Anal Cancer & nearby lymph nodes T3 N1

imherdaughter
imherdaughter Member Posts: 7
in Anal Cancer #1

hi there,

I found this great website and am wondering about some personal experience views. My mum was diagnosed with anal cancer a tumor growing in the sphincter muscle. as it only showed in a Pet scan as a small growth and nearby lymph nodes the medical team went with chemo and raditaion to try and shrink it, apparently this has a good success rate but in my mums case it didnt work whatso ever it didnt get worse or better so she had to have the full operation of a colostomy bag which is permanent, whilst having the surgery she had a hysterectomy and ovary removal. was very painful and alot of time to recover. the biopsy shows the stage of T3 N1 M1- it hasnt spread to other organs just the nearby lymph nodes so its strange they call it a M1. the type of cancer was squamous cell carcinoma.

the oncologist has put her on a stronger and more invasive chemo drug just to be safe and eliminate reoccurance, even though she has had the surgery and the PEt scan had no evidence of it elsewhere they like to treat it assuming its in the bloostream. basically we wont know anymore until the chemo treatment as finished and another pet scan to see if it pops up elsewhere, praying to god it doesnt leach anywhere else.

has any one had a similar case, its a great forum with real people experiences and would love if i got a reply with others in the same boat or know of someone with this, im in Australia and whilst is kinda not as common here i feel there isnt enough info, there isnt enough for clincal trials so you just haveto go with what the dr's know and sometimes you wonder, America seems to have alot of information.

like i said please respond would be highly thankful

Comments

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

    I am so sorry that your mother has this challenge to face, yet she is lucky to have a daughter like you for support. Cancer has many effects on the person being diagnosed (I was diagnosed with Stage3b anal cancer 5 1/2 years ago)....but the effects on family, friends, and others is often overlooked, so please feel welcome to come here with any questions or concerns and we will offer help.

    The staging can be confusing and although it may sound ridiculous, I can not right now remember what my initial staging was so will need to look that up. I do however believe that the "M" has only M0 or M1 as choices and while zero means no evidence of mets to other organs, M1 would typically make you think of spreading to liver, lung, or kidneys, but CAN also include the spread to lymph nodes in the abdomen, so I would guess that that is where that part of the staging comes from in this case.

    I was treated with permanent colostomy surgery as well and followed by chemo and radiation. I hope your mother is adjusting to all this, as I did go through a period of trial and error with different products and different foods before coming to a place of routine and mostly easy managment of the ostomy. At this point, it has little effect on my usual activities although I try to avoid certain foods that may cause some concerns.

    I am doing well and feel just great.....probably healthier than ever! Last year (so 4 years after the initial diagnosis) I did however have a recurrance of the anal cancer in my lung. I was able to have surgery to have that lobe removed and followed once again with chemo. Once healed, I was back again to my active life and have been since. Soon I will receive results of a recent follow-up scan but have no reason to assume a bad report at least based on how I feel!

    I will keep you both in my thoughts and prayers as you move forward in health.....please stay in touch.

    katheryn

    ps. The advice of Martha about a phone consult to Dr. Eng may bring you some peace of mind in understanding your options.

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2016 #3
    imherdaughter

    Welcome, although I'm sorry your Mom's cancer diagnosis has brought you here.  I was fortunate in that my cancer was localized to the anal tumor only, so I'm unable to reply as someone whose case was similar to your Mom's.  I am wondering if it's possible for your Mom's doctor(s) to do a phone consult with a doctor here in the United States to see what might be available to help her.  Dr. Catherine Eng at MD Anderson in Houston would be my first choice.  I don't know if she would be agreeable to that, but it would be worth a try.

    I wish your Mom all the very best.  Please keep us posted.

    Martha

  • imherdaughter
    imherdaughter Member Posts: 7
    edited July 2016 #4
    mp327 said:

    imherdaughter

    Welcome, although I'm sorry your Mom's cancer diagnosis has brought you here.  I was fortunate in that my cancer was localized to the anal tumor only, so I'm unable to reply as someone whose case was similar to your Mom's.  I am wondering if it's possible for your Mom's doctor(s) to do a phone consult with a doctor here in the United States to see what might be available to help her.  Dr. Catherine Eng at MD Anderson in Houston would be my first choice.  I don't know if she would be agreeable to that, but it would be worth a try.

