Newly Diagnosed Pagets Disease

Hi Ange

Just checking in to see how you went with your appointment. Hope all went well.

Desley

Hi Ev

Just wanted to touch base and see how you are doing. How did you cope with your treatment? Hope all is going as well as can be expected.

Desley

Hi Ev

Just wanted to touch base and see how you are doing. How did you cope with your treatment? Hope all is going as well as can be expected.

Desley

Hi Ev

Just wanted to touch base and see how you are doing. How did you cope with your treatment? Hope all is going as well as can be expected.

Desley

Hi Desley, thank you for responding, sorry to hear about your computer problems, modern technology, great when it is working, a pain in the butsky when it isn't.

You nailed it on the head when you said you feel isolated, and annoyed when people said you were lucky, etc etc.  I am healing, and I also found out I had the "normal" breast cancer lurking inside as well, and if it hadn't been for the staph infection I had due to the first biopsy I had done, this may never have been detected.  I am still healing, have a Pico bandage doing its job, and just want it over with now, it has been 6 weeks, and I want a decent shower.  I will have to go through 5 days/6 weeks of radiation treatment when all is healed over too.  My biggest fear at this moment is taking the first look at the wound, I feel at this point that it will be a shock as I truly don't know what to expect to see or not see.  Everyone keeps telling me that it is "just" a breast, and to be thankful I still have most of it and that the cancer is gone, but shit, it is part of me and has been for 53 years!  I do have a lovely lady that shops in the store where I work who has had a masectomy, and she has been very supportive and knows the feelings I am having, so we are hoping to catch up and just sit down somewhere quiet and talk about it all.

How does one go about writing a book about this? lol, have thought about doing a small pamphlet on it and sending it to the Breast Cancer Assoc. amazing how the support dropped right off from them once you confirmed it wasn't the "normal" breast cancer. 

Anyway, I will continue to mend, and face each hurdle as it confronts me, thanks for your support, and I sincerly hope that you have recovered well from yours.

Sending love back to you

Ev

HI Ev,

Sorry to hear about your diagnosis. I'm sorry it has taken so long to get back to you. My computer died and I have had all the dramas under the sun getting the new one to work. But finally here I am. I hope you surgery went well and you are healing. I completely understand your frustration regarding not fitting in anywhere regarding the type of cancer we have. I found this the hardest thing to get my head around. I felt like I wasn't sick enough, it wasn't serious enough, everyone telling me how lucky I was. It just about did my head in. I found it very irritating everytime someone told me that and also told me to stay positive. I tell you those two words are like a potato peeler on my skin.... I know they are only trying to help and they don't know what else to say. I really struggled with feeling very isolated as I didn't have anyone I felt I could talk to about my cancer as we are such a small percentage. I ended up speaking with a friend who has had thyroid cancer and this helped. I think because she wasn't part of the breast cancer circle it made it easier. I hope I can be of some help if you need it. Feel free to contact me anytime. Sending you love. Desley

Hi Desley, you seem to be a "kindred soul" I have been diagnosed with Paget's disease in the last two weeks and head for the knife this coming Wed (5/12/12). I have just received my "My Journey Kit" from the breast cancer foundation, and although it is a wonderful kit, it really isn't that helpful (except perhaps with some of the emotional roller coaster issues) for the type of cancer I/We have.  Although people keep saying to me that I am "lucky" it isn't as serious, hell, I don't feel that lucky, it is still an invasion of a very special part of my anatomy and I am not looking forward to the removal of the nipple and aerola at all, and to add insult to injury for me, my first biopsy that was done by a dermatologist has gotten infected with a very serious staph infection.  So, that means now I will also have to have a drain inserted into the breast at the time of my operation to make sure the infection is drawn away from the area concerned... How the hell does one wear a bra with all this crap dangling out of you, and I believe my surgeon won't be putting any bandaging over his proceedure and the other would for the infection will have to also heal from the inside out... it is all becoming a little daunting.   I don't like feeling "rare" or "lucky" ! 

Ev

Hi Desley ,  my name is Heather i am 28 and have been experiencing some symtoms similair for over 3 years now.  Still not aware what is wrong.  I had breast implants in 2008.  I Seen a doctor about pain in my right armpit back in Scotland about it and my sore nipples. Nothing as such was said pr came from that just cream and told to go easy at the gym.

  Last year in 2011 i was up north queensand and seen a doctor about pain , itchy red nipples, changes in shape on the right nipple and colour.

Over half of the right nipple has changed colour from brown to a hot sore looking pink colour.  I had a mamogram and nothing.  Doctor had a good grope of my breasts and sent me home. 

One year on i cant even sleep without having to hold my right armpit.  My nipples are sore on both sides now , never heal are contantly crusting and breaking open at the bottom .  The nipples are also weeping badly.  This will be the 4th time i have been to a doctor.  Just not sure where to go from here.  I am flying back home in 3 weeks to see my uk doctors again, try and chase down my surgeon from the implants and demand a biopsy.

In the past two weeks one of the nipples has became inverted and pulls in like a nerve.  I have been reading symptoms but they say its older women and only one breast that appears different.  I am so conused. 

Hi Desley ,  my name is Heather i am 28 and have been experiencing some symtoms similair for over 3 years now.  Still not aware what is wrong.  I had breast implants in 2008.  I Seen a doctor about pain in my right armpit back in Scotland about it and my sore nipples. Nothing as such was said pr came from that just cream and told to go easy at the gym.

  Last year in 2011 i was up north queensand and seen a doctor about pain , itchy red nipples, changes in shape on the right nipple and colour.

Over half of the right nipple has changed colour from brown to a hot sore looking pink colour.  I had a mamogram and nothing.  Doctor had a good grope of my breasts and sent me home. 

One year on i cant even sleep without having to hold my right armpit.  My nipples are sore on both sides now , never heal are contantly crusting and breaking open at the bottom .  The nipples are also weeping badly.  This will be the 4th time i have been to a doctor.  Just not sure where to go from here.  I am flying back home in 3 weeks to see my uk doctors again, try and chase down my surgeon from the implants and demand a biopsy.

In the past two weeks one of the nipples has became inverted and pulls in like a nerve.  I have been reading symptoms but they say its older women and only one breast that appears different.  I am so conused. 

Hi Ange,

Sorry to hear about your symptoms.  In regards to my pagets my nipple was itchy sometimes but mainly the skin became what I would describe as "fragile".  It was on one side of my nipple on the aerola and I thought at first my bra had rubbed the skin off.   So it would heal over but then I would wipe it with my towel after my shower and it would come off or it would rub off in my bra.  My local GP said it was nothing and sent me for an ultrasound which turned up nothing.  Then he referred me to my surgeon for a second opinion.  He is an older surgeon and he looked at it and said it didn't look like anything and gave me cream and to come back in 2 weeks as I was only 36 and pagets is very rare and usually an old person's disease???!!!  Well this went on for a couple of months with lots of different creams and then finally he said that we have come to the end and that we would have to get a biopsy to see what it was so that we could treat it with the right cream!  So had the biopsy and he said that he really didn't think it would be anything so I went for my results on my own! what a mistake.  Being told that you have breast cancer when you are by yourself is not nice!!!!  In regards to your symptoms you have some of what I had but with this type of cancer  it doesn't present exactly the same with each person.  I highly recommend that you seek a second opinion to get a definate diagnosis.  I hope you get the help you need as I believe knowledge is power and once you know what you are dealing with you can treat it.  Good luck at your appointment and if I can help in any way let me know.  Regards Desley.