RCC stage 4. Tumor in last remaining kidney

grtdane
grtdane Member Posts: 16
edited May 2017 in Kidney Cancer #1

Hi all. I posted here maybe five months ago when I was just in the process of gathering information about a recurrence of RCC, after 4 years of clear scans on follow up. This is an update. 

As a recap, a pulmonary node and lymph node showed up in my lungs via a CT scan for my heart in December, flagged as RCC. I was referred to a pulmonologist who did a bronchoscopy. Right after performing the procedure he then left on vacation for a month with instructions for my family doctor to a) if results come back as malignant send me to oncologist or b) if not we will follow up when I get back. 

The bronchoscopy was done in February and it was inconclusive so I waited for a month to see him again. When I did, a CT scan was scheduled for April to see if the node and lymph node had progressed. It had, and was again flagged as RCC, almost definitively this time based on the growth of both the pulmonary node and the lymph node.

I was put in contact with Dr. Kollmansberger from Vancouver , who is an expert in RCC. I am on Vancouver Island and I got a referrel to him. I have seen him once, and meet with him again this Tuesday (tomorrow).

Last week I had a core sample of the lung node taken, as well as a full body CT scan with contrast. 

I have since gotten the CT results from last week's scan from my family doctor and it had a big surprise on it. There was a 4.9 x 4.1 x 3.8 enhancing renal mass in the upper pole of my right kidney. It was compared to the scans from December and April, mentioning this tumour was previously measured 4 x 3.8 x 3.5.

I am mystified how this had not been caught on previous scans. This is the first I was informed of this tumor even though it was obviously there in the previous scans. To me there was a failure of the system at some point. Since I have had my left kidney removed, I know this is a grave development, and the sooner it was discovered the more kidney they may have been able to save. 

So that is where I am at, and I will come back and give an update once I talk to Dr. Kollmansberger. He has been talking to my cardiologist because I have aortic stenosis as well, and they are looking at replacing my aortic valve (seeing surgeon on June 13 to discuss). At 47 years old, things are coming at me fast and furious right now, to say the least.

If you are wondering how this could happen, one theory is that the year of chemo and six months of radiation I had as a teenager for Hodgkins Disease in the 80s has caught up to me. 

Sorry for the long post, but I really want to know if anyone on the forum has had a tumor in their remaining kidney and what they did to treat it? Thanks so much. 

 

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Glad you updated us, but sad

    Glad you updated us, but sad for all you are going through. I too would be so upset this new kidney turmor was not mentioned or treated earlier. I had my left kidney removed, so more to be aware of I guess. No, I have not had a new tumor on remaining kidney. Again, I am sorry for your challenges.

    Please keep in touch as WE will be here for you hon. 

    Sending you healing vibes and a huge dose of HOPE and wellness!

    hugs, Jan

  • grtdane
    grtdane Member Posts: 16
    Jan4you said:

    Glad you updated us, but sad

    Glad you updated us, but sad for all you are going through. I too would be so upset this new kidney turmor was not mentioned or treated earlier. I had my left kidney removed, so more to be aware of I guess. No, I have not had a new tumor on remaining kidney. Again, I am sorry for your challenges.

    Please keep in touch as WE will be here for you hon. 

    Sending you healing vibes and a huge dose of HOPE and wellness!

    hugs, Jan

    Thanks Jan, you are an

    Thanks Jan, you are an incredibly kind woman. I appreciate the feedback. If you hear of anyone who might have had RCC in both kidneys, I'd love for them to post and tell me about their experience! 

  • todd121
    todd121 Member Posts: 1,448 Member
    Previous Scans

    It most certainly should have been mentioned before. Do you not get a copy of your follow-up scans and read them? I always get a copy of the scan and read it. There's a synopsis for the top on mine, and then a detailed results section. I always read both.

    I don't see how nobody mentioned this to you previously. Did you ask your oncologist? I'd sure ask.

    Todd

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Have you tried SmartPatients

    Have you tried SmartPatients.com? There are more folks there. Hopefully someone here will response as well.

    Also, it is good to fill out your proile/story. 

    Here for ya!

    hugs, Jan

  • grtdane
    grtdane Member Posts: 16
    edited May 2017 #6
    todd121 said:

    Previous Scans

    It most certainly should have been mentioned before. Do you not get a copy of your follow-up scans and read them? I always get a copy of the scan and read it. There's a synopsis for the top on mine, and then a detailed results section. I always read both.

    I don't see how nobody mentioned this to you previously. Did you ask your oncologist? I'd sure ask.

    Todd

    Previous Scans

    Hi Todd, I do get a copy of all my scans as soon as they are ready. This was a situation where someone, the doctors or radiologists reading my last two CT reports, didn't report or notice the tumor in the right kidney. The first CT in December, which the latest scan was compared to, was ordered for my heart. That flagged the lymph node and pulmonary node. In April another scan was done and it showed both the pulmonary node and the lymp node had grown, but still no mention of the right kidney tumor. It was the doctor reading the May scan that noticed it, and checked the previous scans to compare how much it grew. He noted the growth. May was the first time anyone mentioned the right kidney! Crazy! 

  • Callyco
    Callyco Member Posts: 57
    Watching my remaining kidney

    I haven't posted anything lately, but I can answer this question. I just received my results from my first CT scan since my right kidney was removed in January. The doctor said there was a small low density mass on my remaining kidney. Possible cyst. When I hear the word mass, I am thinking more RCC. I am scheduled for another CT scan in 3 months to see what is going on with this. Not the news I was hoping for. My initial diagnosis in January was Stage 1, Grade 2.

    Callyco

  • grtdane
    grtdane Member Posts: 16
    Callyco said:

    Watching my remaining kidney

    I haven't posted anything lately, but I can answer this question. I just received my results from my first CT scan since my right kidney was removed in January. The doctor said there was a small low density mass on my remaining kidney. Possible cyst. When I hear the word mass, I am thinking more RCC. I am scheduled for another CT scan in 3 months to see what is going on with this. Not the news I was hoping for. My initial diagnosis in January was Stage 1, Grade 2.

    Callyco

    Hi Callyco, hope this turns

    Hi Callyco, hope this turns out to be a cyst for you. Wishing you the best. Laughing

  • Callyco
    Callyco Member Posts: 57
    edited May 2017 #9
    Thanks for hoping

    Me too. I got excited when the nurse read the CT report everything was good. But....Doc wants to watch a "cyst". It really let me down.