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

Timbomba
Posts: 48
Joined: Mar 2015

Hi Survivors,

This is my brief story, I'm searching for similarities in your experiences to compare with mine to give me an insight into what may happen to me now.

Diagnosed with 12cm 11cm 9cm clear RCC (very aggresssive) T111N0 in Oct 2014. L nephrectomy on 24/10/14 no mets at that time,micro invasion of sinus fatty tissue.

5 months later after a big op. and a 14inch slice across my stomach and side I am starting to get stronger and getting through all of the aches and pains that came with it all....I have had scans recently, an abdominal UT showing no mets but a chest CT showed 2 NEW 5mm nodules 'concerning for mets'. My specialist said too small to really know what they are, although my previous CT to compare with did not show these new 5 mm nodes, he said he had to be suspicicious given my history.

He is referring me to a thoracic surgeon and an oncolgist. He discussed that we had to wait to see if any more were likely to appear and said rescan in 3 months by that time they would show if that had grown and see if there were any more. This would then initiate my next form of treatment. If only 2 remain then a resect of my lung to take them out would be the first option. If there were any more then a full PET scan would be given and an oncolgist would advise a course of chemo drugs. he advised that conventional chemo. and radiation doesnt work but there were new forms of drugs which blocked vascular supply to the cancers were the more likely treatment. he said there were good and bad responders for the success of this treatment.

Obviously right now I'm pretty devastated having hoped that I would at least stay clear for a while and here I am battling again. Has anyone had anything similar and what were your outcomes....any suggestions.

Thanks Tim

 

icemantoo's picture
icemantoo
Posts: 3215
Joined: Jan 2010

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

Timbomba
Posts: 48
Joined: Mar 2015

Thanks I appreciate your words fingers and everything crossed that they are nodules like yours!

Timbomba
Posts: 48
Joined: Mar 2015

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

jason.2835
Posts: 337
Joined: Nov 2014

Timbomba,

Could be wrong but I don't think athleticism has anything to do with that.  The tumor tells the body to create brand new blood vessels to support it's increasing size; the vessels may branch off from existing vessels but I don't think that being athletic or not has anything to do with it.  Those on here with far more experience with the treatments will help you out with the drugs.

But just take it one step at a time.  Keep everything in front of you and don't cross any bridges until you have to.  I know it seems like it keeps hitting you when you're down... that's why you have to keep getting up.  Keep us posted.

- Jay 

Timbomba
Posts: 48
Joined: Mar 2015

Thanks Jay appreciate you info...wasnt quite sure how they worked although I guess this new meeting with the oncologist will

reveal all I need to know. I will update as I learn. Cheers 

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

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.

Timbomba
Posts: 48
Joined: Mar 2015

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's picture
angec
Posts: 923
Joined: Mar 2012

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

Timbomba
Posts: 48
Joined: Mar 2015

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's picture
Darron
Posts: 303
Joined: Jun 2013

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.

Timbomba
Posts: 48
Joined: Mar 2015

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

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