digital papillary cancer

BEBS said:

Definitely doing amputation
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

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 said:

Thinking of You
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

Update
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.

BEBS said:

Definitely doing amputation
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

Your upcoming surgery
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 said:

Thank you
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

Your situation
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

dkw53 said:

Update
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.

Your good news
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

BEBS said:

All is well
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

Wonderful news!!!
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 said:

Happy for you, BEBS
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

Updates
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 said:

To BEBS and DKW53
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.

Doing Well
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 said:

Update - over due
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

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

BEBS said:

Thanks for the update
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

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.