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digital papillary cancer

Beckymarie
Posts: 358
Joined: Aug 2009

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?

Beckymarie
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 358
Joined: Aug 2009

I will pass on info as i receive it.

Beckymarie
Posts: 358
Joined: Aug 2009

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
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 358
Joined: Aug 2009

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
Posts: 29
Joined: Jun 2010

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
Posts: 5
Joined: Feb 2011

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
Posts: 5
Joined: Feb 2011

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
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 (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
Posts: 21
Joined: May 2011

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
Posts: 21
Joined: May 2011

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
Posts: 16
Joined: May 2011

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

dkw53
Posts: 21
Joined: May 2011

Hello again BEBS; my husband went to the Mayo Clinic today for his preop work up. After talking to his surgeon more extensively, he has now opted for the ray amputation. He is right handed and this is his left index finger. The nodule that came up on his finger was to the left side of the first knucle nearest the nail. They did a cat scan of his chest today, but a previous x-ray of the chest was clear. On the morning of surgery, the 2nd of June, they are going to do an SLNB; if it looks suspicious, they will remove all of the lymph nodes. We are praying for a good verdict. Hope all goes well with you. I pray God touch you and that you have a speedy recovery.

BEBS
Posts: 16
Joined: May 2011

Hi dkw53,

Hope your husband's surgery went well yesterday and that the lymph nodes were negative.

I will have my own surgery next Wednesday, June 8th - the process seems to be the same as your husband's.

I know caring for your husband is first priority right now. However, if you do happen to check this discussion, please let me know how things went. Was your husband happy with the ray amputation (we have not yet made a final decision here)? Were the sentinel nodes negative? If not, were the other nodes negative (I am still thinking about not having the other nodes removed even if the sentinel node/nodes show positive, although my the surgeon is recommending we do the full removal in that case)?

Again, thinking of you and hope things went well.

BEBS

dkw53
Posts: 21
Joined: May 2011

BEBS, Thank you for the well wishes. I am happy to report that all went well. The sentinel node tested negative; however, they found out that the cat scan he had on Tuesday showed he had micro nodules in his lungs. The surgeon said it was not a concern right now, but that they want to do another cat scan in 3 months. If there is no change, it will be up to his Oncologist as to how often he will need to come back. Previously, the Oncologist said he wanted to follow him for a few years. My husband said, as far as being pleased with the amputation, he cannot really say yes or no, he has not seen it. We go Tuesday to have the dressing changed. It is still early, but he feels it was the right decision. They did a nerve block so he had no feeling or control over his arm all day yesterday. He says that he kind of feels like the finger is still there, that it is just bent. If it starts to hurt, he wiggles his other fingers and it quits. He is on pain medication every four hours, but ocassionally he says it still hurts. If the previous surgeon knew that he was dealing with cancer, he would have done the surgery differently and they might have been able to save part of it. I pray God give you peace in your decision and that you have a speedy healing. Take Care and Keep Us Posted.

Margo12
Posts: 29
Joined: Jun 2010

Good morning - I am glad to know that the surgery went well and that your husband is recovering. It's also good to know that they will monitor him closely for the micro nodules. Hope you will continue to post here from time to time. With a cancer this rare, it's good for those few of us "in the club" to stick together! Best regards, Margo

BEBS
Posts: 16
Joined: May 2011

Hi dkw53,

So happy to hear the nodes were negative. It's important to celebrate each piece of good news. I wish your husband a speedy recovery and hope the cat scan in 3 months shows no change.

I will provide you an update on my own surgery as soon as feasible.

Thanks for your wishes,

BEBS

Margo12
Posts: 29
Joined: Jun 2010

Dear BEBS - just want you to know that I'm thinking of you as you have your surgery next week. Hope everything goes very well and that biopsy will be clear. If I may ask, where are you being treated? Best to you, Margo

BEBS
Posts: 16
Joined: May 2011

Hi Margo12,

I truly appreciate your kind thoughts. I've read about your situation on this site and also wish you the best.

As for treatment, I am still at my local hospital in Connecticut- because of the rarity, I've had to take a lot of initiative on educating them. However, both me and my hand surgeon have reached out to doctors at Sloan (which is about 90 minutes away), so at least this connection has been made.

Since the amputation/lymph node biopsy procedure now seems the normal initial approach for this abnormal cancer, I still feel reasonably comfortable with the capability of the local team. However, once the surgery is complete, I will strongly consider transitioning to the team at Sloan (to better tap into knowledge, clinical trials, etc).

Prior to this, I rarely had a need to see any doctor, so this is all so new to me. As such, I do appreciate any guidance you may have.

Warm regards,

BEBS

Margo12
Posts: 29
Joined: Jun 2010

Hi BEBS - glad to see your reply just now. Sounds like you are covering your bases well as is your medical team. Good that they have been connecting with a major medical center in managing your care. Will really hope that your LN biopsy is clear. I'm guessing that your medical providers will also refer you for either a CT or PET scan. If you are clear on those scores, you may be able to happily put all this behind you. I will hope that's the case for you. Please do continue to post as you are able. Be Well!! Margo

Margo12
Posts: 29
Joined: Jun 2010

Hi BEBS - glad to see your reply just now. Sounds like you are covering your bases well as is your medical team. Good that they have been connecting with a major medical center in managing your care. Will really hope that your LN biopsy is clear. I'm guessing that your medical providers will also refer you for either a CT or PET scan. If you are clear on those scores, you may be able to happily put all this behind you. I will hope that's the case for you. Please do continue to post as you are able. Be Well!! Margo

BEBS
Posts: 16
Joined: May 2011

Margo12, dkw,

I want to thank both of you again for your thinking of me. While I am struggling a bit to type this note following the finger amputation (just above the middle knuckle), I write with good news. All of the nodes removed were negative. I also had a CT scan the day after my diagnosis, which was clear. While only time can tell what the future will bring, it seems I am well for now.

