digital papillary cancer

dkw53 · October 2011

Margo12 said:
Greetings! so glad to see
Greetings! so glad to see your update. Your news is mostly encouraging but sorry about the slow recovery. I am awaiting results of genetic/ molecular testing to try to determine what may be the mutation(s) underlying this cancer and if, by a long shot, there is a targeted therapy that might be effective. Should know soon and if it's anything interesting, will post here again. Hope your husband continues to improve and gets relief from the arthritic pain. Stable is GOOD with the lung nodules - they may be quite unrelated to the ADPA and not cancer at all.
Best to you and your husband, Margo

How are you doing?
Margo12, How are you doing? I pray you are doing well and that your spirits are good. Please post an up date. See my post to BEBS.

geoff57 · October 2011

dkw53 said:
I am happy to hear you are doing well
BEBS, Glad to know you are doing well. We never heard anything on my husbands polyp, but assume it was negative. He has to go back to his surgeon Dec. 5th for check up. The PT Hand Specialist dropped his PT from 2 times a week to 1 time a week. She said that his hand is as well as it is going to get. He has a clicking in his hand and when he opens and closes it, it pops and causes him pain. This along with the arthritis has complicated the healing process and he may need more surgery to try and correct it. He has another ct scan in December or January. I believe the nodules in his lungs are nothing, but I am glad that the doctors want to monitor him.

Feeling all alone in England!!!
Hi, all Geoff here from Hampshire, England.I was diagnosed August 2011 with an unusual cancer? further tests showed it to be DPAC!!! Doctors in the UK have very little knowledge of this form of cancer!!!! Only been 6 cases in the UK mine now makes 7. It would seem its easily mis diagnosed here? On the site of my tumour (left hand middle finger) i had a cyst removed 8 years ago??? May have been mis diagnosed??????????? HOPE NOT !!! The NHS medical staff wanted to clear the area and graft over, thank god i insisted on the amputation! September 2011 finger tip was removed with no real problems.Lab results show 8mm of clear tissue in amputated finger tip , NO lynth biopsy to be carried out,scans or xrays to follow at this stage? Here in the UK there thoughts are to do no intrusive surgery or submit me to radiation ?? check up in 3months to check for lumps on arm?? then maybe a chest xray to give them a platform for lung condition for future reference, finding it all a bit strange that something so small and unassuming has the potential to take my life!! recovery has been quick with 5weeks off work (unpaid for most in the UK) back to work tomorrow. Although i think it will take a long time for my wife and myself to come to terms with this condition!! Hope you all understand my english cos this is English english .
Best of luck to you all and lets hope we all come out on top!!
Regards
Geoff

BEBS · November 2011

geoff57 said:
Feeling all alone in England!!!
Hi, all Geoff here from Hampshire, England.I was diagnosed August 2011 with an unusual cancer? further tests showed it to be DPAC!!! Doctors in the UK have very little knowledge of this form of cancer!!!! Only been 6 cases in the UK mine now makes 7. It would seem its easily mis diagnosed here? On the site of my tumour (left hand middle finger) i had a cyst removed 8 years ago??? May have been mis diagnosed??????????? HOPE NOT !!! The NHS medical staff wanted to clear the area and graft over, thank god i insisted on the amputation! September 2011 finger tip was removed with no real problems.Lab results show 8mm of clear tissue in amputated finger tip , NO lynth biopsy to be carried out,scans or xrays to follow at this stage? Here in the UK there thoughts are to do no intrusive surgery or submit me to radiation ?? check up in 3months to check for lumps on arm?? then maybe a chest xray to give them a platform for lung condition for future reference, finding it all a bit strange that something so small and unassuming has the potential to take my life!! recovery has been quick with 5weeks off work (unpaid for most in the UK) back to work tomorrow. Although i think it will take a long time for my wife and myself to come to terms with this condition!! Hope you all understand my english cos this is English english .
Best of luck to you all and lets hope we all come out on top!!
Regards
Geoff

Not Alone
Hi Geoff,

I am so sorry to hear of your diagnosis. While you may be alone in England, know that you are not alone in the world ... and this site brings us together.

