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Stage 4 Bone Met at 4 months Post Nephrectomy

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Hi, all,

I am new to this forum. This is my first post. I wish this post could be under better circumstances.

In May 2016, I had a TIA stroke (mini-stroke), at which time a 7 cm tumor was detected in my left kidney. I underwent endartarectomy surgery on my left carotid artery for the TIA. I had to wait 2 months to recover before they would perform the nephrectomy, which was done at the end of July 2016. At that time, my cancer was staged as 1B.

I had my first post-op CT scan in early Nov 2016, and they have detected a 1.7 cm mass on my pelvic bone, in the front, near the pubic area. The bone is very thin in that area. The CT scan shows significant erosion to the bone. I am going in next week for a biopsy, followed by a complete body bone scan, and also a PET scan. There was no bone met 4 months ago when I had the nephrectomy performed.

My oncologist says he is quite certain this is a stage 4 metastasis to the bone. At this point, I am shocked, numb and completely devastated to learn this news. I have gone from stage 1b to stage 4 in only 4 months. I am concerned about the rapid growth, and the short time between the nephrectomy and the metastasis.

At this point, I am strong, working every day, and have no symptoms or pain in the affected area. I'm 60 years old. I just turned 60 on Nov 10, and received this news on Nov 11. Nice birthday present :-( I am terrified of the short amount of time (statistically) that I may have left.

My oncologist mentioned targetd therapy. But, since I'm strong, I am also possibly interested in IL-2 immunotherapy, since from what I have read, it is the only treatment that offers a chance, although small, of a total cure.

I am also considering switching my treatment over to the Stanford Cancer Center here in the South SF Bay Area, since they are a "one stop shop", are world renowned, and have all the doctors available, plus a surgey center, under one roof. Right now, I am having to coordinate between a few provate doctors. Also, I will say that my oncologist rubbed me the wrong way when he took a phone call during my last visit, only seconds after telling me that I likely have stage 4 kidney cancer. He also seems very rushed, and did not spend a lot of time with me. It's a good thing that my wife was with me, as I broke down and completely lost it (was in tears) during that visit.

Thank you all in advance for your support.

Roger

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

The plan is not finalized until next week. But I'm sure they will perform periodic scans. I'll be sure to mention it though, just in case.

firedude21
Posts: 52
Joined: Sep 2014

I was infused with Zometa this morning.  I get it every three months and have never had a reaction from it. Everybody is different and reacts differently to different meds. Good luck to you and all of us on this rollercoaster ride.

ffd21

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

It is amazing how each cancer case is SO different - and so many treatment options. I am sure they will find the right one for you!

Hugs

Jojo

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

I met with the head of Urological Oncology at Stanford yesterday. After analyzing my case, and some discussions, we decided to proceed with radiation therapy. Today I was prepped for the therapy, which will begin on Dec 27, and will occur over 5 days. The radiation will be high dose

We looked into clinical trials, and there were none available at this time for metastasized RCC.

I am optimistic. The doctor said that my chances of a positive outcome are higher than average, due my good physical condition and only a single met site. Let's hope that's the way that it plays out. Thanks to everyone for your support and best wishes.

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

That's great news, RW.  All the best for the therapy.

WhatIsLife's picture
WhatIsLife
Posts: 38
Joined: Dec 2016

Hi. I just joined the club and your case sounds much like mine. I went from having treatable Kidney Cancer to no cancer (after having the kidney and cancer removed) to having metastasized Kidney/Bone Cancer in all about three months. I'm actually still going through it and haven't even had a needle biopsy yet, but am due to have one next week. It's all so new to me I'm not even sure about all the technical terms but I am getting encouraged by some of the stories I am reading.

I wish I could offer some encouraging words but since I'm in the middle of it I can't, only to say you are not alone!

Kevin

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Kevin,

Yes, baffling, indeed. Both our cases do sound very similar. I must say it was quite a shocker when I learned of the metastasis, but it's good to know that I'm not alone!

