Newly Diagnosed - Scared!!

Hello Everyone,

My husband, Dave, was diagnosed with stage IV renal cell carcinoma last month.  We were totally shocked as there were really no symptoms that anything was seriously wrong until just a couple of months prior to diagnosis, and then the symptoms were very vague.  He started losing weight (30 pounds in about 2 months), but we thought it was just stress and didn't pay much attention to it.  Then he got a horrible cough and had a chest x-ray followed by a CT scan, then we got the bad news. 

The primary site appears to be his left kidney.  There's a 10 cm x 10.5 cm mass in the left kidney and a very small, sub-centimeter mass in the right kidney.  Both adrenal glands are affected.  He also has severe metastasis to both lungs as well as the lymph nodes in the chest.  A couple of the lymph nodes are nearly golf ball sized. 

The oncologist told us that Dave is currently inoperable and that the treatment of choice is always to remove the affected kidney, but since Dave has such widespread metastasis that isn't an option at this time.  So he started Dave on Torisel 25 mg weekly, and he just had his second treatment Monday.  So far the worst side effect is that Dave has developed horrible sores in his mouth.  He can't even eat anything unless it is very soft, and he's in agony even though the doctor prescribed mouthwash with lidocaine in it.  He's using tons of Anbesol, Peridex mouth wash, and this prescription mouthwash.

Can anyone give us any hope?  I've been reading the messages on this forum, and it looks like there are a few good success stories here.  Has anyone else had the horrible metastasis to the lymph nodes in the chest?  Does anyone know if these mouth sores will ever go away?

Thank you all so much for your answers.  I am still just totally in shock.  It's really amazing how much life can change in just one day.  A month ago we were planning our summer vacation...now we've got this huge mountain to climb. The doctor said our situation is not totally hopeless, but he did tell us, frankly, that this would be like "turning around the Titanic."  I just hope there will be some quality of life left in this situation.  The mouth sores are making it pretty tough to have anything to look forward to.  I am still in shock from all this.  I spent the first week just totally in tears, but then I got a little composure and am stronger now, just trying to take one day at a time.  My heart is broken into a million pieces, and my head is spinning.  So many decisions to make.  I just lost my Mom to pancreatic cancer a little over a year ago, and just like with Dave's case, no symptoms until it was too late.  I thought nothing could be worse than losing my Mom like that, but I have to say, this is worse.

Thank you, and best wishes to everyone.

Nancy

On 7/24/2008 Twiddles wrote:

Hello Everyone,

My husband, Dave, was diagnosed with stage IV renal cell carcinoma last month.  We were totally shocked as there were really no symptoms that anything was seriously wrong until just a couple of months prior to diagnosis, and then the symptoms were very vague.  He started losing weight (30 pounds in about 2 months), but we thought it was just stress and didn't pay much attention to it.  Then he got a horrible cough and had a chest x-ray followed by a CT scan, then we got the bad news. 

The primary site appears to be his left kidney.  There's a 10 cm x 10.5 cm mass in the left kidney and a very small, sub-centimeter mass in the right kidney.  Both adrenal glands are affected.  He also has severe metastasis to both lungs as well as the lymph nodes in the chest.  A couple of the lymph nodes are nearly golf ball sized. 

The oncologist told us that Dave is currently inoperable and that the treatment of choice is always to remove the affected kidney, but since Dave has such widespread metastasis that isn't an option at this time.  So he started Dave on Torisel 25 mg weekly, and he just had his second treatment Monday.  So far the worst side effect is that Dave has developed horrible sores in his mouth.  He can't even eat anything unless it is very soft, and he's in agony even though the doctor prescribed mouthwash with lidocaine in it.  He's using tons of Anbesol, Peridex mouth wash, and this prescription mouthwash.

Can anyone give us any hope?  I've been reading the messages on this forum, and it looks like there are a few good success stories here.  Has anyone else had the horrible metastasis to the lymph nodes in the chest?  Does anyone know if these mouth sores will ever go away?

Thank you all so much for your answers.  I am still just totally in shock.  It's really amazing how much life can change in just one day.  A month ago we were planning our summer vacation...now we've got this huge mountain to climb. The doctor said our situation is not totally hopeless, but he did tell us, frankly, that this would be like "turning around the Titanic."  I just hope there will be some quality of life left in this situation.  The mouth sores are making it pretty tough to have anything to look forward to.  I am still in shock from all this.  I spent the first week just totally in tears, but then I got a little composure and am stronger now, just trying to take one day at a time.  My heart is broken into a million pieces, and my head is spinning.  So many decisions to make.  I just lost my Mom to pancreatic cancer a little over a year ago, and just like with Dave's case, no symptoms until it was too late.  I thought nothing could be worse than losing my Mom like that, but I have to say, this is worse.

