Aggressive Digital Papillary Adenocarcinoma

lootboy said:

sydney australia
i have just found out 4 weeks ago i have this cancer
lucky that it was picked up at the first search-as i thought i had a catus pin in my finger
and thought that is why i had the growth--i also had tests on my other hand but all was clear--also had a pet scan--and my lungs were clear-so i was advised to have my finger removed-so had that done last tuesday---so far have not had the new test to see if all removed---
****i am also booked in to see if i need kemo - i have not read if this has been done for a --just in case----as i really do not want to go down this track if i can get out of it--can any one help me out?????

My husband was diagnoised in early 2011; it was his left index finger that was affected.  He was referred to the Mayo Clinic and he was assigned a Doctor who only deals with the rare forms of cancer.  They did the CT scan and found lung nodules; however the Doctor felt it was probably nothing to be concerned about.  He said that about 30% of the population have them.  The Doctor also was not sure how to treat the cancer and after some research on my own found that this type of cancer does not really respond to chemo so the Doctor felt we would not do chemo and just monitor.  My husband had CT scans every 3 months for the first year; he is at 6 month intervals and while the lung nodules are still there, they have not grown in number or size.  We count him healed, even if everyone else does not until it has been 10 years.  I wish you the best of luck and may God Bless You.

I was diagnosed with this in December of 2010 at age 47.  I am a healthy, non-smoker with little family history of cancer.  The tumor was located on the side of my right ring finger adjacent to the nail. It had been there for about a year.  There was no pain and it appeared to me to be just a small cyst.  It was about a centimeter in size (the size of a small pea).  I had the tip of the finger amputated to the joint.  I had a CAT and bone scan and both reported no metastasis.  My Oncologist (Rush University-Chicago) told me there was no need for follow up or future scans.  That said, I have recently read an article in the Journal of Clinical Oncology regarding a case study where this primary tumor metastasized after 11 years (after amputation).  Scans showed it metastisized to 3 differnet areas including the lungs of a patient   The author recommended long term follow up with annual scans. 

My best guess is this was caused by some environmental contamination.  I was pretty worried about the amputation.  Turns out I hardly notice it.

Chrissy28 said:

I was diagnosed with this as well

in february I had a lump on my thumb knuckle removed. Dr thought it was benign. Pathology reports come back stating it's aggresive digital pappilary adenocarcinoma. I am 22 years old and was not expecting this especially being so rare. Right away I went for chest scans and hand mrI. I was sent to memorial Sloan Kettering where they did a wide excision to make sure surrounding tissue is clear and also a lymph node biopsy from armpit. Both came back clear but I am now afraid for my future. It's my thumb so I'm really afraid of amputation etc. It was never mentioned but I'm afraid it will come back. 

Now its very dangerous to apply make up products which is harmful for hole body. I wear one brand on my wedding day with my beautiful dress and it was in contacted with that plus size dress, from now that mark is placed there. The main problem of make up products they are fully used as a chemical product and it creates the skin problem in it.

my husband (age 50) was diagnosed with ADPA with Metastases to both lungs.  He started chemo right away.  Tumors are stable without growth or spreading.  We were told there are maybe 100 known cases worldwide.  Looking for more information!!!!  He was diagnosed February 2, 2016.

Hi there,

My husband (age 41) has just been diagnosed with ADPA on middle right finger. Saw oncologist today at SAN Sydney. He has read no research or case studies and doesn't seem interested in speaking with Dr's who have treated this. He has suggested excision, not amputation with no further treatment. He is doing a Lymph node extraction from armpit to check it hasn't spread and PET scans are currently clear. However, all medical journals and case studies I've read points towards amputating finger and possible chemo/and or radiation therapy. The statistics I've seen indicate lower reoccurance rates with this process. I want my husband to have the best chance of avoiding recurrent ADPA, especially due to the high rate of metastatis potential, which we all know is hard to treat with ADPA. We are seeking a second opinion.  I'd really appreciate names of Dr's and hospitals you received treatment from and other possible information of benefit. I hope all readers are winning their battle. 

I was diagnosed 6 years ago ... tip of left index finger.  I initally had an excision, but ultimately opted for follow-up amputation.  Based somewhat on the available literature at the time, but mostly the desire to take aggressive action.  Further out, it's easy to second guess.  I'm content with my decision, but sometimes do wonder if less aggressive WLE (wide local excision) might have been a viable option.  The amputated finger doesn't impact any daily activity - I've learned to type, etc - but I am somewhat sensitive to it (careful in photos, holding a coffee mug in public, etc).  Read the studies carefully ... some compare no further action to a lumped re-excision/amputation option.  I also believe there was a more recently published study on this topic (exicision vs amputation).  Ultimately, you have to do what you feel is best.