digital papillary cancer

Beckymarie
Beckymarie Member Posts: 357
edited March 2014 in Rare and Other Cancers #1
A friend was diagnosed with digital papillary cancer. He was told it was very rare and very aggressive. Also it did not respond to radiation or chemo. It started with a bump on his finger, but what little information I've read it appears to have something to do with the sweat glands. Does anyone have info on this type of cancer?
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Comments

  • Beckymarie
    Beckymarie Member Posts: 357
    #2
    digital papillary cancer
    Thought I'd try again...I am looking for any information on this very aggressive cancer. From what little info I have found, it is a cancer of the sweat glands, first appears as a growth on the fingers or toes, and does not respond to chemos or radiation. Any additional infor would be appreciated.
  • Margo12
    Margo12 Member Posts: 29
    #3
    Beckymarie said:

    digital papillary cancer
    Thought I'd try again...I am looking for any information on this very aggressive cancer. From what little info I have found, it is a cancer of the sweat glands, first appears as a growth on the fingers or toes, and does not respond to chemos or radiation. Any additional infor would be appreciated.

    Aggressive Digital Papillary Adenocarcinoma
    Hello Beckymarie - I just saw your post. I have this condition - it first occurred 10 years ago. Based on my own experience - amputating the affected digit, though it sounds awful, is certainly something to consider. The tumor tends to reoccur, even after excision and metastasizes "not infrequently". In my case, it did metastasize but that is a longer story than I want to go into right now. The best overall paper (IMHO) on this cancer is the one written by Duke, Sherrod and Lupton for the American Journal of Surgical Pathology in 2000. Just "google" Aggressive Digital Papillary Adenocarcinoma and this article should appear. If I may ask - where is your friend being treated and what is being recommended for him/her? With a cancer this rare, it can be hard to find a center or doctor who has experience treating it. If he/she has found such a place, I would be grateful to know who/where. Best of luck to your friend. Margo
  • Beckymarie
    Beckymarie Member Posts: 357
    #4
    Margo12 said:

    Aggressive Digital Papillary Adenocarcinoma
    Hello Beckymarie - I just saw your post. I have this condition - it first occurred 10 years ago. Based on my own experience - amputating the affected digit, though it sounds awful, is certainly something to consider. The tumor tends to reoccur, even after excision and metastasizes "not infrequently". In my case, it did metastasize but that is a longer story than I want to go into right now. The best overall paper (IMHO) on this cancer is the one written by Duke, Sherrod and Lupton for the American Journal of Surgical Pathology in 2000. Just "google" Aggressive Digital Papillary Adenocarcinoma and this article should appear. If I may ask - where is your friend being treated and what is being recommended for him/her? With a cancer this rare, it can be hard to find a center or doctor who has experience treating it. If he/she has found such a place, I would be grateful to know who/where. Best of luck to your friend. Margo

    Digital Papillary Cancer
    Hi Margo,

    My friend lives in Texas and there were only two hospitals that had an oncologist who had treated this type of cancer. I don't know what the name of the hospital but will find out. He had one surgery but is having another that will remove the bulk of the finger. There is also talk about possible lymph node involvement. Thank you for your reply and I will pass on any info I can get.
    Becky
  • Margo12
    Margo12 Member Posts: 29
    #5
    Beckymarie said:

    Digital Papillary Cancer
    Hi Margo,

    My friend lives in Texas and there were only two hospitals that had an oncologist who had treated this type of cancer. I don't know what the name of the hospital but will find out. He had one surgery but is having another that will remove the bulk of the finger. There is also talk about possible lymph node involvement. Thank you for your reply and I will pass on any info I can get.
    Becky

    Digital Papillary Cancer
    Dear Beckymarie - I'm glad to see your reply this morning and will appreciate knowing with whom/where your friend is being treated. I hope that he does not have lymph node involvement but glad to know they are checking. Please let him know that loss of a finger is ultimately not a big deal - and so much better than giving this cancer a chance to progress. I will "friend" you on this site and you can then send me a private email if you wish. Margo
  • Beckymarie
    Beckymarie Member Posts: 357
    #6
    Margo12 said:

    Digital Papillary Cancer
    Dear Beckymarie - I'm glad to see your reply this morning and will appreciate knowing with whom/where your friend is being treated. I hope that he does not have lymph node involvement but glad to know they are checking. Please let him know that loss of a finger is ultimately not a big deal - and so much better than giving this cancer a chance to progress. I will "friend" you on this site and you can then send me a private email if you wish. Margo

    Treated in Florida
    Margo,
    Just learned that my friend is being treated in Florida at Moffitt. I don't know if Moffitt is a hospital or clinic. He is having surgery on the 12th. Will keep you informed.
    Becky
  • Margo12
    Margo12 Member Posts: 29
    #7
    Beckymarie said:

    Treated in Florida
    Margo,
    Just learned that my friend is being treated in Florida at Moffitt. I don't know if Moffitt is a hospital or clinic. He is having surgery on the 12th. Will keep you informed.
    Becky

    Your friend
    Thanks for your reply Beckymarie. I will keep watching for updates. I am not familiar with Moffit but will try to check it out. I am awaiting more info from MD Anderson in Houston - I think they have had a few cases of this rare cancer and hope to learn more from them. Best of luck to your friend. Margo
  • Beckymarie
    Beckymarie Member Posts: 357
    #8
    Margo12 said:

    Your friend
    Thanks for your reply Beckymarie. I will keep watching for updates. I am not familiar with Moffit but will try to check it out. I am awaiting more info from MD Anderson in Houston - I think they have had a few cases of this rare cancer and hope to learn more from them. Best of luck to your friend. Margo

    I will pass on info as i
    I will pass on info as i receive it.
  • Beckymarie
    Beckymarie Member Posts: 357
    #9
    Margo12 said:

    Your friend
    Thanks for your reply Beckymarie. I will keep watching for updates. I am not familiar with Moffit but will try to check it out. I am awaiting more info from MD Anderson in Houston - I think they have had a few cases of this rare cancer and hope to learn more from them. Best of luck to your friend. Margo

    Update
    Margo,
    Wanted to update you. My friend had more aggressive surgery to the involved finger and several suspicious lymph nodes removed. He is waiting for the results of the lymph nodes which he will receive next week.
  • Beckymarie
    Beckymarie Member Posts: 357
    #10
    Margo12 said:

    Your friend
    Thanks for your reply Beckymarie. I will keep watching for updates. I am not familiar with Moffit but will try to check it out. I am awaiting more info from MD Anderson in Houston - I think they have had a few cases of this rare cancer and hope to learn more from them. Best of luck to your friend. Margo

    Update
    Margo,
    Wanted to update you. My friend had more aggressive surgery to the involved finger and several suspicious lymph nodes removed. He is waiting for the results of the lymph nodes which he will receive next week.
  • Margo12
    Margo12 Member Posts: 29
    #11
    Beckymarie said:

    Update
    Margo,
    Wanted to update you. My friend had more aggressive surgery to the involved finger and several suspicious lymph nodes removed. He is waiting for the results of the lymph nodes which he will receive next week.

    Your friend
    Thanks for the update - will hope that his nodes are clear and it's good to know that this is being carefully checked. Hope you will post again when there is more news to share. Hope your friend makes a full and speedy recovery. Margo
  • Beckymarie
    Beckymarie Member Posts: 357
    #12
    Margo12 said:

    Aggressive Digital Papillary Adenocarcinoma
    Hello Beckymarie - I just saw your post. I have this condition - it first occurred 10 years ago. Based on my own experience - amputating the affected digit, though it sounds awful, is certainly something to consider. The tumor tends to reoccur, even after excision and metastasizes "not infrequently". In my case, it did metastasize but that is a longer story than I want to go into right now. The best overall paper (IMHO) on this cancer is the one written by Duke, Sherrod and Lupton for the American Journal of Surgical Pathology in 2000. Just "google" Aggressive Digital Papillary Adenocarcinoma and this article should appear. If I may ask - where is your friend being treated and what is being recommended for him/her? With a cancer this rare, it can be hard to find a center or doctor who has experience treating it. If he/she has found such a place, I would be grateful to know who/where. Best of luck to your friend. Margo

    Follow Up
    Margo,
    Wanted to let you know that my friend had a second mor estensive surgery on his finger and pet scan. Fortunately, there was no sign of cancer in his lymph nodes and lung. He is being advised to go through a six week-five day a week radiation treatment. I thought that was odd because I thought I read that this type of cancer did not respond to radiation or chemo. So that is where he stands right now. How are you doing?
  • Margo12
    Margo12 Member Posts: 29
    #13
    Beckymarie said:

    Follow Up
    Margo,
    Wanted to let you know that my friend had a second mor estensive surgery on his finger and pet scan. Fortunately, there was no sign of cancer in his lymph nodes and lung. He is being advised to go through a six week-five day a week radiation treatment. I thought that was odd because I thought I read that this type of cancer did not respond to radiation or chemo. So that is where he stands right now. How are you doing?

