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All clear?

Rannf
Posts: 8
Joined: Mar 2013

New to kidney cancer, 3 months ago had surgery and at follow up appointment given the all clear.  My family doctor was updating my records and sent me all the info from my surgery.  The pathology report was one of them.  In it I found that Tumor extention into pelvicaliceal system was suspected and lymphovasular invasion was suspected also.  I went into a panic mode and made an appointment with an oncologist right away. My cancer grade was Fuhrman nuclear grade 3 and tumor size was 5.2x3.5x3.4 clear cell renal cell carcinoma.  Anyone else told that it was all clear and not to go to an oncologist?  From what I have been reading this is not a good diagnosis and needs treatment to help prevent reaccurance.

DogRescuer's picture
DogRescuer
Posts: 49
Joined: Feb 2012

Usually the dr who performed your surgery would follow up with you, explaining the results and provide you a copy of your pathology report.  As far as seeing an oncologist to give you some perspectiv, I had breast cancer 4 yrs ago and when I was diagnosed with kidney cancer, I was referred to a Urologist.  My urologist not only performed the surgery but he is who has followed up with the kidney cancer---I see my oncologist, but only for follow up from my breast cancer.

Try not to worry too much as some of us have had bigger tumors than yours and are doing well.  However, it seems the usual protocol is to have follow up scans scheduled every few mos.  For example I go in every 6 mos.  Did a urologist perform your surgery?  If so, has he/she requested follow up visits?

Others who know much more than I will respond to your post.  You've come to the right place for support, information and inspiration.

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

For several months I have been logging onto this site daily and reading all of the postings.  I have used this site as a means of support and to gain more knowledge of RCC.  Many of you on this site have helped me through many sleepless nights.  Many times I have wanted to reply with my comments, but lacked the confidence and courage.  However afterr reading the comments from Rannf this evening, I am ready to share my experience.

I am relieved to know that I am not alone in believing that surgery was the ALL TIME CURE.  Like you Rannf, my family and I were told by my surgeon immediately after surgery that he was confident that he got it all and the margins looked good.  We rejoiced and felt that prayers were answered.  We didn't ask many questions at that time, we were just relieved that it was OVER. 

My appointment with the surgeon 2 weeks post surgery was rather a rush.  It was 2 days before Christmas, waiting room was filled with patients and the surgeon was running 1 1/2 hours behind schedule.  I felt rushed when we finally got to see him, and I didn't ask questions, I just listened to him and my husband took notes.  He said the tumor was larger than anticipated, aggressive type carcinoma that invaded the perinephic fat, margins were clear and I didn't need to see him until 3 months later with another CT scan of abdomen and pelvic. I was not shown the pathology report, nor did I ask to see it.  The only question I asked was if I needed chemo and he said no, RCC is not responsive to chemo. He didn't mention referring me to an oncologist for follow up.  I felt that his time was precious with so many patients waiting, I didn't want to detain him any longer than necessary.  I was thankful that I survived surgery and once again thought this nightmare was over.  Now I realize that was my defense mechanism as I was in shock and denial. 

Three months post surgery I have the CT scan with and without contrast of abdomen and pelvic.  This time I thought I was more informed and I asked to pick up the scan report prior to seeing the surgeon.  After reading it I became very anxious as to the many things revealed in the report.  I felt I was better prepared to ask questions of the surgeon at this next visit.  Once again my husband went with me, the surgeon reviewed the CT scan and reports and answered our questions.  He reassured us both that I would be ok.  In fact he referred us back to my local urologist for follow up CT scans every 6 months for the next 2 years and then once a year and said that he would be here for me if I ever needed him.  No discussion of the pathology report or oncologist follow up. 

After that appointment my shock and denial wavered and I became a self-advocate.  I requested all hospital records, doctors notes, pathology report, and set up a detailed notebook.  Once I read the pathology report I definitely had plenty of questions - 4 months after surgery!  I requested another appointment with the surgeon and was able to meet with him.  This appointment met all of my expectations and I am glad that I did this on my own.  We reviewed everthing on the pathology report and at the end of this appointment he DID recommend I see an oncologist every 3 months in addition to the urologist due to the aggressive SARCOMATOID and type 2 papillary as they were worrisome.  He also changed follow up to include a chest / abdomen / pelvic CT scan w/ and without contrast every 6 months for the next 5 years.

I have a talented surgeon, an proactive oncologist and an informed urologist; each serve diverse purposes but united in my care.  I am truly thankful for such a team.

I believe that I have confirmed that I agree that you are doing the right thing in consulting with an oncologist.  I find that the oncologist manages my care along with the urologist who in turn sends the CT scan results to the surgeon but I don't see him unless I again require surgery.  This does require more doctor visits but I feel it is better to be pro-active than reactive when it comes to this dreadful form of cancer.

Sorry if I have written too much - it has taken me so long to actually share this, it is uplifting to get it off my chest!

I wish you the very best in your journey. 

