Paget's Disease of the Breast
Comments
-
Happy thanksgiving girls hope you have lovely day with your families
0 -
I'm currently having radiation 20 sessions having my 5th one today, I was wondering if anyone here who had Paget's and didn't have a mastectomy, nipple removed and then had nipple reconstruction? I've lived with this for 3 months I thought I was ok but I'm not I can't even show my husband my breast,and I decided I want/need nipple reconstruction but I'm wondering as it's sort of square at the front do they put fat in then do a nipple or is it more complicated than doing a nipple I'm seeing my breast DR in few months but I don't think they will do nipple reconstruction only tatoo, but I will have it done elsewhere, any info is appreciated
0 -
I haven't had it done, Lorri. Hope someone will answer you,, but you may want to start a new post under the SURGERY thread,,, where more people may see your question. Paget's is kind of a lonely place,,,, since it's so rare. Perhaps title it: Nipple reconstruction, anyone???
All the best, glennie
PS. Also,, can you get a plastic surgeon consult? I believe that is who you would need to see. A regular surgeon wouldn't do this.
0 -
thanks for response Glennie I've just put a post in the surgery section, I think I will need plastic surgeon alright
0 -
I posted earlier in the worried but not diagnosed area. I am 37. I had a clean mammo last year of the right breast where there were several large cysts-all benign. For about 6 months my left breast has been itching like something crazy-I mean I just can't stand it. It's always right around the nipple area. I have been noticing slight changes in that nipple-a slight thickening of the areola that kind of blends into the nipple (this is new),a slight flattening of the nipple, and a small scaly patch of darkened, almost shiny/crepey skin on the areola. It's definitely different. I also have sharp stinging pains from the armpit to the nipple. My doc sent me to derm where they did a punch. Waiting now. How nervous should I be based on symptoms? I know you can't diagnose just wanting other's takes. Thanks
0 -
Hi shutterbug5, hopefully you won't be here very long, you've done the right thing getting it checked out. A biopsy is the only way to diagnoise Paget's it doesn't show up on mammogram or ultrasound. I had a rash on my nipple december15 wasn't always itchy just occasionally but when it was it would itch like mad no discharge from nipple,it was aerola only, it didn't heal I went to the dr was referred to breast clinic and that dr thought it was ezcema but did mention Pagets, biopsy took ages to come back, I'd looked on Internet and my nipple didn't really look like the pictures of Paget's, I was shocked when it came back positive for Paget's. Following week I had my nipple removed in October, I'm half way through 20 sessions of radiation at the moment, hopefully yours will be ezcema or something else I'm 46
0 -
shutterbug5: glad you found your way over here. I answered you at your original post. I hope you get the results soon. I know it is hard not to worry. Did they give you an idea of when you would get the results? Can you call them and ask when they think the results will be back? We know the waiting is hard. Hang in there. We are here for any questions you have!!
glennie
0 -
Hi Ladies, Did any of you discover that you had Pagets as a recurrence I had a breast lift on my good breast after stage 2 of my DIEP. This was done 8 weeks ago. About 4 weeks ago my breast nipple started to itch and burn. I have gone to my PS they think that it is just the normal recovery. But I have not heard to much about itchy nipples after breast lift. The itching makes me want to tear them off. Nothing seems to relieve it. Help. Should I call my MO.
0 -
Hi Jen! I had my lift on my "good breast" about 7 weeks ago. I too had incredible itching...for weeks. My plastic surgeon and her RN both told me ahead of time to expect the itching but its intensity actually took me off guard when it came. Having had Paget's on the left breast, I was of course very concerned about this symptom as it was almost exactly like the Paget's. However, I have coincidentally since had visits with my oncologist and my breast surgeon in addition to my plastic surgeon as part of normal follow up and all agreed that it was part of the healing. I have found some relief with Aquaphor as well as silicon gel on my scars. It has just recently begun to subside. If you're concerned, certainly seek additional opinions. It's always better to be safe than sorry. Good luck!
0 -
jen1, I've had intense itching and burning too, I have been told it is from nerve damage during the surgeries. Mine was so bad they put me on nerve pain meds (gabapentin) and that really helped. It takes time but it does go away.
0 -
Thank you ladies so much for responding
0 -
Hi everyone! I'm a 65-yr old, retired, grandma who has met the requirements for joining this exclusive club!
