It's back

Shannabelle
Shannabelle Member Posts: 4
in Anal Cancer #1
My father was diagnosed with anal cancer (stage 1) in March of 2010. He rang the bell on radiation in July 2010. All of his scans were coming back good and his blood work has been good. In May of 2013 he started losing weight (from 8-20 lbs a month) he has gone from 310lbs to 188 lbs. We have been going to doctors and screaming about this for a year. Unrelated to cancer he is on amiodarone (anti arrhythmia medication) for Hypertrophic Cardiomyopathy. It is a very toxic drug and has caused many nasty symptoms since being started. He has had his dose reduced but his cardiologist does not think his heart is strong enough to be taken off long enough to start a new anti arrhythmia medication. Last year his surgeon did an abdominal CT with contrast ( he cannot have MRIs due to having an ICD) he noted a spot on my father's liver, but said it was nothing to worry about. In april my father saw his oncologist who has been increasingly worried about weight loss. He just inquired when my father would be following up with his surgeon. One week later he saw his surgeon who sent him for a CT with contrast of the chest, abdomen and pelvis and an EGD and colonoscopy. The CT was preformed a few days before the EGD and colonoscopy. Before being put under for the procedure is gastro doctor asked if he had been sent by his oncologist and if he had ever been told of a place on his liver. My dad said he wasn't sure. The doctor told him that if he had been told the place had changed greatly and he needed to see his oncologist. We had a week to freak out over this news before seeing the oncologist. Friday May 9th we saw his oncologist. He came into the room joking and asked my dad about his diarrhea. He had no clue why we were there. Once we told him he left the room to review scans. His entire demeanor changed when he came back in. He said it wasn't good news. There is a "place" on my dad's liver, the lymph nodes around his rectum are swollen and his adrenal gland is swollen. He was scheduling my dad for a PET scan and a biopsy on the liver. My sister lives out of town and his in the final stages of planning her wedding (June 14th). We asked him if this was something we could wait on results to tell her. He told us he wouldn't know the type or how far until tests had come back, but from his scans he was 99% sure it was cancer. He then told us it made no sense to him after 4 years. We unfortunately had to tell my sister over the phone. Yesterday he had his PET scan and tomorrow is the CT guided biopsy of the liver. His follow up is Monday 05/19. I'm not sure what to think. We saw his surgeon on Monday who was also blindsided by the scans and seemed very upset. Apparently all of my fathers liver levels and CEA tests have been normal. I guess i just need to know if anyone knows the treatment for a return of anal cancer. Does the chemo used affect the heart? I do not remember the name of the chemo used with his last treatment, but it was only 2 rounds to aid his radiation. He had a heart attack with both rounds even though it wasn't supposed to affect the heart. I'm so scared that they are not going to recommend treatment due to his heart. If anyone has any information or words of encouragement i would appreciate them. He also wants to put any treatments off until after june 14th and my sisters wedding for obvious reasons. I know this is probably disjointed and doesn't make much sense, but right now it is taking all of my energy to remain positive and upbeat. Thank you in advance.

Shannon

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #2
    Dear Shannon,

    I'm a 49 year old male after rectal cancer treatment. Your father's situation seems complicated, because of the heart condition. They can renove the liver spot if there is only 1 or two in the same area if they turn out to be cancer. The returning anal cancer can also be removed if no more radiation possible. He still have options, but you have to make sure that your doctors communicate better. Unfortunately, you are one of their many patients and you ave to be your own advocate.

    If you can you should also get 1 or 2 more opinions.

    Let us know the latest test results and I wish you the best luck.

    Laz

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    Shannon

    I'm very sorry to hear that your father's cancer appears to have recurred.  I hope the PET scan, along with the biopsy, will tell his doctors exactly what they are dealing with.  My best recommendation is, if at all possible, get an appointment for your father to see Dr. Eng at MD Anderson in Houston.  She is one of this country's leading experts in the treatment of anal cancer, both initially diagnosed cases and recurrences.  I really think this is the best option.  I am not a doctor, but I would think that putting off any treatment until after June 14th. would not be in his best interest, but I can certainly understand why he would want to do this. 

    I was treated for anal cancer in 2008 and have been active on 3 websites over the years.  I know of a few cases where anal cancer has metastasized to the liver and has been successfully treated.  As Laz said, if the liver tumors are few, then resection or radiation delivered internally (called stereotactic radiation), can be used.  If there are numerous tumors, then chemo would most likely be the treatment recommended.  One person I know received chemo consisting of Carboplatin, Taxol and Xeloda and so far, so good for her--and she was treated several years ago.  Her treatment was done after a study done by Dr. J.D. Hainsworth showed this chemo combo to be successful.  You may be able to find info on the internet about him.  The person I referred to above received her treatment at City of Hope in California and the doctor who was in charge of her treatment was Dr. William Stanton. 

