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Aggressive Papillary digital eccrine Adenocarcinoma, is the type of Cancer I have does anyone have any Experience with this?

gasp402's picture
gasp402
Posts: 4
Joined: Feb 2010

It was initially found in my "finger", three weeks later it was amputated.
Lymph node Biopsy at the same time. In my R axillary found ONE positive and Seven negative nodes. I just had a "power-port" placed - two days ago.
And I start Chemotherapy on Monday "5FU". 3-15-10.

So far no one has had enough dealing with this type of Cancer to give me any answers other then we are not sure.

I am looking for anyone who might have anything to add?

Any an all information appreciated.

Still not sure of the pump and treatments other then that Monday is my start date:)

Radiation therapy to follow so I am being told too.

Ok let me know if you know anything "please".

Thank You

Deltat210
Posts: 5
Joined: Apr 2010

Yup, I have had it for about 18 or so years, first diagnosed, removed, returned about 6 years later, radical resection of my left index finger, graft etc, then returned about 7-8 years later, same section, now schedule for left index finger to be amputated on 4/14/10, preop, everythings done except for a baseline catscan, (chest) on Monday. Have a guy in work, same thing, they removed his left second finger to the knuckle, same diagnosis.

Apparently, if you've had surgery before, such as I, two times, it is time for it to go, I was told that years ago that this might become a problem. My diagnosis this time was sent to the Mayo clinic in Florida and this was the recommendation...

Apparently yours has spread? I was told from my doctor that if it becomes aggressive, it will go to the lungs first, hence the cat scan on monday..

My doctor told me that it is rare, as did my co-worker and that 14 percent mestastize, if I spelled that correctly.. Ill find out on Monday if thats the case, and Im petrified about it..

marisayo
Posts: 1
Joined: May 2010

My husband has just been diagnosed with this same disease. Starting with a tumor on the end of his index finger. No one we have contacted has any experience with this. Most have never even heard of it. Can anyone give me any names of Dr's and cities we might find someone familiar with this? Thanks so much

Margo12
Posts: 29
Joined: Jun 2010

This is my situation too - first occurrence was in 2000, excised 2001. Second 2003 and excised same year. Reoccurred third time in about 2005 but after PET scan in 2004 showed innumerable nodules in both lungs. Attempted lung resection in 2007 and the right index finger amputated at the same time. The lung resection did not ultimately do much good so didn't do the other lung. Was on a Phase 1 clinical trial for one year at Mayo that ended June 2010. (a targeted oral chemo drug that caused minimal side effects) Did it help? Not really sure but I'm still here and feeling pretty okay. However nodules continue to grow, albeit slowly. Don't know what the next steps will be. Will appreciate any information from others about new/ novel treatments for this insidious cancer. I believe I am in good hands at Mayo but they have not treated a case of this that has advanced to Stage 4. There is no road map that they can give me or that I have read about (and I have read a lot). I would be very interested in the experience of others who may have been treated elsewhere. For any "newbies" diagnosed, I wouldn't hesitate to amputate the affected digit. Unfortunately, such advice did not come my way until too late.

Deltat210
Posts: 5
Joined: Apr 2010

Hi Margo, apparently the treatment for this when I first got it in 1993 was to have the tumor removed (excised). Now, the treatment is amputation, which I had done, with follow up cat scans every 6 months. My hand surgeon consulted with Mayo in Florida with the amputation advice given by Mayo.

NCSmplyRed
Posts: 3
Joined: Mar 2013

My 33 y/o son was just diagnosed with this. He will be seen at IU Simon Cancer Treatment Center on Tuesday March 19th. I have been searching online and one thing I have found that is that the Mayo Clinic in Florida comes up a lot in what I have found so far. 

 

NCSmplyRed
Posts: 3
Joined: Mar 2013

My 33 y/o son was just diagnosed with this. He will be seen at IU Simon Cancer Treatment Center on Tuesday March 19th. I have been searching online and one thing I have found that is that the Mayo Clinic in Florida comes up a lot in what I have found so far. 