    Follow up
    Hi Beckymarie - thanks for posting the update about your friend and I am very glad to hear about the good results of his scan. You are right that what (little) information is available about this rare cancer seems to suggest that neither radiation or chemo are effective. However, those few articles that mention this tend to be quite old (90's and earlier). I'm at a point where the lesions in my lungs, at least some of them, are growing to a point where more aggressive treatment is recommended. After much discussion with my local oncologist, my doctor at Mayo and a phone consult with MD Anderson in Houston - a decision to start chemo has been reached. Rather than another phase 1 clinical trial, I am going to receive carboplatin and pacliitaxel (carbo/taxol) starting later this month. This is the consensus of all three doctors. We will hope that I can tolerate 6 cycles, three weeks apart and will hope that the lesions stabilize or if very lucky, reduce in size. I'm nervous about this but hopeful too.
    Regarding your friend - what are they going to radiate?
  • Beckymarie
    Beckymarie Member Posts: 357
    #14
    Margo12 said:

    Follow up
    Hi Beckymarie - thanks for posting the update about your friend and I am very glad to hear about the good results of his scan. You are right that what (little) information is available about this rare cancer seems to suggest that neither radiation or chemo are effective. However, those few articles that mention this tend to be quite old (90's and earlier). I'm at a point where the lesions in my lungs, at least some of them, are growing to a point where more aggressive treatment is recommended. After much discussion with my local oncologist, my doctor at Mayo and a phone consult with MD Anderson in Houston - a decision to start chemo has been reached. Rather than another phase 1 clinical trial, I am going to receive carboplatin and pacliitaxel (carbo/taxol) starting later this month. This is the consensus of all three doctors. We will hope that I can tolerate 6 cycles, three weeks apart and will hope that the lesions stabilize or if very lucky, reduce in size. I'm nervous about this but hopeful too.
    Regarding your friend - what are they going to radiate?

    Radiation
    Good question. I'm not sure, I am guessing around the original site of the cancer which is his finger. I get my information through his mother so next time I talk with her I will ask her. Has there been any mention of Avastin to treat your lung lesions? My husband had brain cancer, a GBM, and was treated with Avastin which initially reduced his tumor by 50%. I think they are now trialing Avastin on other cancers. I wish you the very best and will keep in touch.
    Becky
  • Margo12
    Margo12 Member Posts: 29
    #15
    Beckymarie said:

    Radiation
    Good question. I'm not sure, I am guessing around the original site of the cancer which is his finger. I get my information through his mother so next time I talk with her I will ask her. Has there been any mention of Avastin to treat your lung lesions? My husband had brain cancer, a GBM, and was treated with Avastin which initially reduced his tumor by 50%. I think they are now trialing Avastin on other cancers. I wish you the very best and will keep in touch.
    Becky

    your reply
    Thanks for your good wishes and the suggestion of Avastin. I will ask my Dr. about this when I see her this week. Carbo/taxol seems to be the current consensus but who knows...
  • toochie
    toochie Member Posts: 5
    #16
    Margo12 said:

    your reply
    Thanks for your good wishes and the suggestion of Avastin. I will ask my Dr. about this when I see her this week. Carbo/taxol seems to be the current consensus but who knows...

    My husband was diagnosed
    My husband was diagnosed with this and we are going to Sloan Kettering in NY wedecided full amputation was better then risking it coming back. I wanted to know if anyone had a doc name at mayor Sloan. My grandpa wants us to get a second opinion from those hospitals, he often goes to mayo. I want to go to someone that treated this successfully. We still don't know if my husbands cancer matastisised just in the finger right now. It was misdiagnosed 2 years ago as a wart, they cut out a portion and it grew back, second biopsy showed the cancer. I am mire nervous then him, I am scared of it spreading
  • toochie
    toochie Member Posts: 5
    #17
    Margo12 said:

    your reply
    Thanks for your good wishes and the suggestion of Avastin. I will ask my Dr. about this when I see her this week. Carbo/taxol seems to be the current consensus but who knows...

    My husband was diagnosed
    My husband was diagnosed with this and we are going to Sloan Kettering in NY wedecided full amputation was better then risking it coming back. I wanted to know if anyone had a doc name at mayo or MD Anderson, My grandpa wants us to get a second opinion from those hospitals, he often goes to mayo. I want to go to someone that treated this successfully. We still don't know if my husbands cancer matastisised just in the finger right now. It was misdiagnosed 2 years ago as a wart, they cut out a portion and it grew back, second biopsy showed the cancer. I am mire nervous then him, I am scared of it spreading
  • BEBS
    BEBS Member Posts: 17
    #18
    toochie said:

    My husband was diagnosed
    My husband was diagnosed with this and we are going to Sloan Kettering in NY wedecided full amputation was better then risking it coming back. I wanted to know if anyone had a doc name at mayo or MD Anderson, My grandpa wants us to get a second opinion from those hospitals, he often goes to mayo. I want to go to someone that treated this successfully. We still don't know if my husbands cancer matastisised just in the finger right now. It was misdiagnosed 2 years ago as a wart, they cut out a portion and it grew back, second biopsy showed the cancer. I am mire nervous then him, I am scared of it spreading

    Just Diagnosed
    Hi Everyone,

    I am 37 and was just diagnosed officially on Wednesday, following excision of a lesion on my left index finger. Have not met yet with an oncologist (will likely end up at Sloan as well). However, based on my own research which I communicated to my surgeon, he is willing to do the amputation tomorrow (mentally, I just want this thing completely out of my body).

