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Possible Mets to Adrenal????

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Hey guys!   Hope everyone is well.

Background:    radical right neph, incuding adrenal and lymph nodes.  surgery 3/28/12, stage 3, grade 4 Clear Cell, 49 year old fèmale.  Put on Votrient-placebo study a year ago.

CT scans have been ok.   In 10/12, Ct showed new spot on remaining left adrenal gland.  2/13 showed shrinkage in nodule in left adrenal gland.  As of Tuesday, 5/28, the same spot has increased in size, but still too small to biopsy.  Rather than changing my schedule to CTs every 6 months, I go back again in 3 Months.

i havent really been able to find out much information n the Internet regarding this, other than if its mets and has to be removed, I will have to be on steroids for the rest of my life.

Not to be a worry wart, and I'm very happy there are no sign of mets to the lung or liver.  Anybody have experience with the adrenal gland ordeal?  I was so anxious to get this one year behind me and go to 6-months for checkups.

my 53 year old neighbor of 20+ years passed away a week ago from stage IV lung cancer.  She was just diagnosed in 1/13.  W raised our kids together.

i hate this ****, but am so grateful for everybody here.  Thanks for sharing!

Lorraine

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I am going to research this when i am done posting this,but is there not a way that this small nodule on your adrenal gland could be surgically treated with some type of Ablation be it RFA or cryoablation or some other type of surgical intervention in order to preserve your remaing adrenal gland.

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I had right removed in October 2012. I have a left adrenal tumor and am currently on the Nivolumab/Sutent trial in an attempt to avoid life long steroids. I was told that once we remove the 2nd adrenal, I limit the possible treatments down the road. IL-2 was offered as an option as well. I had 30% tumor reduction on my 12 week scan, next scan on June 6. my direction was that surgery was a last resort, exhaust all options before going without an adrenal gland because you don't know what future treatments you may be eliminating if you don't have an arsenal gland. My tumor was 3.4cm at start. i would say as long as your adrenal is functioning, try to keep it.

Look into Nivolumab and Ipilimumab. Ipi is FDA approved, I believe. Both are immunotherapy drugs. Lots of releases recently in the news. Keep spirits up. Good things ahead!

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Darron, What was your original diagnosis/staging?  When did the adrenal tumor show up?  How are you reacting to treatment?

please let me know how your visit goes later this week!  Good luck!

Lorraine

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I am new to the site, I haven't figured how to update a profile yet. I had a 17 cm clear cell mass in my right kidney that spread to both right and left adrenal glands. I also have two nodules in my lung, both less than 4mm and showed reduction in my last scan. I am stage IV and have yet to see anyone wih a larger single tumor (I don't recall the exact weight, but about 2 lbs) Fortunately, the spread thru my body is fairly limited. diagnosed oct 9 2012, removed Oct 16 2012.

my doctor felt very strong about keeping the adrenal gland. I did see a Dr at Duke that wanted to take it out, but when I asked if that would limit IL-2 in the future he said "yes, good point".

i have always had the adrenal tumor, but my original urologist missed it. Thank god I went to a good oncologist shortly after surgery to see about adjuvant therapy. He picked it up at first glance and started therapy once it showed signs of growth. Stinks that removing it can limit future treatment, but at this time, I don't have any other spread that I know of. He did wait until the Ttumor showed radiological growth before treatment. I started the trial in Feb. 2013

6 week scan showed 10% growth, but there were signs of cell death.

12 week scan showed 30% reduction and still showed continued evidence of cell death.

18 week scan on Thursday.

original tumor in the left (remaining) adrenal was 3.0 cm at start of treatment (give or take, I forget the exact numbers)

treatment wih the nivolumab isn't bad. I seem to have a more difficult time with the Sutent. No major side effects, just nagging ones. I am in good shape and only 43. I think that helps. I have read of others struggling wih Sutent. Biggest thing is tender feet and hands. It limits me to only walking 9 holes of golf at a time....can't complain about that!

i'll keep you posted, do the same.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Not that it's going to be of much comfort to you but there are quite a few people with even larger primary tumors, some of whom are members here.

It's just as well that you're smart and keeping your wits about you when it comes to not compromising future treatment options! A lot of docs make mistakes in this very tricky field.

A shame to be only able to play nine holes.  You may want to investigate the use of henna for HFS - you may find you can then get the other half!  Take a look here:

http://xelodasideeffects.blogspot.co.uk/

 

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I appreciate the reference on the hand foot, I've been using udder cream. It helps with splitting, but leaves the skin a little tender for 1/2 cord grips. 

acuellar75
Posts: 2
Joined: Jun 2013

Hi,

I have been trying to find information on a second RCC recurrance in the adrenal gland. My mother is 67 and had her kidney and adrenal removed 13 years ago due to RCC. After a CT scan before starting treatment for breast cancer last january (stage II), the doctors found a large tumor above the remaining kidney, all indicating that is coming from the adrenal gland (12 cm tumor). She was refered to an urologist - oncologist, they did a biopsy and it came out RCC. Doctor states she needs open surgery to remove the adrenal gland, reconstruct vena cava with a chance of loosing her remianing kidney. She went 2 months on sutent and gladly her tumor reduced by 50%, now doctors are more optimistic for saving her kidney, but they feel very strong they need to remove the adrenal and be on steroids for life. This is the first time I hear about possibile limitations on future treatments for not having the adrenal glands, we are waiting on the date for the surgery, tomorrow we will ask the doctor about this.

Thank you all for listening and sharing your experiences.

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I believe my doctor was thinking about IL-2. It is tough enough on the  body. No gland would limit my ability to withstand it. I am hoping to be cured and still have the gland. My tumor is now 1.6 cm. it may be an altogether different scenario Being that large.

hope all goes well.

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