Anal Cancer spread to the lung

dnola
dnola Member Posts: 6
edited November 2017 in Anal Cancer #1

Hi, everyone. I'm new to this forum. I'm very happy to find out that there are people out here posting about their experiences in Anal Cancer. I have been very worried for my husband and it's been driving me crazy knowing I can't do anything about his condition. 

 My husband got diagnosed with Stage 2 of Anal Cancer last July 2015.  After he got the chemotherapy and radiation, his PET Scan showed no tumor in the anal area. Around December 2016, they did another PET Scan and found out that the anal area was cleared but also found one tumor in his lung that is approximately the size of a nickel. His cancer metastasized to his lung. He had radiation and chemo (cisplatin and 5fu) right away but got admitted to the hospital on his first dose due to very bad side-effects. After he was hospitalized, his doctors have been giving him half of the dose of Cisplatin and no more radiation. The first scan showed that the tumor in his lung shrunk almost in half. Since he's been getting half of the Cisplatin his second, third and fourth scan remained the same, the tumor didn't grow but it didn't shrink. His doctors are glad that there were no other tumors showing up in the scan beside that one in his lung, but I feel bad seeing my husband getting this chemo every month and for how long. :(:( .  Is there anyone here that has experienced the same? Should we get a second opinion? and where? We live in New Orleans, Louisiana. 

I would really appreciate any opinion.. Thanks 

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    dnola

    Welcome to this site.  I'm sorry to hear about your husband's metastasis.  You asked about getting a second opinion, which I would highly recommend.  The place I would go first if I were in your/his position would be MD Anderson in Houston to see Dr. Catherine Eng.  IMO, she is the top specialist in the U.S. when it comes to anal cancer that has spread to other organs.  She has a lot of experience and I know a few people through other sites who are here today because of her expertise.  I had the pleasure of meeting her at a conference awhile back and she is totally committed to her work.  Please check into this.  I'm guessing here, but from your user name, I'm guessing you live in that region of the country, so going to Houston should not be a long journey.  If I'm wrong about your location, I apologize.  At any rate, please look at their website and see if it's possible to get an appointment with her.  I wish you all the very best and you and your husband seek answers.

  • z
    z Member Posts: 1,414 Member
    #3
    dnola

    Hello, I had anal cancer stage II and completed TX on 6-30-09, then upon a follow up scan in 2010 a 7 mm nodule was found in my lung.  The dr wanted to rescan in 3 months to see if it grew and it grew to 1.1cm so it had to come out.  I had vats surgery and my lower right lobe was removed.  When they biopsied the nodule it didn't have HPV in it like my anal cancer did.  With all that said it wasn't a metasis but a new primary.  I am ned to the writing of this email.

    How do they know its a metasis and not a new primary cancer dx.  I was a 35 year smoker and quit before I started tx for the anal cancer.  My theory and its just a theory is that my immune system couldn't protect my lungs while undergoing the chemo/radiation and plus the 35 years of smoking, caused me to have lung cancer.

    I think a second opinion is always a good idea.  I wish you and your husband well and keep us posted.  Lori

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited November 2017 #4
    dnola...

    Hi, Let me welcome you but also say that I am sorry for your need, yet, if there is a place for help, support, and advice, this is it! Like the others, I agree that a second opinion can not hurt and most doctors are on board with your desire to seek one, so don't let that stop you. 

    I was initially dx with Stage 3b anal cancer in 2011 and treated with 5FU / Cisplatin and radiation. Then in 2015 a mass the size of a peach was found on a follow-up scan in my lung as well. The biopsy showed it to be anal cancer mets. I had surgery to remove the left lower lobe of my lung that contained the mass (Thoracotomy) followed by the chemo drugs 5FU / Cisplatin once again. At one point I too had some negative side effects and my dose of Cisplatin was also lowered. I do not remember the exact scheduling of these drugs, but it seems it was every 3 weeks for 3-4 months. (It was different than the initial course I had received in 2011)

    Today I am doing well! I am scanned on a regular basis (I was treated for breast cancer as well one year after the first anal cancer) and I do have some minor but manageable side effects, but overall consider myself to be healthy!

    Please know that I will have both yourself and your husband in my thoughts and prayers for health as he moves forward.

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited November 2017 #5
    Second opinion

    Yes, please get a second opinion! And Dr Eng is nationally known for her expertise, I have run across her name more than once when reading articles about anal cancer.

  • dnola
    dnola Member Posts: 6
    #6
    mp327 said:

    dnola

    Welcome to this site.  I'm sorry to hear about your husband's metastasis.  You asked about getting a second opinion, which I would highly recommend.  The place I would go first if I were in your/his position would be MD Anderson in Houston to see Dr. Catherine Eng.  IMO, she is the top specialist in the U.S. when it comes to anal cancer that has spread to other organs.  She has a lot of experience and I know a few people through other sites who are here today because of her expertise.  I had the pleasure of meeting her at a conference awhile back and she is totally committed to her work.  Please check into this.  I'm guessing here, but from your user name, I'm guessing you live in that region of the country, so going to Houston should not be a long journey.  If I'm wrong about your location, I apologize.  At any rate, please look at their website and see if it's possible to get an appointment with her.  I wish you all the very best and you and your husband seek answers.