Thank you, and best wishes to everyone.

Nancy

                I am sorry your husband has this disease. Have you contacted any of the top cancer centers . I believe MD Anderson is the best but there are others. They will give your husband the best chance of living the longest. I have been Dx w/MRCC since 1997. My prayers go out to your Husband and you too. You will find this site to be a great place to find answers encouragement and strength. You are not alone, many of us are going through the same thing. Take Care   John 

Nancy

I know this can be so scary.

 First you need to be sure that you are seeing a true RCC expert - who has alot of experience treating this type of cancer. Next, a second opinion is very important. I am NOT an expert, and do not know the specifics of your husband's case, but I would urge you to get another opinion. Another dr MAY recommend removing the large tumor in the kidney and MAY recommend another systemic approach (IL-2, SUTENT, etc.). Your dr I am sure has reasons for the approach he is taking, but a second opinion is always very improtant.

If you can tell us where in the country you are, we can point you in the direction of a top RCC expert. You can also contact the Kidney Cancer Association  - they have lists of experts.

And I have attached another message board you should sign up with. There are people from all over the country and world on this board. I fell that finding the ACOR board saved my husband's life.

http://listserv.acor.org/archives/kidney-onc.html

 Best of luck to you

Marianne

On 7/24/2008 Twiddles wrote:

Hello Everyone,

My husband, Dave, was diagnosed with stage IV renal cell carcinoma last month.  We were totally shocked as there were really no symptoms that anything was seriously wrong until just a couple of months prior to diagnosis, and then the symptoms were very vague.  He started losing weight (30 pounds in about 2 months), but we thought it was just stress and didn't pay much attention to it.  Then he got a horrible cough and had a chest x-ray followed by a CT scan, then we got the bad news. 

The primary site appears to be his left kidney.  There's a 10 cm x 10.5 cm mass in the left kidney and a very small, sub-centimeter mass in the right kidney.  Both adrenal glands are affected.  He also has severe metastasis to both lungs as well as the lymph nodes in the chest.  A couple of the lymph nodes are nearly golf ball sized. 

The oncologist told us that Dave is currently inoperable and that the treatment of choice is always to remove the affected kidney, but since Dave has such widespread metastasis that isn't an option at this time.  So he started Dave on Torisel 25 mg weekly, and he just had his second treatment Monday.  So far the worst side effect is that Dave has developed horrible sores in his mouth.  He can't even eat anything unless it is very soft, and he's in agony even though the doctor prescribed mouthwash with lidocaine in it.  He's using tons of Anbesol, Peridex mouth wash, and this prescription mouthwash.

Can anyone give us any hope?  I've been reading the messages on this forum, and it looks like there are a few good success stories here.  Has anyone else had the horrible metastasis to the lymph nodes in the chest?  Does anyone know if these mouth sores will ever go away?

Thank you all so much for your answers.  I am still just totally in shock.  It's really amazing how much life can change in just one day.  A month ago we were planning our summer vacation...now we've got this huge mountain to climb. The doctor said our situation is not totally hopeless, but he did tell us, frankly, that this would be like "turning around the Titanic."  I just hope there will be some quality of life left in this situation.  The mouth sores are making it pretty tough to have anything to look forward to.  I am still in shock from all this.  I spent the first week just totally in tears, but then I got a little composure and am stronger now, just trying to take one day at a time.  My heart is broken into a million pieces, and my head is spinning.  So many decisions to make.  I just lost my Mom to pancreatic cancer a little over a year ago, and just like with Dave's case, no symptoms until it was too late.  I thought nothing could be worse than losing my Mom like that, but I have to say, this is worse.

Thank you, and best wishes to everyone.

Nancy

Dear Nancy

Yes, it's worse, far worse, to face losing a husband than a parent - that's only natural (and only exceeded in agony by the prospect of losing a child....). In losing a parent we grieve, of course we grieve, but it is in the order of nature for our parents to die before us. But in the prospect of losing our spouse we lose our whole expected future as well. My mother in law was widowed twenty years ago, at 60, and I really, really don't know how she continued. I pray I will never have to find out...

My husband too was DX stage IV recently (May). He had a primary on the right kidney (a biggie!)(it was reaching his liver and diaphragm), but his left is clear. There are mets on his lungs and a thoracic lymph node but so far as we know nothing else (though he's only had an abdominal scan, so not sure if there's anything in his head/limbs...the onc says quite enough to be going on with anyway just what we know!). We don't know how many lung mets, but they are dotted all over so far as we can tell from the scan, but, again, it's difficult to know as when you view the scan you are constantly going 'up and down' through the lungs, so not sure if each screen is a new collection of mets, or just the lower/upper bit of the ones in the previous screen. And we just didn't feel like asking the onc! Enough that he's got 'mets in the lungs' we feel. (My husband was actually quite cheered when he saw them - little bitty things he considered them!).

