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Stage 4 Need encouragement

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Can someone tell me if PT4 or T4N0M0 is stage 4. My husband's 14cm tumor was removed along with the adrenal gland and right kidney. Looks like we are looking at stage 4 and could use some encouragement.

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

Yes, it is stage 4 but without any metastatic disease at this point. He will need close and careful monitoring with CT scans as follow up. It is highest stage, but without any metastatic disease at this time is positive. See below information about the staging. You never mentioned Grade of the tumor, this also will factor into his follow up care.

T4: The tumor has spread beyond Gerota’s fascia (the fibrous layer that surrounds the kidney and nearby fatty tissue). The tumor may have grown into the adrenal gland (on top of the kidney).

 

N0: No spread to nearby lymph nodes

M0: There is no spread to distant lymph nodes or other organ

 

 

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you for responding. I don't know the grade yet, I was told the oncologist would be able to give me more information on our post op visit.  2/3/15. 

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Just found out it's grade IV/IV. So I guess 4.

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

Hi Terri065,

I think it would be likely that your husband will have scans every 3 months. I don't know the exact protocol, but I think with a Stage 4, Grade 4 tumor they will want to watch it closely. 

Also, perhaps you could ask the oncologist what other tests (if any) are warranted for this diagnosis. I know some oncologists or urologists order bone scans as a test. My husband (with a Stage 3 diagnosis) had a bone scan after his nephrectomy. I recommend asking for one, if only for some peace of mind. 

It's such a scary, scary job to deal with your husband having cancer. It is a roller coaster ride, for sure, I hope you are taking care of yourself too! Take care. 

Srashedb
Posts: 482
Joined: Dec 2013

this is a wonderful forum with good info and great people; I come here because my husband was dx with stage 4, grade 2 renal cancer in 7/2013.

Sarah

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Hi Terri065

My hubby's 13cm tumour also had T4N0M0. He had a full nephrectomy of his left kidney and adrenal gland in late Feb 2014, as it was extending into adrenal gland, and while clear cell also had extensive sarcomatoid change and rhabdoid morphology. We were told he was grade 4 but no one has ever really told us what stage he was/is. He has regular ct scans and now has mris as well. He also had a bone scan and chest xrays. There is talk of giving him a scan of his head too as he has had some loss of balance occasionally lately. It has been very hot in New Zealand lately though!  He is currently NED but is having the next mri on 10 Feb. Don't know how encouraging this post is lol but he is still here and we are grateful. Hope all goes well with your husband.

Hugs Melissa

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you, it is encouraging. My husband retired from the fire department in October and was diagnosed in November. While am grateful he doesn't have to go back to work. My anxiety is getting the better of me. I just want him to be able to ride his motorcycle and go camping. We also have two daughters. One of which was married in 2013. I just want to stay on top of this so we can enjoy our grandchildren some day. 

                                           Thank you,  Theresa

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

If I recall correctly, your husband went to Dr. Russoa at MSKCC?  Coincidentally, I am a volunteer firefighter, and Dr. Russo handled my surgery.   There are a couple of other firefighters on  here.  There's a firedude, and at least a couple of others.  Congratultions on getting through the surgery, and I hope you and your husband enjoy retirement.

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

Well he didnt quite but he could have. One of the worst things about cancer is the fear and anxiety it evokes. Nothing is as bad as our imaginations can make it seem. Nothing helps a cancer sufferer more than the love of those around.

But who cares for the carer? Dont forget to look after yourself.

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

P.S. Our daughter is named Melissa after the Allman Brothers song. :)

 

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

Hi Terri,

I am glad that you have found this forum. There is a wealth of information amongst all our members. And there are a lot of wonderful caregivers on this site who will (and already have) give you guidance on this.

Your support you give your husband will help him through this!

Hugs

Jojo

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Jojo. I'm grateful for this forum and all of you. 

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

May the force be with you.

 

Icemantoo

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Terri,

     I was diagnosed Stage 4 in October 2011. I have head right kidney removed, and in 2013 lower portion of right lung removed, and another tumor removed from the brain.  I have now been NED for 15 months.   Have faith and courage and try to suppress the fear as much as possible! It can be ok!

                                        Prayers for good health!

                                        Brenda

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

Stage 4 Grade 4 here. Diagnosed May 2013. Had bones and lungs scanned. No mets in the bones. Left kidney and adrenogland and large amount of vein removed. IL2 treatment August - November. On sutent since september 2014.

Aint dead yet! 

Not planning on dying tomorrow

Not really planning on dying at all

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hi Terri, I know you are afraid.  Just try to get copies of all reports, blood reports, scans, etc. Keep them in a file.  There doesn't seem to be any spread to lymph nodes or other mets at this time. The best thing to have done now is to ask for a full body pet/ct scan.  I say sooner than later.  This way you can catch anything that can be around now, and if nothing, which is hopefully the case, then going forward full body pet/ct scans every three months would be the right thing to do. I think you said he has been at Sloans, they are usually on top of it all!  Keep on the boards here and continue to post updates.  Don't worry too much, take one day at a time and don't forget to take care of you! Hugs!  PS  my mom was stage 4, she went on Votrient and is now NED.  Hopefull still NED, scans in a month or so.  Praying for us all!

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you everyone for your support, it is deeply appreciate. We go back to Sloan on 2/3/15 will keep you updated. 

God bless! 

APny's picture
APny
Posts: 1984
Joined: Mar 2014

I totally agree with everyone who recommends bone and lung scans. Best to do it early just in case. I'm so happy that so far all is going well and hope that it continues that way. Wishing you both the best. You're in really good hands at MSK and with Dr. Russo.

