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Would like your opinion

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

In one of the topics posted earlier, Sarah had mentioned that she re-reads her husband's pathology report often. So...I read mine again. There were some terms on there that I wasn't sure about so I googled them. Lymphovascular Invasion - present. From what I read, that is indicative of a higher chance of recurrence. The other item was hilar nodes present - which doesn't sound good either, from what I read.

I have read several articles and I find them a bit challenging to comprehend - for this tired menopausal brain.

I would love any input on this. I had posted after my last scan that the doctor wants to do an ultrasound instead of CT scan next time. I have that booked for April (but pushed for a CT scan once a year). Being only a year after my nephrectomy, this is making me more determined to have a CT scan every 6 months. I will call him in the new year to see if it can be changed.

If you have any knowledge about these - hymphovascular Invasion and Hilar nodes, please share.

Thanks!

Jojo

 

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

JoJo.  Based on your history you need to be under the care of an oncologist who is highly experienced with renal cancers.  Ultrasounds will not do.  And you should be CT-scanned every 3-4 months for the first two years after your nephrectomy.  Due to the large size of "Arnold" you are already at high risk - regardless of lymphovascular invasion or other anomalies.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am seeing a uro-oncologist....one of the best in the province! After the last scan (which also would have been an ultrasound had it not been for the lesion they saw on the liver and wanted to monitor) he said ultrasound from now on. When I questioned that he brought up the radiation exposure. He finally agreed to CT once a year. But after much discussion about that on here, I am not worried about the exposure very much at all. However since we have health coverage here, I think that every 6 months is the standard guideline in Canada.

I am calling to see if I can change it from ultrasound to CT scan.

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

I am sorry Jo-Jo.  I just can't see how any oncologist would preclude your getting a CT-scan regularly (every 6 months is OK) for the first two years after your nephrectomy.  Is there any provision for your getting a second opinion up there?

It is nice that he is worried about your being exposed to too much radiation.  Let's see - in about 15-20 years that radiation might result in a new blood cancer.  But in far less than 2 years you could be facing metastatic RCC that was not picked up by those ultrasounds.  That's not a trade off I would be willing to make.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

No broken record, Neil. Last time I was getting prepped for my CT scan I had a little chat with the nurse. She said that if it was her, she would insist on CT scans instead of ultrasounds as she would rather detect recurrence as soon as possible. I have never had a bone scan either. Is that also a standard, or is that only if there is pain in the bone?

I have to say learning about the Lymphovascular Invasion, I am much more concerned. The Hilar nodes, I am just confused about.

:)

 

Srashedb
Posts: 482
Joined: Dec 2013

Jojo, were the nodes examined during the nephrectomy? I agree that if the renal cancer left the kidney you should be followed at 3 month intervals and that ultrasounds are probably not the best tests.

Sarah

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Sarah,

Yes the nodes were examined during the nephrectomy.

There were 5 lymph nodes removed and were negative, but in the summary it said there were a few hilar nodes present. It also said that the carcinoma had spread into the renal sinus and was 0.2 cm away from gerotas and perinephric margins.

Is this something I should be worried about?

Thanks!

Srashedb
Posts: 482
Joined: Dec 2013

medical language is such a mystery; exactly, what is meant by hilar node being present? 

The renal vein, I believe, leads out of the kidney and my husband had this. I think that is how it got to his spine.

i know you are in Canada but it does seem that you need closer follow-up than an ultrasound 

as for a bone scan, I thought everyone got a baseline one.

Sarah

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Also, jojo, The part of the description about the renal sinus/peri margins you mention is essentially how they determined "Stage 3" in your particular, specific case. If you already knew and understood your Staging, then this information is really just more "details" and should not be cause for any additional worry for you, so to speak. Does that make sense? 

 

It does explain why you will need to demand 6 month ct scans and hammer those Canadian doctors until you get them!! (I'm from Nova Scotia originally, so I know you need to light a fire under those doctors sometimes)

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thanks for the info. I am trying not to worry, but being more informed is always good. Everyone here has given great input.

