Follow up appointments and tests and new doctors - or maybe this should be two threads

pjjenkins
pjjenkins Member Posts: 173
edited March 2014 in Anal Cancer #1
Hi, all-

It is that time - the time to see if 2 years after the PET scan that showed NED (no evidence of disease), I still have NED.... Most of you know what this is like and you newbies will quite soon... know that nervousness before "they" look again.

Thanks to this board and what I think I remember my old medical oncologist saying, I can expect an annual CAT until 5 years have passed. Anyway, I received a call telling my when the appointment is and that there would be lab tests beforehand but no mention of PET or CAT. In fact the initial communication only mentioned the doctor appointment. So, I called and asked about tests before the appointment. That led to a phone message saying yes that labs were scheduled just before my meeting with the doc.

Well, I checked back here and reviewed the paper mentioned by Liz (lizdeli) www.ncbi.nlm.nih.gov/pmc/articles/PMC2630809/ and on www.nccn.org and decided I really should be having a pelvic CAT and so I called again. This afternoon "my" nurse called back and confirmed they are ordering one a few days before my appointment. I tell you, oncology nurses are the greatest!

I guess being in rural Maine means these guys don't really know anal cancer very well- or at least this new doctor, who is replacing my original one who moved on to NY (now why would he do that!?!) is not familiar with it.

Message here is we gotta be our own best advocates!

How may of us out here are more than 2 years past original diagnosis?

Priscilla

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Follow-ups
    Hi Priscilla--

    Let me be the first to agree with you that, yes, we must be our own advocates! I am 20 months out of treatment and am supposed to have a PET scan this month. I have not gotten a call to schedule the scan yet, so I picked up the phone today and called the hospital to ask them what is going on. I had to do this in January too, when I had my last scan. I feel like someone is dropping the ball here, either my oncologist's office or the hospital. Up until the last scan, I was always called 3 weeks or so ahead of time to schedule. So, my point is that sometimes we have to become that annoying person who will not be swept under the rug! It is in our best interest to know those NCCN guidelines and call our doctors on it when they do something not in the protocol. Sometimes they may have a good reason--to which we are entitled to an explanation and have every right to question. I wish you the very best of results with your upcoming scan and I hope that you and NED will be BFF! Please let us know.
  • z
    z Member Posts: 1,414 Member
    #3
    PET-CT
    Hi Priscilla,

    I just had my 3rd pet-ct today, my 1st was the diagnosis, 2nd one was 11-09 and now the 3rd 5-4-10. I have had 2 biopsys and several dres. My oncologist said I need a scan every 6 months initially, as he prefers the pet-ct over the pelvic ct to catch any mets to lung or liver. I of course am waiting for the results, and of course I am anxious. My onco says that this is an agressive cancer and the sooner you catch it if you have mets the better.

    Lori
  • lizdeli
    lizdeli Member Posts: 569 Member
    #4
    mp327 said:

    Follow-ups
    Hi Priscilla--

    Let me be the first to agree with you that, yes, we must be our own advocates! I am 20 months out of treatment and am supposed to have a PET scan this month. I have not gotten a call to schedule the scan yet, so I picked up the phone today and called the hospital to ask them what is going on. I had to do this in January too, when I had my last scan. I feel like someone is dropping the ball here, either my oncologist's office or the hospital. Up until the last scan, I was always called 3 weeks or so ahead of time to schedule. So, my point is that sometimes we have to become that annoying person who will not be swept under the rug! It is in our best interest to know those NCCN guidelines and call our doctors on it when they do something not in the protocol. Sometimes they may have a good reason--to which we are entitled to an explanation and have every right to question. I wish you the very best of results with your upcoming scan and I hope that you and NED will be BFF! Please let us know.

    Follow ups
    The good thing about MD Anderson is that they schedule all of my next appts as soon as I finish the current ones. Since I fly down to Houston every 3 months they coordinate everything - DRE, Bloodwork, CT and Radiologist follow up within a day of each other. I was there a couple of weeks ago for blood work and DRE and everything looked good. CT scan moved to August vs. June so it can be coordinated with other appts. I trust Dr. Eng, she knows what she is doing so I go with the flow.

    Noticing a lot of pain in my right thigh, hip and knee. i had foot surgery (right foot) two years ago and lost feeling in 3 toes on the foot so I'm sure the right side is not good to start with. (Walking incorrectly and not knowing it). Anyway it hurts during the day after walking for a while, When I wake up - no pain, I guess because the leg has rested. I know radiation has it's side affects and i think I am starting to experience it. Of course my mind went elsewhere but considering I had just had my check up it's nothing serious, although it's painful. A dull constant ache. I'm considering physical therapy or something. Oh well..if that is the price I pay to be NED I can live with it.

