Secondary brain tumour

LCR
LCR Member Posts: 11
in Anal Cancer #1

Hi, my mum was diagnosed with anal squamous cell cancer in August 2014, she had chemo/radiotherapy and was in remission June 2015. Start of June she had a seizure, MRI showed a mass in her brain, left frontal lobe. She had surgery at the end of June 2015 followed by whole brain radiotherapy in August 2015) to remove it and biopsy results showed it was a secondary tumour from the anal cancer. She has since had further seizures and recurrence of the tumour which was removed again in November 2015. Just wondering if anyone else has experienced this or knows of anyone who has?

Comments

  • pializ
    pializ Member Posts: 508 Member
    #2
    LCR

    I am so sorry that you find yourself here. From what I know, Sqamous Cell Carcinoma of the Anus is a relatively rare cancer (I finished my treatment just over 3 years ago for stage 3a). i don't know of any people on here since I 'joined up' where it has metastasize d to the brain. I have been looking at some studies where spread to the brain has been evidenced, but it seems to be a very rare complication of Anal Cancer. I am sorry that I can't be more helpful. Maybe another member will have more information.

    Best wishes

    Liz

  • LCR
    LCR Member Posts: 11
    #3
    pializ said:

    LCR

    I am so sorry that you find yourself here. From what I know, Sqamous Cell Carcinoma of the Anus is a relatively rare cancer (I finished my treatment just over 3 years ago for stage 3a). i don't know of any people on here since I 'joined up' where it has metastasize d to the brain. I have been looking at some studies where spread to the brain has been evidenced, but it seems to be a very rare complication of Anal Cancer. I am sorry that I can't be more helpful. Maybe another member will have more information.

    Best wishes

    Liz

    Hi Liz, thank you for taking

    Hi Liz, thank you for taking the time to reply. mums condition certainly does seem very rare, her surgeon and oncologist don't know much about it, seems to be quite difficult to find any information or people going through the same thing. I keep telling her this should be used as a case study!

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    LCR

    Welcome to this site, however, I'm sorry for the reason you are here.  I am at nearly 7 1/2 years survivor status and am trying to think of anyone I've communicated with in that time who has had anal cancer with mets to the brain.  At this time, I cannot recall anyone.  As you probably already know, anal cancer, in cases of metastases, usually travels to the lungs or liver and, in a few cases, to the bones.  Your mother's situation sounds quite rare to me.  Have you, your mother, or her doctors looked into getting her in to see Dr. Eng at MD Anderson in Houston?  Her specialty is treating metastatic disease and she has helped several people that I am in touch with.  Dr. Eng would be my first phone call if I was in the same situation.  Also, there may be clinical trials going on that would be worth checking in to on the National Institues of Health website.

    I'm sorry that I don't have more information for you.  Perhaps someone else on this site can add something that will be helpful to you.  I wish your mom all the very best and I hope you'll keep us posted on how things go for her.

    Martha 

  • nicotianna
    nicotianna Member Posts: 209
    #5
    Secondary brain tumor

    Hi - I am on another cancer web site.  There is another person who reported having an AC met to the brain.  I will share that contact info with you privately.  I believe this person is a 5-yr AC survivor & was treated with radiosurgery & is doing well.

    Nic

  • LCR
    LCR Member Posts: 11
    #6
    nicotianna said:

    Secondary brain tumor

    Hi - I am on another cancer web site.  There is another person who reported having an AC met to the brain.  I will share that contact info with you privately.  I believe this person is a 5-yr AC survivor & was treated with radiosurgery & is doing well.

    Nic

    thank you so much Nic, really

    thank you so much Nic, really appreciate it :)

  • LCR
    LCR Member Posts: 11
    #7
    mp327 said:

    LCR

    Welcome to this site, however, I'm sorry for the reason you are here.  I am at nearly 7 1/2 years survivor status and am trying to think of anyone I've communicated with in that time who has had anal cancer with mets to the brain.  At this time, I cannot recall anyone.  As you probably already know, anal cancer, in cases of metastases, usually travels to the lungs or liver and, in a few cases, to the bones.  Your mother's situation sounds quite rare to me.  Have you, your mother, or her doctors looked into getting her in to see Dr. Eng at MD Anderson in Houston?  Her specialty is treating metastatic disease and she has helped several people that I am in touch with.  Dr. Eng would be my first phone call if I was in the same situation.  Also, there may be clinical trials going on that would be worth checking in to on the National Institues of Health website.

    I'm sorry that I don't have more information for you.  Perhaps someone else on this site can add something that will be helpful to you.  I wish your mom all the very best and I hope you'll keep us posted on how things go for her.

