and hoping to mend quickly. I will have a follow up appt with the surgeon on Nov 10th and another appt with the oncologist Dec 7th. I will let you all know what treatments I will be receiving from the City of Hope. I'm very curious about the treatment. If they believe they got it ALL, will I still be treated with drugs? I have never received any treatment except surgery. By the responces here, I can see some of you are surprised. I am clueless.  Everyone is absolutely great at City of Hope and I am very fortuninate for them and this forum. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi Steve. I'm also at City of Hope. My oncologist is Dr. Pal. Who are you seeing from oncology?

I had a met to my adrenal gland after 2 years cancer free. Now it's been almost 2 years since my adrenalectomy.

I got a couple consults after the adrenal gland. I think if you're tumor free after surgery, there's no standard approved treatment. They had a couple of studies going on. They wanted me to do one after my adrenalectomy, but I decided no to do it. It was votrient or placebo I think. I'd done a similar study after my nephrectomy and decided I didn't want to do another.

The oncologist told me if I had a recurrence within a year, they'd probably not do surgery again and instead do medication. If over a year out, and operable, they'd probably take it out.

Glad you got through the surgery ok. I like City of Hope. I had my nephrectomy at UCI Medical Center and was very happy with the surgeons there. Somehow at COH, I felt like they do so many of these, that maybe it's a little too routine (on my adrenalectomy). I had a complication on the adrenalectomy. I was allergic to the surgical glue. Wow. It took a long time to heal and was very annoying. They acted like it was no big deal at all. I didn't care for that! I thought the nurses in the hospital were top notch.

Wishing you the best. Hope you're done with this. I'm very curious what medication, if any, they will give you. Also if you don't mind, I'd love to know what oncologist you are seeing. I've only ever saw Dr. Pal at COH. I have had second opinions at Cedars and USC. BTW, Cedars has a kidney cancer support group that meets once a month. We have a speaker (RCC related) and fellowship. If you're interested send me a message and I'll send you the information.

Best wishes,

Todd

Regards,

Todd

Steve51
Posts: 23
Joined: Oct 2016

Hello Todd,

Dr. Pal is my guy. City of Hope has been really good for me so far. The facility and the people are fantastic. I am happy to be receiving treatment here.

In my last post I explained COH asked to be part of a study. I believe you were asked and declined. I have several weeks to decide. I will be seeking information and feedback and then make a decision. 

I am terrible with medical terms and understand them less. I noticed many people on this forum are very informed including yourself. I'm hoping I can make a good choice through my research and the info I find here.

Thank you

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

It's good to hear that the surgery went well.

Looking forward to hearing updates as they come.

gregslovey
Posts: 33
Joined: Oct 2016

My husband had a very similar thing....kidney out 5 years and all was fine til they found mets in his lungs last May.  there were five scattered, so they could not remove them, but tried IL2 and now on Votrient which is working.  Typically the best treatment for RCC is to remove it if you can, so it sounds like you're on the right track. 

Good luck to you

Steve51
Posts: 23
Joined: Oct 2016

It has been almost a month since surgery and the mend has been slower. My follow up with the oncologist will be Dec 7th. I don't know what to expect, but ready to move on. I really appreciate everyone's concerns and support.

Yes Todd, Dr. Pal is also my oncologist at City of Hope. I have only seen him twice and so far I think he is great. All my other dealings have been with Kaiser Permanente since 2006. I have never had 2nd opinions and so far I think COH is the right place for me. Maybe after reading this forum my thoughts will change, but for now I'm good. 

I left California 5 years ago to retire and live in Arizona. I like the idea of a support group. I appreciate the info, but probably too far for me.

I hope evryone is doing etter than yesterday and we continue to have something to look forward to. I'll be back after Dec 7th.

I thank you all

Steve51
Posts: 23
Joined: Oct 2016

I had surgery on the right (again) 11/1 and a small tumor was removed. It was near the heart so blood vessels were involved and made it difficult. My recovery seemed slower than Aug 2015. Maybe age is catching up with me (65).

The follow up with my Dr. was okay. He seemed to think there would be a good chance I could see more tumors in the near future. Because I am tumor free at this time, I was asked to be part of a study. Some people would receive a placebo and some Pazopanib. It's my understanding that Pazopanib can slow down or shrink tumors. The researchers want to find out by taking this drug before the growth, it could possibly prevent new growths. The risks of course are side effects and the study not being successful. If I don't take part in the study, my life is normal until the next scan shows something new. I have until the end of Jan to decide.

I would love to hear from anyone who has experience / information or just thoughts.

I hope everyone is doing better than yesterday and we continue to have something to look forward to.

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Better known as Votrient. It has been taken by many people on this board but not me. 

Steve51
Posts: 23
Joined: Oct 2016

I'm aware many have taken this drug, but did they take it when they were tumor free at the time? You have never taken Votrient, can I ask why?

Thank you

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

But the phrase, "it's back." is a bit off.  Because the cancer was never completely gone from your body.  It was just itty bitty and lurking about, ready to latch onto something and grow.

That was something I, too, learned after 2006 and the big surgery.  That's why the NED-or No Evidence of Disease-result is worth cheering for all of us.  Because I got the suspicious enlargement or increase in size of a node two more times in the following 2 years.

Take those meds and torment the heck out of the tumors.  Give 'm hell.

Good Luck and Hugs

donna_lee

Steve51
Posts: 23
Joined: Oct 2016

I appreciate your thoughts and info. 

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