Aggressive Papillary digital eccrine Adenocarcinoma, is the type of Cancer I have does anyone have a

Deltat210

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. 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!

Hello all
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

Deltat210 said:

Hello all
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 ****).

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

Deltat210

Margo12 said:

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

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

paraworth

Deltat210 said:

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

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

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. 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!

Younger Brother just diagnosed
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

marisayo said:

Aggressive digital papillary adenocarcinoma
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

Mayo Clinic in Florida.

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

marisayo said:

Aggressive digital papillary adenocarcinoma
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

Mayo Clinic in Florida.

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

My Son

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

Cover1

ADPA

My husband was diagnosed with ADPA with Metastases to both lungs 8 months ago.  His oncologist started chemo right away.  Radiation is not an option, as studies show it causes thus cancer to grow.  After 8 months his cancer is stable with tumors not growing or spreading.  We would love to hear they have shrunk but are very happy they aren't growing and spreading.  looking for more

 

pajamo46

Digital Papillary Adenocarcinoma

I had a crush injury to the right ring finger, several years passed then the finger tip was amputatated to the first joint. My Ortho specialist told me it was something similar to a Ganglion but not too worry all was fine. If I only knew then what was to come. I had some further problems with the finger but just ingnored it as I was certain all was ok. Late last year, after 6 plus yrs had passed i brought the finger problem to my general docs attn, he had a look at the med files on his comp and tells me "oh yeah, thats carcinoma" Turns out they both let me slip thru the big gaps in the system. Path results from the first amputation picked up ADAC. Treatment was to be Scans 3 monthly and follow up for a minimum of 10 yrs. Treatment whick I never was told about or reffered for. End result has been further amputation of the finger to the 2nd joint, path showed the same cancer. Then a Pet CT Scan showed a larges lesion in the Right axillary Lymp node area. Sure enough after a full Axillary lymp clearance it was in one node, 16 nodes clear. This is such an insidious type of cancer and so rare that the Ocology teams I saw knew little about it. I have been informed that Chemo is not an option, and they suggested 35 sessions of Rad therapy, which I declined. Its a sad reflection on the medical society when people like myself are allowed to slip thru the gaps, especially with such a disease as ADPA. I have hope that it wont metastasize to the Lungs.

skippylove

Putz273 said:

Similair start
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

Hi Mitchell,

Hi Mitchell,

Firstly, can I just say I am hoping with every bone in my body your gorgeous daughter had a good outcome since your post in 2011. How di she get on?

I really hope you were blessed with a miracle. My husband has just been diagnosed with this cancer. I am trying to trace information on the following.

Year of treatment:

Name of Oncologist and Institute you were treated at:

Initial treatment:

Follow up:

Reoccurances:

I hope you don't mind me asking? Feeling desperate to find the right Dr for the job. I am also 100% going to be creating some kind of database for people to access in future so they don't have to work so hard hunting for answers when they are most needed. I'm wanting people to be able to find out patient experiences, hospitals and doctors who have some experience with this rare cancer.

Many thanks and my very best wishes

Helen Love

pajamo46

pajamo46 said:

Digital Papillary Adenocarcinoma

I had a crush injury to the right ring finger, several years passed then the finger tip was amputatated to the first joint. My Ortho specialist told me it was something similar to a Ganglion but not too worry all was fine. If I only knew then what was to come. I had some further problems with the finger but just ingnored it as I was certain all was ok. Late last year, after 6 plus yrs had passed i brought the finger problem to my general docs attn, he had a look at the med files on his comp and tells me "oh yeah, thats carcinoma" Turns out they both let me slip thru the big gaps in the system. Path results from the first amputation picked up ADAC. Treatment was to be Scans 3 monthly and follow up for a minimum of 10 yrs. Treatment whick I never was told about or reffered for. End result has been further amputation of the finger to the 2nd joint, path showed the same cancer. Then a Pet CT Scan showed a larges lesion in the Right axillary Lymp node area. Sure enough after a full Axillary lymp clearance it was in one node, 16 nodes clear. This is such an insidious type of cancer and so rare that the Ocology teams I saw knew little about it. I have been informed that Chemo is not an option, and they suggested 35 sessions of Rad therapy, which I declined. Its a sad reflection on the medical society when people like myself are allowed to slip thru the gaps, especially with such a disease as ADPA. I have hope that it wont metastasize to the Lungs.

Unfortunately for me the last

Unfortunately for me the last chest scan showed one of two small lung lesions has now trippled in size. I have also now discovered that these lesions were visual in scans dating back three plus years, and were missed by the Radiologists who checked the scans. They were only picked up by another specialist,( who was not a Radiologist ) last year, and all my scans were then panel reviewed.  I was informed that the lesions were visible in the earlier scans, but were difficult to detect. I was assured that if they had been detected 3 years ago it would not have been a consideration to treat. So now I find I have to see the oncologist who will decide on treatment. I read on this site and elsewhere that Chemo is not a recommended treatment, and

Radiotherapy may cause lung

 Lesions to multiply? Does anyone have information on surgical removal of small lung lesions, or of any treatment process for those lesions.

pajamo46

Surgery to remove Nodule

Underwent Wedge resection (Vats) 6 weeks ago to remove lung nodule, spending only 2 days recovery in hospital. I was amazed how pain free the post surgery period was. A few weeks ago had follow up with the consultant surgeon and it was confirmed the nodule (which had started to increase in size rapidly) was a 9cm  ADAP Metastatic nodule. So the follow up procedure is 6 Monthly CT scanning, no Chemo, no Radiation therapy. Just have to stay positive that the cancer will not return elsewhere.

LanesiaJ

pajamo46 said:

Digital Papillary Adenocarcinoma

I had a crush injury to the right ring finger, several years passed then the finger tip was amputatated to the first joint. My Ortho specialist told me it was something similar to a Ganglion but not too worry all was fine. If I only knew then what was to come. I had some further problems with the finger but just ingnored it as I was certain all was ok. Late last year, after 6 plus yrs had passed i brought the finger problem to my general docs attn, he had a look at the med files on his comp and tells me "oh yeah, thats carcinoma" Turns out they both let me slip thru the big gaps in the system. Path results from the first amputation picked up ADAC. Treatment was to be Scans 3 monthly and follow up for a minimum of 10 yrs. Treatment whick I never was told about or reffered for. End result has been further amputation of the finger to the 2nd joint, path showed the same cancer. Then a Pet CT Scan showed a larges lesion in the Right axillary Lymp node area. Sure enough after a full Axillary lymp clearance it was in one node, 16 nodes clear. This is such an insidious type of cancer and so rare that the Ocology teams I saw knew little about it. I have been informed that Chemo is not an option, and they suggested 35 sessions of Rad therapy, which I declined. Its a sad reflection on the medical society when people like myself are allowed to slip thru the gaps, especially with such a disease as ADPA. I have hope that it wont metastasize to the Lungs.

Where was your surgery done? What drs are familiar?

Hi Pajama46.  What hospitals have you found that weew the best dealing with cancer?  Where do you go?

 

Thanks,

 

Lanesia