Suggestions, advice?

Tbuck1971

All,

I am hoping to get help and advise. I had a full nephrectomy on December 3, I just went back to have my 6 month CT scan and was found to have several enlarged lymph nodes (5 largest was 4 cm). I am getting very grim news and have been advised for a treatment plan, but every plan does not involve removal of the enlarged lymph nodes. Anyone with similar experience please advise. I am trying to schedule an IL2 Interleukin 2 treatment and get a second opinion, other options. At surgery I was given thumbs up, but again now I show additional signs of cancer. My nodes are 3.9CM, 21MM and 8CM. I have a total of 5 enlarged per my Oncologist.

Thoughts? Prayers welcomed!

Thx

Tom

Djinnie

Sorry for your news!

Hi Tom, 

I am sorry you have had such bad news, I understand how you must be feeling right now. I had a partial in March 2013 and received a clear scan in June. In September my scan showed I had new tumours near my kidney and enlarged lymph nodes in my chest. I am on Votrient right now and have just had my first scan since starting medication. Unfortunately,the lymph have shown signs of growth but I am hoping it's early days yet. My nodes cannot be removed because they are not easily accessible.

I hope you find the ideal treatment for you, a second opinion is always the wisest route. I will keep you in my prayers, don't lose heart!

 

Djinnie x

GSRon

Hi Tom.. welcome to the

Hi Tom.. welcome to the club.. you passed the first test in December.  I was going to be a bit bad and asked if 5 is all ya got.. but.. nah, can't do that.  I would think that surgery is not a good option depending on where those nodes are.  If they were all together in one small area, sure.. but doubt it.  You did not mention where you are, but if you are lined up with HD-IL2 then you have to be working with proper experts.  This is one difficult treatment, if you do a search here, you will find the experiences of others, expecially that of HD Fox, our resident bad ****.. 

So, you have a few enlarged nodes... no other issues..?  No Mets anywhere..??

Try to relax a bit.. there are so many treatment options, and more coming..

Hang in there.. we got some folks 20 plus years out post surgery... lots of time left for sure..

Good Luck..!!

Ron

thaxter

IL-2 when it works can produce a long term durable response

That's the reason most of us choose to go through IL-2.  Although the complete response percentage is just under ten percent and the partial response is at around 20 percent (perhaps higher), IL-2 is the one treatment that might nip this thing in the bud.  My own nephrectomy was last September with lung nodules found in January.  Two weeks of IL-2 in March and I've enjoyed mostly progression free disease--no new ones and these have not grown appreciably.  So another round of IL-2 is scheduled for late July.

I'd say a lot depends on your overall health--you have to be well enough to qualify for IL-2 in terms of heart, lungs, etc.  And those things that make you a good candidate for IL-2 might also bode well for a higher  chance of success.  At least that's my hope.

dhs1963

how do you know the nodes are cancerous?

Are they/have they biopsied the nodes?  

 

I have several enlarged nodes, but they are not growing...been stable for about a year.  

 

 

Tbuck1971

Thank You

Thank You for all the wonderful feed back from each of you.  I just started following this information and found this site today, it really helps that you have added so much wonderful information.  I have papillary renal cell carcinoma, or is what I was diagnosed with.  My doctor blew me away with bad news yesterday, it was like he stepped into the office punched me in the face and walked out.  He did give me helpful advice and where to advance the treatment plan I am looking to undertake.  I also am reaching out for other options/suggestions as well.

 

Djinnie, GS Ron, Thaxter & DHS1963:  Very much appreciate your notes.  I have yet to get a biopsey and hope to get that done soon.  My current oncologist did not recommend having this done.  However, I guess I would like to know more and if not too invasive it would give a little piece of mind.  My biggest fear is that my cancer is super agressive with the lymph nodes found at 6 months and nothing was present at surgery. 

 

Thanks again for your comments.

 

Take care

 

Tom B.

donna_lee

Tbuck1971 said:

Thank You

Thank You for all the wonderful feed back from each of you.  I just started following this information and found this site today, it really helps that you have added so much wonderful information.  I have papillary renal cell carcinoma, or is what I was diagnosed with.  My doctor blew me away with bad news yesterday, it was like he stepped into the office punched me in the face and walked out.  He did give me helpful advice and where to advance the treatment plan I am looking to undertake.  I also am reaching out for other options/suggestions as well.

 

Djinnie, GS Ron, Thaxter & DHS1963:  Very much appreciate your notes.  I have yet to get a biopsey and hope to get that done soon.  My current oncologist did not recommend having this done.  However, I guess I would like to know more and if not too invasive it would give a little piece of mind.  My biggest fear is that my cancer is super agressive with the lymph nodes found at 6 months and nothing was present at surgery. 

 

Thanks again for your comments.

 

Take care

 

Tom B.

The sucker punch routine...

I know most of us have run into that big fist at one time or another.  I won't bore everyone else with all the details, but if you click on my user name under my pix, it'll take you to what I went thru.