Where in Nova Scotia were you? When my parents first immigrated from Europe, they lived in Nova Scotia for a few years. They lived in Amherst. I have been to NS a few times and it is beautiful.

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

I think it may be common to do a bone scan as part of tests to establish a baseline prior to a nephrectomy.  This would just be insure there were no bone metastases.

However, unless there were some reason to suspect a bone met at some time later (usually due to a diffuse pain as you have mentioned) it is not standard to do a bone scan.

angec's picture
angec
Posts: 924
Joined: Mar 2012

I am with Neil on this. Not to scare you,but you should have full body pet/ct scans. They scan the bones and head as well.  With a tumor that size they should err on the side of caution.  Ultrasounds are just not going to cut it. I hope you are successful in getting the full body done, if not then definitely seek care somewhere else.  Especially if they saw a spot on your liver.  The hilar nodes are at the bottom of your lungs, were the noted on a sonogram or was it during surgery? Were they removed?  Are you on treatment currently for the liver spot?  How is that going?  Better to be safe than sorry.  Hugs!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I'm pretty sure Hilar Nodes refers to the location of the nodes. If your TNM staging on the report said that all nodes biopsied were negative  I probably wouldn't worry about the term "Hilar nodes"

Also, regarding the comment about the tumor being 0.2 from Gerota's Fascia: Coincedentally, this was in my husband's report as well. I was quite concerned initally. I asked his oncologist about this comment and he said it wasn't relevant. T4 (Stage 4) diagnosis of is when the tumor goes through to the G. Fascia even without metastatic evidence, so I figured they put that in the report narrative just to emphasise it was a "close call" so to speak. I just took the oncologist at his word and stopped worrying about that part, anyways!

a_oaklee
Posts: 526
Joined: Nov 2013

Hi Jojo,

I don't think you should worry about your report.  The margins were negative and all sampled lymph nodes were negative.  I do believe you need to have a CT and Not ultrasound for follow-up.  Definetly do your best to get a CT as follow-up screening.   

Best wishes, Annie

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thanks for your responses! I managed to find a follow up guideline for Canada and it did say CT scan every six months for 2 years (after the initial 3 month scan) and then once a year after that. Not ideal, but better than what I am getting. So I will arm myself with that information as an argument when I call to change my appointment from U/S to CT.

I have been trying to get some information on hilar nodes. They have something to do with the lungs. They only show up only 5% of the time in non-mets cases. I just wonder if the cancer was getting ready to move into the lungs. But I found no other information about the hilar nodes as far as what it is indicative of, if found in the kidney capsule. I won't worry about that.

However I am concerned about the Lymphovascular invasion. If I am correct in what I have read it increases your chances of recurrence quite a bit - all the more reason for CT scans, I know.

The spot on the liver, they are not concerned about. It did not change so they are sure it isn't mets.

Thanks again!

Jojo

a_oaklee
Posts: 526
Joined: Nov 2013

Dear Jojo,

I wish I knew the answer to your question about hilar nodes or lymphovascular invasion.  May I suggest posting your question to Smart Patients. 

Regarding your question about CT/PET scans, I can only answer with our experience.  My husband had severe back pain, so he had a CT/PET scan done as part of the initial tests being performed.  I think we are in the minority of having that done preoperatively.  We actually asked for that test because we wanted to know everything.  However, I think they would have done it anyway due to his symptoms.

You said that the guidelines in Canada are every six months......I would think that there would be different guidelines for different scenarios.  For instance, if they are following something (like your liver), or response to medications...is there a different guideline?  a different time frame?

 

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Jojo, being in the Canadian health care system is so different. With universal health care, how does one fight against established protocol? In any event. scans would be preferable.

Scottyb60
Posts: 2
Joined: Dec 2014

Dear Jojo

As you'll know in an ideal world our type of cancer is best confined to within the kidney. The easiest opportunity to escape from there is via the renal blood vessels or the lymph drainage vessels (lymphovasular system) which feed into the kidney lymph nodes. So in your case, while the cancer was found outside the kidney invading the lymphatic drainage vessels it was not found in their first port of call i.e your 5, examined renal lymph nodes = Big Plus.

