Newly diagnosed and need some help.

[jkidd1982]

I have a large 15cm kidney tumor being removed tomorrow 5/30. My surgeon who I was referred to had me to a chest CT scan last week with contrast. The findings were not great, but he's already spoken with the Oncologist and has a plan for immunotherapy after surgery. I haven't done great researching this, so can someone let me know how serious these findings are? Thank you! I know Spiculated is cancer.

 

LUNGS: Numerous (15-20) spiculated lung nodules measuring up to 16 mm (such as in the lingula on series 4 image 205 and 146, superior right lower lobe on image 136).

 

MEDIASTINUM AND HILA: AP window, right hilar, and right interlobar nodal metastases measuring up to 1.9 x 1.5 cm (AP window on series 4 image nodule 1).

 

 

[edivebuddy]

spiculated is not necessarily cancer.  By far most are not.  But the fact that you do have liver cancer, it's size and number of lung lesions means the odds go up that it is a metastasis.

 

Immunotherapy can have miraculous results. Knocked mine out and my was pretty extensive.  Hope surgery goes well. 

 

[jkidd1982]

Thank you for the info. I only talked to the surgeon for a few minutes last week when he called me back about the CT results. So I haven't gotten much info from the Doctors about my lungs, but happy they are already talking about me and creating a plan.

This kidney has to come out first though and I can't wait for it to come out because of how much pain it's putting me through.

 

[edivebuddy]

At this point they have probably had the whole Tumor Board has come up with a plan.  

Are you being treated by at one of the NCCN Centers? 

[jkidd1982]

I'm on the tumor board here at University of Tennessee Medical Center, and I know they discussed my case yesterday. But apparently my surgeon is a big deal on the board and he can have the final say. So I already know who the oncologist is that will be treating me after surgery here at UTMC.

[Tom Galli]

Jkidd,

Welcome here. I completely understand your concern.

I agree with edivebuddy. Speculation does not mean cancer but it is a concerning sign, especially given the size. But, after 20 years of surviving lung cancer, my yearly CT scans still report speculated lung nodules.

Here are some suggestions. Ensure your surgeon submits a biopsy of your kidney tumor for 2 kinds of evaluation: a histology (microscope) procedure and a follow on laboratory analysis to check for biomarkers in the sample. The histology examination is always performed while the biomarker testing may not be.  Laboratory testing will report if your cancer will respond to new types of chemotherapy including immunotherapy that can control or hopefully eliminate your cancer.  Here is some more information on biomarker testing.

Has your surgeon performed a PET scan? This page contains information about PET scans and what they mean. The PET scan will report if tumors or nodules are metastatic. If you've not had a PET scan and if the histology examination shows cancer in your kidney tumor, then after surgery, consult with a medical oncologist after you recover from surgery. This medical discipline treats cancer of all types and all stages.

Godspeed for tomorrow's procedure.

Stay the course.

Tom

[Livin Life]

Just want to send support, jkidd!  You've received some good feedback from edive and Tom.  Wishing you the best and keep us updated....

[jkidd1982]

I'm on the tumor board here at University of Tennessee Medical Center, and I know they discussed my case yesterday. But apparently my surgeon is a big deal on the board and he can have the final say. So I already know who the oncologist is that will be treating me after surgery here at UTMC.

[jkidd1982]

Sadly the procedure didn't go as well as planned. My surgeon tried for three hours, but the kidney tumor has become attached to my back muscles. He tried for three hours, but didn't consider it safe to move forward and so the kidney and tumor are still inside me. They did a long biopsy yesterday and a CT scan of my head this morning.

 

I will meet with the oncologist and they are going to start me on the immunotherapy therapy ASAP to at first stop the spreading, and then to shrink the tumor where hopefully in about three months they can try to remove it again. The really bad news is the oncologist said this is the most aggressive cancer this hospital has ever seen.

 

I have a hard three months or so ahead of me.

[Livin Life]

Sad to hear this update jkidd on inability to remove either the tumor or kidney and the aggressive nature of the cancer.  I'm glad you have a plan with the immunotherapy.  I sure hope that will shrink your tumor so they can try removal again.  Yes, on difficult three months ahead... hang in there as best you can.  I hope you have good supports - can help a lot even while these are still solitary experiences too.  Sending support and healing energy....  Please keep us updated....

[jkidd1982]

Thank you so much for the words of support. I have an amazing support system and a girlfriend who has been right with me here in the hospital the past two nights.

I'm going at this with a take charge and positive attitude. My day shift nurse even said that we have such a positive outlook on life and those are usually the type that come out with good stories.

I'll get my lung biopsy results in about a week or so and supposed to meet with oncology next week. So I will update as I get them. Just have positive thoughts for me!

[RJN]

Gosh, you have been through the mill. Cannot imagine going through major surgery with so little result. BUT - I am a huge believer in immunotherapy and I keep seeing something akin to miracles for immuno people, so if you are a candidate there is plenty of reason for optimism. My cancer had spread to lymph nodes as well, and disappeared completely with Pembro ( Keytruda), leaving only lesions on my adrenals, which they removed surgically two years into treatment. Fingers crossed you will have a good result as well. 

[jkidd1982]

They are attacking my tumor with Keytruda and Lenvima. I had my very first Keytruda infusion with Sometra on Monday with no side effects at all yet. I might have another one Monday 6/17 due to my calcium being critical high levels. The NP wants to me checked again Monday and thinks this could also be a reason why I have been feeling so crappy. I can say if it's because of the Keytruda then I'll call it a miracle that within two days I wasn't the nauseous anymore. I still can't eat a lot, but at least I'm not wanting to throw up from just a glass of water.

I met with my surgeon yesterday who has done over 2,000 of these robotically, and he said his decision to abort came down to life or death even with two other 2nd opinions during the surgery. He has put it in the Oncologist hands for 3-4 months now to see what happens. He did say that aggressive cancers like mine also respond very aggressively to treatments, so this could be a good thing.

[edivebuddy]

I'm going to second your doctors opinion on aggressive Cancers. I had two aggressive Cancers at the same time. Papillary adenocarcinoma of the lung. And  poorly differentiatedSquamous cell carcinoma of the head and neck. Ended up in The ICU because they were so aggressive . Craniotomy in the AM and chemotherapy that night.  Just as the night settled the oncologist told me that indeed he had never seen or heard of a cancer growing as fast as mine did. But in his experience aggressive cancers that respond to treatment usually respond just as aggressively.  I had a giant metastasis on the outside of my neck.   12 days after keytruda it was gone. I couldn't tell if the rest were gone or not but in 28 days I had no brain lesions and  about 10 weeks at my next PET they were all gone!

I hope you have the same type of response.

Did they say anything about checking for bone metastasis?  Hypercalcemia can be a sign of bone Mets.  Though it is possibly caused by keytruda.

May be hard to find any help here with Lenvima because it doesn't work on lung cancer. But many here including myself have plenty of experience with keytruda.

Good luck. Stay extra hydrated.
 

[jkidd1982]

Thank you and Wow, that's amazing the success you had with your mass with Keytruda.

 

Every single person Monday during my first infusion looked at me and said it was a miracle drug.

 

They haven't mentioned my bones, but I'm guessing that through all my CT and MRI scans along with blood work that nothing with my bones has looked suspicious. I'll see my Oncologist Monday for another possible infusion already, so I can check.