Also a big thank you to all on this site - what a great group of interesting human beings.  I am in good company.

STATS:

Female - age of diagnosis:  60

Right kidney partial nephrectomy    12/11/11

Tumor Type:  Dedifferentiated papillary carcinoma (>90% sarcomatoid, extensive tumor necrosis)

Tumor size:  4.2 cm

Grade:  IV

Invaded Perinephric fat

Stage:  III, pT3a

Suffered allergic reaction to the dye of the contrast at last CT scan in Sept. 2012; required hospitalization for 2 days.  Next CT is scheduled in March again with contrast but this time with meds prior to and after the scan.  Cross your fingers it goes ok, this is causing me added Scan xiety!!! 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Rannf
Posts: 8
Joined: Mar 2013

Thank you for you heart felt reply.  I am in the process of getting the appt. with the oncologist associated with the kidney research center of the Cleveland clinic.  I think I am on the right track there.  The waiting in between all of this is the hard part.  Your description of rejoice that everything was out and you are good to go is exactly how we felt.  My husband also went along with me and took notes and asked questions that maybe I didn't think of.  What a blessing it is to have that support.  As it is to hear from wonderful people like you.  Thanks again for sharing, I can't tell you how good it feels to know someone else has went through the same thing as you.

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

I need  to thank you! Your posting gave me the courage to actually admit in print that I truly believed that surgery was the ALL TIME CURE and I would be done with this nasty cancer.  You don't know how long I have been reading the postings on this site daily - many months and many times I wanted to tell my story but just couldn't.   I feared that I would appear uneducated about this cancer and rather naive.  But once I read your story I knew I had to respond.  I wasn't alone - you experienced the exact same time with your surgeon.  Difference is I'm in Connecticut!

So thank you for inspiring me to truly advocate for myself.  I have a loving husband who accompanies me on every visit, takes notes and gives me unconditional support.  I am truly blessed and want you to know that you have made me feel so much better.

Take good care and I wish you the very best at your appointment with the oncologist.

Diane

Rannf
Posts: 8
Joined: Mar 2013

I have to write to you once more just to tell you what a absolute relief it was hear your encounter and how similar our experiences are in of course different cities.  I really do appreciate you sharing With me your very personal illness.  I like you didn't want to sound like I didn't know what I was talking about....there is just so much you can look into and cram into your head about this cancer and all of its ins and outs.  Every week that goes by there is something new that I am looking into.  I think our minds can only take so much at a time.  I had tears in my eyes when you wrote back to me To show you what an impact you had on me.  Thanks again and hopefully we can keep in touch on our treatments and progress.   Love Rose

todd121
Posts: 504
Joined: Dec 2012

If I may ask, what Stage was your tumor? You didn't mention it. It's imporant. There should be a Stage (1,2,3a,3b,4), and there might be something like N with a number or M with a number? You can find information about the staging on a few different sites. I can post a link if you're interested.

I had a similar experience, in that my surgeon (a urologic oncologist) did not suggest I see a medical oncologist. Before my surgery he had guessed I was Stage 1 and that my prognosis was fairly good for this type of cancer. He was wrong. My tumor had grown into some of the veins and so it was Stage 3a, making my prognosis quite a bit worse. Still, he did not suggest I see a medical oncologist. The standard of care for a tumor confined to the kidney following nephrectomy is ct scans every 4-6 months for 2 years and then yearly to 5 years (that's what I understand). He had planned to follow me himself. In fact, he didn't even order a scan of my lungs or suggest looking into a small bone lesion I had on my thigh bone.

I consider myself lucky in that my uncle is a retired medical oncologist. When the urologic oncologist suggested I  was cured, my uncle told me he disagreed with the rosy prognosis and urged me to find a medical oncologist. The first doctor I saw was fresh out of his fellowship. He used a tool on the Sloan Kettering website to calculate my prognosis as an 13% chance of recurrence. I felt very happy and thought I was done. My uncle disageed again, and urged me to see a medical oncologst that specialized in RCC. I looked into adjuvant therapy trials going on in my area and found the doctors heading them up. Both are medical oncologists specializing in RCC. Both put my prognosis at closer to 50% chance of recurrence. This was what my uncle had supposed by looking into study data. (These two independent visits were weeks apart at different hospitals). One of the specialists showed me the data from a study at UCLA to back up his prognosis. The medical oncologists modified the ct scan to include my lungs and also ordered a bone scan to look at the lesion on my thigh bone. Fortunately it turned out to be negative. 3 very small nodules were found in my lungs, but they may be nothing.

I'm now in a drug trial for an adjuvant treatment. There is none approved at the moment, but they are running trials using some of the drugs that have been developed for metastatic disease. The idea of an adjuvant chemotherapy is to give the chemo drug to you to wipe out any microscopic cancer cells in your body while there are relatively few before tumors start to form. There are approved adjuvant therapies for some other types of cancer (like breast cancer), but none yet approved for RCC. I'm hoping the drug I'm taking (or hopefully am taking as half the people on the study get a placebo) might be effective in improving my chances the cancer won't come back. My uncle urged me to do what I can to improve my chances.