    Liz
  • lizdeli
    lizdeli Member Posts: 569 Member
    #5
    z said:

    PET-CT
    Hi Priscilla,

    I just had my 3rd pet-ct today, my 1st was the diagnosis, 2nd one was 11-09 and now the 3rd 5-4-10. I have had 2 biopsys and several dres. My oncologist said I need a scan every 6 months initially, as he prefers the pet-ct over the pelvic ct to catch any mets to lung or liver. I of course am waiting for the results, and of course I am anxious. My onco says that this is an agressive cancer and the sooner you catch it if you have mets the better.

    Lori

    Pet-CT
    Hi Lori
    I know how nervous we become while waiting for the test results. I could say don't worry, but I know from experience you will worry anyway - as I do. So, best advice keep busy to keep your mind off of it as much as possible. You've had great results so far. Recurrence is rare - though we know some of our board sisters have unfortunately gone through it. But it is not as common as other cancers, for which we are very, very fortunate.

    So I'll say a prayer for you tonight and anxiously await your joyful post telling us that your are NED.

    I get full body CTs as well. I'll be on the board full of anxiety by beginning of August if not a week sooner since my CT is on 8/10.

    Liz
  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    lizdeli said:

    Follow ups
    The good thing about MD Anderson is that they schedule all of my next appts as soon as I finish the current ones. Since I fly down to Houston every 3 months they coordinate everything - DRE, Bloodwork, CT and Radiologist follow up within a day of each other. I was there a couple of weeks ago for blood work and DRE and everything looked good. CT scan moved to August vs. June so it can be coordinated with other appts. I trust Dr. Eng, she knows what she is doing so I go with the flow.

    Noticing a lot of pain in my right thigh, hip and knee. i had foot surgery (right foot) two years ago and lost feeling in 3 toes on the foot so I'm sure the right side is not good to start with. (Walking incorrectly and not knowing it). Anyway it hurts during the day after walking for a while, When I wake up - no pain, I guess because the leg has rested. I know radiation has it's side affects and i think I am starting to experience it. Of course my mind went elsewhere but considering I had just had my check up it's nothing serious, although it's painful. A dull constant ache. I'm considering physical therapy or something. Oh well..if that is the price I pay to be NED I can live with it.

    Liz

    Leg pain
    Hi Liz--I'm sorry to hear that you are having some leg pain. As you already know, this is a common theme among anal cancer survivors who have undergone pelvic radiation. I dealt with the same thing. I am a big promotor of physical therapy, having worked in two separate facilities for about 13 total years. Also, I had a broken foot 5 years ago, with subsequent surgery to repair the fracture and fix my bunion. At that time, my podiatrist made some custom orthotics for me. These have saved me from so much pain! The point I am getting to is that if we are experiencing knee, hip or back pain after treatment, it might be a good idea to be evaluated for custom orthotics. I am very flat footed and before the orthotics, suffered with knee and back pain 24/7. It's so much better now. So perhaps not all of the pain we feel after treatment is solely attributable to the radiation. If we are not walking correctly, pain from radiation could be made worse. Just some thoughts!
  • SueRelays
    SueRelays Member Posts: 485
    #7
    mp327 said:

    Leg pain
    Hi Liz--I'm sorry to hear that you are having some leg pain. As you already know, this is a common theme among anal cancer survivors who have undergone pelvic radiation. I dealt with the same thing. I am a big promotor of physical therapy, having worked in two separate facilities for about 13 total years. Also, I had a broken foot 5 years ago, with subsequent surgery to repair the fracture and fix my bunion. At that time, my podiatrist made some custom orthotics for me. These have saved me from so much pain! The point I am getting to is that if we are experiencing knee, hip or back pain after treatment, it might be a good idea to be evaluated for custom orthotics. I am very flat footed and before the orthotics, suffered with knee and back pain 24/7. It's so much better now. So perhaps not all of the pain we feel after treatment is solely attributable to the radiation. If we are not walking correctly, pain from radiation could be made worse. Just some thoughts!

    I had terribly sore hips
    I had terribly sore hips from radiation! Couldn't sleep! Acupuncture worked for me!
    I have my scan in June...and they will be checking lung, liver, stomach, all areas cancer popped up on AFTER my anal cancer. I hate adding so many new places to check and worry about to the list! But at least I'm here!!! The worrying is unstoppable though! Maybe hypnosis would work :)~~~
  • winnipeg
    winnipeg Member Posts: 23
    #8
    SueRelays said:

    I had terribly sore hips
    I had terribly sore hips from radiation! Couldn't sleep! Acupuncture worked for me!
    I have my scan in June...and they will be checking lung, liver, stomach, all areas cancer popped up on AFTER my anal cancer. I hate adding so many new places to check and worry about to the list! But at least I'm here!!! The worrying is unstoppable though! Maybe hypnosis would work :)~~~

    Priscilla, you asked how
    Priscilla, you asked how many of us were two years out from our original diagnosis.

    I am regarded as NED after finding my tumor in 12/2007 and proper diagnosis in 1/2008.

    W

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