Now, I tell you this because despite those mets, the onc decided to get the kidney and the primary out. The surgeon (whom we saw first, simply because of the way the appointments worked) said it was unlikely the onc would recommend that, and said we'd probably be put straight on drug therapy, so when the onc said no, let's get the kidney/primary out, my husband was pleased.

The reason, said the onc, that he made this decision was because he thought my husband's physical condition could stand the operation - he's 55 but pretty fit (exercise is his thing!), and his bp/heart rate was good and I THINK his haemoglobin is OK (not sure - but I think it was). And hehadn't been losing weight, though he had had the most awful night sweats - really soaking ones! - which, together with the 'irritating persistant cough since early spring' had been the ONLY symptoms at ALL (it was a routine Xray for the cough that, like in your case, showed up the lung mets, and then all hell broke loose and he was rushed off for a CT scan, and then the DX, and then the surgeon and the onc etc etc...all in the space of a few days!)(a few NIGHTMARE days....)

So, I would say to you, yes, get a second opinion, and also, just ask your existing onc why he thinks a nephrectomy isn't a good idea - it may be he thinks your husband too weak at the moment? It may be because there is a tinier tumour in the other kidney (cryoablation may zap that - do check the threads here, as there is good experience of this approach), or because both the adrenals are affected, etc.

It may also be because of something else our onc told us. He said that with Interferon therapy, the stats were clear that prior nephrectomy was definitely associated with better outcome, but that that had NOT yet been demonostrated for the new genreation of drugs like Sutent and Torisel. So, although my husband has had the primary out, there is not yet clear evidence that that will material affect the outcome in the end. (That said, my husband's very glad the damn thing is out, and it's certainly sorted the night sweats, which are now very, very minor indeed!).

It may also be worth asking why your onc is prescribing Torisel, not Sutent - I'm not sure when and why that happens straight off, although I know that some patietns just don't respond to Sutent, or find the side effects so grim they are swapped to Torisel (and there are good experiences here scattered around of people doing well on Torisel).

This is a terrible time for you, but you've come to a good place - we're all in the same place here! And we can all be SO glad that we are now at a time when there ARE new drugs for this cancer, that are showing success, and more coming along out of the research pipeline. We have more hope than ever before!  

Please do browse amongst the threads to see the 'good news storeis' that ARE here - they give real cheer, and real hope.

Take care -  Julie.

Thank you to everyone who replied.  It is comforting to know that I am not alone in this, and that there are other people who care.  Thank you so much,

Nancy

Nancy,

Please listen to Marianne.  You have to get a second opinion and even a third.  I had nowhere near the condition your husband has, but I had a doctor that wanted to remove my kidney within 4 weeks of my diagnosis.  I went to many doctors and chose another path.  The path I chose wouldn't be right for your husband, but each doctor can look at the same tests and see them a different way.

Seeing another doctor or two can't hurt anything.

Jack

Hello Nancy,

My husband has Stage 4 MRCC. He found out when he had rib pain that did not go away. The chest x-ray did not see it either. Our doctor had us see an Orthopedic doc and he noticed that the skin sensation on his chest wall was different. CT revealed tumors on the spine near his ribs. They never start there so they went looking and found his left kidney had a mass in there which was pushing on the ribs--so the pain. Quite by accident we found out.

Left kidney was removed and his pain greatly decreased. He also had the night sweats which is typical of kidney cancer when it is active. He had targeted radiation for the tumors on the spine and they have remained stable for over a year now. Dave is 58. He has been on Sutent ever since. It is 4 weeks on (oral) and 2 weeks off. It causes extreme fatigue but is very effective. He has had the mouth sores too and peeling skin on his feet and hands. But it is the fatigue that the patients hate and many stop or change to different drugs.

I met a guy on Daily Strength who has very similar lung mets and he is now on Toisel and experiencing good relief. A definite second opinion won;t hurt. It helped us decide what direction to take. You can;t wait too long though.

Write when you can and I will keep up with you and your Dave.

Joan

My dad was diagnosed with kidney cancer a few months ago.  His tumor was VERY large - about the size of a football they said, and he had significant lung involvement by the time it was found. (no real symptoms)

 One thing his doctors agreed on was to get that tumor out if at all possible. From some things I've read, it sounds like some believe that it's easier to fight the smaller spots that have spread to the lungs or other places, if the primary tumor is gone.  

 My dad was put on Sutent after his surgery, which kept the lung nodules at bay - I think all but one stayed stable. He did find a lesion on his brain last month, and is actually having radiosurgery on it today. 

He went to Kidney Cancer specialists at UCLA. Like the others, I highly recommend going to a specialist!

Theresa