The mention of the hilar lymph nodes confirms only that they were visable> I would only be concerned if they were being described as enlarged. So once again = Big Plus. The renal sinus is an area inside the kidney and therefore would have been removed at nephrectomy.

Monitoring is imperative. CT will give much better quality of information than ultrasound. Minimum frequency 12 monthly but more frequently if change is noted.

To give perspective:  In my case at surgery time, the cancer had spread into the renal artery but not the regional lymph nodes. I had my surgery 20 years ago! It took annual checks of ultrasound and radiography for 16 years before I was shown to have chest metastases! It is 5 years since my chest mets appeared and they have behaved pretty well, I only went on Sutent after the occurence of a more aggressive lesion in my sacrum 2.5 years ago. I'm on Pazopanib now which has worked well and has less side effects. I have contrast CT scans twice a year . So Far So Good ;-)  Best wishes from NZ

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thank you so much for your postings. It was all really helpful and somewhat reassuring.

I will post again and let everyone know how my quest goes for a CT scan!

It might be worth going to the States and paying for one! Oh Canada! Home of the free health care!! Undecided

Alexandra's picture
Alexandra
Posts: 1310
Joined: Jul 2012

CT scan radiation exposure marginally increasing the risk of future blood cancer is a valid argument... if you were a healthy 18-year-old. For a middle-aged cancer patient monitored for recurrence, the benefit of catching a met in time by far outweighs the risk.

In my experience there are no OHIP regulations precluding you from having regular CT scans as often as your doctor requisitions them. Every hospital has their own guidelines. When I was monitored at Sunnybrook, they were not doing CT scans at all. When I switched to Princess Margaret Hospital, they had routine CT scans every 3 months. While on the clinical trial for a year I have been getting chest and abdominal CT scans every 8 weeks, with and without contrast. And no, I don't glow in the dark yet.

If your ONC is dead-set against CT scans, get your family doctor or any random walk-in-clinic doctor to requisition one. Say that not having one causes you anxiety. Do them all at the same lab for consistency. Get imaging results uploaded into mychart.ca and hold on to the copy on the CD. Canadian hospitals don't communicate well, patients are generally asked to bring CD's with them when going for the second opinion.

To get a bone scan, you have to complain about some kind of back or joint pain to your GP. Being menopausal, you should also be getting annual bone density scans. While at it ask for regular mammograms / breast MRI too.

Canadian free heathcare is not all bad, you just have to take charge and know how to play it. Smile

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Happy New Year to you, too!

Thanks for the heads up on how to play the game. I have a mammogram booked (but not til April!?!)

I will definitely talk to my doc about the bone scans as well as the other scans.

Everyone here is a wealth of information.

Cheers to great health!

 

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

HI hope you had a Merry Christmas.  As for ultrasound versus ct scans  my tumor was small when they found it,yet just this year for my first yr check up the doc order u/s and said no to ct scan.  I am high risk cancer and when my onc found out i had u/s and not a scan, she called the university and spoke with my urologist and told him to do a scan this coming april or nothing at all. That u/s will not pick up cancer.She was very upset with him.  TOld him she would take over my scans!!  So I guess in april i better get a ct lol

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Interesting discussion.  I had a 2.9 cm removed in July, and I go for my first follow up tests this coming week.  To my surprise, I am getting a chest X-ray, ultrasound and renal function test (no CT scan for my 6 month follow up).  My doctor is a urologist-oncologist at Memorial Sloan Kettering in NYC, and I have utmost confidence in his decisions. Given the size of my mass and the very positive pathology report, ulstrasound should be OK, based on the guidelines below.  I am still going to ask him if and when I will get a CT scan as part of my follow up.