    I wish your Mom all the very best.  Please keep us posted.

    Martha

    Thankyou for you reply, i

    Thankyou for you reply, i will look into this doctor. many thanks

  • imherdaughter
    imherdaughter Member Posts: 7
    edited July 2016 #5
    eihtak said:

    imherdaughter....

    I am so sorry that your mother has this challenge to face, yet she is lucky to have a daughter like you for support. Cancer has many effects on the person being diagnosed (I was diagnosed with Stage3b anal cancer 5 1/2 years ago)....but the effects on family, friends, and others is often overlooked, so please feel welcome to come here with any questions or concerns and we will offer help.

    The staging can be confusing and although it may sound ridiculous, I can not right now remember what my initial staging was so will need to look that up. I do however believe that the "M" has only M0 or M1 as choices and while zero means no evidence of mets to other organs, M1 would typically make you think of spreading to liver, lung, or kidneys, but CAN also include the spread to lymph nodes in the abdomen, so I would guess that that is where that part of the staging comes from in this case.

    I was treated with permanent colostomy surgery as well and followed by chemo and radiation. I hope your mother is adjusting to all this, as I did go through a period of trial and error with different products and different foods before coming to a place of routine and mostly easy managment of the ostomy. At this point, it has little effect on my usual activities although I try to avoid certain foods that may cause some concerns.

    I am doing well and feel just great.....probably healthier than ever! Last year (so 4 years after the initial diagnosis) I did however have a recurrance of the anal cancer in my lung. I was able to have surgery to have that lobe removed and followed once again with chemo. Once healed, I was back again to my active life and have been since. Soon I will receive results of a recent follow-up scan but have no reason to assume a bad report at least based on how I feel!

    I will keep you both in my thoughts and prayers as you move forward in health.....please stay in touch.

    katheryn

    ps. The advice of Martha about a phone consult to Dr. Eng may bring you some peace of mind in understanding your options.

    Thankyou Katheryn for your

    Thankyou Katheryn for your reply, much appreciated. sorry to hear you have been through this, and its great to hear how great you are feeling now. yes my mum adjusted to the bag easy as she said if thats what you have to do to survive then so be it, she is feeling great even with the chemo currently. i think if the odds of being healthy and eating well are there, then your doing everything right in fighting the cancer. can i ask what chemo drug they used on you? she is currently being treated with cisplatsin & something else i cant read dr hand scribble. but prior to surgery they tried the mitamycyn and that just kept it at bay, so the surgery was performed of full removal of bottom end, ovaries and uterus. did you have anything in your lymph nodes

  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
    imherdaughter said:

    Thankyou Katheryn for your

    Thankyou Katheryn for your reply, much appreciated. sorry to hear you have been through this, and its great to hear how great you are feeling now. yes my mum adjusted to the bag easy as she said if thats what you have to do to survive then so be it, she is feeling great even with the chemo currently. i think if the odds of being healthy and eating well are there, then your doing everything right in fighting the cancer. can i ask what chemo drug they used on you? she is currently being treated with cisplatsin & something else i cant read dr hand scribble. but prior to surgery they tried the mitamycyn and that just kept it at bay, so the surgery was performed of full removal of bottom end, ovaries and uterus. did you have anything in your lymph nodes

    Imherdaughter.....

    Hi, it is good to hear that your mother is adjusting so far. The final weeks did get difficult for me as my appetite plumeted and I could only eat a few bites at a time throughout the day during chemo. The chemo drug I was given was also Cisplatin along with 5FU. This is the drug I was initially given with radiation and then again for a little longer course to treat the recurrance in my lung last year, following that surgery. I think if I had forced myself to stay better hydrated it would have made a big difference, so do encourage her to sip fluids all day.

    I did have pelvic lymph node involvement as well, yes. I often wish I had asked about the benefit of having a hysterectomy at the time of my ostomy surgery, as my own mother passed away after being diagnosed with ovarion cancer 11 years ago. I have now been told that while physically I feel unaffected, my internal pelvic organs are somewhat fused together as a result of the radiation making that type of surgery high risk and very complicated. I try to convince myself that the amount of chemo and radiation I have received at this point was enough to keep that from being a concern down the road, but I do still wonder.

    It sounds like your mother is on the right track for getting through all this successfully!!

    Thinking of you both, be well.....................

    katheryn

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