Paget's Disease of the Breast
Comments
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Hi. Sorry you have been diagnosed with Pagets, I am also from the UK, the doctors I have spoke to do not seem well informed. Let us know how you get on.
Regards
Lou.
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Thanks Lou; I'm in Hertfordshire and paget's doesn't seem to be on their radar at all. I see the specialist on Wednesday so will let you know. It's been good to find this forum though because I was feeling rather isolated. Even a dear friend who has had bc kept telling me that my symptoms couldn't be cancer as it doesn't itch or get sore :-(
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hi annecordelia, welcome to the forum. Sorry you have to join us but you are with friends here. Paget's is really a tough one to detect. It's not on many peoples' radars, even medical people. It's rare and have symptoms quite unlike other types of BC. And one thing I definitely learned on this forum,, is that there is (unfortunately) so many types of BC, so that symptoms vary widely. Women have been told: Oh it can't be cancer, cuz a cancerous lump doesn't hurt,,, and boom, it is. There is no one-size-fits-all on this beast. don't be surprised if the MRI doesn't show anything,, mine didn't. Good on you for seeing the skin specialist and pushing for the biopsy.glennie
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Hi Lou and Glennie,
I had the results of the mri back and apparently it showed up two other areas of concern in the same breast. So-I've decided to go for a double mastectomy which will take place on the 10th Sept. One strange thing did happen: I have an aunt in the US who I hadn't bothered with all this as I didn't want to worry her until I was sure what would happen. I know my great grandma died of breast cancer in the 1930s but last night on the phone, my aunt told me that her mother had nursed great grandma and had told my aunt that the cancer had been very strange as it had all been 'on the outside' of the breast. That definitely sounds like Paget's? Perhaps we have some strange strain of it in the family. Either way, I'll make sure knowledge of it is passed down to all the women in our family, starting with my 8 yr old grand daughter when she's older . Anyway, I hope you are both ok and thanks for your kind words
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anne, sorry to hear of the news, but glad you will be having surgery so quickly. It really does sound like you have some type of family history going on. Never heard of Paget's being heriditary but who knows?Will be thinking of you on Sept 10th and keep us posted when you can.
glennie
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Hi anne,
I am sorry about your recent diagnosis. I also had paget's with 3 other tumors in the same breast. When I researched it a few years ago, I read that paget's usually has several tumors surrounding it. Hopefully it may not be the case for you but if you have decided to do mastectomy, it may be the best decision. I wish you the best of luck with your surgery.
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Hi, my grandma also had pagets of the breast witch did surprise the surgeon, so perhaps it is hereditary been such a rare cancer. But I do hope not as I have 2 daughters.
Good luck with your surgery.
Regards Lou.
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Thankyou everyone for your support. Very interesting Lou. I have sisters and we all have daughters so i think I will be handing it down as family information. Now my next problem is how and what to tell my 6 yr old son :-(
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Anne,, can't help you with telling your son,, but I know I have seen other threads on that subject. Try the Search button with terms like "telling the kids" etc.0 -
Thanks glennie, I wik have to have a good look...x
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And thankyou to new2bc :-)
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Hi everyone - just to let you know that I'm home following my dmx. Am rather sore but don't regret my decision. Have to go back for the results on 23rd so am hoping that they don't find anything else. Regards to you all...
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Hi Anne,,,, best wishes for a speedy recovery and no new findings.
glennie
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Thankyou Glennie x
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Hi. Have plenty of rest, I hope you have good news on the 23 Rd.
Regards Lou.
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Just joining this club today. Age 46. I feel like a zombie. What to expect?
I am trying to stay optimistic. Small area on nipple formed a scab, no redness or spreading...but suspicious mass right behind the nipple on ultrasound...(don't know size or anything else, but I can't even feel what they are talking about) They didn't find anything of note on the lymph node during ultrasound.
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hi lessharp,
sorry you are joining the club. I'll put a link here of an article about Paget's so you can read more about it. Hard to know about the mass. Will they biopsy it? Are you seeing a breast surgeon soon? Basically with Paget's, you have two choices: lumpectomy with rads or mastectomy. I would want to find out more about that mass,,, can you get an MRI ordered? That might give you more info too.
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I had the scab and went to my doctor, she felt a lump. While waiting for appointment for mammogram and ultrasound I quickly got in with my dermatologist who took the nipple biopsy. When mammo/ultrasound came up with suspicious mass my doctor got me in with Texas Breast Specialists today. At the time, the lab had not come back on the scab, so oncologist wanted to wait and see before putting me through the biopsy....because if lab came up Paget's, we have our answer. She and I did not discuss anything further and by the time I got the news the TBS was closed. Just want it taken care of pronto. I honestly don't see doing lumpectomy...just rather remove them and be done. (She also drew blood for genetic testing).
I'm frightened of the idea of it spreading, of course.
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Paget's is not known for spreading. But it is frequently found with another type of breast cancer,,, I had DCIS discovered in my pathology, so your final treatment plan will depend on what, if anything else is found. Will they go ahead with the biopsy of the mass? I guess you'll need to speak to the doctors first and get a game plan.
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Glennie, I think the with combination of the suspicious mass and Paget's specialist will remove the whole breast, then biopsy?
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It is possible. Have a discussion with them. I was offered a lumpectomy and rads,,,, but since the whole nipple area and a margin needed to be removed,, and my breasts are on the small side,,I wouldn't have had much left. And then I'd have to had rads too. So I pushed for the mastectomy. I was glad I did,, not just to avoid the rads, but there was underlying DCIS that no one suspected, so I was glad to have that out of me.
