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What to expect

MattInVa
Posts: 50
Joined: Sep 2015

Im 45 and was diagnosed with RCC

I went to the ER for blood in my urine and flank pain on Aug 27th where a ct revealed a large pt3b tumor on my right kidney that extended to my IVC. The doctors said I had to have it out immediately and on the 31st had an open radical nephorectomy.

I get around pretty well after surgery. They opened me from my side to about 2 inches past my sternum. I do some light work but I won't be able to work for a long time. I am a mechanic and it requires alot of core energy.

At this point they said I should be clear as they had seen no sign of it spreading. Just before I was released the attending MD at the hospital ordered a CT scan during which time they found mets on my lungs.

Just before I was released I was visited by several cancer people from the hospital and an oncologist giving me the news or "Breaking it to me". Talk about a big let down on the day I was going home.

 

My follow up with the surgeon was not encouraging,the only prognosis he gave was that I was going to die from this, just a matter of when. I know they can't give me a date but he was vague on long term surviveability.

I have my first visit to the oncologist tomorrow.

What should I ask?

It has been very very fast moving for me. 3 Weeks ago I was right as rain and felt fine. Now I find myself struggling to piece everything together. I have had to stop working for the forseeable future and I can't take care of many of the things I need to do.

 

Thanks,

Matt

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

First of all - stop and take a breath!  You will find a lot of support on this board from some great folks.

The first thing I'd do is search Dr. Google.  That said: DON'T.  Most of the information (for survival rates) is soooo outdated.  Due to the fact that RCC didn't historically present with symptoms until its metastasized (Stage V) - and these days its being discovered in its earlier states thanks to CT scans and the like - the data out on the internet is way outdated.  That's good news!  And because it's now being discovered sooner, the cancer community has more treatment options (and many trials available).  

As for the Onc:  I'd ask the Oncologist if they specialize in RCC. Are you sure the lung spots are real mets?  Did they do a biopsy?  I have spots on my lungs that haven't changed in 3 years.  Why did they do the CT in the hospital after the surgery?  I had to wait 3 months post surgery for a follow-up CT. What kinds of treatments are available (I only needed surgery for my RCC - and then follow-up scans).

If you aren't comfortable with the oncologist - or their answers - always get a second opinion.  

I can relate to your state of mind.  I joined this board on the colorectal cancer (CRC) board (Stage 3) - and they found my RCC at that time (using CT scans).  We watched it grow for 1 1/2 years before doing a partial nephrectomy - mostly because I was busy dealing with the CRC.  Now, they are watching my OTHER kidney for possible RCC.   

Please know my thoughts and prayers are with you on this unscheduled journey.  Please keep us updated!

Best,

J

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

First of all, Matt, but I am so sorry you are going through all this, enough!

But I must say, I am appalled at your surgeons announcing to you, that you'll die from this, just don't know when. REALLY? I have heard of some poor ways of telling cancer patients bad news, but still. I am angry and upset for you to hear that, in such a manner! Maybe others on here with Stage IV can help you more, but what I have been learning is that there are some treatments and such that have kept Stage IV folks going and going. Amazingly !!

So, sending you a tender hug of hope and healing. We'll walk this journey along side you if you want us to.

I'll be here for you for sure!

Jan

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

you have mets and will die. Well Matt, if that was an absolute fact, then this site called Cancer SURVIVORS network would not exist. Who can you believe more? Everyone here, or that ill informed doctor? You will need time to recover from surgery. That's first. Don't buy anything that your docs are selling yet. This is all too much to make any quick decisions about. Read throughout this forum and become a bit more familiar with your status and treatments available. Be certain that your doctor is the correct one to see. Being an oncologist isn't good enough. You need a renal cell cancer specialist. You wouldn't send your porsche to jiffy lube for an oil change or meinike (sp?) for a muffler. There is so much more available today in terms of trial drugs, approved drugs and radiation than non specialists know. Believe me when I tell you that this is a very common topic here. The most common thing members here will tell you is to get another opinion from a specialist. That single step has saved more lives than you can imagine. There are  many here with lung mets that are running road races, riding Harleys and living with metastatic disease while living fullfilled lives. Sorry you had to join us but it is not the end of the world yet. Being informed when talking and making decisions with your doctors is so very important. One thing for sure is that you won't learn enough tonight in time for your appt. tomorrow. See your doctor and bring back your information to share with everyone. There are some very smart and well informed survivors here.

jason.2835
Posts: 337
Joined: Nov 2014

Matt,

Man, you got caught in a right whirlwind the past few weeks, I am sure.  But read what FoxHD said above; this board is full of survivors who have found the right drug, the right immunotherapy that has WORKED and has not only extended their lives, but their QUALITY of life.  There is just too much stuff out there to just give up and not try it.  

One thing I can't stand are negative doctors... I mean, what the hell are you a doctor for?  You have some mets on your lungs.  They are treatable.  There are about 10,000 things that have to happen before ANYONE tells you that you are going to die.  First things first, find an oncologist who SPECIALIZES in RCC.  There's a big difference between "experience with" and "specializes in."  RCC is not the most common cancer, and as such not a whole lot of doctors specialize in it.  Second, make sure that the doctor and their team is POSITIVE.  I have seen many people on this board deal with negative doctors and nurses and it's just not productive at all.  