I looked at the guidelines from the American Urological Association found here, https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm    and it says:

 

The type of abdominal imaging utilized should be based on clinical factors and physician discretion keeping in mind the limitations of US over cross-sectional imaging with MRI or CT in visualizing a recurrence, the radiation exposures over time and the limitations based on contrast allergies or renal function. Please refer to the radiologic imaging benefits and risks section for additional details. Cross-sectional imaging seems prudent for the first postoperative baseline scan due to the higher accuracy and detail provided over ultrasound.

Radiologic Imaging Benefits and Risks. For follow-up of patients with treated or untreated renal carcinoma or patients with neoplasms suspected to represent renal carcinoma, radiologic imaging is a valuable tool and is, in fact, the mainstay of surveillance management of these patients. Radiologic imaging modalities that play an important role in detecting disease regression, progression, recurrence or metastasis include computed tomography (CT), magnetic resonance imaging (MRI), diagnostic ultrasound (US) and plain film chest x-ray (CXR). Positron emission tomography (PET) scanning with labeled antibody is under evaluation for imaging of renal carcinoma and may play a role in the future but is currently not standard or recommended diagnostic measure. CT and MRI are used both for detection and characterization of neoplasms suspected to represent renal carcinoma; advantages of these two higher-resolution imaging modalities include their noninvasive nature and superior diagnostic accuracy.

Despite the advantages of CT and MRI, the potential adverse effects and cost should also be kept in mind. Recent attention has been paid to the cumulative radiation exposure of the population attributable to the widespread and increasing use of CT scanning. Indeed, the use of CT has markedly increased in recent decades. It is estimated that more than 62 million CT scans are currently obtained each year in the United States, as compared with about 3 million in 1980.6 Much of the data confirming the carcinogenic potential of the relatively low dose (<100 mSv) radiation used for diagnostic imaging is extrapolated from analysis of mortality data of Japanese atomic bomb survivors exposed to intermediate (>100 mSv) radiation doses. An underlying assumption for these extrapolations is that the long term biological damage caused by ionizing radiation (essentially the cancer risk) is directly proportional to the dose regardless of how small the exposure (linear no-threshold (LNT) model).17 The LNT model is not accepted by all organizations involved in establishing national and international recommendations on radiation protection. Nevertheless, there is some indirect evidence linking exposure to low-level ionizing radiation at doses used in CT to subsequent development of cancer. The National Academy of Sciences' National Research Council comprehensive review of biological and epidemiological data related to health risks from exposure to ionizing radiation was published in 2006 as the Biological Effects of Ionizing Radiation (BEIR) VII Phase 2 report. Epidemiologic data in the report includes a study of populations who had received low doses of radiation, including populations who received exposures from diagnostic radiation. Doses received by individuals in whom an increased risk of cancer was documented were similar to doses associated with commonly used CT studies.18 Cancer risk decreases with lower dose, older age and male sex.19 The recent attention to radiation dose in CT scanning has had the beneficial effect of stimulating development of new scanner technologies and protocols that limit radiation dose without compromising diagnostic image quality. Initiatives to better educate patients, referring physicians, radiologic technologists and radiology residents on radiation safety and patient dose have begun.19-21 Although the true risk of cancer development from exposure to diagnostic radiation for a given individual from CT is not known, it is prudent to limit use of CT to those clinical indications in which the benefit is felt to outweigh the risk. In addition, risks related to administration of iodinated intravenous (IV) contrast for CT, including contrast hypersensitivity and contrast-induced renal failure, should also be kept in mind when considering the use of CT in the workup and follow-up of renal cancer. In designing follow-up imaging protocols for renal cancer, the Panel has kept these risks in mind.

