Paget's Disease of the Breast
Comments
-
I am waiting for results of biopsy suspected Paget's, feeling unhappy as I was to get the results Monday , i have had a phone call saying its not going to be ready in time for my appointment, next clinic is in 2 weeks time.such a long time to wait I'm feeling very anxious.
0 -
lou,, it is so hard to wait. If they do not have the results at your appt on Monday,, can't they call you with the results? Reschedule you for an earlier appt when the results are in? Emphasize to them that you can take bad news, if necessary, over the phone,,, it's just the unknown that is soooo hard. Hopefully it will be good news over the phone,, but if not, at least you know,, and can start to plan what to do. **hoping for good news**0 -
Thanks Glennie I may phone them tomorrow.
0 -
Hi, just had a phone call from the Consultant and he has arranged to see me on the 11th out of clinic, but won't tell me any thing over the phone. That's 5 days earlier.Saying the biopsy results not back yet!!
0 -
glad you got the appt moved up, at least.0 -
Hi, just thought I would keep you informed, I had a phone call from the hospital today, the doctor wants to discuss my results tomorrow but has ordered a MRI scan for Thursday. All will be revealed tomorrow.
0 -
In the bag for you, Lou. Let us know.0 -
Not good news I'm afraid, it is Paget's in the left breast, MRI should tell me more, results on Monday. Thank you Glennie for your concern x
0 -
I am sorry to hear this, lou23. Thoughts and prayers go out to you.
0 -
Thank you Danielle, I have a good family to support me all the way, and I am glad I joined this group your thoughts and prayers help.
0 -
(((lou))) I'm sorry to hear this. The breast MRI can tell you if there is anything else going on in the breast. I'm sorry that you are joining the BC club. Let me know if I can help in any way,, answer questions, etc.Before I had my breast MRI, I looked on Youtube for how they did it. I've had neck MRI's before and wondered how it was different. They have you lay over this stand so that your breasts hang down thru it so that they can get the images. You'll be laying on your stomach for it. Don't know if you want to check it out on Youtube or not,,, I tend to want to know everything before I go!
Hang in there!!!
0 -
- Thanks for that glennie, at least now i will be prepared.
0 -
Well another wait now until Monday, I'm not a patient person !!. But I did manage to stay still for 45 minutes, and that wasn't as hard as I thought.
0 -
Hey Lou,, glad that's over for you. Waiting with you for Monday. I have a colonoscopy on Monday. We will both be having "fun" days. Hang it there!!0 -
Glennie hope all goes well for you on Monday, I will be thinking about you.
0 -
lou23, sorry about your results. Hoping you get some good news on Monday. And all of us understand the pain of waiting. It really is so so hard. Hugs!
0 -
Hi: Was wondering how you were doing? I am very new to the forum, just Monday I was diagnosed with Paget and nobody seems to know much about it...went for my MRI today so that will give me all I need to know when I go see my breast surgeon on Tues...I am so terrified, what is the prognosis? I don't dare read to much, although I know I should...I had my nipple removed last Wed and they found a very small underlying cancer under the nipple......what does all this mean? Terrified....please help...
Thank You,
Catherine Reed
0 -
I called a local breast center and the volunteer had never heard of Paget's? I know it is rare, are there any studies we could particpate in? Is the prognosis as bad as I have read?
0 -
Not sure where you read that the prognosis is bad. Paget's alone is localized to the nipple & areola area. There is often an underlying cancer like DCIS (which I had) or something else. The treatment standard is either mastectomy or lumpectomy with radiation. You may need more treatment if you have an underlying cancer.Paget's is rare and many people have not heard of it.
Here is some information: http://www.breastcancer.org/symptoms/types/pagets
0 -
Does anyone have Pagent Disease? I would really like to talk to them......Thank You
0 -
Glennie: When did you find out? What have you had done so far?
0 -
I was diagnosed June 2013. Had mastectomy Aug 8 2013. Pathology showed underlying DCIS that was not seen on mammogram or ultrasound or MRI. 6 nodes removed,,, all negative. I've had no other treatment,, just 6 month follow-ups.0 -
oh this is going to be a long weekend for us all. !! Hang in there girls x
0 -
Thanks for my questions, I am just scared out of my wits.......I am so glad your doing well....do most people have a mastecotomy that have Pagets? What is DCIS that people are talking about? I thought I read the Pagent was an invasive cancer, sometimes I read more into things than I should...I would appreciate you and all the girls staying in touch with me as I continue down this long journey.....Thank you so much
Cathy
0 -
Lou how are you doing? I was just diagnosed with Pagent in left breast on monday, yesterday went for my MRI and we talk to the surgeon on Tues...the wait is awful and I feel terrified.....I hope you are doing ok, can you tell me a little bit about your journey so far?