    Martha 

    Mp327

    Hi Martha, unfortunately we live in Australia, if we were over there I'd definitely be getting in contact with Dr Eng, she sounds like exactly what we need! Have you had many long term side effects from your cancer?

  • lizdeli
    lizdeli Member Posts: 569 Member
    #8
    LCR said:

    thank you so much Nic, really

    thank you so much Nic, really appreciate it :)

    LCR

    i am very sorry that your Mom is experiencing all this. I was treated by Dr. Eng. she and  she and I discussed if anal Cancer could spread to the brain. I was experiencing what turned out to be a bad case of vertigo so I was concerned. She told me that it could spread to the brain but that it was very, very rare. I agree that if you can meet with Dr. Eng at MD Anerson it would worth the time. 

    My thoughts and prayers for healing and strength for your Mom. 

    Liz

  • lizdeli
    lizdeli Member Posts: 569 Member
    #9
    lizdeli said:

    LCR

    i am very sorry that your Mom is experiencing all this. I was treated by Dr. Eng. she and  she and I discussed if anal Cancer could spread to the brain. I was experiencing what turned out to be a bad case of vertigo so I was concerned. She told me that it could spread to the brain but that it was very, very rare. I agree that if you can meet with Dr. Eng at MD Anerson it would worth the time. 

    My thoughts and prayers for healing and strength for your Mom. 

    Liz

    LCR

    i just realized you were in Austraila. My apologies. Could you ask if your Mom's doctor might consider a phone consult with Dr. Eng?

    liz

  • LCR
    LCR Member Posts: 11
    #10
    lizdeli said:

    LCR

    i just realized you were in Austraila. My apologies. Could you ask if your Mom's doctor might consider a phone consult with Dr. Eng?

    liz

    Liz

    hi Liz, thank you for your thoughts, I will speak with mums doctor to see if it's possible to do a phone consult with Dr Eng, I think at this point anything is worth a try!

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    LCR said:

    Mp327

    Hi Martha, unfortunately we live in Australia, if we were over there I'd definitely be getting in contact with Dr Eng, she sounds like exactly what we need! Have you had many long term side effects from your cancer?

    LCR

    I read the additional comments on this thread this morning and I agree with Liz.  Please ask your mom's doctor about doing a phone consult with Dr. Eng at MDA. 

    As for your question to me regarding long-term side effects, I will certainly share info with you.  I received treatment in July to September 2008, so I am almost 7.5 years out of treatment.  I still have bowel issues at times, including diarrhea and sometimes extreme urgency.  I now have osteoporosis of my hips and spine, perhaps attributed to (or at least made worse by) the radiation.  In January 2013 I was admitted to the hospital for a bowel blockage in my small intestine, most likely due to adhesions caused by the radiation.  I also believe I have malabsorption syndrome, which means my intestines do not do a good job of absorbing the nutrients and fats from foods.  Despite that most of my bloodwork is always normal, I believe I'm somewhat malnourished and despite what or how much I eat, I do not gain weght.  In October 2015, I was diagnosed with chronic kidney disease, initially staged at stage 3.  However, my last tests showed improvement to stage 2 and with some changes in diet and increased water intake, the nephrologist feels that I can improve to stage 1.  Whether or not this was caused by my treatment, I do not know.  

    Since almost 7.5 years have passed since my treatment ended, I do believe that my bowel issues are chronic and will probably be with me the rest of my life.  However, with the use of Imodium on a daily basis, it's manageable.  My GI doctor told me that future bowel blockages are likely, but I am much more cautious about what I eat now--no raw fruits or veggies or beef--and hope that will be enough to avoid future episodes.

     

  • LCR
    LCR Member Posts: 11
    #12
    Thank you

    Hi all, thank you for your responses and suggestions, sorry for the late reply, things got a little crazy here. Mums brain tumour came back (third time), she was in surgery this morning for a more aggressive approach. I ended up emailing Dr Eng, she was super helpful and put me through to one of the neurosurgeons who was wonderful so thank you all for suggesting I contact her :)

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    LCR said:

    Thank you

    Hi all, thank you for your responses and suggestions, sorry for the late reply, things got a little crazy here. Mums brain tumour came back (third time), she was in surgery this morning for a more aggressive approach. I ended up emailing Dr Eng, she was super helpful and put me through to one of the neurosurgeons who was wonderful so thank you all for suggesting I contact her :)

    LCR

    I am sorry to hear that your mom had to have additional surgery because her tumor returned.  I hope it went well and I send my best wishes for her recovery.  I am so glad you contacted Dr. Eng and that she provided some good information to you.  I hope the neurosurgeon she suggested can help.  Please keep us updated.

    Martha

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