Mom with stage 3a clear cell carcinoma, story.

pars4010

Hi everyone, 

While i cannot say i myself have been diagnosed renal cell carcinoma, but the most important person in my life has been diagnosed with this, my mom. 

At first we had no idea, she presented with gross hematura, and within 2 days a large mass was shown by ct on her left kidney measuering 14 x 12 x 10. So quite a large tumour. It was devastating to find out and after looking up this cancer we knew a 14 cm tumour did not have a good prognosis. But we held out hope that maybe is was just a big f****** stage 2 tumour, the ct revealed no lymph node or renal vein involvement.

Today we got the pathology back, it has been classified as a stage T3a tumour with grade 4 classification. The tumour had 99% grade 2 cells but the 1% of grade 4 earned it the grade 4 overall diagnosis, I am not sure what this means? if anyone could shed some light on this  

I am looking for support and stories to help her through this, she was really hoping for stage 2 and although our oncologist (who is absolutely amazing) has told her not to worry and he will prove to her with each visit that they will beat this together, her spirit is a little shattered. She is very knowledgable in this field and i think when she heard stage 3 she gave up hope of a cure, but it was only staged as 3a because of the vascurlization, no lymph node involvment or invading surrounding tissue. I just want to help her through this because she is the strongest woman i have ever known and i have never seen her so shattered. Im afraid shes giving up and shes 2 weeks post radical nephrectomy and she needs her positive mind and stregnth to get better.

I hate this disease, i love my mommy, i dont want this to take her from me. I dont want this disease to take anyones loved ones. 

 

Diagnosis: Oct 13 2015, 59 female, Stage T3a, most beautiful woman.

 

-Sammie, A 24 year old daughter who would like to live longer with her mom, than without 

Jan4you

OH, Sammie, I found your post

OH, Sammie, I found your post most heart warming=HUGS to you and your precious mom!!

What a wonderful advocate you are on her behalf. Yes a cancer diagnosis turns your life around, but also for the better! It makes you realize how important our loved ones are and what we need to let go of is my belief!

We do have folks who are Stage 3, large tumors still doing well, NED=no evidence of disease post radical nephrectomy. This is all new to you all, I know.

Mine tumor was only a little over 4cm (stage I) yet I had to have a radical Neph due to where it was in kidney. I am NED 2 years later. I remember reading Kidney cancer has a relatively good prognosis since it is contained inside the kidney. Yet followed with caution and good follow up.

TRUST your doctor. Seen an oncologist if that would make you feel better. I did. Only because I was having this pain that didn't improve. I was not sure it was RCC related or due to my other conditions unrelated to RCC. It was NOT RCC related.

My brother in law had a HUGE tumor, covering his whole kidney. Had a nephrectomy and 17 years later is perfectly FINE!!

Have hope, especially at this season of giving and renewing our HOPE.

There are sites that explain your question regarding stages on path report. I do not have it right now, but someone will know. Trust that the pathologists look hard for any evidence which would be of concern, along with your Urologist/surgeon.

Also there is strict protocol to follow post RCC that your Urologist will follow: scans, including xrays of lungs. etc  and blood test that shows if cancer cells are rising (in my layman's terms).

We're here for YOU, Sammie and for your mom, if you want us to, we'll walk this journey along side you, best we can!

There is also SmartPatients.com that has more information. But please come back here and let us know how YOU and your mom are doing hon.

Sending you HOPE and loveable, healing HUGS!

Jan

 

 

APny

Jan4you said:

OH, Sammie, I found your post

OH, Sammie, I found your post most heart warming=HUGS to you and your precious mom!!

What a wonderful advocate you are on her behalf. Yes a cancer diagnosis turns your life around, but also for the better! It makes you realize how important our loved ones are and what we need to let go of is my belief!

We do have folks who are Stage 3, large tumors still doing well, NED=no evidence of disease post radical nephrectomy. This is all new to you all, I know.

Mine tumor was only a little over 4cm (stage I) yet I had to have a radical Neph due to where it was in kidney. I am NED 2 years later. I remember reading Kidney cancer has a relatively good prognosis since it is contained inside the kidney. Yet followed with caution and good follow up.

TRUST your doctor. Seen an oncologist if that would make you feel better. I did. Only because I was having this pain that didn't improve. I was not sure it was RCC related or due to my other conditions unrelated to RCC. It was NOT RCC related.

My brother in law had a HUGE tumor, covering his whole kidney. Had a nephrectomy and 17 years later is perfectly FINE!!

Have hope, especially at this season of giving and renewing our HOPE.

There are sites that explain your question regarding stages on path report. I do not have it right now, but someone will know. Trust that the pathologists look hard for any evidence which would be of concern, along with your Urologist/surgeon.

Also there is strict protocol to follow post RCC that your Urologist will follow: scans, including xrays of lungs. etc  and blood test that shows if cancer cells are rising (in my layman's terms).

We're here for YOU, Sammie and for your mom, if you want us to, we'll walk this journey along side you, best we can!

There is also SmartPatients.com that has more information. But please come back here and let us know how YOU and your mom are doing hon.

Sending you HOPE and loveable, healing HUGS!

Jan

 

 

I’m so sorry to hear about

I’m so sorry to hear about your mom, but how fortunate she is to have such a caring, concerned daughter.

Grading refers to how much the cells of the tumor resemble healthy kidney cells, with 1 = almost like them with very little variability and 4 = very unlike them with great variability. What the Dr. meant by saying 99 percent were grade 3 is that the vast majority of the cells examined during pathology were not a 4, but they always go with the higher grade if any of those cells are present. They did that with me too; most of the cells were a grade 2 but some were grade 3. Hence I’m considered grade 3.

