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6 years free and its come back

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

Not sure how many are still on here since I was on last, but I had a 21 cm tumor on my Right Kidney.  Luckily it was encapsulated and didn't spread.  Well, wouldn't you know, it's come back on my left adrenal gland and in my lungs!  I have an appointment with an oncologist on the 19th of September at Dana Farber and a second opinion on 10/1 at Mass General.  

Anyone have this situation before and should I prepare myself for the worst?  I've maintained excellent health, work out almost daily and eat a generally good diet and am only 42 years old.  Hoping for the best, but with my family history, it does scare me a bit as both my grandparents passed from cancer at roughly 60 years of age and my dad passed a couple years ago at the age of 60 from cancer.  Always figured I had until then...but maybe not?  

Thanks,

Chris

stub1969's picture
stub1969
Posts: 769
Joined: Jul 2016

That was a big tumor.  Sorry for the new developments, Chris.  I was wondering with your age and the size of your tumor, did you have any genetic testing?  

Wishing you the best,

Stub

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

It was the size of a football...I only noticed I had it because it got so big I could feel it when I was laying on my back.  It would push through my abdomin.  Besides that, there was nothing that would have made me think I had cancer.  A little different this time as I have a presistant cough and my left side aches.  No, I never did have any genetic testing done.  

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

Read my profile for details but I went over 5 years NED after my kidney removal (4.5cm) before it came back in both lungs, I was able to have two lung surgeries to get it all out again. If my December 2018 scans come back clean that will be 2 years NED this time, good luck. 

cubsfan9
Posts: 66
Joined: Oct 2013

Good Morning, Chris!

Yes, it can come back after several years!  It was 8 yrs from nephrectomy to discovery of large met on pancreas for my husband.  You are in good hands at Dana Farber and Mass General!  Is that where you had your surgery?  I think that with your age and family history it might be prudent to look into genetic testing.  NIH is where many patients go for testing. (National Institutes of Health, Bethesda, MD).  Talk about this when you go on Friday.

There are many treatment options!!  My husband has been taking Sutent for about 5 1/2 years and is currently stable.  Challlenges ahead?  Absolutely!  But there is a great deal of hope!  Read some of the posts here and make a list of questions to take to your appointment.

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

I'm not quite a year into this game yet, so I'm no help. But I sure want to wish you luck and hope everything goes well for you. Don't write yourself off just yet, though. Hang tough and I'm sure there is help there for you. I am amazed and the different treatments and combinations of treatments that are helping so many people live a lot longer who ordinarily would not. I am trying to be one of these people! All the best to you, Chris.

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

Oops, my apologies for making a duplicate post...

CRashster's picture
CRashster
Posts: 226
Joined: Mar 2017

mine was 10cm and not encapsulated. I could not imagine going through that at 42.

a_oaklee
Posts: 417
Joined: Nov 2013

I can only imagine how you must be feeling to have a recurrence.  There is lots of hope and a number of different treatment options to carry you through the years ahead.  A number of people were diagnosed as Stage 4 and are still doing well.  My husband was diagnosed 6 1/2 years ago at stage 4.  Still doing well.  I wish you well.  Try to have good thoughts.  

rdoyd2
Posts: 71
Joined: Aug 2016

Was your cancer clear cell or chromophobe? Was necrosis or sarcomatoid factor present?

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I was wondering the same thing. My tumor was large 17cm and was chromophobe. 21cm is huge! Because I am chRCC, low liklihood of recurrence, I fear that my doctors will loosely follow and release me at the 5 year mark and something new will appear.  Prayers that this episode will resolve itself quickly and without complications. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I would love someone to chime in on this, but for RCC, I don't think there's a 5 year mark after which you are safe. This is taken from other cancers like breast cancer where the probability of recurrence drops to effectively 0 at 5 years.

If anyone has different (scientific/studies) information, please chime in.

I just don't want people to think they should stop surveillance after 5 years. I have several friends who have had it come back 10 years even 20 years out. You want to catch it early if you can while it's still operable when you have a chance to get back NED.

Todd

rdoyd2
Posts: 71
Joined: Aug 2016

I thought my tumor was large at 11.7 cm. I also had chromophobe. I see that unfortunatly these tumors can grow very large.