    Hi mp327

    Thank you so much for your response. I haven't been here for weeks. My husband just got his scan and they found a lesion on his right kidney and he is gonna get an ultrasound/scan to see if it's cancer :(:(  I will definitely check their website.  Thanks 

  • dnola
    dnola Member Posts: 6
    #7
    z said:

    dnola

    Hello, I had anal cancer stage II and completed TX on 6-30-09, then upon a follow up scan in 2010 a 7 mm nodule was found in my lung.  The dr wanted to rescan in 3 months to see if it grew and it grew to 1.1cm so it had to come out.  I had vats surgery and my lower right lobe was removed.  When they biopsied the nodule it didn't have HPV in it like my anal cancer did.  With all that said it wasn't a metasis but a new primary.  I am ned to the writing of this email.

    How do they know its a metasis and not a new primary cancer dx.  I was a 35 year smoker and quit before I started tx for the anal cancer.  My theory and its just a theory is that my immune system couldn't protect my lungs while undergoing the chemo/radiation and plus the 35 years of smoking, caused me to have lung cancer.

    I think a second opinion is always a good idea.  I wish you and your husband well and keep us posted.  Lori

     

    Hi, Lori..

    I think they biopsy the tumor in his lung and they said it was from anal cancer. I'm happy that you are now NED. It's weird that they never check if my husband has HPV or HIV. 

  • dnola
    dnola Member Posts: 6
    #8
    eihtak said:

    dnola...

    Hi, Let me welcome you but also say that I am sorry for your need, yet, if there is a place for help, support, and advice, this is it! Like the others, I agree that a second opinion can not hurt and most doctors are on board with your desire to seek one, so don't let that stop you. 

    I was initially dx with Stage 3b anal cancer in 2011 and treated with 5FU / Cisplatin and radiation. Then in 2015 a mass the size of a peach was found on a follow-up scan in my lung as well. The biopsy showed it to be anal cancer mets. I had surgery to remove the left lower lobe of my lung that contained the mass (Thoracotomy) followed by the chemo drugs 5FU / Cisplatin once again. At one point I too had some negative side effects and my dose of Cisplatin was also lowered. I do not remember the exact scheduling of these drugs, but it seems it was every 3 weeks for 3-4 months. (It was different than the initial course I had received in 2011)

    Today I am doing well! I am scanned on a regular basis (I was treated for breast cancer as well one year after the first anal cancer) and I do have some minor but manageable side effects, but overall consider myself to be healthy!

    Please know that I will have both yourself and your husband in my thoughts and prayers for health as he moves forward.

    katheryn

    Hi, Katheryn

    I wish they remove the nodule in his lung but the doctor said it would cause some complications and it was too small and the radiation and cisplatin should handle it. We just got his scan the other day and the tumor in his lung shrunk a little bit but they found a lesion in his right kidney and they are going to check it if it's cancer. I'm hoping not, but at this point I'm not really feeling very optimistic.  It's kinda weird, it seems like the chemo is working since the tumor in his lung is shrinking but now there is another one in his kidney. :( I'm very happy that you are doing well and I really appreciate your response.  Thank you so much...

  • dnola
    dnola Member Posts: 6
    #9
    Mollymaude said:

    Second opinion

    Yes, please get a second opinion! And Dr Eng is nationally known for her expertise, I have run across her name more than once when reading articles about anal cancer.

    Hi..

    Yes, I told my husband about MD Anderson. I mentioned to his doctor about MD Anderson and their research about Advanced Anal Cancer how it responds to immunotheraphy and he said that he knows Dr. Eng and he is gonna get in touch with her. Thank you so much..

  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    dnola

    I'm sorry to hear that your husband now has a lesion on his kidney.  I hope this does not turn out to be cancerous.  As you can see from some of the above comments, Dr. Eng is highly recommended at MD Anderson.  I'm glad to read your last comment and know that your husband's doctor is quite familiar with Dr. Eng.  I hope you can secure an appointment with her in the immediate future.  I wish your husband and you all the very best and hope you'll keep us posted.

  • z
    z Member Posts: 1,414 Member
    #11
    dnola said:

    Hi, Lori..

    I think they biopsy the tumor in his lung and they said it was from anal cancer. I'm happy that you are now NED. It's weird that they never check if my husband has HPV or HIV. 

    HPV

    HPV is a virus that is well know to cause several different types of cancer, anal and throat being 2 of the well known cancer.  I had HPV in the anal tumor but not the lung, thats why is wasn't a metasis.  80% of the population has HPV and our immune systems usually take care of it before it turns into a cancer.

    HIV is the AIDs virus and totally different than HPV.

    I hope that the lesion on your husbands kidneys is just inflammation and nothing else.  I wish you both well.  Lori

     

  • dnola
    dnola Member Posts: 6
    edited December 2017 #12
    mp327 said:

    dnola

    I'm sorry to hear that your husband now has a lesion on his kidney.  I hope this does not turn out to be cancerous.  As you can see from some of the above comments, Dr. Eng is highly recommended at MD Anderson.  I'm glad to read your last comment and know that your husband's doctor is quite familiar with Dr. Eng.  I hope you can secure an appointment with her in the immediate future.  I wish your husband and you all the very best and hope you'll keep us posted.

    Hi.

    Hi, I'm really hoping that it doesn't turned out to be cancerous, but the ultrasound result showed that it's solid. They are gonna do a lot of test next week. I will update you guys about the test.. Cry Frown I hope you are doing well. Thank you so much for responding to my message.

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