It's cancer.  We get it.  It's not going to be easy.  But, as my Dad said when I told him about my diagnosis, "It's friggin' 2015."  He didn't say "friggin" though.  Meaning, medical advancements exist.  Don't rest until you have a doctor with a plan, and you are comfortable with that plan.

Good luck.

- Jay 

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Matt,

 

If you are not already there yet, seek out advice at a top hospital or Medical Center that is on the cutting edge of RCC treatments. Since you are in Virginia, Johns Hopkins comes to mind. You want to be treated by those who are top in their field.

 

Icemantoo

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

MattinVa, I don't think I can add much more than what others said, especially FoxHD.  And I echo what others said, find another doctor.  As my screen name indicates, a positive attitude and outlook are very important.  It does not help that your doctor is so blunt with you right after your surgery.  The first surgeon I visited after my diagnosis grimaced when he saw my CT scans and told me that he would have to remove my entire right kidney for a small tumor.  I went to another urologist oncologist in NYC and he was able to preserve 95% of my affected kidney, and he had a terrific attitude.    Don't let the opinion of one doctor affect your attitude. 

APny's picture
APny
Posts: 1946
Joined: Mar 2014

Must have a been a huge shock to you being told about the lung mets. I too think another doctor is in order; one who is an RCC specialist and also has a somewhat better bed-side manner than telling someone they're going to die of this. We're all going to die, and it doesn't necessarily follow that it will be from RCC. I can also only echo what was said above. Treatment methods improved tremendously in the recent years so don't get discouraged by Googling things and reading outdated info. So sorry you have to be here but please listen to Fox and others above. Hugs.

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

9 years and 4 months ago, I was told I had 5-7 months to live, if nothing was done.  Well I had surgery and they reomved a lot of cancer and parts, or all, of several orgsns.  And I had surgery again, and again.

Now, I come on here to offer encouragement and hope.  It's going to be a rough ride, but always hang on to hope.

Hugs, Donna

Shecka1121
Posts: 114
Joined: Apr 2015

I am sorry that you have had to go through this in a short amount of time and your last day in the hospital to have such heavy news delivered to you.  I have been encouraged reading updates from people like Fox, Donna, Footstomper, etc that have been through a lot and are still strong.

 

There are several people on smartpatients (smart patients is another site) that have advanced RCC that can give you some framework.  I suugest you join that site as well as that site appears to share a lot of treatement plans for advance RCC.  Also, the facilator of that group appears to have a network of RCC specialist in certain areas.  

this site and that site will give you a great support network and in time you will start to realize your doctor was ignorant and that you have a lot to lookforward to.  The journey may be tough but this is can be treated as a disease vs a death sentance.  

 

I will hold you in my prayers.

 

Shecka!

Srashedb
Posts: 482
Joined: Dec 2013

2 years and 3 months ago my husband was told that he had at most a year and maybe his last Christmas by the top oncologist in our area.

Like you, we were in total shock since he had been in tip top shape except for some pain on his flank. he was referred to UCsf for laminectomy on the metastasis on his spine. We never returned to the original onc after discussions with the UCSF kidney cancer oncologist who actually knew the disease. Most oncologists are not experienced with kidney cancer which is unpredictable and has many different types.

my husband had the laminectomy,cyber surgery radiation and nephrectomy; since then, he has had small spots show on his spine and been zapped with the cyber knife radiation. 

so, as the others have said, find an oncologist who is experienced with kidney cancer; get second and third opinions until you find a doc who has the experience and whom you trust.

Sarah

MattInVa
Posts: 50
Joined: Sep 2015

I guess things went well enough. They ordered more scans for next week, both brain and bone.

Talked about some options.

Pills

Clinical trials

High Dose IL2

all of which I need to research. He also suggested I contact Johns Hopkins or Georgetown due to a fact they have rcc specialists ad clinical trials and are realitively close.

 

Lots to do and think about and do over the next week or two.

 

matt

 

 

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

Hi, Welcome, I live in Maryland, went to Georgetown Unniversity Hospital and had my right kidney removed because of RCC , the dr, I seen was excellent , he speicialzing in RCC . Check it out ,won't hurt, KEEP POSITIVE 

 My cancer kidney was removed April 2014 ,I feel pretty good now .no problems so far,

 

Shecka1121
Posts: 114
Joined: Apr 2015

Sarah, who was your husdand's doctor at UCSF.  That is where I am seen and my urologist/oncologist is Dr. Kristen Greene. She is wonderful as well.  I would be happy to know who else I could see at UCSF in the event she ever left.

 

Thank you

Srashedb
Posts: 482
Joined: Dec 2013

His oncologist is Dr. Charles Ryan and his radiation/oncologist is Dr. Jeanne Nakamura

Srashedb
Posts: 482
Joined: Dec 2013

his surgeon was Dr. Max Meng; they all work as a team.

