dazed and dumbfounded

don09

Hi everyone hope you all had a great holiday and all are doing well.  This forum is now my new home, I started posting here since being diagnosed with anal cancer last year. I completed treatment in Dec. and have been "somewhat" monitored for the disease.  I say somewhat because I have yet to recieve the Anoscopy exam. My Oncologist's RN who takes care of these issues post treatment referred me to a Gastrointerolgist for this exam.  I assumed being in the medical community and employed as an Oncology RN one would know what kind of Dr. to refer me given my diagnosis.

Perhaps this could be just as much my fault for not doing my own homework,  Perhaps I should of been more on top of things, but I assumed follow up care was just as critical as treatments, both deemed with same order of importance. Not knowing I saw this Gastrointerologist, only to be told by him that he was not the type of Dr. I needed for anal monitoring, that I needed a colorectal Dr.

This is the second incidence of concern I have encounted with this Oncology office.  I am not only contending with anal cancer monitoring but lung cancer monitoring as well. Although I am 7 Yrs. out from lung cancer I still am monitored yearly for this.  My Oncologist has yet to monitor me for this. No full lung CT-Scans have been ordered by her.  My "Pulmonary Dr," ordered only a "limited view" ctscan  due to uptake activity he spotted on a previous scan and wanted to rule out, which was stable.  Apparenly this is being accepted by my Oncologist as my Yearly monitoring for the lung cancer. This is concerning to me given my  history. My primary tumor was the upper right lobe. this was in 09. in 2010 I developed another tumor in the lower left lobe which was a new tumor, unrelated to the primary. A wedge resection was done for that. Since 2010 I have had no recurrance or new tumors which I'm thankful for but it doesnt mean it cant happen again, it would seem to me that only a "limited view" is not going to reveal the condition of the other lungs, but yet this is being accepted by my Oncologist as she has not ordered a full veiw. 

I know I must sound as a complainer and in many ways I am, I am just so frustrated and don't know what is the best way to approach this. If any of you have any helpful thoughts I am very eager to hear them, Please help

mp327

don09

It does sound to me like your doctor(s) are very lax in their follow-up protocols for both cancers.  That is very unfortunate and quite worrisome, I'm sure.  Since I do not know where you live and the availability of specialists in your area I wouldn't know how easy it would be for you to find new doctors--both an oncologist and a colorectal doctor.  Hopefully, there are doctors in your area who have more knowledge about follow-ups for both types of cancer.  If it were me, I would begin the search for new doctors.  As patients, we like to have full confidence in our physicians, but my experience with past issues over the years (not related to my cancer), there are some who have much more expertise than others.  I was very fortunate to have all good doctors when I was diagnosed and treated for anal cancer.  Just an FYI in case you live in the same area I do, I am located in the metro Atlanta area, and can get you some recommendations. 

Pat42

check nccn guidelines

don09,

   You can google these guidelines and get a copy of the 2016 version.  They change occasionally, the 2017 version may require you to get an account, although I'm pretty sure it's free. 2016 saw the guidelines for followup change for anoscopy.  Quoted directly from the 2016 version: "Anoscopy schedule changed from every 3-6 mo for 5 y to every 6-12 mo x 3 y." 

    My wife was diagnosed just about the time you were finishing treatment.  We felt all the doctors were great, but they did need reminding from time to time about symptoms, treatment phase, symptoms seen, when to get scans, etc.  I think a lot of these folks are just so busy, they loose track of which patient has which needs.  I was fortunately able to go with her to all her treatments, and personally had to go around with the rad oncologist twice.  I think he was an amazing doctor, but he was occasionally recommending stuff that wasn't in the treatment guidelines, and leaving out stuff that was.  Since he had shown them to us on our first appt, I innocently would ask if he could bring those up again on his computer for us to look at.  I wouldn't say anything else, but my wife has assured me for thirty years that I have a very good "I told you so" glare (usually she's not real appreciative of that).  

   If you've been with them this long, might be worth one more shot to tell them that you were reading through the NCCN guidelines, and saw that it was about time for an anoscopy.  Some people on the forum have had a hard time with this test, maybe that's the reason that they changed it from 3-6 mos to 6-12 mos, to give the area more time to heal.  For my wife it was less uncomfortable than the DRE, only took a minute or two. Two of the oncologists said that the DRE was actually the best test, if the doctor can't even feel anything, it's not likely that the anoscopy will show anything either.

    All of us that have been through this (even as the spouse of a patient) probably suffer from the follow up worry a lot.  But if your DREs have been good, and if you get an anoscopy in the next month or so, you're not outside the currently recommended followup interval.  

    I think everyone probably has some stories to tell about how their health team made a mistake or two along the way, hopefully most minor.  Ours was almost funny.  After nine months (in Sep) we went to the surgeon for the anoscopy.  He wanted to know why we didn't go to him when we were first diagnosed.  He actually told us that he should have been in charge of the team, even though the treatment didn't involve any surgery!  I said we were referred to a medical and radiation oncologist, who told us they weren't going to refer us to a surgeon (which was frankly fine with me).  I asked (again innocently), "What would you have done, since the treatment involved no surgery?"  The answer was "Hmm." I almost responded "Bill us for saying 'Hmm'?"

  I had to bite my tongue many times (not the wallflower caregiver, I'm afraid) during her treatment. But you do have to speak up sometimes, especially if you are anxious, and think they are leaving something out.

  I wish you the best!  Our chemo doctor said the anoscopy could be done by either a gastro or colorectal surgeon, so I think your nurse was right in general, but maybe not every gastro can do it.

Pat

tanda

PAT 42

Two of the oncologists said that the DRE was actually the best test, if the doctor can't even feel anything, it's not likely that the anoscopy will show anything either.

 

That is really interesting.  My CR  has been lax about anoscopys.  I was upset and made a point of telling the med onc and rad onc and also the resident who comes in before she does. At one visit the resident said something like what you stated...that the anoscopy wasn't that critical.  Hard to imagine that a dre on radiated skin would be so accurate.

Some women on Blogforacure have had a HRA(High resolution anoscopy) which is like a colposcopy.