Manufred's picture
Manufred
Posts: 221
Joined: May 2017

Chris,

Tough call after so long!

Treatment for mRCC has advanced in leaps and bounds over recent years, as you are no doubt aware if you have been following or reading the posts on this site.

My own experience is outlined on my Profile Page - it may be relevant to you.

Best Wishes, Fred

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Chris I wanted to add this. 

 

My Dad just died on Sept. 2nd of RCC. 65 years old. My Grandfather died of colon cancer at 68 in 1991. My grandmother died of lung cancer in 1997, however she smoked. I am 40. 

 

When my Dad passed I emailed my Dad's onc and said "Well given my family history I'll be seeing you or one of your collegues in 20 years." 

 

He said that there is no germ line  (genetically passed down) explanation for the cancers in my family and that most cancers develop due to somatic mutations (acquired mutations of the cells of the organ) and other than not smoking and few other preventative measures it appears bad luck random genetic events are causing most cancers.

 

Also he goes on to say that he believes they are just several years away from much better long term treatment for folks. This was in reference to my Dad's stage 4 kidney cancer. Our oncologst founded the largest private research hospital in this country. 

 

Hang in there. Gosh, that's such a generic thing to say. It's sucks but your treatment outlook appears to be very good. 

MizzouFan
Posts: 10
Joined: Nov 2015

My advice to you is to fully explore surgery and drug therapy. It has been my experience that Urologist/Surgeons and Onocoligist offer two different perspectives. Many times the behavior of cancers in the past, is a road map in the future. Your tumor was 21 cm, and it took 6 years for it to metastasis, that is positive. Be careful and through in your decision making. Good luck!

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

I know I should remember what type of cancer my original tumor was, but after 6 years, the only thing I remember was the size of the tumor (which I think I might win the prize for biggest!) and that they said it was stage II.  I'm going to be asking this wednesday when I have my appointment with the oncologist at Dana Farber.  I actually feel pretty good besides a small presistant cough and abdominal spasm that I keep getting.  A little pain in my side from time to time, but nothing to bad. Just curious to see what the plan will be once I meet with the doctors.  Waiting is the worst!

angec's picture
angec
Posts: 923
Joined: Mar 2012

You didn't give details on how many Mets or size. Some were able to remove them or have them frozen. But they will definitely need to start you on meds. You did very well for 6 years and are young and strong. I know you will be fine.

Make it a habit to get copies of all medical tests, and reports and keep a file. Very important!  Join smartpatients.com they have alot of  knowledge of treatments etc.  Praying for you! Hugs! Ps, my mom has done well since 2012 on low dose of Votrient. 

APny's picture
APny
Posts: 1905
Joined: Mar 2014

Keeping your in my thoughts, Cboone. I'm sure the oncologist will have a good line of approach!

Deanie0916
Posts: 234
Joined: Nov 2016

My tumor was 20 cm and I'm two years from surgery. I am sure you are going to have good treatment and do well. Prayers to you.

canadiancruiser's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

My was in right kidney, then 4 years later went to right Adrenal Gland.. So you will learn how to fight and fight you will do my friend...

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Sorry to hear it is back. I hope it is early enough for them to take care of so you can move on with your life. All the best!

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

Sorry I've been a little absent.  This stuff is crazy to hear and it's taken me a bit to wrap my head around it.  I have gone to two different docs now, one at Dana Farber and one at Mass General.  They basically told me the same thing, but Mass General doc was a little more positive about the potential outcome so that is the direction I"m going.  I did find out that my original tumor was clear cell RCC, they removed the 21 cm tumor and the adrenal gland with it.  The mets I have now aren't that big yet and have remained stable from my set of scans in early August to my second set in late September.  The tumor on my adrenal glan is about 2 cm and I have 1 slightly bigger in my right lung and another a little smaller in another area of my right lung with "mutliple" nodules only mm in size.  They did say that since my two sets of scans showed not changes, that along with my age and the shape I've kept myself in, all put me in a very good prognosis catagory.  I have another set of scans in November and then after that will probably start Opdivio.  Surgery is not an option with the location of my lung tumors not allowing for it.  While this diagnosis had me a little depressed for a few weeks, I'm now determined to keep on keeping on.  I want to be the most in shape stage 4 cancer patient they have!  I'm back in the gym after a 4 week layoff and heading up to New Hampshire this weekend to hike up another 4,000 footer.  I've done 23 out of the 48 and I'm determined to finish this list!    

