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?

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.

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 .

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.

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

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

Pagets | BCNA Online Network

13 Replies

Heidi101
Member
9 years ago
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.
majo
Member
9 years ago
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 .
socoda
Member
9 years ago
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.

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Pagets

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