I was diagnosed in May ... and like you, I still struggle to reconcile that something so small and unassuming could potentially take my life. Some days I believe everything is okay and other days I'm a bit in shock. When the latter happens, I take the quoted stats that ADPAca has around a 14% rate of metastisis and turn this aroud to read an 86% chance that it won't!

For me, I have at least used this disease as a reason to improve my overall health and do feel better than I have in many years ... and hope this has longer-term benefit.

Please stay positive and always feel free to write me directly. I wish you health and happiness going forward.

Warm regards,

BEBS

geoff57 · November 2011

BEBS said:
Not Alone
Hi Geoff,

I am so sorry to hear of your diagnosis. While you may be alone in England, know that you are not alone in the world ... and this site brings us together.

I was diagnosed in May ... and like you, I still struggle to reconcile that something so small and unassuming could potentially take my life. Some days I believe everything is okay and other days I'm a bit in shock. When the latter happens, I take the quoted stats that ADPAca has around a 14% rate of metastisis and turn this aroud to read an 86% chance that it won't!

For me, I have at least used this disease as a reason to improve my overall health and do feel better than I have in many years ... and hope this has longer-term benefit.

Please stay positive and always feel free to write me directly. I wish you health and happiness going forward.

Warm regards,

BEBS

Many thanks BEBS
Thank you for your kind reply, and yes 86% is really great!! Have hopefully moved on with my emotions to a degree,although it will remain forever in the back of my mind, that is only due to the fact that i have made contact with kind people such as yourself, now built up a picture of this cancer with the aid of USA sites such as the great one,as i stated in my post i did opt for amputation although my surgeon was against it ? having read what little info available i have no regrets on my decision to amputate.
My cancer was caught at stage one? so the medical team seem hopeful, I meet with them again in Jan 2012, i will request chest X rays as a precaution, and hope to have more info to show them the how this is monitored around the world.
Like yourself i intend to use this as an excuse to do the things i want to do, already making life changing decisions and getting a much easier life style in place for my wife and myself!
Live for today and sod tomorrow is my new motto, no point being the richest man in the grave yard (English humour) Wishing you all the very best, and again thank you for your kind reply.
Regards
Geoff

dkw53 · January 2012

geoff57 said:
Many thanks BEBS
Thank you for your kind reply, and yes 86% is really great!! Have hopefully moved on with my emotions to a degree,although it will remain forever in the back of my mind, that is only due to the fact that i have made contact with kind people such as yourself, now built up a picture of this cancer with the aid of USA sites such as the great one,as i stated in my post i did opt for amputation although my surgeon was against it ? having read what little info available i have no regrets on my decision to amputate.
My cancer was caught at stage one? so the medical team seem hopeful, I meet with them again in Jan 2012, i will request chest X rays as a precaution, and hope to have more info to show them the how this is monitored around the world.
Like yourself i intend to use this as an excuse to do the things i want to do, already making life changing decisions and getting a much easier life style in place for my wife and myself!
Live for today and sod tomorrow is my new motto, no point being the richest man in the grave yard (English humour) Wishing you all the very best, and again thank you for your kind reply.
Regards
Geoff

Hello BEBS & geoff57
We are still here. Glad to know you are doing well. I do not understand why some doctors are more cautious and others are not. The amputation was the best decision. If you have read all the other post, you know that MARGO did not have the amputation until the lump/tumor came back a 3rd time. That may have been the doctors and of course, there was so little known. I think it is wise that you at least get the ct scans every year. My husbands nodules still show no change so I agree, probably nothing related to the DPAC. We will continue the CT scans, but I think we will opt for every 6 months instead of every 3 or 4 months. Has anyone heard from MARGO? I have thought of him often and know that he is dealing with a lot. I pray that he is okay and I pray God will continue to bless each of us.

dkw53 · January 2012

Margo12 said:
Greetings! so glad to see
Greetings! so glad to see your update. Your news is mostly encouraging but sorry about the slow recovery. I am awaiting results of genetic/ molecular testing to try to determine what may be the mutation(s) underlying this cancer and if, by a long shot, there is a targeted therapy that might be effective. Should know soon and if it's anything interesting, will post here again. Hope your husband continues to improve and gets relief from the arthritic pain. Stable is GOOD with the lung nodules - they may be quite unrelated to the ADPA and not cancer at all.
Best to you and your husband, Margo

