The Empire Strikes Back.

Ouch_Ouch_Ouch
Ouch_Ouch_Ouch Member Posts: 508 Member
edited May 2018 in Anal Cancer #1

Greetings, everyone.

It seems that I come here only when I have problems. I regret that. However, today is no different.

On the 4th anniversary of my anal cancer diagnosis, I had a follow-up CT scan with a lymph node that the radiation oncologist thought should be further explored, "just to cover things". I had a full-body PET scan:

"Impression --- 

* ...large node in the abdomen [SUV of 23.14] highly suspicious for neoplasm. [suggests biopsy]

* ...hypermetabolic nodes in the mediastinum. [SUV 2.62 to 4.13; suggests dedicated chest CT scan]

* ...intense uptake left chest wall associated with pacemaker (I now have a pacemaker ^_^ ). [inspection is suggested - I hope scalpels aren't involved]

* ...marked improvement at the primary lesion...markedly decreased uptake...radiographic improvement of the intestine, as well as involution of previously seen abnormal nodes...diffuse bowel uptake elsewhere...may be physiologic or inflammatory. [correlate clinically]"

It's hard to believe. I was sick the first time around, with pain, bleeding, and fear. But right now, I feel absolutely fine. I think I should go to Memorial Sloan Kettering Cancer Center as my local oncologist has had only 6 anal cancer patients, but never had one with recurrence or distant metastisis. (I suppose it could be a whole new cancer, though. Jimney Crickets.)

>_<

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
    Ouch...

    Ouch is the word! Thats not the report anyone wants to hear!

    For what its worth, it was at my 4 year follow-up CT scan (almost to the date) that I was asked to return for further testing when it was determined that I had anal cancer mets to my lung. I too had felt great. It was winter and just the day before was shoveling snow and building a snowman with grandkids! I was in dis belief!

    Long story short, I had surgery to remove the left lobe of my lung that contained the mass (a size of a peach) followed by an aggressive course of chemo. That was over 3 years ago now and once again am feeling great.

    We are all different in dx and treatment as well as recovery and how our bodies respond, but know that you will surely be in my thoughts and prayers as you learn more and move forward.

    katheryn

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #3
    eihtak said:

    Ouch...

    Ouch is the word! Thats not the report anyone wants to hear!

    For what its worth, it was at my 4 year follow-up CT scan (almost to the date) that I was asked to return for further testing when it was determined that I had anal cancer mets to my lung. I too had felt great. It was winter and just the day before was shoveling snow and building a snowman with grandkids! I was in dis belief!

    Long story short, I had surgery to remove the left lobe of my lung that contained the mass (a size of a peach) followed by an aggressive course of chemo. That was over 3 years ago now and once again am feeling great.

    We are all different in dx and treatment as well as recovery and how our bodies respond, but know that you will surely be in my thoughts and prayers as you learn more and move forward.

    katheryn

    Thank you very much.

    I truly appreciate the empathy. And so fast, too! I thought that I was out of the woods by now. Just goes to show that we shouldn't hack our counts before they chicken!

    I feel odd, emotionally. I am half accepting and half in denial and half FREAKING OUT!!! You may recall that I have a severe needle phobia (as well as cancer phobia). I wonder if this means that I have a recurrence, too.

    I don't remember her name, but do you know what became of the woman from this message board who developed an anal cancer tumor on her leg? I believe she went to M. D. Andersen.

    Where did you go for treatment? 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited May 2018 #4
    Ouch_Ouch_Ouch said:

    Thank you very much.

    I truly appreciate the empathy. And so fast, too! I thought that I was out of the woods by now. Just goes to show that we shouldn't hack our counts before they chicken!

    I feel odd, emotionally. I am half accepting and half in denial and half FREAKING OUT!!! You may recall that I have a severe needle phobia (as well as cancer phobia). I wonder if this means that I have a recurrence, too.

    I don't remember her name, but do you know what became of the woman from this message board who developed an anal cancer tumor on her leg? I believe she went to M. D. Andersen.

    Where did you go for treatment? 

    Ouch...

    I do remember my head being in a cloud for a while myself, but try not to let it get to you until you know more. Did your doctor have an explanation or opinion for the report? I do remember the posts about the tumor on the leg but sorry not the name, maybe I can search a bit and find it. I was treated through Marshfield Clinic in Wisconsin and my doctor had a fair amount of experience with anal cancer. He also had no issues consulting with a specialist at Froedert Hospital in Milwaukee, Wi. Again...try not to waste healthy energy on "what if's" right now...and know Ill be thinking of you with positive vibes sent your way!