 

Margo12
Posts: 29
Joined: Jun 2010

Dear Gasp - if you see this message, I am wondering how you are doing? I hope well. What result did you get from the chemo/ radiation. I continue to seek treatment options. Where are you being treated? Hope you can answer these questions.

dkw53
Posts: 21
Joined: May 2011

Hello to all who have posted on this website; any advice? My husband, 57yrs old was diagnoised with Digital Papillary Adenocarcinoma in April of this year. He had the nodule on his left index finger for at least the last couple of years. He recalls dropping a glass while doing dishes; when he was picking up the glass, a sliver went into his finger. He thought he got it out; however, every once in awhile he said he felt it and would try and get it out, to no avail. I heard somethimes an injury can bring this on. Anyway, the original surgeon who excised the growth and our primary doctor referred him to Dr. Murray, an orthopedic surgeon at the Mayo Clinic in Jacksonville, FL, as well as Dr. Attia, an Oncologist, also with Mayo Clinic. Both doctors have heard of this and have dealt with few cases. Dr. Murray is recommending amputation of my husband's left index finger. I read some of the post and a couple of post stood out; these individuals recommended amputation, too. They did not find anything on his lungs. The Oncologist, Dr. Attia said he would like to monitor him for a few years after the surgery. He advised if the lymph nodes come back positive, to have the chemo/radiation. If the lymph nodes are negative, then he did not recommend chemo/radiation. Anyone else out there who would also recommend the amputation? My husband is on the fence about this. His surgery is June 2nd. Thank you.

Margo12
Posts: 29
Joined: Jun 2010

As I said in another post, I think you are being well advised. Just by way of reassurance - a finger amputation (while it may sound difficult) is actually easily adjusted to in my own experience. It should give you peace of mind, particularly if the lymph nodes are clear. This cancer, once it spreads (as it did in my case) is exceedingly difficult to treat as there are no known, effective chemo agents. I just finished six rounds of carboplatin and paclitaxel - which did absolutely nothing. Back for another clinical trial as soon as my name comes up on the waiting list. First clinical trial also did not help. Best of luck,Margo

dkw53
Posts: 21
Joined: May 2011

Margo, Thank you for your advice. After I had informed my husband about the post in this site, he seemed to be leaning toward the amputation, until the Mayo Clinic called today asking what his decision was. He is back on the fence again, leaning toward keeping the finger. It is his finger and I cannot make the decision for him, but after reading other post, I would much rather have him than his finger. I hope and pray for your condition. Keep us posted. Thank you, again.

Margo12
Posts: 29
Joined: Jun 2010

Hi DKW - good to see your reply. You are quite right that only your husband can make this decision. I do know that it is hard to think about "voluntarily" losing a part of one's body, even a finger. One thing from my own experience that I would like to add: the first time this growth appeared it was removed by excision. It grew back within about a year. The surgeon excised it a second time. It grew back within about two years. By then it had metastasized. The third time, the finger was amputated back to the first knuckle, leaving about a one inch stub (my grandson refers to it as "shorty"). From all I have now read about ADPCa - they grow back quite commonly unless amputated and they metastasize in about 14% of cases. My own experience with excision vs. amputation is that the excisions were relatively more painful post-operatively than the amputation. I recovered very quickly from the amputation and was really quite surprised and pleased with how little it decreased hand function. I was especially concerned about typing/ computer use but discovered that it was no problem at all -I was very quickly typing with no decrease in speed/ accuracy in spite of losing one finger. I wish your husband (and you) speedy recovery and a good outcome from his treatment for this cancer. Hope you will post again as you are able.

dkw53
Posts: 21
Joined: May 2011

Margo, Thank you. I will show my husband this most recent post; maybe it will help him to decide. I will keep you posted as I hope you will keep us posted on your treatments and any new information you come across.

Margo12
Posts: 29
Joined: Jun 2010

Best wishes to both of you and do please keep us/ me posted on how it goes. Will be thinking of you. Margo

dkw53
Posts: 21
Joined: May 2011

Hello Margo; we went to the Mayo today for my husband's post op work up; after talking with his surgeon extensively he has opted for the ray amputation. On the day of surgery, they are going to do a biopsy of a lymph node under his left arm; hopefully this will be negative. If they see anything suspicious, they are going to remove all of his lymph nodes.

How have you been feeling? Did you ever speak with your oncologist about the new chemo drug that you discussed with another person on this site? If you do not mind my asking, what kind of work do you do or did you do prior to being diagnoised? My husband feels this was due to an injury and I read in some of the research I found that it could be caused from an injury. God Bless. dkw

dkw53
Posts: 21
Joined: May 2011

Hello Margo; we went to the Mayo today for my husband's post op work up; after talking with his surgeon extensively he has opted for the ray amputation. On the day of surgery, they are going to do a biopsy of a lymph node under his left arm; hopefully this will be negative. If they see anything suspicious, they are going to remove all of his lymph nodes.

