Checking in

Srashedb

it has been a while but feeling good tonight after stress of scanxiety; my husband had MRI of his spine as well as CT scans and today we met with the radiation oncologist.

He is stage 4 and other than a small spot on the adrenal gland, his sporadic mets have been to the spine and SBRT has been successful so that we have avoided any other treatments .

Nevertheless, when he gets scanned, I totally freak out with anxiety so when the tests were finalized, they faxed the results and the only area to treat will be a rib they have been monitoring for the last two years. I feel tremendous gratitude for these findings. So far, if he had to have stage 4 kidney cancer, this slow growth and no drugs is the best type.

To those who are beginning this journey, I urge you to seek a kidney cancer specialist and a second opinion in all cases; when my husband was diagnosed, the local cancer center folks did not know a thing about kidney cancer except what they read so their prognosis was dismal. They did not know about SBRT and were only able to tell us that radiation would not impact kidney cancer. On this, they were right.

A second opinion, a second team of doctors and it is now over 4 years: we have 4 grandkids and when I am free (from work), we travel. This summer we were able to visit our grandsons in Oregon and tour the northwest, go to the lake, the mountains and Hawaii.life is goo 

 

Sarah

 

rhominator

Great Report!

Thanks for the great report, Sarah.  I'm approaching 4 years with stage 4 too. 

When started this journey, I thought I'd be withering away this many years in, but I'm more active than ever and feel great!

I've been blessed by God with great health care professionals and a great wife.  With the current advancements in treatments I have no worries about tomorrow.

 

Wehavenotimeatall

Wow

This is so great to read

 

You two are quite a team

I am so pleased to hear of your husbands continued strength. 

 

i will think And pray for you.  sounds like you will have many more adventures to come

 

Annie

RickToo

Checking in also....

Glad to hear. It's always good to read something positive on this site.

I admit I joined this site months ago but have never posted anything. Every time I would start for some reason I just stopped. I guess I needed time to deal and the right moment.....now is the moment. Exactly 1 yr ago today I was released from the hospital after having a radical nephrectomy on my right kidney. My Oncologist would later determine I had stage 3 RCC with sarcomatoid properties. The tumor was about 8.3cm and had grown into the renal vein. After doing my own research I realized this diagnosis really sucked. Anyway, just had my latest scans and all is still clean....very excited about that and ready to talk about it a little. My Dr seemed relieved enough to change scans to every 6 months instead of 4. I'm just so happy to have a yr distance between me and cancer. Just wanted to throw that out there and I'll try to join in more often. Thanks, Rick

Wehavenotimeatall

RickToo said:

Checking in also....

Glad to hear. It's always good to read something positive on this site.

I admit I joined this site months ago but have never posted anything. Every time I would start for some reason I just stopped. I guess I needed time to deal and the right moment.....now is the moment. Exactly 1 yr ago today I was released from the hospital after having a radical nephrectomy on my right kidney. My Oncologist would later determine I had stage 3 RCC with sarcomatoid properties. The tumor was about 8.3cm and had grown into the renal vein. After doing my own research I realized this diagnosis really sucked. Anyway, just had my latest scans and all is still clean....very excited about that and ready to talk about it a little. My Dr seemed relieved enough to change scans to every 6 months instead of 4. I'm just so happy to have a yr distance between me and cancer. Just wanted to throw that out there and I'll try to join in more often. Thanks, Rick

H Rick

 oh dear you have been through a bumpy road

 

How are you feeling now mentally and physically 

 

Are you on any drug treatments at all.?

 

It is a great shock  to suddenly find this terrible news coming crashing into your world

 

I hope you have someone at home who is sharing the burden with you

 

In the meantime come here any time. I have only been here two months but it has managed to keep my sanity during some horrible days

 

Much Love

 

Annie

foxhd

Near perfect sarah

This is the big message. LIVING with cancer! Stage 4 non the less. This gets gone by getting second opinions from experienced doctors. Knowing options and being confident in the plan of treatment. It's not always easy but living with a chronic illness is far from the worst thing. In fact it can actually be healthier for some people due to the frequent monitoring and lifestyle modifications. (and a little karma)

Sarah you understand logic and procedure as an art. I don't know how but you have reinforced many decisions I've made that others might not have. That means a lot to me especially since I'm still here too!

