Would like your opinion

Jojo61 said:

Great input everyone! Many thanks!

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!!

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. 

Positive_Mental_Attitude said:

Interesting discussion.  I

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.

 

 

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. 

sblairc said:

Great site, just be mindful of the headings (stages)

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. 

 

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 said:

The site is hard to follow!

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!!

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. 

APny said:

I completely agree that for

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.

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.