Pagets

majo

Hi have just been diagnosed with Pagets of the nipple  and a small cancerous lump in my breast . Saw my surgeon last week and I can have  my nipple taken off them the lump out after that radiation every day for 6 weeks or a full mastectomy no treatment after . I said I would leave it to him what he thought best   at the operation but now at home I am thinking I will go for the full mastectomy . has any one else faced this sort of decision?

socoda

Hi Majo, haven't faced the same thing with the nipple but was told initially that a lumpectomy would be all that I needed to remove my tumor. Was also told the amount of tissue required to be removed would greatly deform my remaining breast. I decided to go with full mastectomy and immediate reconstruction using silicone implant. Surgeon after checking ultrasound, mammography results said that she was happy I was going with full mastectomy as there was a possible satellite cancer as well (turned out to be a benign lesion). Results were grade 1 cancer - full mastectomy, clear nodes, clear margins, no chemo, no radiotherapy and I will have surgery and fat grafting to match my old breast to my new and improved one. All good. Four months down the track absolutely no regrets. Let us know what you decided and wishing you all the best.

majo

Hi socoda, I think this pagets thing is quite rare so trust me to get it at 74, so I am pretty certain I will go with the mastectomy   I think  it s the thing to do specially at my agebut won't be going for a reconstruction   I will manage with the bra. I think you stop a lot of worries by doing the full thing don't you? I know its not the same with you  having the reconstruction  but how long,before you could do anything  at home ect? Thanks for contacting me  my op. Is the  10th. Nov.   so I wil let you know  but what you have said makes it sound right .

Heidi101

Dear Majo,
So sorry to hear of your diagnosis - but you are in the right place I'm not sure about the pagets diagnosis and what it means but I think its really important that you take your time making your decision.  I know that the mastectomy idea seems like it will more quickly solve your problem but it is a big thing and something you want to be sure of your decision about.  Before I had a mastectomy (no reconstruction) 4 years ago (aged 40) my surgeon insisted that I get a second opinion.  As she said her opinion was that I needed one but she wanted me to be sure of her advice because she didn't want me to have it, and then wonder if I really needed it.  I have found I have developed back issues 4 years after mastectomy from being lopsided (even wearing the prosthesis).  Also dressing can be quite difficult.  That said if it needs doing it needs doing but just maybe check all your options out thoroughly so that you feel confident that you've have made the best decision you can under the circumstances.  Best wishes to you.

lrb_03

Hi Majo, I would also ask about lymph nodes, and what would happen treatment wise if sentinal lymph node was positive at time of surgery. I would alsoask about the long term side effects  of radiotherapy, and mastectomy, and think about which might be easier to  live with. I have a lot of chest, breast and side wall of chest discomfort 9 months after completing treatment, and sometimes think I would do almost anything  to avoid radiotherapy again. I have been advised by my surgeon that my response is not common, or predictable, and would never have got away without radiotherapy ,  as I was node positive at diagnosis.
Take care

socoda

Hi majo, for me the mastectomy was exactly what I wanted (and mentally needed) and at that time my surgeon believed my cancer was very aggressive and assured me I was going to have chemo - so lucky I got the results I did in that it wasn't as aggressive as expected.  I was hanging clothes on the line my second week after surgery (only lifting my right arm) and my surgeon gave me permission to drive after two weeks ( just had to pull the handbrake on gently). Also did some gardening and potted up a stack of absolutely gorgeous pansies and primulas. Did over do that one a bit and was a bit tender as a result (still had drains in and its not a good idea to bend too far with them in). Mainly watch the lifting of your arm -  but your breast care nurse will give you a list of exercises to help with the mobility of your arm and a schedule to work to. Pain wise I fully expected it to be a lot worse than it was and I had reduced my painkillers to just panadol within three days of surgery but having said that because my drains were still in I was as regular as clockwork about taking my panadol.   If you have any questions you need answering at all, please ask. Xx Cath

Hopes_and_Dreams

Hi Majo, I am similar to Cath.  Only a smallish cancer 1.3cm but as I am small breasted there was a danger of not clearing the margins if I went for a lumpectomy.  Cosmetically, it wouldn't have been a good choice either and a mastectomy meant I had a chance of avoiding chemo and radio.  My surgeon suggested a nipple sparing mastectomy with immediate implant and fortunately his hunch was right and my cancer was a grade one, clear sentinel nodes.  What I am finding from reading everyone's stories is that we all have different reasons for choosing a mastectomy or not.  It is helpful to read everyones reasons but ultimately you have to be at peace with your decision.  Ask lots of questions of your surgeon and don't be afraid to challenge if information is not clear.   Wishing you all the best with your decision - let us know when you have a surgery date.  There is so much experience and knowledge on this site majo, please make sure you ask - everyone has been there and is only too happy to help.  take care, Jane x

Doll

Hi Majo, I was diagnosed with Pagets and chose to have a skin sparing mastectomy with an immediate implant reconstruction.  I am a B cup so lumpectomy or wide local excision would have left me with little breast tissue.  The possibility of not needing radiotherapy helped me decide on mastectomy.  Pathology results meant I ended up needing both chemo and radiotherapy.  It was a challenging year but I don't regret any of my decisions.  The other ladies make good points about making a decision that sits right for you.  We are all different.  Ask lots of questions, get a second or third opinion if you need it.  Breast care nurses are a good source of information.  Take one day at a time.

Doll

Hi Majo, I was diagnosed with Pagets and chose to have a skin sparing mastectomy with an immediate implant reconstruction.  I am a B cup so lumpectomy or wide local excision would have left me with little breast tissue.  The possibility of not needing radiotherapy helped me decide on mastectomy.  Pathology results meant I ended up needing both chemo and radiotherapy.  It was a challenging year but I don't regret any of my decisions.  The other ladies make good points about making a decision that sits right for you.  We are all different.  Ask lots of questions, get a second or third opinion if you need it.  Breast care nurses are a good source of information.  Take one day at a time.

majo

Do I need the wire inserted in my breast before surgery if I have a mastectomy does anyone know

lrb_03

Majo, I hope your last question has been answered, by now, but no, you shouldn't need the wire inserted if you have a mastectomy 
Take care, 
Lyn

majo

Well all over I went very well  no wire but tests to locate the nodes  for the surgeon before op. done Thursday afternoon home Saturday  only on panadol. I am still taking  panadol as the drain is still  in my second week of it  and so hard to,sleep with but as my nurse said today while that is in it stops you from doing too much which is quite true. Had a couple of dramas with the drain woke up one morning soaked where it leaked  so into the ambulatory nurses then another small one but then we knew just to change the dressing . But I have been so very lucky the lump was only small and no treatment . I have found my breast care nurse now  so all is well.

socoda

Hi Majo, Excellent that you are doing so well. Just a hint with your drain if you are getting sore at the drain site get some extra Micropore tape (from chemist) and make the drain more secure so it doesn't swing around at all. Xx

Brenda5

Most often what you feel is right turns out to be the best decision. I straight out wanted the left mastectomy and my surgeon sort of raised his eyebrows and asked me to think about it for a week. After a week my answer was still the same. As it turned out I was right and as discoveries were found of a fatty lump on the other side of the breast and positive cancerous sentinel node, I would have had to probably have the mastectomy anyway.

I only have a small breast left and I have found if I wear a shirt with front pockets, it sits out in such a way I don't need any bra padding. In fact I never wear a bra at all any more. People mustn't notice either as many times with other doctors and optometrists sitting face to face I have had to tell them I am missing one boob.