I will continue to keep both of you in my thoughts and wish the best for us all. Communicating with you has been unbelievably helpful - I am amazed at the power of technology to bring us, with something so rare, together.

I will plan to check in periodically and I'd love to continue to hear how you are doing as well.

Warmest regards,

BEBS

Margo12
Posts: 29
Joined: Jun 2010

Dear BEBS - I am so happy to see your message this morning (and amazed that you can tap out a message when I am sure you are quite bandaged up!). The news is ALL good and I hope that very soon this will become just a distant memory in your life. BTW - as a way to amuse the children in my life after my amputation, I bought several finger puppets to wear on my "stub". The Barack Obama puppet is my favorite. This also kept my doctors amused. I do hope you will continue to check in from time to time. Happy that DKW and I were able to be of some help to you. Heal well, live well. Best to you, Margo

dkw53
Posts: 21
Joined: May 2011

I see all went well with your surgery; I said a prayer all would go well for you. Please keep us posted on your progress. My husband seems to be doing well. It has been nearly 2 weeks now and he is able to use his hand some as long as he does not put pressure on it. He does have the phantom pains occassionally, but other wise doing well. I will continue to post as well. Thanks to you and Margo as well. dkw

Margo12
Posts: 29
Joined: Jun 2010

DKW, I am glad to see your posting and to know that your husband is on the mend. The phantom pains are an odd sensation. This should lessen over time though even now (4 years post amputation) I still, once in a great while, experience a phantom itch or twinge in the finger tip that is no longer there. Funny how that happens. I hope that BEBS is continuing to heal and that she will post again when she is able. Best to you and your husband and to BEBS, if she sees this message. Margo.

Margo12
Posts: 29
Joined: Jun 2010

Have been checking in here and hoping to see updates from one or both of you over the last couple of weeks. How are you doing? Hope recovery for both DKW's husband and BEBS is going well.

BEBS
Posts: 16
Joined: May 2011

Hi Margo,

I hope you have been well. Have you started chemotherapy yet?

I have only been living without my finger bandaged for a few days - I am more self conscience than I expected (since I initially just wanted to be rid of the tumor source), but getting used to it. However, my kids are still a bit "creeped out" (although I like your finger puppet suggestions). The good news is that they looked at not only the finger margin, but the original tumor site and couldn't find any tumor cells.

However, during my SNB, the surgeon either nicked or stretched some nerves, so I have residual arm pain and numbness, as well as limited range of motion. Even so, this is getting much better, although I am told the numbness will remain. Small price to pay I guess, since all nodes were clean.

I have a follow-up with the oncologist in July 6th to discuss the longer term plan - based on my first meeting, this is likely an annual chest XR or CT, but no radiation or chemo. Since those treatments have mixed results, I've begun researching ways to keep my own immune system strong - not sure if it will help, but feel good that it won't hurt.

Again, hope your situation stays stable and/or improves - keep us posted. I remain impressed by your strength!

Warm regards,

BEBS

dkw53
Posts: 21
Joined: May 2011

Hello Margo & BEBS: sorry I have not been updating like I should. I forgot my user and password, silly me. I am so tired of passwords, but know it is necessary. Anyway, my husband is still not able to return to work. He has arthritis in his hand/hands and was having difficulty before his ray amputation. He has not been healing as rapidly due to the arthritis and is going through intense therapy with a Hand Specialist. He is getting his strength back in the hand; still having some phantom pains, but the sensitivity is getting less. He had another ct scan, the nodules are still there - no change, tho. His Oncologist thinks it is nothing, but will have to have ct scans at 3 to 4 month intervals. His doctor kept insisting he get a colonoscopy due to his age, 58 and history. There was one small polyp and it was removed. We will get the results back within a week. I am sure it will be fine. I am glad that things are going well, to speak of, as things can always be worse. If I can be of any help to either of you, let me know. I will be checking in more. May God Bless & Keep You both. dkw

Margo12
Posts: 29
Joined: Jun 2010

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

dkw53
Posts: 21
Joined: May 2011

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.

dkw53
Posts: 21
Joined: May 2011

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
Posts: 21
Joined: May 2011

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.

BEBS
Posts: 16
Joined: May 2011

Hi dkw,

Thanks for updating us on your husband's status. I am sorry to hear that recovery has been slow. However, I am equally delighted to hear that there has been no change in the lung nodules. I also hope the colon polyp results prove non-eventful.

On my side, the residual effects of the SLNB are improving. My range of motion is near normal, although the numbness remains (and I'm told it likely will forwever). While my finger has healed well, I must admit I was not fully prepared for how much it has impacted my life. Typing is now fine, but I frequently bump it, which is extremely painful, and it turns blue with the slightest chill in the air. Still, a small price to pay should everything turn out okay. My next event is a follow-up CT in January. Until then, I just look forward to a wonderful fall and a healthy holiday season with my family.

Please do keep posting and we will continue to keep you and your husband in our thoughts.

BEBS

dkw53
Posts: 21
Joined: May 2011

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.

dkw53
Posts: 21
Joined: May 2011

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.

geoff57
Posts: 2
Joined: Oct 2011

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
Posts: 16
Joined: May 2011

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
Posts: 2
Joined: Oct 2011

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
Posts: 21
Joined: May 2011

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.

leeranger
Posts: 4
Joined: Jul 2012

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
Posts: 4
Joined: Jul 2012

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. :(

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