There is no standard treatment if tumors are not present. There's no approved adjuvant therapy. Standard treatment is scans looking for tumors, and then treat the tumors when they find them. The only other option is one of the trials going on for adjuvant therapy, but of course these drugs may not be effective.

Still, I think you'd be wise to see a medical oncologist who specializes in RCC if you can and get followed with one. You'll want to keep in touch with one to keep plugged in to whatever advances they come up with in any case. It seems things are advancing quickly. There are lots of new drugs in the past few years. My uncle retired about 7-8 years ago, and he wasn't familiar with any of the new drugs. I'm glad I'm seeing someone who has access to the latest research in this area, as it's a fast changing field.

Best of luck to you!

Rannf
Posts: 8
Joined: Mar 2013

Thanks so much for your reply I will look for the stage a nd other info, I did not see it on the pathology report. Looking forward to up coming appts. hoping for the best out come.  If you could forward the site info I would appreciate it.  Thanks again.

todd121
Posts: 504
Joined: Dec 2012

I like my urologic oncologist/surgeon's website for a good introduction to kidney cancer. There's info on the staging there, but I don't think it's entirely accurate. Have a look here: http://www.kidneycancerinstitute.com/

I have a problem with his definition of Stage T3a. Actually, I just checked the Kidney Cancer Association, and it has the same definition and it doesn't agree with my pathology report (or others I've heard here).

This is good information to read in any case: http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/ You will have to scroll down to find the information about Stage and Grade.

The problem I'm having with both of these sites is that they define T3a this way:  Tumor has spread into the adrenal gland or into fatty tissue around the kidney, but not beyond a fibrous tissue called Gerota’s fascia, which surrounds the kidney and nearby fatty tissue.

I had thought for sure I was going to be Stage 1 because I had read these definitions. My tumor was 6.8 cm (<7.0 so not Stage 2), and did not fall into any of the T3 definitions on the above pages. However, my tumor had invaded the smaller veins (both at a macro and micro level, according to my pathology report) and for that reason I was given Stage T3a.

This page at the National Cancer Institute at NIH looks like a better definition. They don't break it down into 3a, 3b, 3c. http://www.cancer.gov/cancertopics/pdq/treatment/renalcell/Patient/page2#Keypoint11

Best of luck to you.

Todd

NanoSecond's picture
NanoSecond
Posts: 513
Joined: Oct 2012

Hi Todd,

Have you seen this paper? It is called, "Staging of renal cell carcinoma: Current concepts":

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2808645/

todd121
Posts: 504
Joined: Dec 2012

I hadn't. I'm reading it now. Thanks!

 

Rannf
Posts: 8
Joined: Mar 2013

I did find the staging info:  T1bnx grade 3  I looked up the info on the sights you suggested and all made seance except the nx which I can't find any where.  I also was concerned about the Lymphvascular Invasion suspected and Tumor extention into pelvicaliceal system suspected.  I am sure that the oncologist will answer all of my questions.  I would like to find out something in the mean time if possible.  Thanks for your help, it is much appreciated.

todd121
Posts: 504
Joined: Dec 2012

It means that no lymph nodes were actually removed and examined. The X stands for "don't know", or "unable to confirm". I'm not sure there's much difference between NX and N0. Anybody want to split that hair?

N# is number of lymph nodes found to contain cancer. If they don't see any enlarged/problematic lymph nodes on your scan, they don't usually take them, and then they put NX on the diagnosis. Generally NX and N0 means no lymph nodes were observed to have been contaminated by the cancer.

Todd

Disclaimer: Almost everything I know I've learned on the internet. Please don't depend on my google-ability for anything important, even if I sound confident. :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Todd, "N# is number of lymph nodes found to contain cancer" - is wrong.  The only values for the parameter are X  0 1 and 2.  1 indicates that a single regional (local) node is involved and 2 indicates more than one regional node, and/or distant nodes compromised.  Any number of infected nodes beyond that still gets a 2.

Your characterisation of the distinction between Nx and N0 is about right - since RCC is sneaky, there's not much difference in diagnostic value between 'We don't think so but can't say for sure' and 'We think not, but we could prove to be wrong'.

todd121
Posts: 504
Joined: Dec 2012

That explains why I've never seen anything bigger than 2! Thanks. It sounds like a software engineer came up with that definition.

It reminds of of one of the software beatitudes I heard at some point: "Blessed are the C programmers, for they shall be off by one."

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Actually, probably not a s/w engineer but someone who noticed a catastrophe point in the prognostic significance of compromised nodes - a major adverse indicator for RCC survival, but I like the humour.

Not being a player, I'm not likely to play the OBOE but I see the fun in your pointing to the fact that not all are created equal!

 

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