Yes, the terminology can be confusing. Don't be afraid to ask your Dr to clarify anything. Get a copy of all your test reports, and google any of the terms that you don't understand.

Kidney cancer runs in my family. My Mom, 2 uncles and 2 cousins have had it. All except 1 were diagnosed early, and all had nephrectomies (kidney removal). None had any metastasis (cancer spread) until 10 or 15 years later. I am the first to have this misfortune. I'll be undergoing genetic testing early in 2017, and hopefully that will provide some useful information for my 2nd and 3rd cousins.

I start targeted high-dose radiation therapy soon after Christmas. I'm hoping, of course, that this treatment will successfully kill off the tumor, and no recurrence, and be done with it!

Good luck with all your treatment. Please start a thread of your own, if you haven't already. There are lots of great folks on this forum who offer support.

Roger

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Hi, all,

Today I had my first high dose radiation treatment for the met in my pelvic bone. It was totally painless, and the procedure went fairly quickly once they had me aligned properly under the machine. I have to say, the equipment was very "futuristic" looking, and I felt as though I was the subject of a science fiction movie...lol. They talked a little about the potential side effects to the skin, but in my case it will likely be minimal, since I was getting a full 360 degree rotation for treatment. I have 4 more treatments to go. I am keeping a very positive outlook. Thanks for all your thoughts and prayers.

Roger

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

Those machines always remind me of something from the original series of Star Trek. Rather good fun. All we need is a Kirk "Engage" or a Picard " Make it so" to compete the illusion. It really shouldnt be to hard to manage.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Or a Dr McCoy "wand". Wave it....then...."You're cured".... Of course, that would be preceded by curses directed at 20th century barbaric medicine...lol

WhatIsLife's picture
WhatIsLife
Posts: 38
Joined: Dec 2016

I haven't started any treatments yet but I expect that to change soon as when you were having your first high dose radiation treatment done, I was having a needle biopsy done, and even that had a futuristic feel to it. I'm glad you are keeping a positive outlook to it all, that's something I want to do, and I'm glad I'm not the only one who feels that way. I hope the side effects will be minimal for you, and all of us. Here's hoping the rest of your treatments go as well as this one did. Keeping you in my thoughts!

Kevin

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hey Roger, glad you here with us! Sorry I am late to this post of yours. I just wanted to offer you support and a warm, welcoming HUG!

I am NED (no evidence of disease) 3 years but care about the folks here so I stay to support anyone I can.

Hugs to you and yours,

Jan

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Nice to meet you. Congratulations on NED after 3 years! Thanks for the hugs and best wishes. The folks here have been just awesome! Happy Holidays!

mrou50
Posts: 389
Joined: Mar 2013

Gland the radiation is going well that is good news, I have had fairly good luck with radiation.  Although recently one area radiated, my shoulder, was looking good post radiation and now the cancer is back and causing me some discomfort again but I was told that is not uncommon and I will probably get another dose of radiation in that area soon.

Mark

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Happy New Year to everyone!

I completed the 5 days of high dose targeted radiation therapy. Now it's back to the "wait and see" mode. I suppose that I'll have another CT or PET scan in several weeks to monitor the progress on the bone met.

The side effects have been very minor, so far. The nurses keep telling me to apply skin moisturizer before any sign of skin problems, but I haven't been very good at following instructions ! I think I'll start doing that, because my radiation treatment was in an area of the body where I really don't care to experience any skin rash or discomfort :-) Aside from that, I've been feeling somewhat tired. The radiation team said that the side effects may peak about 1 week after treatment ends.

I have an appointment tomorrow with a cancer genetecist at Stanford. It should be an interesting meeting. My Mom, 2 uncles, 2 cousins and Grandmother (all on my Mom's side) have all had RCC.

Cheers,

Roger

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Hi, everyone,

I hope evryone is doing well.