To everyone who is afraid, listen to what sarah says.

 

Srashedb

foxhd said:

Near perfect sarah

This is the big message. LIVING with cancer! Stage 4 non the less. This gets gone by getting second opinions from experienced doctors. Knowing options and being confident in the plan of treatment. It's not always easy but living with a chronic illness is far from the worst thing. In fact it can actually be healthier for some people due to the frequent monitoring and lifestyle modifications. (and a little karma)

Sarah you understand logic and procedure as an art. I don't know how but you have reinforced many decisions I've made that others might not have. That means a lot to me especially since I'm still here too!

To everyone who is afraid, listen to what sarah says.

 

Oh, wow!

Fox: thank you so much for your comments; I often think that I never wanted a medical education but when I dealt with breast cancer 26 years ago, my rebellious nature (which often gets me in trouble) caused me to question medical advice and analyze whether it applied to me. Being a young woman then, it was not met well by these medical gods. 

I have learned that there is much that even the best doctors just don’t know and that our expectations of them might be unrealistic and sometimes unfair. Again, I am in a place of more medical education which I didn’t want. So, we have an unbelievable medical team with cutting edge knowledge and they are willing to listen to our needs. It works welL 

I get so much out of this site and there is no substitute for real time experiences shared here. As I have mentioned before, your attitude and level of strength got me through our early journey and I took that to my husband to urge him to fight this beast rather than let it get him while he just waited.

He is not one to research and look up treatments and has come to rely on me: I am grateful to provide him with information since he is the rock to my crazy.

so, knowing that you value my sharing means more than I can say and I am so glad to have you here with over 6 years of this chronic disease; that is stage 4 cancer. It won’t go away, can’t be cured but CAN be lived with.

Sarah

Bellafelice

Great news

I agree strongly with Fxhd-my hubby has stage 4 RCC. He had a full nephrectomy at John Hopkins in 2008. He got spinal mets in 2015 that were overlooked by a local radiologist. They showed up this year and we are working with a kidney cancer specialist at a university 3 hours away from where we now live. Seeing that specialist has been the best move ever. Kidney cancer is still relatively rare, and the best way to work with it is getting a specialist in that area. (No doubt a good idea for all cancers too).

Thank you for sharing  too Shrasedb-it is wonderful to hear your post as I can relate to it 1000%

Jojo61

Great to hear how well your

Great to hear how well your hubby's scans were, Sarah!

Hugs

Jojo

Pressley01

Srashedb said:

Oh, wow!

Fox: thank you so much for your comments; I often think that I never wanted a medical education but when I dealt with breast cancer 26 years ago, my rebellious nature (which often gets me in trouble) caused me to question medical advice and analyze whether it applied to me. Being a young woman then, it was not met well by these medical gods. 

I have learned that there is much that even the best doctors just don’t know and that our expectations of them might be unrealistic and sometimes unfair. Again, I am in a place of more medical education which I didn’t want. So, we have an unbelievable medical team with cutting edge knowledge and they are willing to listen to our needs. It works welL 

I get so much out of this site and there is no substitute for real time experiences shared here. As I have mentioned before, your attitude and level of strength got me through our early journey and I took that to my husband to urge him to fight this beast rather than let it get him while he just waited.

He is not one to research and look up treatments and has come to rely on me: I am grateful to provide him with information since he is the rock to my crazy.

so, knowing that you value my sharing means more than I can say and I am so glad to have you here with over 6 years of this chronic disease; that is stage 4 cancer. It won’t go away, can’t be cured but CAN be lived with.

Sarah

Living with Clear Cell

Hello all,

  Interesting and encouraging to read the various messages. I had my left kidney removed Jan, 2009. Received X-rays every 6 mos forv5 yrs, then once a year after. Early in 2017, the Frs discovered that My cancer had returned, and lymph nodes on tracea were full of cancer. Many nodes really enlarged like little Balloons. Body scans found spots in my brain, had Gamma Knife 3 months ago to zap those. Then they found PE’s, and on blood thinner for that. Been on Votrient for 2 months now. Seem to be tolerating so far. Go back for follow-up check next week. List me As .....Looking for the Cure.

 

AnnissaP

Great news!! Long journey for

Great news!! Long journey for you guys, but all sounds positive. Wishing you all the best in the future.