    If going to Houston is out of the question, there are other cancer centers that may be within reach for your father, including Memorial Sloan Kettering in New York City, Fox Chase in Philadelphia, and University of California/San Francisco (UCSF).  UCSF treats many cases of anal cancer and the leading doctor there is Dr. Berry.  At MSK, I know Dr. Martin Weiser comes highly recommended.

    I wish your father all the best and hope you'll come back here to let us know what the tests show and what his doctors are recommending.  

    Martha 

  • Shannabelle
    Shannabelle Member Posts: 4
    #4
    mp327 said:

    Shannon

    I'm very sorry to hear that your father's cancer appears to have recurred.  I hope the PET scan, along with the biopsy, will tell his doctors exactly what they are dealing with.  My best recommendation is, if at all possible, get an appointment for your father to see Dr. Eng at MD Anderson in Houston.  She is one of this country's leading experts in the treatment of anal cancer, both initially diagnosed cases and recurrences.  I really think this is the best option.  I am not a doctor, but I would think that putting off any treatment until after June 14th. would not be in his best interest, but I can certainly understand why he would want to do this. 

    I was treated for anal cancer in 2008 and have been active on 3 websites over the years.  I know of a few cases where anal cancer has metastasized to the liver and has been successfully treated.  As Laz said, if the liver tumors are few, then resection or radiation delivered internally (called stereotactic radiation), can be used.  If there are numerous tumors, then chemo would most likely be the treatment recommended.  One person I know received chemo consisting of Carboplatin, Taxol and Xeloda and so far, so good for her--and she was treated several years ago.  Her treatment was done after a study done by Dr. J.D. Hainsworth showed this chemo combo to be successful.  You may be able to find info on the internet about him.  The person I referred to above received her treatment at City of Hope in California and the doctor who was in charge of her treatment was Dr. William Stanton. 

    If going to Houston is out of the question, there are other cancer centers that may be within reach for your father, including Memorial Sloan Kettering in New York City, Fox Chase in Philadelphia, and University of California/San Francisco (UCSF).  UCSF treats many cases of anal cancer and the leading doctor there is Dr. Berry.  At MSK, I know Dr. Martin Weiser comes highly recommended.

    I wish your father all the best and hope you'll come back here to let us know what the tests show and what his doctors are recommending.  

    Martha 

    Thank you both so much for

    Thank you both so much for the quick response.  I thought surgery was the way they went, but last time his surgeon jumped on the tumor by his sphincster. The only option he offered was placing a porta cath for any chemo since my dad's veins are so bad(they blew 5 trying to thread him for the PET scan).  I will be asking for copies of all of his reports on Monday.  We were a little bit in shock at his last appointment.  I'm not sure how it works making it out to Houston for treatment buy parents do not have the most money.  My mom is remaining at work now to keep my dad covered on insurance.  He is disabled and on Medicare.  We, of course, will do whatever we can for him.  We are in South Carolina and have heard good things about the cancer center in Atlanta and also there may be one in charleston.  Once I know what we are fighting I will start researching and contacting people.  I will definitely update y'all on what we hear Monday.  Heading to have the biopsy done now.  Please keep us in your thoughts or prayers and all of y'all are in mine.  Thanks again

    Shannon 

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    Shannabelle said:

    Thank you both so much for

    Thank you both so much for the quick response.  I thought surgery was the way they went, but last time his surgeon jumped on the tumor by his sphincster. The only option he offered was placing a porta cath for any chemo since my dad's veins are so bad(they blew 5 trying to thread him for the PET scan).  I will be asking for copies of all of his reports on Monday.  We were a little bit in shock at his last appointment.  I'm not sure how it works making it out to Houston for treatment buy parents do not have the most money.  My mom is remaining at work now to keep my dad covered on insurance.  He is disabled and on Medicare.  We, of course, will do whatever we can for him.  We are in South Carolina and have heard good things about the cancer center in Atlanta and also there may be one in charleston.  Once I know what we are fighting I will start researching and contacting people.  I will definitely update y'all on what we hear Monday.  Heading to have the biopsy done now.  Please keep us in your thoughts or prayers and all of y'all are in mine.  Thanks again

    Shannon 

    Shannon

    Your dad will be in my thoughts and prayers and I hope all will go well for him today.

    If you are referring to Cancer Treatment Centers of America, their facility in Newnan, Georgia just opened a few months ago.  I live in the north metro Atlanta area.  Newnan is located just to the southwest of Atlanta.  You can learn more about their facility online.  I know of someone who has received treatment there and they were quite impressed with the doctors and staff.

    Let us know how things turn out for your dad with the biopsy.

  • Shannabelle
    Shannabelle Member Posts: 4
    #6
    I have been putting off

    I have been putting off writing this.  I'm a little angry with myself because I should have been more prepared for this visit.  His liver biopsy results were: Metastaic poorly differentiated basaloid carcinoma silmilar to previous anal primary.  His doctor informed us this was stage 4 and could not be cured.  He would start him on chemo 5fu and cisplatin.  He said it would be used to shrink the tumor and possibly put him into remission.  I will be scheduling another appointment for all the questions I have.  I did not get a copy this time of his CT or PET scan results but i will obtain those as well  He did tell us that the cancer is only located in his liver.  He seems very shocked that this has happened after 4 years with no other signs of a reccurence.  He will have a porta cath placed tomorrow or wednesday and will start chemo a week after the surgery.  I'm in a very strange place right now.  Once I have researched some more I will make another appointment with his oncologist so we can ask more questions.  Thank y'all so much for the support you offer.  I will keep updating.

