Pet Scan Denial by Insurance - any post treatment experiences

hope this helps: MD anderson did   one pet scan before tx started....  then only ct scans after .......i am almost 4 years post and still get ct once per year.  plus prcoctoscopes and dre's......   apparently ct is good enough......sephie.

Hello friend!  Yes ... Eventually my insurance denied PET - CT.  There is no evidence to support PET as routine surveillance for Anal cancer post treatment.  CT will show any changes ... If something is seen on CT, a PET or MRI or SPECT can then be considered depending on the issue.  You will see varying approaches to post treatment surveillance For many on this site.

I had a PET - CT, DRE, and anoscope every 3 - 4 months for two years.  Now I have DRE, anoscope, labs and CT with contrast every six months.

Hang in there!   

Marynb said:

Scans
Scans are no longer part of recommended follow up for this cancer because of new studies that show the harm outweighs potential benefit. Scans are not harmless, and increase risk of cancer. The dre and anascope are what is recommended for routine follow up. I have had no follow up scans for this cancer, and I don't want any! Some hospitals are still using old guidelines, but are putting patients at risk by doing them. There are different guidelines for stage 3 and 4, and scans are then recommended because the risk of mets is greater, so harm is necessary.

MaryNB ... It sounds as though you've made an informed decision for yourself based on guidance from your physician, and that decision does not include scanning as part of your follow-up. I recognize this is not a decision made lightly ... and I respect your decision!

A bit about how I made my decision for those who are interested!! 

I elected to receive care at a Cancer Institute where they use a multi-diciplinary approach to cancer treatment and are firmly rooted in research.  The Colo-Rectal team I work with has designed an individualized follow-up care plan for me based on a thoughtful risk-benefit analysis (using past and current NCCN anal cancer "guidelines", the American College of Radiologist's "Image Gently Image Wisely recommendations", and their body of clinical experience and knowledge and other methods I don't have access to) that CT scanning is in my best interest.  This decision took into consideration the stage of the cancer and treatment provided (Combined Chemo-Radiation (IMRT) and doses provided), balanced against my risk of recurrence.  I also had input into my careplan and elect to follow their guidance and recommendations.  Fortunately, one of the panel members for the past and current NCCN guidelines is a department director at this Cancer Instiitute and some of their research used to develop the tools to treat anal cancer, which raises my confidence as to the planning, but in the end the decision is mine.  NOt to mention the Institute uses the most advanced CT technology available today.

Through my cancer experience I have learned (by reading and experiencing) ... Cancer care is complex and requires an entire team to plan "our" care based on current research.  NCCN guidelines are a "concensus" based on current evidence and are "guidelines" for our physicians to incorporate into care plans and decisions.  These guidelines are "recommendations" based on category 2A Evidence and Concensus (read the guideline and discuss with your team to fully understand that category of evidence).

Guidelines are just that "Guidelines".  I am not diminishing the value of the NCCN guidelines or any other clinical guideline, however,  there is no excluding the clinical and medical judgement of the physicians and experts who treat us, OR we could go to anyone who uses a "checklist" and our physicians and clinical care team would no longer be needed.  And care and treatment should always be individualized based on our unique clinical circumstances. 

Even the current guideline states, "any clinician seeking to apply the NCCN guideline is expected to use independent medical judgement in the context of individual clinical circumstances to determine any patient's care and treatment".

Everyone of us must participate in our care decision and inform ourselves as much as we can (that's why we're here on this board) and be able to ask questions of our care team and come to an informed decision about our care, treatment and services AND PARTICIPATE IN CARE DECISIONS.

So, here in our support circle, we will always see "individualized" careplans.  Empower yourself with knowledge, then discuss with the care team you TRUST.

All this said ... this is my opinion and experience shared in that it might help even one person on this board...which bring meaning to my more than two year, difficult cancer experience. 