It’s 100 percent understandable that your mom is disheartened about the diagnosis. Hoping for a stage 2 low grade cancer and being told it’s a stage 3 and high grade one is not only depressing but downright scary when you first hear it. She will need time to digest it and be able to breathe a little easier. And she will; it just takes time.

The important thing is that it’s out and that they will be monitoring her on a most likely frequent (every 3 months?) basis. Wishing you both the very best and hoping that the surgery was the end of it.

mrou50

Sammie

Sorry that you and your mother are going through this.  I know when I was diagnosed the first time it was devestating to my family and myself.  Take each day as a precious gift but at the same time don't give up hope.  Statistically your mom has a good chance of it not returning so hold on that, but if it does return as mine did (now stage IV) there are great treatments out there that are providing opportunities for people.  Hold you mother close today and everyday and support her, listen to your oncologist make sure that he/she is well trained in their field and never give up hope.

 

Mark

Jojo61

mrou50 said:

Sammie

Sorry that you and your mother are going through this.  I know when I was diagnosed the first time it was devestating to my family and myself.  Take each day as a precious gift but at the same time don't give up hope.  Statistically your mom has a good chance of it not returning so hold on that, but if it does return as mine did (now stage IV) there are great treatments out there that are providing opportunities for people.  Hold you mother close today and everyday and support her, listen to your oncologist make sure that he/she is well trained in their field and never give up hope.

 

Mark

Hi Sammie,
So sorry to hear

Hi Sammie,

So sorry to hear about your mom. It isn't news that is easy to swallow. I was diagnosed with kidney cancer in October 2013. I had my nephrectomy in December 2013. My tumor was 13 cm. I had stage 3, grade 2 with lymphovascular invasion. No treatments, other than CT scan follow ups.

There is a lot of hope for your mom and many years ahead of her. Do not despair! There are many long-term survivors here amongst us.

Hugs

Jojo

todd121

Stage 3 RCC

Hi Sammie,

Sorry to hear about your mom.

3 years ago this month I was diagnosed with Stage 3a, Grade 3. I also had it invade the blood vessels. I would have been Stage 1 if it weren't for that.

A prognosis is not a terribly useful thing for an individual person. It gives odds, but it doesn't tell you what will happen to you. It's helpful in terms of followup - how closely you should be monitored. It's not at all helpful telling you if your mom's cancer will spread/come back. It's difficult wrestling with this prognosis thing.

The situation is, your mom, just like all of us, has no idea how long she will live or what she will die of. She has pretty good odds of being here a long time from now. I'd hang on to that idea and encourage her to do the same. Is she computer friendly? Perhaps you can encourage her to come here and post/talk to us?

After 2 years I had a single met to my adrenal gland. That was removed in February. So far I'm NED (no evidence of disease, the way we refer to being cancer free) since then. Health effects from the kidney and adrenal gland removal have been pretty minimal.

Each case is unique.

Good news is they caught it and she will get monitored now. The earlier they catch anything that pops up, the better the chances of doing something about it. I hope she's being followed by a medical oncologist that knows something about RCC. If not, I'd find one soon. They are the docs that know how this disease progresses and manage the care if it comes back. Personally, I prefer to be followed by somebody like that instead of the original urologist that treated me for the first tumor.

Wishing you and your mom the best.

Todd

Footstomper

todd121 said:

Stage 3 RCC

Hi Sammie,

Sorry to hear about your mom.

3 years ago this month I was diagnosed with Stage 3a, Grade 3. I also had it invade the blood vessels. I would have been Stage 1 if it weren't for that.

A prognosis is not a terribly useful thing for an individual person. It gives odds, but it doesn't tell you what will happen to you. It's helpful in terms of followup - how closely you should be monitored. It's not at all helpful telling you if your mom's cancer will spread/come back. It's difficult wrestling with this prognosis thing.

The situation is, your mom, just like all of us, has no idea how long she will live or what she will die of. She has pretty good odds of being here a long time from now. I'd hang on to that idea and encourage her to do the same. Is she computer friendly? Perhaps you can encourage her to come here and post/talk to us?

After 2 years I had a single met to my adrenal gland. That was removed in February. So far I'm NED (no evidence of disease, the way we refer to being cancer free) since then. Health effects from the kidney and adrenal gland removal have been pretty minimal.

Each case is unique.

Good news is they caught it and she will get monitored now. The earlier they catch anything that pops up, the better the chances of doing something about it. I hope she's being followed by a medical oncologist that knows something about RCC. If not, I'd find one soon. They are the docs that know how this disease progresses and manage the care if it comes back. Personally, I prefer to be followed by somebody like that instead of the original urologist that treated me for the first tumor.

Wishing you and your mom the best.

Todd

A race

I'm fairly neutral about the future and the possibility of a tuncated lifespan. My wife, a viral oncolgist, who is a leading researcher into the efficacy of new drugs, thinks that now it is a race to get curative drugs out while I'm still alive. A very positive prediction

Jojo61

Footstomper said:

A race

I'm fairly neutral about the future and the possibility of a tuncated lifespan. My wife, a viral oncolgist, who is a leading researcher into the efficacy of new drugs, thinks that now it is a race to get curative drugs out while I'm still alive. A very positive prediction

Stomps, your wife's view is

Stomps, your wife's view is very hopeful.

Hugs

Jojo