They will do pathology when you have surgery,, I was just wondering if they were going to biopsy the mass to see what it is first,, and then plan a course of treatment. If the mass is another type of cancer, there may be other treatment plans to do. There are some cancers that it is beneficial to have chemo first before surgery. So I mention these things so that you can get as much info as possible to make an informed choice. And always keep in mind that you can get a 2nd opinion.
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thank you, yes. ...I am anxious to have the affected part removed asap. Don't think I can bear waiting at all for tests. Breast Specialist still has not called me....ughhhh.
Every ache I feel makes me worry about it having spread. The thing is, I know better than to worry. ..it is utterly useless. It is what it is. In God's hands. Thand you again for the feedback and support!
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Finally spoke with Breast Specialist, She says it is early and looks to be DCIS, which she says is slow growing (can't know for sure until biopsy, though, right?)...and waiting two weeks for results of genetic testing will not change my prognosis.
I have an appt on Monday with Plastic surgeon to decide on reconstruction. BS says I may not have enough fat for flap, but thinking that's what I want. I have natural D cup on 5'6" frame, weight 135-140lbs, but also pretty active/muscular. Should I be eating and trying to gain weight? If so, I'm on it!
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I did not have recon,, so I can't advise you on that part. Wish I could loan you some fat! And no,, you can't know if it is DCIS until the pathology,, and there is no way for them to know if that type of DCIS is slow or fast,,, really,, don't let them try to fool you. Pop over to the DCIS forum and read up on it. See this link.
https://community.breastcancer.org/forum/68/topic/790992?page=8#top
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I have not been getting regular mammograms - I am 81 - but this June had a discharge from my left nipple and went to my physicians assistant. She wanted to do a biopsy immediately but I guess her supervisor wanted her to recommend me to a surgeon which she did as well as making an appointment for an MRI which I did. I had 2 MRI's as the regular one was inconclusive. I was not worried at all though.The surgeon suggested a watch and wait and thought it was dry skin. The nipple was a different consistency and as soon as I put neosporin on it the discharge stopped. I saw the surgeon in July and it was better so the next appointment was in October and it was still the same so he did a biopsy. It came back with Paget's and he was nervous telling me this as he had made a mistake. I was complicit as I had just read articles on watching and waiting rather than rushing to surgery and biopsy. I understand now that the physician assistant was right all along on active treatment but I had just switched to her as my long term PA had just retired. She was also annoyed that I was taking HRT (Estrodiol and Progesterone) and wanted me off it. Anyway the MRI's in June showed nothing but now am scheduled to have another one and probably surgery. Radiation doesn't appeal to me though nor a radical mastectomy but I will do it.Probably the radical choice to avoid radiation.The disfigurement doesn't bother me. At least I think it won't. I told my PA right away that I was comfortable with her doing a biopsy right away but it was taken out of her hands. Again the woman knew but didn't have the power to make the correct decision immediately. I told her that I was angry about that but she assured me how good the doctor was she referred me to. Since he was not an alarmist I went with it. I have about decided what I will do and what I won't do to prolong things. I would like to know more about radiation though from someone here. I suspect this was what my mother had around age 40 or so when she had cysts removed that were benign. Her first symptom was inverted nipples and she went right away to the surgeon. In my case it could have been handled right away if my clinic had just not been afraid to let their PA do what she wanted to do. But oh no, they must cover their U know what, and send you to the surgeon. I like him, I trust him, but men are just different.I will be more aggressive from now on. I should have demanded the biopsy that first day.
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Dear seymourblogge - We want to welcome you to BCO! We're so sorry for what you're experiencing, but you've come to the right place, and we hope you find what you need from our boards. As you can already tell, there's a lot of wonderful people here providing support and information!
We wish you all the best with your further tests. If you need help navigating the forums, or have a question, please don't hesitate to contact us via the private message function. We're here for you!
Again, welcome to the community!
The Mods
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Hello again everyone. Just to let you know that I am recovering well after my dmx a month ago. More dcis was found but his actual words were 'you're cured'. I am thrilled beyond anything, but mindful of those who use this site for whom the news hasn't been as positive. This place has been such a support and a real wealth of knowledge - certainly the only place I've found to actually discuss paget's. I am now waiting for all the swelling and fluid to go down but don't feel as if I can complain too much about that . Thankyou so much to those of you who offered your support and very best wishes to you all
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seymourblogger: I am sorry that you are here joining the club, but why on earth do they want to do a radical MX for Pagets???
I had Paget's,, and it did not show up on mammogram, Ultrasound or MRI,,, so no surprise that yours didn't either. Only biopsy can tell you for sure that you have it.
the treatment standard is either lumpectomy (removal of the nipple and clear margins around it) with radiation therapy afterwards,, or a SIMPLE mastectomy. Paget's very often has another underlying breast cancer,,, like I had DCIS in my breast which again, did NOT show up on any imaging studies. Have they told you that something else is in your breast?
I decided on mastectomy to avoid rads,,, but again,, please question them about the type of mastectomy that they want to do,,, and why they would do a radical? And please consider getting another surgical opinion if the surgeon insists upon doing a radical MX.
Let us know how you are doing.
glennie
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anne: glad you are recovering well!
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ugh! had a lumpectomy 4 years ago and all's been well until about 3 weeks ago. flaking, redness and discharge from nipple on same breast where lump was removed. cannot believe it! so i'm having a wedge biopsy in 5 days to determine if its Pagets...sounds like it is, for sure. i seriously feel that i cannot go through chemo and radiation AGAIN!!! i have 2 teen girls, i'm a single mom...this won't work. haha! just crossed fingers that it hasn't spread.
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