Today I started my first infusion treatment with Zometa, to help strengthen the pelvic bone that has been damaged by the met. Wow, I'm having some pretty bad side effects! Muscle aches throughout my body, and I'm running a fever of 101. I was told that the first treatment with Zometa is usually the worst, so I'm hoping that it gets better. I'll be taking it once per month. Does anyone here have any experience with Zometa? I sure hope that the side effects reduce with time.

As far as my bone met, my last CT scan was inconclusive, as there was still quite a bit of inflammation from the radiation treatment. I go in for a PET scan in early May, which hopefully will give a more conclusive result. The good news is that there are no new mets. I'm coming up on 1 year since diagnosis.

 

Cheers,

Roger

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

That was my experience, RW.

I woke up the day after my first Zometa infusion with every joint in my body aching. I believe I had a fever, too. I spent the day in bed.

I've had several (five?) treatments since then and have had almost zero side effects. Not sure why that is, but that's what happened.

Best of luck to  you.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Great! That's what I'm hoping for. Just to be cautious, I'm having all my infusion treatments performed on Fridays, so I have the weekend to recover!

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I'm sorry to hear about all of your side effects but hopefully they lessen. I was just curious, what grade was your ini tumor? I know you said it was stage 1 but what grade and subtype was the cancer?

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

My initial primary tumor was grade 1, clear cell RCC. Then, the met was discovered about 4 months post nephrectomy. That was grade 4. But they think that the met may have already been there, but just too small to be detected.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Sorry, Kat23502, I forgot to mention that the primary tumor was actually staged as grade pT1a. It was about 3.3 cm large, ISUP grade 2 of 4. There was coagulative necrosis present, so it was a fairly aggressive tumor. Lymph nodes were good at pNx.

Roger

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Abunai, so glad there are no new mets. Hopefully the Zometa does the job and the subsequent infusions have little or no side effects.

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks! Yes, I do have that to be thankful for! I've also made some lifestyle changes, as well as eating a healthier diet without processed foods. Im taking Host Defense My Community supplements to help boost my immune system, and that seems to be working.

Roger

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Hi, again. I had my PET scan the other day, and the results are encouraging. First, it is confirmed that there are no new metastases. Only the existing one on my ramus bone in the pelvis. The affected area measures about the same, about 1.8 cm x 2 cm, however, there is only a small uptick in activity in that area. The doctor said that she is not sure yet if the uptick is due to any remaining tumor, or if it is just background noise. The recommendation is to continue with the Zometa treatment.

Although I wanted to hear that the tumor was completely zapped by the radiation therapy, I suppose this is still a good result, right? Stable, and no progression? Continue with the Zometa?

Question for those who have taken Zometa: Is there any pain associated with the treatment as the Zometa starts doing its job of repairing the bone?

Thanks everyone for all your help and encouragement!

Roger

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hey there Roger, glad you gave us an update! Hope you remain stable. Do not know anything about Zometa, but hope it helps.

Have you also checked in at SmartPatients.com?

Let us know how you are doing, like your updates!

Sending you healing thoughts and gentle hugs,

Jan

rwmiller56's picture
rwmiller56
Posts: 40
Joined: Nov 2016

Thanks for recommending the SP forum. There are some very knowledgeable folks over there! I'll continue to post updates on both forums. Wishing you all the best!

Roger

disha2000
Posts: 2
Joined: May 2017

Hi All,

It is great inspiration reading your notes.

My mother has been diagnosed with stage 4 Kidney Cancer. Mets are fund in both femur bones, lungs, Liver, and Ribs. Kidney-Left got removed and now radiation is in progress for pain. Doctors are advising that they will be treating her on targetted therapy and will give her Sutent drug. Still, treatment has not started and we are hoping things will work out. Some doctors said no hopes, whatever treatment it will be for the satisfaction of the family and friends. Some doctors mention that we will treat her and provide a quality life until the time she lives(2-3 years). A Very frustrating situation as we can help my mom. 

We are going through a tough situation, mom has reduced to 1/6 of the food she use to take, and drowsy all the time, she hardly speaking to us...

 

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