New to CSN. First Post. L nephrectomy 5 months ago. Now 2 x5mm Nodules on lungs. concerning for Mets

icemantoo said:

Your doctors are doing what is necessary

Tim,

 

At 5mm the nodules on your lung are too small to address. If you had a Chest xray before surgery the 5mm nodules would not have shown. If it was a CT the concern is that they grew. If they grow further their is a concern for metswhich is exactly how they are treating you. Many of us including myself have 5mm nodules in the lung which are harmless and turn out not to be RCC or mets.

Let us hope they do not grow i which case you will have won this battle.

 

Icemantoo

 

 

 

I

hi Survivors,

referencing my other post re CCRCC and nephrectomy and now possible mets on my lungs I wondered if any of you have had advice as to what makes a 'good' responder to these inhibitor blocking drugs, as I believe there is only a 20% chance of success. The reduction of vascular pathways which feed the cancer is they key i'm told. So does that mean that if you were an athlete that has a good vascular system and excellent heart and lungs that its is less likely that these drugs will work on you. Just wondering as this might be atreatment for me in the near future.

Timbomba

Footstomper said:

Personal Experience

Is really all I have to draw on, and of course the bios of some people on here. I think the truth is that, thus far at least, no matter how bad the cancer and how unpleasant the treatment, and theres a few on here who have had near death experiences, nothing is as bad and nothing is as debilitating as the fear of cancer itself. 

Hang on in there. Lets hope for no problems, but if they do arise, they are just another rock in the road and we can deal  with them like we deal with any other problems, one at a time.

If I've learned anything from this disease, its that nothing is a scary as the dread of it makes it. Secondly it has showed me that more people are full of more love than I have ever imagined.

Hang on in there.

Oh you should write about you disease and treatment in your personal description. It makes it easier to talk about.

Thankyou for those words they do help. You are right the seed of cancer in the mind is killing my family right now and the thought of me not being around is terrible for my wife who has lost her dad and sister inthe last 14 months. Life is very hard right now. I am still working but struggle to focus ...why have I left my wife at home? When Im not sure what the future holds. I appreciate your words ... I am a fighter and will fightevery battle if not for me but for them. Thanks again.

angec said:

Hey there, Tim! Sorry you had

Hey there, Tim! Sorry you had to join this group. But if needed, this group is the place to be. There are many patients and care givers here.  I am a caregiver for my mom.  She was stage four when diagnosed and she has been on one of those drugs that halt the blood supply, called Votrient. When she started she had mets in lungs and some in abdomen.   Two years later she was declared NED. That was in Sept.  This month she had a scan and two small nodes showed up.  It can be due to infection because she had a sinus and uti infection.  So, we will scan again in three months. The meds do help. It is hard to tell which one will work for who.  It is all trial and error.  They put you on the med and then scan to see if it is helping. If not, they will switch you to one of the other drugs available. There are many now, which is good news!  Also, there is a drug that is called Keytruda, or Nivolumab that is an immune system drug.  It helps the immune system work harder to fight. There is a lot of success in that drug as well and the side affects are not bad. I don't know your age, but there is also IL2.

The main thing is to see a cancer specialist who deals with RCC.  The other thing is that you should get a full body pet/ct scan for your next scan, not just a sonogram or a chest scan.  Please ask the doctor for that now, no sense getting the other xrays and then a full body scan. This is the right way to do it.  Be persistant when asking for it. Also request a copy of all of your scan reports, blood tests etc., from now on. Make a folder and keep all the documents and reports in there.  You said the cancer is aggressive. What stage/grade did they give you?  What type of RCC?

All in all, it is very scary, no doubt.  But today there are many, many people living with RCC as a chronic disease.  There has been a lot of advancement in RCC treatment so this is good!  Just be sure you have good doctors and keep on the boards here and learn all you can.  You can also join up at smartpatients.com.  They have a lot of knoweldge there about treatment, the latest things available and give great advice if you need it.   Sending love to you and your family.  Praying that all goes well.  Keep us posted.

Ange

Hi Ange,

Thankyou so much for your post and advice it is very much appreciated. It has been 5 and a half months since my tumor and L Kidney were removed. My cancer is a T3 NO Clear cell RCC with renal vein involvement. I was clear of mets until my first scan 2 weeks ago when the found on a CT 2 x 5mm nodules concerning for mets. on my lungs. My specialist seems very knowledgeable advising that 5mm is too small to tell, he has however referred me to a thoracic surgeon and encologist. In 3 months they will know what they are dealing with,as they will CT scan me again then. He said that I will have head to toe PET Scan when they know.

In mid Feb. I had an ulstrasound scan of my abdomen and kidney bed without any new signs, that was a month before the recent CT.

So we wait and worry of course. I find this web site very helpful. Thanks for your prayers and wishes.

Tim

Darron said:

Hi Tim

Hi Tim, read my bio, I've had lung mets as well. Make sure your doctor I referring you to an RCC specialist. tatters therapy is the standard of care for stage IV RCC. Drugs like votrient and Sutent will delay the growth and spread of tumors. Their impact and side effects vary between individuals. You imply that you are healthy. IL-2 has a low success rate, but is an immunotherapy hope for a cure. If you are seeung a doctor that can't administer IL-2, get an opinion from a doctor that can. If you are strong and healthy, it can be a home run.

if you read my bio, you will also see that I am on a drug trial for Nivolumab in combination with Sutent. Exploring drug trials can also be very successful. ( I had 17 cm right kidney tumor, 3.4cm ledt adrenal tumor, and 3 lung mets). I currently have a run if 3 clear scans. 

I agree with fanning in 3 months to see if the nodules have grown. In that window if time, find another expert RCC inxogist. You want to have a plan in place to treat the disease when the time comes. My oncologist enciuraed a 2nd opinion before I did my trial. I feel that any doctor worth seeing would be happy to recommend you to another specialist.

Thankyou Darren I will take your advice. My Urologist specialist both works privately and for the National Health System here  in Australia. He said that he would refer me to an oncologist and a Thoracic surgeon. I asked him if the oncologist was an RCC specialist (In the National Health System) he said yes....That is what they do! I will be discussing these matters with them as appointments are currently being made to see them before my scans in 3 months time. I will be armed with ALL of your very useful information. Thankyou. You seem to be currently winning your battle. What Grade was your cancer. All the best and thankyou