Sarah

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

Removed May 13 

No problems I cant cope with

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

I honestly dont know what I sais to have me comment removed, and I honestly would rather like to know. I try to be honest while positive and supportive. What did I do?

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

I see an excellent Dr at UMMC in Baltimore, Dr Hussain

To be blunt yes you are dying, just like every other creature on the planet. Who knows when? Not you, not I and certainly not your doctor

Sounds to me that the DocsSee you tomorrow mouth was not connected to his brain when he spoke to you

Yeah its scarey, but when I think of all I've done in 50 years, thats pretty scarey too

Also you have to be alive to be scared

We were alive yesterday

We are alive today (and its a great day and I'm just recovering from pneumonia)

I The trick is living not dying everyday

Youre at the start of what could be a very long journey

Go buy a burger and a beer :)

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

He understands the disease.

MattInVa
Posts: 50
Joined: Sep 2015

Iactually got Dr Hammers on the phone the other day by calling his office directly and talked to him. As of now I am ineligible for trials due to my lung mets being under 1 cm (9mm). Of course I only have a scan on my lower lungs that where caught when they did my abdomen. I have further scans for bone and brain and a full lung CT on mon/tue so that may change my eligbility for trials.

 

He suggested I be very aggressive with treatment and try in the IL2 to see if it can be knocked back (All dependent on my scan results). I am setting up appointment with hime when he gets back from a trip. He told me I also missed the checkmate 214 trials by a few days,they just closed them.

 

I do have some questions before then.

 

Can I begin the standard pill treatments before the IL2?

Will it interfere with it?

I want to start treatmet ASAP to try to keep the mets at bay.

 

Thanks,

Matt

 

 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Not all docs are well informed about all cancer types. When I got my first CT report which showed my tumor, I was blind and didn't know it's a urologiest experties so I visited a nephrologist, she told me I should visit a uroligist,I was really affraid and asked her give me as much info as she can. So she told me I must get it out and if it's maligent then I'll be on chemotraphy, i told her  but i've heard kidney cancerous cells

Are ressistent  against chemotraphy and she said it's not true. It took me time to ask my surgeon the same question and he said you're right we don't use chemotraphy for rcc, there are other options such as immunotraphy,targeted traphy,.... But the first doc gave me wrong info. So it's important to ask your question from the expert doc in RCC subject otherwise they'll give you wrong info.

Forough

 

 

 

 

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

Sorry you have to join us on this site.

Nobody knows how long you'll live or what you'll die of. Don't believe them.

They probably don't know that much about RCC. It's a rare(r) cancer and used to be a scarier thing than it is now. There are lots of new treatments helping us.

Who is in charge of your care? Who is ordering all these scans? It's very odd to have a CT while you're still in the hospital. Usually they'd do a baseline scan a month or two after you've healed from the surgery. They can't see very well in the abdominal area right after surgery due to all the swelling, pooled blood, inflammation, etc. And they want a baseline to look for changes.

Get to a specialist in RCC (everybody said this). A medical oncologist who is involved in RCC research. Preferably at a cancer hospital/cancer center or university medical school.

Did they even get your pathology back before they told you about your lungs? I didn't even get my pathology back until 2-3 weeks after my surgery and I was home. The pathology is needed to confirm what you have (type of cancer, grade, stage). Are they sure what's in your lungs? I've had small nodules in my lungs for 3 years that haven't changed in size, so they just ignore them.

I'm not saying that's not what it is, I'm just saying you need more information from somebody that deals with this disease a lot.

There are clinical trials going on with some new immune based drugs. Some are combined with some of the other new drugs. They've had luck in many patients with shrinking tumors, or keeping them stable.

Take a deep breath. Try and relax. And don't believe the jerk who told you you're going to die of this. I mean, you might get hit by a bus tomorrow...Lol. Sorry. I couldn't resist. The point is, you don't know/we don't know! Our challenge? Learning to live in the unknown (where we always were, but too dumb to know it).

You can do this.

Wishing you the best,

Todd

P.S. Rt nephrectomy December 2012 (stage 3, grade 3), symptoms like yours. Met found in adrenal gland in January, removed my right adrenal February of 2015, welcome to Stage 4.

MattInVa
Posts: 50
Joined: Sep 2015

Thank you everyone.

 

I am getting my thoughts together now.

I go with my guts and I did not get a good feeling from the oncologist I saw. So I am pursuing specialts at Hopkins, Dr. Hammers in particular

 

I am also pursuing disability also, since my job is very physically demanding and It will be a while if ever I before can go to work. If i can get soc sec disabilty I may be eligible to draw a military pension also.

I have to think about my financial responibilities too.

I find myself questioning if I will need my retirement fund.

Strange to have to think much shorter term now.

 

Matt

 

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

Hans Hammers is an expert doctor. 

But there are other immunotherapy drugs (Opdivo and Keytruda) that should be considered in my opinion, if he hasn't addressed them. I think they are available off lable for kidney cancer

Darron posts on here and has done amazing on his clinical trial of nivolumab now known as Opdivo. They are working well on kidney cancer and are well tolerated for side effects from what I understand. 

 

I would certainly get some medical opinions on those options. 

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