How have you been feeling? Did you ever speak with your oncologist about the new chemo drug that you discussed with another person on this site? If you do not mind my asking, what kind of work do you do or did you do prior to being diagnoised? My husband feels this was due to an injury and I read in some of the research I found that it could be caused from an injury. God Bless. dkw

Margo12
Posts: 29
Joined: Jun 2010

Hello DKW - Best of luck to your husband with his surgery. Will hope that the lymph nodes are clear and that he makes a speedy recovery from this. In answer to your questions, I am now retired but worked as a social worker. I have never heard or read that there is or could be a relationship between an injury and this cancer. I do not recall ever having injury to my index finger. What I have read in a few papers is that there may be a possible connection with UV radiation and this cancer. Hope all goes well tomorrow.

dkw53
Posts: 21
Joined: May 2011

Hello Margo, I posted in another area of this site. My husband had his finger amputated last Thursday. The Lymph Node under his arm was negative. The cat scan showed some micro nodules in his lungs that they are not real concerned about at this time. They are going to do another cat scan in 3 months; if there is no change, they will not have to do another for at least 6 months. We go to have the dressing changed tomorrow. I will check in from time to time as I am able. Keep us updated with your progress. Best Wishes to you.

Margo12
Posts: 29
Joined: Jun 2010

Hi DKW - I did see your update of a few days ago and replied. I am glad to know that the outcome is good at this point. I hope your husband is having less pain as the days go by. I will continue to watch for future updates from you and from BEBS - will hope that you both move on from this rough patch with no future troubles. I'm doing ok at this point but not at all sure what next steps will be. Time will tell. Best to you, Margo

Putz273
Posts: 1
Joined: Jul 2011

My daughter was just told she had this same type of cancer discovered by a problem with an in grown toe nail. She is going to a oncologist Tuesday, July 5th. I want her to go straight to MD Anderson, Houston, Tx but I keep seeing others with this heading to Mayo in Florida. Does anyone have strong feelings about who the best is? Who has the best research in this type of cancer? I am scared for her and also mad, (not at her). My whole life I have had extreme luck. I jokingly call it the "Putz Factor". Jessica, my daughter has always been a strong person, aggressive, hard headed, opinionated, go figure. I guess she got that honestly. Can anyone tell me where is the best place for her?
Please put Jessica in your prayers, she just turned 30 in June and has worked hard for everything she has ever had or done. God bless you all.

Mitchell Putz

Margo12
Posts: 29
Joined: Jun 2010

Dear Mitchell - sorry to read of your daughter's diagnosis. Hopefully, this can be treated completely and she (and you) can get on with your lives. Re the "best place" - both Mayo Jacksonville and MD Anderson have experience from what I have learned from others on this site and elsewhere. I suppose it depends on where she lives and how easy or difficult it is to get to one or the other. Overall, I would say to seek out a major medical center, preferably one close to home. Where is she located? If this is the first occurrence of ADPA ( no prior excisions) - it is very likely that this will be completely treated and not re-occur. To the best of my knowledge, there is no place that has done extensive research on this rare cancer. If there is such a place, I would certainly like to know about it! Best of luck to your daughter and to you. Margo

BEBS
Posts: 16
Joined: May 2011

Hi Mitchell,

I am so sorry to hear about your daughter. I am 37 years old and was formally diagnosed with ADPA on May 25th following excision of a seemingly benign bump on my left index finger. As such, I have recently had to make many of the decisions now facing you and your daughter. While each person's plan will be different, I am happy to share my own path.

After researching for names of hospitals and doctors from discussions on this board, as well as what little literature is available for ADPA, it seemed to me that the initial treatment plan was quite similar, regardless of facility - wide excision or amputation of the finger or toe, a chest CT at minimum and sometimes other imaging, and increasingly more common also a sentinel lymph node biopsy.

Since we have 3 young children and no family close by, we chose to do this first stage of treatment locally, although our hand surgeon was able to consult with the surgeon at Sloan in NYC (we are in CT), who had seen 7 cases. We decided that if the outcome dictated further treatment, we would then seek guidance from a major cancer hospital. Fortunatley, the surgery and tests showed no evidence of spread, so the plan is now annual chest exams.

Again, this was only my approach and each person's needs will differ. However, if you do have ready access to a major cancer hospital such as MD Anderson, Mayo or Sloan, you might want to explore those alternatives - I've seen all mentioned on this board and all mentioned in literature or research on ADPA. Regardless of where you go, please pass along any new ideas or novel treatments suggestions you may receive for this rare disease.