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

What a great attitude......way to be a stud about all of this!  Im 43, and just had my 2 year NED.  Had a big tumor also (10.5 cm...but yours was a beast!).  Frustrating that you went 6 years NED, but sounds like you caught it as early as possible.  You are an insporation for me to continue to try and work on my health and diet.  Keep us posted!  Will be thinking and praying for you!

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

One of the more important things I can do is to keep workign out, nothing crazy like maxing out, but I'm beyond all that now!  Just try and keep in as good of shape as possible.  Lifting is easier...cardio is more difficult with having lung tumors.  When I initially had my kidney taken out, it took me almost 2 years to get back in the swing of thing mentally and physically...my opperation to take out my kidney, due to the size of it, resulted in a deflated lung and a lot of my insides being moved around to get it out. I have a background in personal training and managing gyms so it's not only important from the doctors perspective, but my sanity as well!  Good to hear you are 2 years NED.  

LMCRJB13's picture
LMCRJB13
Posts: 82
Joined: Oct 2017

Thanks for sharing and for the inspiration - I had two surgeries last year to remove a mass on each kidney.  I am just now, close to a year later, attempting to get back into a fitness routine...man, it's not easy but I know I can do it.  Cardio is a beast.  

I wish your much success in your next course of treatment.  Positive thoughts for you, brother.

Ryan   

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I'm curious how it was found. Was it on an annual CT scan or did you have symptoms? What kind of followups were you getting when it was discovered?

I had Stage 3 Grade 3 6 years ago and lost my right kidney. Tumor was only 7cm, but it had invaded some of the small veins in the kidney. 2 years after I had it metastasize to the adrenal gland and had to have that removed.

Will they remove your other adrenal gland? I had some symptoms when I had the tumor in my adrenal gland. They didn't say this, but I suspected it wasn't behaving properly with the tumor in there.

Wishing you the best. I hope the opdivo works for you and I admire you keeping in shape as you have and also your good attitude. Those are gifts you can give yourself that I think will help you and your family out.

You said you couldn't have surgery because of the location, but what about radiation? Some people have been using radiation on mets in the lungs with success.

Best wishes to you. Please let us know how it's going.

Todd

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

HI Todd121, it was only found because I had a sinus infection that turned into pnemonia.  They gave me meds but it didn't seem to help.  I went back to the doctors they said my lungs sounded fine, but they wanted to confirm with a chest x-ray.  That shoudl some abnormal spots...which then, due to my RCC history, they ordered a CT of the lungs and abdomin.  That more or less confirmed what was going on.  Then came the MRI and then the biopsy.   At this point, there are no plans to remove my only adrenal gland left.  I have asked them about it not performing correctly, but they said it shoudl be fine for now...not sure how long before it's not?  Also, no talk of radiation at this point either.  Should know more next month when I go back in for another set of scans.  

Bryn1108's picture
Bryn1108
Posts: 77
Joined: Jul 2017

Taking care of our mind, body and soul are so important.  Praying hard for you! 

cboone75's picture
cboone75
Posts: 43
Joined: Feb 2012

Thank you.

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

Hey Chris, I think you are amazing~ Glad you can share your journey with us. Remember, WE WILL BE ALONG SIDE YOU, ALL THE WAY!

You can FEEL whatever you need to feel. Do not let others talk you out of your feelings, as they are YOURS~and feelings are not good or bad, they just are our emotions!

Glad you have an optimistic doc giving you the best direction on your path. I look forward to yourr reports and updates~

Sending you a healing hugs and this prayer: 

(God) Grant me the  SERNITY to accept the things I cannot change,

the COURAGE to change the things I can and

the WISDOM to know the difference~

 

Healing hugs, 

Jan

Limelife50's picture
Limelife50
Posts: 474
Joined: Nov 2011

I remember when you were first diagnosed.Sorry you are having to deal with this disease again.

APny's picture
APny
Posts: 1905
Joined: Mar 2014

Your great physical shape due to working out and your age are huge factors in your favor. Not to mention your attitude. I'm sure your physicians have a good line of attack and that the Opdivo will kick the mets' butt. All the best to you!

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