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    Ouch

    How distressing to hear your latest news on the recent CT scan.  I can understand why you are somewhat freaking out, as you stated.  I'm sure I would be too, especially if I was feeling fine like you are.  I agree with your statement about going to MSK (or there is always MDA too--Dr. Eng is one of the top doctors for treating AC recurrence/metastasis).  I do think finding a doctor who specializes in advanced AC is absolutely the right thing to do.  However, getting your local doctor involved to help you make the arrangements, wherever you go, may get you an earlier appointment.

    I really hate hearing this and my wish for you is that the ball gets rolling quickly for you to get in to a major cancer center that can sort all of this out.  I send good thoughts and wishes your way and hope you'll keep us posted. 

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #6
    mp327 said:

    Ouch

    How distressing to hear your latest news on the recent CT scan.  I can understand why you are somewhat freaking out, as you stated.  I'm sure I would be too, especially if I was feeling fine like you are.  I agree with your statement about going to MSK (or there is always MDA too--Dr. Eng is one of the top doctors for treating AC recurrence/metastasis).  I do think finding a doctor who specializes in advanced AC is absolutely the right thing to do.  However, getting your local doctor involved to help you make the arrangements, wherever you go, may get you an earlier appointment.

    I really hate hearing this and my wish for you is that the ball gets rolling quickly for you to get in to a major cancer center that can sort all of this out.  I send good thoughts and wishes your way and hope you'll keep us posted. 

    Appointment made.

    I just made an appointment with radiation oncologist Dr Wu at Memorial Sloan Kettering Cancer Center, one of the leaders of that clinical trial I wrote about the other day. June 5th, hurry up, baby! Maybe I'm pinning too much on it, but I do feel at more ease now.

    Thank you for your Dr Eng recommendation at M. D. Anderson, but MSKCC is only about 2 hours away from me. 

    Would you still see the local oncologist? I never really warmed up to her, but was stuck insurance-wise. (I have better insurance now.) Also, she has no experience with anal cancer recurrence or metasisis. I am only her 6th AC client over 25 years.

  • tanda
    tanda Member Posts: 174 Member
    edited May 2018 #7
    ouch ouch ouch

    Great that you were able to get an appt, so soon, at MSKCC!.  It looks like the trial is a trial with internal radiation for a recurrence, at the original site.  Your PET scan is noting spots in other areas which might suggest chemo or immunotherapy.  

    I would  try for a team approach...also meeting with a medical oncologist that apecializes in recurrences.  i'm sure that MSKCC and other large academic cancer centers might take your case to a tumour board. Perhaps Dr Wu could suggest colleagues that specialize in GI/Anal cancers.

  • pializ
    pializ Member Posts: 508 Member
    #8
    Ouch_Ouch_Ouch said:

    Thank you very much.

    I truly appreciate the empathy. And so fast, too! I thought that I was out of the woods by now. Just goes to show that we shouldn't hack our counts before they chicken!

    I feel odd, emotionally. I am half accepting and half in denial and half FREAKING OUT!!! You may recall that I have a severe needle phobia (as well as cancer phobia). I wonder if this means that I have a recurrence, too.

    I don't remember her name, but do you know what became of the woman from this message board who developed an anal cancer tumor on her leg? I believe she went to M. D. Andersen.

    Where did you go for treatment? 

    Tumour in leg

    The lady was Cazz. 

    Best wishes for the outcome of the Investigations. The waiting times are hard, so I hope they don't keep you waiting too long.

     

    Kind regards

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    Ouch_Ouch_Ouch said:

    Appointment made.

    I just made an appointment with radiation oncologist Dr Wu at Memorial Sloan Kettering Cancer Center, one of the leaders of that clinical trial I wrote about the other day. June 5th, hurry up, baby! Maybe I'm pinning too much on it, but I do feel at more ease now.

    Thank you for your Dr Eng recommendation at M. D. Anderson, but MSKCC is only about 2 hours away from me. 

    Would you still see the local oncologist? I never really warmed up to her, but was stuck insurance-wise. (I have better insurance now.) Also, she has no experience with anal cancer recurrence or metasisis. I am only her 6th AC client over 25 years.

    Ouch

    I'm glad you got an appointment at MSK.  As for whether or not to see the local oncologist, why don't you wait to see what Dr. Wu suggests?  Please don't totally count out Dr. Eng, should you not get answers at MSK.  However, it's a great facility, so I hope you do.

Discussion Boards