Although US is an attractive modality for imaging renal masses owing to its less invasive nature and availability as compared to CT and MRI, the use of US as a tool for de novo detection of renal mass lesions is limited by its lower sensitivity, especially for detection of small mass lesions, lesions that are similar in echogenicity to the renal parenchyma, and lesions that do not deform the renal contour. The sensitivity of CT and ultrasonography for detection of lesions 3 cm and less is 94% and 79%, respectively.26 US can be useful in characterizing some indeterminate renal mass lesions seen on CT or MRI, such as atypical cystic lesions or solid hypovascular lesions.27 The role of US for monitoring the size of a known renal mass lesion, in order to demonstrate tumor growth during surveillance, appears promising. In a recent study of a group of patients who all underwent US evaluation of their renal mass as well as contemporary CT, MRI or both prior to treatment of the mass, as compared with MRI and CT, ultrasound measurements of tumor size were well correlated (P = .001 and P = .001).28 For detection of residual or recurrent disease in the remaining kidney after partial nephrectomy or tumor ablation, CT and MRI remain the mainstay imaging modalities, although the use of contrast-enhanced US (CUS) has been recently investigated after percutaneous cryoablation in a small series.29 CT or MRI is used for detection of recurrent tumor in the renal fossa following radical nephrectomy; US has not been demonstrated to play a significant role for this purpose.

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Everyone, please be aware that this web site quoted by Positive Mental is good but pay close attention to headings so you are reading based on YOUR SPECIFIC TUMOR stage and grade. I found the headings were a bit hard to follow.

The informaiton on this site is organized/sub divided based on the severity of the disease. Please follow the link here to make sure when you compare your diagnosis to the information presented above you are looking at the correct part DEPENDING ON YOUR TUMOR STAGE. See BELOW. Just making sure people see these headings since it can be confusing to read. 

http://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

Also, I disagree with the "CT or MRI" statement. This is discussed at length on other topics on this site. 

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

sblairc, thanks for clarifying.  Unfortunately, I cannot edit my post.  You are correc that my information is for Low risk patients (pT1, N0, Nx).

Also, Alexandra has some excellent suggestions.  Even though my doctor is top notch, I am going to question why I am not getting a CT scan (and when I will get one).  Also, some folks here have said that they have had recurrences 10 or more years after their initial diagnosis.  Since I have a complicated history with abdominal pain and digestive problems, after my 3 years of monitoring, I will go to my primary care doctor whenever I have any type of abdominal pain and ask the doctor to order a CT scan. 

Sorry about my misleading post.  I was trying to condense it down and left out the most important information.  There is a wealth of information in that link and on the American Urological Association Site.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

No worries, i just know the site is hard to follow if one doesn't pay attention to the blue headings and might miss important information as one big long site!!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I agree that in JoJo's case, a CT scan would be advisable.  We are all, one way or another, limited by what our doctors say or advise, or by what our health care system limit us to, unless we choose to get a second opinion or find ways to beat the system. 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

The above information states "it is prudent to limit use of CT to those clinical indications in which the benefit is felt to outweigh the risk" and if you read this website further taking into consideration the information Jojo provides in her bio, clearly the use of CT is clinically indicated in her case. Large tumor, T3 staging. 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I completely agree that for certain stage cancers CT scans benefits outweigh the risks and should be consicered. I'm T1a and my follow up at MSK is US, chest x-ray, and kidney function every six months. I too am comfortable with that and frankly wouldn't want to be radiated twice a year with CT scans. However, were I a stage 3 or perhaps even a stage 2, or had there been collecting duct or renal vein involvement, I would definitely want CT scans. So it really does depend on individual cases.

One thing about US; they are vastly improved from how they were in terms of ability to detect tumors and apparently provide excellent results, as indicated by the significant correlation between imaging on US and CT and MRI (study cited above). A statistical significance of .001 is very high. The scientific community accepts .05 and under as significant so that .001 is nothing to sneer at.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

APny-I am glad you wrote.  Did you discuss this with Dr. Rock Star?  Everything has been a blur for me, and I am looking forward to my follow up next week to ask questions about my plan for scans.  But I think you and I are in the same boat, and based on what you said, I will be doing ultrasound for the next 3 years.

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I didn't ask at my six month follow up but I have the one year follow up in March so will ask then. I don't think I'll feel comfortable stopping at three years, however. I will definintely discuss that part. I know that's the highest recurrance risk time frame but sadly there are people on here who were just fine at three years and then this little %$#@! sneaked back in. So I would feel much more secure with even yearly follow ups beyond the three years.

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