I wish you and your daughter nothing but the best and will be thinking of you.

Warm regards,

BEBS

BEBS
Posts: 16
Joined: May 2011

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. 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!

Deltat210
Posts: 5
Joined: Apr 2010

Sorry for the delay in posting,

I met with a specialist about 6 months after my surgery (amputation) and the best I can say is that when I was diagnosed in about the 90's, the treatment was excision. Then, I had a radical excision with a graft. Now, the treatment is apparently amputation, right out of the gate, no ifs and or buts about it. I've been dealing with this for about 18 or so years, and so far, so good (fingers crossed)

I too had the left index finger amputated all the way to the hand, and have dealt with it. I have acclamated to using it the way it is with minimal problems. Sometimes I notice it during grasping for coins etc, picking up small objects, but no pain. Numbness a lot, feeling the finger, but I often tell myself, "Your gone, you *****).

Margo12
Posts: 29
Joined: Jun 2010

Hi Delta - it's good to see your update and to know that you are doing well.

Deltat210
Posts: 5
Joined: Apr 2010

Is there anything further on anyone on the board? Hope all is well with everyone..

paraworth
Posts: 1
Joined: Aug 2012

I was diagnosed with ADPA just over two years ago. I had surgery to remove a lump in my R thumb. The first diagnosis came back negative but within a month the lump was back with a vengeance. I was not really happy with the way the doctor handled the first operation and went back to him with the regrowth and said I was not in the position to pay for another operation. He said he would operate for free and remove it again. Two weeks later I had an email informing me I had cancer. I had no insurance and live in Germany. Money was limited. I went onto the net to find out as much as I could about the cancer. I learned that I had to build up my immunity so I changed my diet. My oncologist had me do a CT scan and recommended a hand specialist for re-excision of my thumb now for the 3rd time. I was amazed at the lack of knowledge about this cancer. I asked my hand surgeon if he knew about the cancer and he said no. I sent him as much info about the cancer as I could. On the day of the surgery I asked him if he had read the info I had sent and he said he did not have time for this. I was blown away by his attitude. Anyway I went ahead with the surgery. The result was that there was no cancer found. I have to say the post operative care was amazing as I went back weekly for 5 weeks and was treated very well. I have continued with my change of diet. I no longer eat any animal based food what so ever. I eat a basic vegan diet and eat a lot of raw fruit and veg. I only eat organic food. One of my friends said to me, either I spend the money on my food or I spend my money on my doctors. I went to my GP a few weeks ago because I felt it would be good for him to check my thumb. He did not even want to see me and let a junior intern feel the thumb. I was blown away by this and said that I felt their treatment was most unprofessional. I have grave doubts about how cancer is treated these days and wonder if we do not put to much faith in doctors and do not take on the the realities of diet and mind set. It has been two years since my first diagnosis. So far I am healthy. here is a link to some interesting scientific observations regarding diet. I hope it helps http://nutritionfacts.org/video/uprooting-the-leading-causes-of-death/

Alaska2304
Posts: 1
Joined: Oct 2012

Hi Folks,
Learned last week that my almost 50 yr old brother was dx'd with this and had his right middle fingertip amputated on Monday. Pathology came back today with not so good news. There were 20 cancer cells found in the biopsy of the lymph node that had metastasized from the adenocarcinoma. His ealrier MRI and CT scan were clear.

I just started web searching and found this discussion board...very helpful already.

Can anyone offer updated information that may apply in his case.

Many thanks.

JD

NCSmplyRed
Posts: 3
Joined: Mar 2013

I have been reading through some of these comments and some of them are two years old and I pray Each and Everyone is doing fine. Is there anyone here, that can update me with how you are doing? My son was diagnosed on Tuesday March 12 2013. He is going to the IU Simon Cancer Treatment Center on March 19th. I understand this is an excellant facility and since he has Medicade it is our only option as he lives one hour from Indianapolis Indiana and the center. The tumor was located on his right thumb and has been there since June of 2012. I realize that he will more then likely loose his thumb and have his lymph nodes tested. I am sure a PET scan or at least Chest x-rays will also be done.  I am praying very hard that we found out is has NOT metastisized and that it will be ok as their isn't a lot of information or treatment options available for this type of Cancer... Any input on your experiences, treatments, and progress would be greatly appreciated.  I am a mother of a 33 y/o son and I live 750 miles from him. 

My e-mail address is ncsmplyred@gmail.com

Facebook page is : https://www.facebook.com/CaroleMcNeelyWadsley

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