Suggestions, advice?

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

Are they/have they biopsied the nodes?  

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

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.

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

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 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

 

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.

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 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