Margo12
I hope and pray that the doctors are able to help you more. As you will see my post to BEBS & Geoff57, you will know we are doing fine. Thank you for your prayers and thoughts.

dkw53 · January 2012

Margo12 said:
Greetings! so glad to see
Greetings! so glad to see your update. Your news is mostly encouraging but sorry about the slow recovery. I am awaiting results of genetic/ molecular testing to try to determine what may be the mutation(s) underlying this cancer and if, by a long shot, there is a targeted therapy that might be effective. Should know soon and if it's anything interesting, will post here again. Hope your husband continues to improve and gets relief from the arthritic pain. Stable is GOOD with the lung nodules - they may be quite unrelated to the ADPA and not cancer at all.
Best to you and your husband, Margo

Margo12
I hope and pray that the doctors are able to help you more. As you will see my post to BEBS & Geoff57, you will know we are doing fine. Thank you for your prayers and thoughts.

leeranger · July 2012

dkw53 said:
Hello BEBS & geoff57
We are still here. Glad to know you are doing well. I do not understand why some doctors are more cautious and others are not. The amputation was the best decision. If you have read all the other post, you know that MARGO did not have the amputation until the lump/tumor came back a 3rd time. That may have been the doctors and of course, there was so little known. I think it is wise that you at least get the ct scans every year. My husbands nodules still show no change so I agree, probably nothing related to the DPAC. We will continue the CT scans, but I think we will opt for every 6 months instead of every 3 or 4 months. Has anyone heard from MARGO? I have thought of him often and know that he is dealing with a lot. I pray that he is okay and I pray God will continue to bless each of us.

Hello!
Hello, I hope someone still checks this discussion! I found it on google while looking for info about sweat gland tumors. I have been diagnosed with low grade malignant acrospiroma, a rare tumor of the sweat gland. It started out as a bump under the surface of the skin on my right middle finger, and the docs thought it was a cyst. After having it removed, it was sent off to three different pathologists nationwide to get a diagnosis. One said it was benign, one said it was porocarcinoma, and the one we went with said acrospiroma.

Last week I had a wide excision of the finger and a sentinel node biopsy that resulted in the removal of 5 nodes from my arm pit. The nodes came back clear but the finger shows that the cancer is still present. My doctor has now advised that we amputate. I am so shocked that is has come to this! I am happy to read that although my diagnosis is a bit different, those of you who were amputated have had success. My doctor can't guarantee that I will be cancer free after this and I think that is the scariest part! I'd be happy to lose my finger if I get to keep my life, but unfortunately this cancer is so rare, no one can tell me much.

leeranger · July 2012

dkw53 said:
Hello BEBS & geoff57
We are still here. Glad to know you are doing well. I do not understand why some doctors are more cautious and others are not. The amputation was the best decision. If you have read all the other post, you know that MARGO did not have the amputation until the lump/tumor came back a 3rd time. That may have been the doctors and of course, there was so little known. I think it is wise that you at least get the ct scans every year. My husbands nodules still show no change so I agree, probably nothing related to the DPAC. We will continue the CT scans, but I think we will opt for every 6 months instead of every 3 or 4 months. Has anyone heard from MARGO? I have thought of him often and know that he is dealing with a lot. I pray that he is okay and I pray God will continue to bless each of us.

Hello!
Hello, I hope someone still checks this discussion! I found it on google while looking for info about sweat gland tumors. I have been diagnosed with low grade malignant acrospiroma, a rare tumor of the sweat gland. It started out as a bump under the surface of the skin on my right middle finger, and the docs thought it was a cyst. After having it removed, it was sent off to three different pathologists nationwide to get a diagnosis. One said it was benign, one said it was porocarcinoma, and the one we went with said acrospiroma.

Last week I had a wide excision of the finger and a sentinel node biopsy that resulted in the removal of 5 nodes from my arm pit. The nodes came back clear but the finger shows that the cancer is still present. My doctor has now advised that we amputate. I am so shocked that is has come to this! I am happy to read that although my diagnosis is a bit different, those of you who were amputated have had success. My doctor can't guarantee that I will be cancer free after this and I think that is the scariest part! I'd be happy to lose my finger if I get to keep my life, but unfortunately this cancer is so rare, no one can tell me much.

digital papillary cancer

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