  And as a note, all CT scanners are not the same in that newer scanners are designed to reduce exposure and are much more efficient. AND the technique and procedure protocols designed and used by the imaging centers are extremely important in reducing radiation exposure (make sure your imaging center follows current "image wisely" practices ... ask them!):

Check these sites out to understand more about imaging:

http://www.acr.org/

http://imagewisely.org/

http://www.news-line.com/onenews.lasso?-Search=Action&-token.profession=NL&-token.target=onenews&-Table=webinfo&-MaxRecords=50&-SkipRecords=0&-Database=newsline&-KeyValue=6703

NYinTX said:

SCANS AND CONSENSUS MEDICINE

I ran across this interesting article on cost of tests and insurnace company approvals at MDAnderson, where I received treatment:

http://www.time.com/time/magazine/article/0,9171,2136864,00.html#ixzz2Lk6nOS9h

My radiation oncologist at MDA doesnot support PET scans as they give false positives because they pick up inflammation; also no clinical evidence for usefulness, if in addition to CAT scans.  However, I was scheduled for a full body CAT scan 6 weeks after end of radiation March 18, which I have cancelled.....I can find no clinical evidence to support expposing myself to all that radiation 6 weeks at end of treatment. Oncologist muttered something about "getting baseline", which they already have from previous CAT before treatment start.....I think they are padding their pockets.......

I also found this nifty chart from the   American Nuclear Society -- http://www.ans.org/pi/resources/dosechart/docs/dosechart.pdf  on exposure - theoretically our bodies can only tolerate 1 CAT scan/yr......and as all anal cancer pts know by now, we are HPV carriers which can very nicely get activated again with radiation, so we can reactivate the anal cancer.....

If you elect not to have a post treatment scan, how willl you and your team know the treatment was successful?  Just curious?  Thanks for the info.

mp327 said:

7243

That would be a good question for your doctor(s).  I have had many more follow-up scans than most anal cancer survivors--why?  My med onc is a scan-man.  I get a lot of peace of mind from having the scans and knowing that my cancer is gone and has not returned.  However, the radiation exposure is a concern.  I am due for another scan in early June and it is going to be my last one--by my choice.

If a person has a post-treatment scan, timing is crucial.  My med onc wanted me scanned 6 weeks after my treatment ended.  However, my rad onc said we should wait 3 months because the PET scan would come back showing activity in the anal area, due to radiation still being present there, along with inflammation from the treatment.  My med onc won the argument and the scan was done, only to show activity.  I must say, that really upset me, as I thought my cancer was still there.  So my advice to anyone who is getting or requesting a post-treatment scan, make sure to wait at least 3 months.  I feel like mine was a waste of time, money, and exposed me to unneccesary radiation.

Please check out my latest topic on radiation exposure.  Also, if you are not familiar with the NCCN guidelines on follow-up, you can view them at www.NCCN.org.  You will have to register on the site first.

Hi Martha!  I really had the same follow up u did...same timeframe too.  My oncologist now has me on an every six month CT scan.  I was wondering specifically for our friend who elected to NOT have a post treatment scan?  The pre-treatment scan is a baseline to scan against to determine treatment effectiveness/success. (?).  I would think MD Anderson would like a base-line post treatment?

My best to everyone as you make choices about your care and what is best for you!

Thank u as always for all your research and dedication to this site and the people here!! Xo

mp327 said:

7253

I have a good friend who is a radiologist.  The one thing he told me about PET scans is that they are good and bad.  Good because they oftentimes will pick up something that does not show up on another type of scan, such as a CT.  Bad because they show everything--meaning inflammation, primarily, which can cause spots of activity on the scan.  These light-ups are often referred to as false positives and can sometimes lead to further unnecessary testing.  It's a catch-22 IMO.  Not getting scans means less radiation, obviously a good thing.  However, they do give a person peace of mind.  Honestly, I don't know the answer. 

Thank you for your kind words.  I'm all about providing any information I can--knowledge is power!

I'm at the two year post treatment Point.  My oncologist recommended another CT in 6 months.   If there is a mass seen anywhere,  a PET could be considered, however an MRI or other exam not using radiation could be considered Depending on the location or presentation on CT.  recently, I  had a questionable change on sacrum ... They did an MRI.  All was okay .... I feel comfortable having a CT as often as my oncologist suggests.  I know there are others who are not Comfortable with scans.  I understand the risks, however early detection of recurrence or metastasis out weighs the risk of CT for me.   

I outlined above in this string and your recent radiation exposure post the decision making process I used and followed ... I'll continue to work with my oncologist as I move along the follow up process.  I trust her judgement and the culture if the entire team at the cancer center I go For care.

i also had many PET - CTs in the early months after treatment.   My scans were always quite definitive with no inflammatory ambiguity...which was good.   No "lighting" up anywhere to include anal area.  They waited 12 weeks to do scan.