I would assume, prior to your DX, you had some types of diagnostic tests, i.e., CT, Ultrsound, etc.  Were those used for comparison studies with the current findings on the CT?  

A fine-needle aspiration biopsy would be the only way to determine if the enlarged nodes are cancerous and if they are the same papillary cancer. This takes a little time to schedule as an ultrasonographer has to be there for the radiologist to locate the place to stick the needle.  It is not painful.  But a surgery to remove all of them that are evident at this time could be traumatic to the body.  And as in my case, those nasty little cells can be totally hiding in a node and then wait a few months to start to divide and multiply.

But considering you have a number of enlarging nodes already, I think I would seriously explore the IL 2 course of treatment.  It's not fun or easy as some here, and a friend in a cancer support group can testify, but they are here now to tell us about it.

Do your homework and make your choice.  Then proceed.  And Good Luck.  May you kick **** and live to tell us all about it.

Donna

dhs1963

Tbuck1971 said:

Thank You

Thank You for all the wonderful feed back from each of you.  I just started following this information and found this site today, it really helps that you have added so much wonderful information.  I have papillary renal cell carcinoma, or is what I was diagnosed with.  My doctor blew me away with bad news yesterday, it was like he stepped into the office punched me in the face and walked out.  He did give me helpful advice and where to advance the treatment plan I am looking to undertake.  I also am reaching out for other options/suggestions as well.

 

Djinnie, GS Ron, Thaxter & DHS1963:  Very much appreciate your notes.  I have yet to get a biopsey and hope to get that done soon.  My current oncologist did not recommend having this done.  However, I guess I would like to know more and if not too invasive it would give a little piece of mind.  My biggest fear is that my cancer is super agressive with the lymph nodes found at 6 months and nothing was present at surgery. 

 

Thanks again for your comments.

 

Take care

 

Tom B.

were the lymph nodes at the kidney site?

If so, then that changes things, and they are hard to get out.  Plus, with multiple mets, surgery becomes less of an option (I have been lucky and only had solitary met).

 

 

 

a_oaklee

Hi Tom.  I certainly

Hi Tom.  I certainly appreciate what you must be feeling right now. 

My first thought was how do they know they are cancer?  

Some people have had a lymph node removed if it was accessible.  My husband had one removed with his nephrectomy.  It was positive as they thought it would be.  His diagnostic test was a PET/CT.  My husband is doing pretty well and has been on targeted therapy for 2 years.

Second opinions are great, but I don't think you should wait very long to get an appointment.

Im glad that you found this site.  It's a very helpful place to be.  

Annie

 

todd121

Welcome

Hi Tom,

Glad to see you posting. Sorry it has to be about this. It's been a real struggle for me this past year not getting ahead of myself and worrying about stuff before I know for sure what it is. I've had some serious anxiety issues, and most of what I worried about turned out to be "advance worry syndrome".  Still, I know it's hard. I can't even follow my own advice.

I hope you're seeing someone that knows a lot about advances in RCC. A medical oncologist with experience treating RCC is your best bet? IL2 isn't usually the first thing to be tried these days. There are several targeted therapies available that can slow or even halt disease progression in some people. Plus there are quite a few drug trials and some new drugs on the horizon for approval that are quite effective.

The way I found my specialist was I went to the national website for drug trials, and then I searched for the trials in my area related to RCC. They have doctor's names there that are the contacts for those trials. Those are almost always doctors who are doing research in RCC or very knowledgable about it.

IL2 is controversial in some circles. It has been one of the few drugs to produce a durable response, but it is effective in very small number of people, and the drug and dosage has a very high toxicity. My oncologist won't even give IL2.

See if you can find an RCC expert for a second opinion. I'd get a second opinion even for my RCC specialist that I have if I needed further treatment. If you need help locating one, follow what I did above, or ask here, or try and reach someone the closest to you as possible and call the dr office there and ask for a referral closer to you. Often these RCC specialists work with other medical oncologists in surrounding communities to help them treat patients.

Best wishes to you.

Todd

 

foxhd

todd121 said:

Welcome

Hi Tom,

Glad to see you posting. Sorry it has to be about this. It's been a real struggle for me this past year not getting ahead of myself and worrying about stuff before I know for sure what it is. I've had some serious anxiety issues, and most of what I worried about turned out to be "advance worry syndrome".  Still, I know it's hard. I can't even follow my own advice.

I hope you're seeing someone that knows a lot about advances in RCC. A medical oncologist with experience treating RCC is your best bet? IL2 isn't usually the first thing to be tried these days. There are several targeted therapies available that can slow or even halt disease progression in some people. Plus there are quite a few drug trials and some new drugs on the horizon for approval that are quite effective.

The way I found my specialist was I went to the national website for drug trials, and then I searched for the trials in my area related to RCC. They have doctor's names there that are the contacts for those trials. Those are almost always doctors who are doing research in RCC or very knowledgable about it.