    Saying that, I see here that most seem to do the amputation and lymph nodes during the same surgery ... so, wondering if my need for speed is unecessarily result in 2 surgeys instead of one.

    I know it's unlikely I'll get a response from anyone in time, but if someone is on-line, would love your opinion.

    Thanks!
  • dkw53
    dkw53 Member Posts: 21
    #19
    BEBS said:

    Just Diagnosed
    Hi Everyone,

    I am 37 and was just diagnosed officially on Wednesday, following excision of a lesion on my left index finger. Have not met yet with an oncologist (will likely end up at Sloan as well). However, based on my own research which I communicated to my surgeon, he is willing to do the amputation tomorrow (mentally, I just want this thing completely out of my body).

    Saying that, I see here that most seem to do the amputation and lymph nodes during the same surgery ... so, wondering if my need for speed is unecessarily result in 2 surgeys instead of one.

    I know it's unlikely I'll get a response from anyone in time, but if someone is on-line, would love your opinion.

    Thanks!

    Amputation seems to be the current recommended
    BEBS, Sorry to hear about your diagnosis; I posted in another part of this website a response to your post. It seems the consensus from all information I have found and others, that amputation is the course of treatment. My husband was diagnosed in April and this is his surgeon's recommendation. His surgery is scheduled for June 2nd; however, he is still riding the fence as to take a chance and keep his finger. I have gotten him as much information so he can make an informed decision, but I would much rather have him than his finger. Good luck and keep us all updated.
  • dkw53
    dkw53 Member Posts: 21
    #20
    BEBS said:

    Just Diagnosed
    Hi Everyone,

    I am 37 and was just diagnosed officially on Wednesday, following excision of a lesion on my left index finger. Have not met yet with an oncologist (will likely end up at Sloan as well). However, based on my own research which I communicated to my surgeon, he is willing to do the amputation tomorrow (mentally, I just want this thing completely out of my body).

    Saying that, I see here that most seem to do the amputation and lymph nodes during the same surgery ... so, wondering if my need for speed is unecessarily result in 2 surgeys instead of one.

    I know it's unlikely I'll get a response from anyone in time, but if someone is on-line, would love your opinion.

    Thanks!

    Amputation seems to be the current recommended
    BEBS, Sorry to hear about your diagnosis; I posted in another part of this website a response to your post. It seems the consensus from all information I have found and others, that amputation is the course of treatment. My husband was diagnosed in April and this is his surgeon's recommendation. His surgery is scheduled for June 2nd; however, he is still riding the fence as to take a chance and keep his finger. I have gotten him as much information so he can make an informed decision, but I would much rather have him than his finger. Good luck and keep us all updated.
  • BEBS
    BEBS Member Posts: 17
    #21
    dkw53 said:

    Amputation seems to be the current recommended
    BEBS, Sorry to hear about your diagnosis; I posted in another part of this website a response to your post. It seems the consensus from all information I have found and others, that amputation is the course of treatment. My husband was diagnosed in April and this is his surgeon's recommendation. His surgery is scheduled for June 2nd; however, he is still riding the fence as to take a chance and keep his finger. I have gotten him as much information so he can make an informed decision, but I would much rather have him than his finger. Good luck and keep us all updated.

    Definitely doing amputation
    Hi dkw53,

    Thanks for your response. We've 100% decided on amputation - I know this is a very personal decision, but hope your husband comes to the same conclusion and things go well on June 2nd - I will be thining of you.

    On my side, I'm probably going to ask them to go further than the surgeon feels necessary just to be safe (he thinks taking off only to the first knuckle should be ok, but I'm considering a "ray's amputation") - I'm right handed, so for me it's not worth any risk to keep my left index finger. Where are they recommending your husband have the amputation? Where was the tumor?

    Still, we did decide to delay the surgery today, so we could do a sentinel lymph node biopsy at the same time (SLNB) - it seems this might not be effective after amputation, so need to schedule both at the same time. This was the recommendation once we finally spoke to the oncologist. I will let you know when this gets scheduled

    Since knowledge is spare, it's important to keep informed (our surgeon, who is wonderful, wasn't aware of the SLNB aspect. I will keep sharing and hope you do the same.

    Thanks,

    BEBS

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