     

    Shannon

  • qv62
    qv62 Member Posts: 434 Member
    #7
    Shannabelle said:

    I have been putting off

    I have been putting off writing this.  I'm a little angry with myself because I should have been more prepared for this visit.  His liver biopsy results were: Metastaic poorly differentiated basaloid carcinoma silmilar to previous anal primary.  His doctor informed us this was stage 4 and could not be cured.  He would start him on chemo 5fu and cisplatin.  He said it would be used to shrink the tumor and possibly put him into remission.  I will be scheduling another appointment for all the questions I have.  I did not get a copy this time of his CT or PET scan results but i will obtain those as well  He did tell us that the cancer is only located in his liver.  He seems very shocked that this has happened after 4 years with no other signs of a reccurence.  He will have a porta cath placed tomorrow or wednesday and will start chemo a week after the surgery.  I'm in a very strange place right now.  Once I have researched some more I will make another appointment with his oncologist so we can ask more questions.  Thank y'all so much for the support you offer.  I will keep updating.

     

    Shannon

    Shannabelle

    Sending prayers and positive energy for you and your dad, I am sorry to hear that you are all going through this.

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    Shannabelle said:

    I have been putting off

    I have been putting off writing this.  I'm a little angry with myself because I should have been more prepared for this visit.  His liver biopsy results were: Metastaic poorly differentiated basaloid carcinoma silmilar to previous anal primary.  His doctor informed us this was stage 4 and could not be cured.  He would start him on chemo 5fu and cisplatin.  He said it would be used to shrink the tumor and possibly put him into remission.  I will be scheduling another appointment for all the questions I have.  I did not get a copy this time of his CT or PET scan results but i will obtain those as well  He did tell us that the cancer is only located in his liver.  He seems very shocked that this has happened after 4 years with no other signs of a reccurence.  He will have a porta cath placed tomorrow or wednesday and will start chemo a week after the surgery.  I'm in a very strange place right now.  Once I have researched some more I will make another appointment with his oncologist so we can ask more questions.  Thank y'all so much for the support you offer.  I will keep updating.

     

    Shannon

    Shannon

    I am so sorry to hear that the liver biopsy came back showing cancer.  I can certainly understand your disappointment and anger.  Please keep us posted on what the oncologist has to say.  

    As for his doctor's disbelief that the cancer has returned, I think this is just a reminder that, despite the best efforts of our healthcare team to "cure" our cancer, and our best efforts to take good care of ourselves post-treatment, cancer can have a mind of it's own.  This is why I will never refer to myself as "cured" of this disease.  

    I wish your dad and you all the best and will keep you both in my thoughts and prayers.   

  • jcruz
    jcruz Member Posts: 379 Member
    #9
    Shannabelle said:

    I have been putting off

    I have been putting off writing this.  I'm a little angry with myself because I should have been more prepared for this visit.  His liver biopsy results were: Metastaic poorly differentiated basaloid carcinoma silmilar to previous anal primary.  His doctor informed us this was stage 4 and could not be cured.  He would start him on chemo 5fu and cisplatin.  He said it would be used to shrink the tumor and possibly put him into remission.  I will be scheduling another appointment for all the questions I have.  I did not get a copy this time of his CT or PET scan results but i will obtain those as well  He did tell us that the cancer is only located in his liver.  He seems very shocked that this has happened after 4 years with no other signs of a reccurence.  He will have a porta cath placed tomorrow or wednesday and will start chemo a week after the surgery.  I'm in a very strange place right now.  Once I have researched some more I will make another appointment with his oncologist so we can ask more questions.  Thank y'all so much for the support you offer.  I will keep updating.

     

    Shannon

    Shannon

    I'm sorry to hear that your dad has had this recurrence.  It must be so hard to digest such bad news (for him and for all of your family)  He's lucky to have you for a daughter. 

    Thinking of you and your dad as you move forward,

    Janet

  • Shannabelle
    Shannabelle Member Posts: 4
    #10
    Thanks

    Thank you all for your kind words, thoughts and prayers.  We go tomorrow morning to have his port a cath placed.  While that is happening I will arrange an appointment for all of our questions to be answered.  Thank y'all again for the support.  My dad is handling this well as far as I can tell.  Other than the shock we are all suffering from.  My mom had a bad couple of weeks waiting for results, but seems to be in a better place now.  I think we are happy to have a goal to look forward to rather than waiting on news.  All of the thoughts and prayers are making it our way as well because other than this nasty disease things seem to just be falling into place.  Thank you for allowing me to ramble here.  Though I may not post on other topics you are all in my heart and prayers.  

    Shannon 

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