IL2 is controversial in some circles. It has been one of the few drugs to produce a durable response, but it is effective in very small number of people, and the drug and dosage has a very high toxicity. My oncologist won't even give IL2.

See if you can find an RCC expert for a second opinion. I'd get a second opinion even for my RCC specialist that I have if I needed further treatment. If you need help locating one, follow what I did above, or ask here, or try and reach someone the closest to you as possible and call the dr office there and ask for a referral closer to you. Often these RCC specialists work with other medical oncologists in surrounding communities to help them treat patients.

Best wishes to you.

Todd

 

Sorry you found us

because we would rather be a closed club. Unfortunately new members keep finding us. that sucks. But anywho, don't be too quick to make treatment committments. Take enough time to find out all your options. I was pretty involved but got lucky. Immunotherapy looks to be the best option for many. I had nivolumab for 18 months which did wonders. But it eventually failed and I went the Il-2 route. It can be very tough to endure for some. Especially me. However, I appear to be doing well and despite having been through quite a bit, I am strong, fit , and healthy. I don't recommend choosing Il-2 as the first course of treatment. Other new drugs are working well and more are on the horizon. Spend time learning as much as you can before making a decision. Good luck.

NewDay

foxhd said:

Sorry you found us

because we would rather be a closed club. Unfortunately new members keep finding us. that sucks. But anywho, don't be too quick to make treatment committments. Take enough time to find out all your options. I was pretty involved but got lucky. Immunotherapy looks to be the best option for many. I had nivolumab for 18 months which did wonders. But it eventually failed and I went the Il-2 route. It can be very tough to endure for some. Especially me. However, I appear to be doing well and despite having been through quite a bit, I am strong, fit , and healthy. I don't recommend choosing Il-2 as the first course of treatment. Other new drugs are working well and more are on the horizon. Spend time learning as much as you can before making a decision. Good luck.

WELCOME

Hi Tom,

Welcome, though I'm sorry you had reason to be here.  This is a great place to get support and advice through this journey.  The encouraging news is that there are members here that have had success with many of the drugs that are available.  While we are glad to share our experience and technical knowledge, there is another site that you might want to visit that has a large number of RCC patients with advanced disease that can share their experiences with treatments and surgeries.  They have a lot of technical information and can also advise the best places to seek treatment.  The link is SmartPatients.com.  I don't mean to run you off.  I hope you do stick around here.  We would like to help you get through this.  I belong to both forums.  Please keep us updated.

Kathy

Tbuck1971

Thank You again for all the wonderful advice!

My current plan involves my Oncologist direction to visit with the University of North Carolina cancer center as they have kidney cancer specilists that he advised are specialists with Papillary Renal Cell Carcinoma. My plan is also to consult with Virginia Cancer Center and the Dana Farber Cancer Research Center. Though all of my research appears grim, I am optimistic that we will all be victorious in our efforts.

 

I wish you all the very best and gosh, I cannot even put into words the blessings of having a group of advisers and co-conspirators in defeating the dreaded disease! I will continue to advise and ask for advice.  I am open to many options and will as many of you have suggested take in the information, make as good a decision as possible and move forward, but I just feel I need to move quickly. My next appointment confirmed for June 26 at UNC. I am still waiting for other appointments with the other centers.

Thx again!

God Bless!

 

Tom B

Tbuck1971

Another question?

Could anyone tell me if they have Papillary Renal Cell Carcinoma?  That is my specific diagnosis.

 

Thx again!

GSRon

Tbuck1971 said:

Another question?

Could anyone tell me if they have Papillary Renal Cell Carcinoma?  That is my specific diagnosis.

 

Thx again!

Ah.. ok. It is important to

Ah.. ok. It is important to give us all the info so we can try to be more helpful.  Papillary is a rarer form of RCC.  And there are two types of Papillary now identified, type 1 and type 2.  

For more info, I suggest you get on to Smart Patients.com.  Here is a link to the Papillary search.. suggest you read these, then post your questions.. this is the more "serious" forum, not as much warm fuzzies, but more direct knowledge.

https://www.smartpatients.com/conversations/search?utf8=✓&search_topic_search[keywords]=papillary

Ron

hydrangea

Tbuck1971 said:

Another question?

Could anyone tell me if they have Papillary Renal Cell Carcinoma?  That is my specific diagnosis.

 

Thx again!

Specific Diagnosis

Hi Tom,

You asked if anyone also had a tumor identified as Papillary Renal Cell Carcinoma.  I had a robotic partial nephrectomy of the right kidney to remove a 4.2 cm tumor.  Tumor type: dedifferentiated papillary Type II (>90% sarcomatoid, extensive necrosis); Furhman grade IV;Stage:  III pT3a and penetrated into perinephric fat. I am sorry to hear of your situation but sincerely thankful that you found this site.  You are in good hands on this site as there are many knowledgeable members who are very helpful.  I pray that everything works out for you and if you should have further questions regarding my similar diagnosis please feel free to ask me. I will  do my best to share any information I may have that would be helpful to you.Take good care of yourself.

Diane