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

We are meeting the oncologist Dr Voss for the first time on February 3nd. We're hoping he's as amazing as Dr Rosso. Also my husband had a bone scan and MRIs of the head, chest and abdomen. I'm hoping we covered all our bases.

:) Theresa

 

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

I'm sorry to hear you and your husband had to join this club.  The people on this site are very caring, helpful, and supportive.  I am also stage IV/grade IV and am going through consultations to treat mets in the lungs.  I met with Dr Voss @ MSK two weeks ago and have been in regular communication since.  He has been the most impressive doctor my wife and I have met thus far.  Intelligent, mindful of the patient, and thorough in his discussion.  He also persuaded us to see two other doctors:  Dr Walter Sadler @ U of Chicago and Dr David McDermott @ Beth Israel in Boston.  That says a lot about a doctor who can give such top notch referrals yet still keep up with the patient to further inform and guide.  You are in excellent hands.

There is a lot of anxiety associated with cancer, as others have pointed out.  I don't know of a secret to keep yourself worry-free but I have found that associating with loved ones more relieves a lot of the pressure.  Connecting with new people as well.  Just jumping into life more has helped put things in perspective.  I hope you find what works to pull up when you hit your lows (we all hit lows now and then).  Don't be a stranger! :)

Joe 

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

Terrie, Stage 4 is not stage dead. Hang in there. Many of us are stage 4. And we are here telling you about it. Stay encouraged, learn and put up the good fight.There is hard work ahead. It does get done by many of us.

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

That was just what I needed to hear.

If you don't mind me asking, do you still ride your motorcycle?

I haven't said anything to my husband but I was wondering if there's any reason he shouldn't ride his motorcycle when he's finished recovering. 

 

Thanks, Terri

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

Terrie, I have continued riding for almost 4 years since diagnosis. Currently I am on hold due to  blood clots in my arm. But I have my summer trips planned. There is no reason not to ride. In fact, I can think of many reasons to continue riding.

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Fox! 

Wishing you many amazing road trips!

Theresa

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you for responding. I didn't realize my husband was stage 4 until a day or two ago. The doctor told us he got everything so we weren't thinking stage 4.

I have a lot of questions for Dr Voss. Knowing you and your wife were impressed with him makes be feel better. 

Thanks again, Theresa

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Hi Theresa~Glad you found us! WELCOME!!

Just wanted to send you and your hubby a hug, a healing hug!!!!!

Keep us informed as to how you both are doing. We're here for you

and will walk along side of you if you want us to.

 

HUGS, Jan

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Jan :) 

I appreciate the support. 

firedude21
Posts: 52
Joined: Sep 2014

Terri -

I have been dealing with this curse for more years than I care to mention. I retired six years ago from a very long career on a municipal fire department. While still employed I had two kidney cancer surgeries. In the first one my left kidney was removed and I was fine for fourteen years.  Then it was my right kidney. I had a partial done to my right kidney and I was good for another ten years. After each of these surgeries I went back to work and back to riding my motorcycle.  I also enjoy camping and I am looking forward to a good season in the Sierras.  I woulld bet that your husband has many, many good years ahead.  My best to you and all on the board.

firedude21

 

p.s. - Does anyone know how to get spell check to work on this site? It works fine for me on others but not this one. Thanks. 

 

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Firedude.

I feel better after reading your post.

Nice user name :)

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Just becasue you are stage IV doens't mean life is over.

Please hit the link to my history for the details, but I had a 17 CM kidney turmor and 3.4 cm adrenal tumor on the opposite side back in 2012.

As of this morning, I woke up on the correct side of the grass, and to my knowledge, I don't have any cancer that they could find in a scan.

Since my diagnosis I have skied almost 100,000 vertical feet, played 70 or so rounds of golf (even broke par once), and had a mulligan for a hole in one (which apparently means absolutely nothing)....Oh yea, and besides scheduled treatments and scan, I have only missed two days of work due to cancer.

Keep living and riding! even if they find cancer in the future, there are new treatements that give us all hope for a long future.

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

You're an inspiration! I confess I find it harder than you seem to. I seem to have picked up arthritus which means walking with a stick. Working full time wiped me out and I'm now working  part time hoping to increase my hours. I'm not giving up, but today is a bad day.

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

Hang in there, Footstomper!

You have had a lot of challenges, and I marvel at you still teaching (not easy!) even part time! Each case is so individual and so different.

Hugs

Jojo

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

Yesterday was a dark day. Seems the nature of Sutent with me. 2-3 days in and the world falls out of my bottom! Better now :-)

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Glad to hear you're feeling a little better. Wishing you sunny days.

God bless! 

Terri

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Darron. 

I feel like I wake up every morning thinking, crap it's not a bad dream. 

Your post helped me to realize there are good days ahead. 

Stay on the right side of the grass.  

Theresa

 

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I cant tell you anything about stage four but a lot of peop;e on here have and can and still push through to get better.  Only thing I can do for you is Pray for you and that I will every day.

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Thank you Brea and God bless you! 

Theresa

 

 

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Terri065, you came to the right place. These folks here on this site are awesome. You will see a tremendous amount of information and guidance from so many, freely giving of their time and knowledge. Some of us(mostly me) are uniquely unqualified to give any practical advice. However, I can agree with many here that tell you that things are going to be fine, that you need to monitor and get to your appointments for the CT scans and keep after your Dr and push them for advice, etc.  When you go to your appointments, I have found, obviously your husband will be there, but take good notes, if need be take someone else with you so another set of ears can be there ready to listen, write anything down, etc. 

 

God Bless You and Your husband.  This wonderful group of fellow cancer fighters seem to always be ready to give such incredible advice!

Take care

Tom

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