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6 years free and its come back
 |
Sep 11, 2018 - 9:40 am
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 |
Joined: Jul 2016
21 cm??
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
Joined: Feb 2012
It was the size of a football
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.
Joined: Apr 2016
Happened to me......
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.
Joined: Oct 2013
Welcome back
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.
Joined: Mar 2018
I'm not quite a year into
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.
Joined: Mar 2018
I'm not quite a year into
Oops, my apologies for making a duplicate post...
Joined: Mar 2017
10cm
mine was 10cm and not encapsulated. I could not imagine going through that at 42.
Joined: Nov 2013
I can only imagine how you
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.
Joined: Aug 2016
Was your cancer clear cell or
Was your cancer clear cell or chromophobe? Was necrosis or sarcomatoid factor present?
Joined: Jun 2017
Great question
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.
Joined: Dec 2012
5 years mark
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
Joined: Aug 2016
I thought my tumor was large
I thought my tumor was large at 11.7 cm. I also had chromophobe. I see that unfortunatly these tumors can grow very large.
Joined: May 2017
Multiple options
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
Joined: Jun 2018
Chris I wanted to add this.
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.
Joined: Nov 2015
Explore all options
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!
Joined: Feb 2012
I know I should know this
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!
Joined: Mar 2012
You didn't give details on
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.
Joined: Mar 2014
Keeping your in my thoughts,
Keeping your in my thoughts, Cboone. I'm sure the oncologist will have a good line of approach!
Joined: Nov 2016
Hi sorry that it has recurred
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.
Joined: Apr 2013
The same thing
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...
Joined: Sep 2017
Sorry to hear it is back. I
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!
Joined: Feb 2012
I know I should know this
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!
Joined: Sep 2016
Great attitude
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!
Joined: Feb 2012
Docs said
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.
Joined: Oct 2017
Thanks for sharing and for
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
Joined: Dec 2012
Recurrence
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
Joined: Feb 2012
HI Todd121, it was only found
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.
Joined: Jul 2017
Praying hard for you my friend
Taking care of our mind, body and soul are so important. Praying hard for you!
Joined: Feb 2012
Thank you.
Thank you.
Joined: Oct 2013
Hey Chris, I think you are
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
Joined: Nov 2011
I Remember
I remember when you were first diagnosed.Sorry you are having to deal with this disease again.
Joined: Mar 2014
Your great physical shape due
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!