Dupuytren’s Contracture

LEEMA

hi everyone, this is my first post!  I was diagnosed with MBC (de novo) in January 2018.  Mets were found in my lungs, bones and brain.   I completed chemo June 2018 and very happy with latest scans.  Eights spots in lungs have disappeared, breast tumours have shrunk dramatically and no further changes to the brain met.  (no one seems too worried about the Mets to bones at the moment). I am currently receiving perjeta and herceptin every three weeks and taking Femara daily.

the reason for the post is that I have just been diagnosed with Dupuytren’s Contracture - which is small ‘boney like’ lumps on the palms of my hands.  Apparently it is quite a rarity for women and the Professor is looking at the link to Femara???

there is no cure for Dupuytren’s but as I have caught it early I will be having radiation on both palms - this cannot be done if it goes to the next level.

Has anyone else experienced this?

Thank you for reading.  Xx

Karenhappyquilter

Does it run in your family? My mother had it, as well as my father, brother and I also have it slightly.

 I had heard it was less common in women but my mother had it and also my  brother’s mother in law.  

My father, my brother and his mother in law all have had surgery to try and correct it. I had not heard of radiation as a treatment for it.  Sounds better than the surgery.

Based on my family’s experience  I can say it’s not too bad unless it’s severe and effects your use of your hands.  Which is when surgery is needed.  

Afraser

It’s very hard to be certain about links, especially with relatively uncommon conditions but after seven years on Femara I have never heard this condition mentioned at all. My oncologist is pretty good on new research, but it would be interesting to know if there is any follow up. 

LEEMA

Thanks for your reply @karenhappyquilter..... No, no one in my family has it and it is so strange as it seems too much of a coincidence that it has appeared since I have been taking the Femara.  Prof thinks there could be a connection and I was hoping to let others know.   Radiation is only an option if you ‘catch’ it in the early stages, otherwise it is surgery.

Hahah it is probably the least of my worries at the moment though!!

LEEMA

@Afraser  Yes my Professor is absolutely brilliant as well!!  He said there had been links to ‘trigger finger’ with Femara, but that is different.  I will let you know if I hear any more links 😊

Afraser

I can understand trigger finger - Femara can play havoc with joints. Cross fingers, so far so good for me as regards joint problems. My mother was driven mad with multiple trigger fingers in her last few years - no Femara though! 

primek

Do you have diabetes. My husband has it and stated it is not uncommon with diabetes. 

LEEMA

@primek No no diabetes - that’s why its baffling.... no family history as well.  They are looking at the link to Femara that’s why I thought I’d ask on this site.  Also to make people aware, as its so much easier to treat if caught early.

arpie

Terrific to hear your treatment has gone so well .... 

Where abouts do you live, @leema? A buddy with Prostate Cancer Mets had quite restrictive Dupuytren’s Contracture in one hand - and a wonderful surgeon in Newcastle did the surgery on him, gratis!  Such a wonderful thing for him, as it has enabled him to get back to his offshore kayak fishing, which is one of the 'mainstay activities' since being diagnosed with Mets straight up, 18 months ago.  His boney like lumps were quite pronounced & his hand had a real 'claw' like shape .....  if you can get it checked out sooner than later (before it becomes more extreme) it could be worth investigating.    I hadn't heard of Rads as a treatment before.

I had quite extreme Trigger Finger on Letrozole (and Exemestane) now on Arimidex (and magic oil) and the trigger finger (thumb in particular and middle finger) has now fixed up!

Take care, all the best with the rads on your hand xxx

LEEMA

@arpie Thank you for your response!  I live in Sydney and am having treatment at the Prince Of Wales at Randwick under the fabulous Professor Friedlander.   I’m very lucky that the BC nurses made me see Prof as I had just mentioned these strange little lumps in passing.  They then sprang into action and walked me round to see the Prof.  He confirmed it was Dupuytren’s (I’d never heard of it).  From there it was straight to the hand surgeon, who said it was in the initial stages.  Radiation can only be performed if it is at Stage 0, so I am very lucky.  I see Prof Michael Jackson (hahaha love the name) for one week of radiation every day and then six weeks off and then another week of radiation everyday.  

Both doctors said that because I had no family history and really didn’t fit the frame for a typical Dupuytren’s patient, that maybe it could be linked to the Femara.   I thought I’d ask here so that maybe if someone else had these strange little lumps, they could also get the treatment at the early stage.

To be honest, I wasn’t really that concerned about it, but I definitely didnt want to end up with ‘claw hands’ 😂😂 I have enough on my plate at the moment.

Thank you again for your kind concern - I hope your treatment is going well also ❤️😧

Annski

Hullo @LEEMA I am 74 and have had very visible Dupuytens for several years now, long before I started on Femara 2 years ago. But I think it has become a lot worse since then. It is also known as Viking Hand and has strong genetic links with Norse ancestry. Actor Bill Nighy has it very badly, he hides his right hand in all his movies. I hadn't heard of radiation as a treatment and apparently surgery is not always successfull. I just live with mine and when bad soak hand in hot water and Epsom Salts, also massage with emu oil. Not really disabling, I can type and knit fine but grip is poor. I pointed my DC hand out to my surgeon and onco but nobody seemed very interested. Strange hard lumps on the soles of the feet are also a symptom. Good luck with your treatment.

LEEMA

Hi @Annski, mine is only in the early stages and that is the reason I was offered radiation - apparently it is only viable if you seek treatment very early.   It has appeared on both my hands (nothing on my feet).  It was my BC Nurses who made me show the professor - I had never heard of Dupuytren’s. 

I hope your hand doesn’t deteriorate any further, and I also hope if someone else on here notices any small bone lumps on their palms that they seek treatment early.

Thank you for taking the time to respond xx

Shakalker

Hi @LEEMA,
I have developed trigger finger in both middle fingers, strangely it is there when I wake up but disappears as soon as I start using my fingers.
Thanks for your post, It has made me aware of DC now, but with the comments of others it has given a name to the strange clickiness in my middle finger. 
Best wishes to you 
S xx

LEEMA

@Shakalker thanks for your post.  Just keep a look out for any little bumps on your palms - have them checked because if it does turn out o be DC, radiation is only available if you catch it early.  Good luck xx

JoeyLiz

We treat it quite regularly at my clinic with great success rates. Your palm does get quite red and it can a little painful to do some tasks such as driving so we do 1 hand at a time but same regime as you have described above. Best of luck with treatment x

LEEMA

@JoeyLiz Thank you for your kind thoughts - I see the Radiation Prof next Friday, I will let you know how it goes. Xx