Thank You,
Catherine A Reed
0 -
I have had a sore left nipple for about 6 months but kept putting sudacrem on and that helped a little. I went to the doctors after Xmas when it bled a little and crusted over, it seed to get slightly better but not right. The doctor gave me an antibiotic cream. When that didn't work I was sent to the breast clinic, I had been there twice before to have cysts drained. They did a mammogram and ultra sound , they were both OK, they took a punch nipple biopsy and unfortunately that has come back positive Paget's. Just waiting now until Monday to get my MRI results. My grandma also had Paget's, she died of it but she hadn't had treatment she left it too late. Hoping I have caught it in time. Hope your results are good.
0 -
Hi Lou: I am trying to be brave and get my results on Tues......they have come a long way with breast cancers....someone on here said that Paget was not a "your going to die diesease" I have left my for a very, very long time as well....I had a breast reduction done 2 years ago and the nipple never healed, just blew it off saying it was the Breast reduction. They removed my nipple last monday and when they sent it away it came back positive for pagent with a very tiny 3 mm cancer under the nipple....I am hoping everything will be ok and go alright...I will keep you in my prayers and good luck monday, keep me posted,,,,,,long, long weekend this weekend isn't it? Hope you have great results.
0 -
Yes I think possibly Paget's on its own is only life threatening if left untreated like my gran. I think it may be under lying cancers that could cause a bigger problem depending what it is. Hopefully we will both have good news next week. Fingers crossed.I hope you are lucky like me and have a good family offering support. Unfortunately my mum was diagnosed with breast cancer last June so we are dealing with that also. Hers is not Paget's.
0 -
hi. I have been reading this with great interest. I can't remember when I first noticed my itchy left nipple, maybe last spring. It's wasn't much at first, thought maybe it was my bra. It would come and go. Then this winter I got worried and did an internet search. I got scared, but then it got better again. In February it started itching and burning so bad I wanted to rip it off. I live in the northern climate and I'd put it up to the cold window for relief. I then started putting some lotion on a makeup cotton pad and putting it in my bra. The cooling relieved it some. I loved when I could get home and take off my clothes, the restriction on the bra seemed to make it worse. I would do anything to try to itch it without people noticing. There is no crusting or nipple flattening or a lump but there is a little spot at 1:00 that is more red then the rest. When I compare my nipple to the other it looks the same except it doesn't have the "ring" around the center since it has that rash like small spot. So I made a Dr appt. and went on Wed. She referred me to the breast center and I had an appointment for this coming Monday. But I had to postpone it a week since I can't get off work. Ironic since I'm a surgical nurse and work in the hospital. I have to take care of others but I can't get off work to take care of myself. *sigh*. My Dr. said I can't let it go another month. My maternal aunt had breast cancer and also my paternal great grandmother. I don't know about my paternal grandmother as she died of MS at age 39. I've had regular mammograms, with my last one being this past summer, but I got a letter stating I have dense breasts so MRI's would be better. I just turned 47. I've had one child who is 20, pregnant 4 times, losing the others to miscarriage and ectopic pregnancy.
I wish I would not have to wait another week to see the Dr. Did any of you experience the on and off itching? Right now it's not bothering me, in fact I though about canceling my appt last week. But I'm sure it will come back as it has in the past.
Any thoughts or sharing of early symptoms would be appreciated.
Thanks, Stasia
0 -
Stacie I hope your week goes quickly the waiting is the worst. My nipple is very red with some shiney patches on it. It does get itchy and I do get times worst than others I too at some points was going to cancel appointment when it didn't look very bad. At Xmas it bled and then crusted over, I used sudecrem and it recovered. The doctor gave me antibiotics cream that didn't help. My ultra scan and mammogram showed nothing, it was the punch biopsy that I was diagnosed by. Paget's is very rare so hopefully you will be OK, fingers crossed. Let us know how you go on.
0