My left nipple is raw-looking, and very pink with a definite loss of pigmentation. I have dark-brown skin, so this anomoly is quite obvious. There have been times that my nipple oozes a clear-looking fluid and is itchy. It's been this way for months. My bras aren't lined with jagged steel so I couldn't figure out for the life of me what could have caused this... and why was it only happening to one breast? Weird. Since I'm 65 years old, I just chalked it up to old age but at the same time, I knew something wasn't right. I started looking for answers on the Internet and that's how I found this website. I'm not a medical professional, but I believe in being informed about my own health as much as possible. It also helps me not to be shocked about certain things. I like being informed.
A couple of weeks ago, I got a letter that it was time to get my annual mammogram so I made a morning appointment and got it done. The technician also noticed my very pink nipple and she asked me what was going on with that. I told her I didn't know but I knew it wasn't normal. They called me later that afternoon and told me that "they saw something" in my mammogram, so they scheduled me for another mammogram and sonogram the next day at a hospital imaging center and told me the radiologist would come out and give me the news while I was there. When the tests were done, the radiologist came in and told me that all was clear. He told me there was a small cyst filled with fluid in the breast but that it was nothing to worry about and to just keep having annual mammograms to ensure it didn't change. Even so, I thought I'd better see my ob/gyn and let him take a look at my left boob because there is something definitely not right with my nipple. I saw my ob/gyn two days later and he said "I want you to see a dermatologist to have that biopsied". He said there were a lot of things it could be and I said, "you mean like Paget's disease?". He said "oh, you know about that?" I said "sure I do. I looked it up!" Anyhow, he kind of blew it of off but referred me to a dermatologist who's earliest appointment was 2 months away. Since my daughter works for a dermatologist, I called her and told her what was going on. She texted her boss doctor at home that night and he told me to come in the next day and said he'd do the biopsy. I went in this past Tuesday and the results came back from pathology yesterday and wouldn't you know it: Pagetoid carcinoma in situ
I was diagnosed with bladder cancer in September 2015 and went through 3 months of chemo before having my bladder removed in March 2016. I had my routine CT Scan and follow-up appointment with my urology surgeon just yesterday and he told me that if breast surgery is required, he'd strongly suggest I not opt for a lumpectomy because it requires chemo. I think they're concerned with the affect of chemo on my kidneys, having already gone through it for the bladder cancer. Chemo was very hard on me and I ended up in the hospital for 4 days to get blood transfusions because my blood levels got dangerously low. They told me that my life was at risk. It was so bad that they cancelled my last chemo treatment and said "you're done". I don't think they want to risk that again.
I've already made an appointment with a breast specialist/surgeon and will see her next Thursday. She is in the same surgical office as my urology surgeon so I think they probably know each other. My sister, who is 5 yrs younger than me, is a retired nurse and a breast cancer survivor as well. She was diagnosed about 9 years ago with Invasive ductal carcinoma and invasive lobular carcinoma adenocarcinoma stage 1. She had a double mastectomy and reconstruction and has done well ever since. There is a lot of cancer in my family but I'm not aware of any other cases of breast cancer.
My one worry in all of this is that I am "day-care" for my 6-month old grandbaby 5-days a week while his parents work and how breast surgery will affect my ability to do that. Of course I understand that my health comes first, but I also know the position this puts my daughter in if I'm incapacitated. Not sure how that's going to work out at all, so I'm concerned.
I don't believe in whining or wringing my hands and cursing God for what is. I believe that all things happen for a purpose and in His good time, and that even in dark times, I am blessed beyond measure. I'm just ready to get on with it and do whatever comes next. I'll know more after my appointment on Thursday.
Nip_Van_Wrinkle
0 -
hi nip van wrinkle. I'm very sorry this had happened to you especially as you have already hAd cancer recently.
I am 46 and I wax diagnosed with Pagets in October from biopsy I had Pagets and DCIS,Pagets isn't treated with chemo you either have a lumpectomy. Unfortunately this involves nipple removal and radiation, or mastectomy with no radiation.
I had my nipple removed in October didn't get clear margins as I had 3cm of Dcis had another operation in November both day cases and I started 20 sessions of radiation on 4th January I just finished last Wednesday. I was absolutely shocked devastated and angry to have Pagets but it's very treatable with the best possible outcome
0 -
lumpectomy involved day case and I couldn't lift for a few days Was tender I didn't drive for about a weekHealing was quic
0 -
My brother has had radiation because he has glioblastoma (brain cancer). I really don't know much about the effects of radiation. But it sounds like it's not the same as chemo? Looks like I'm going to have to do a little research.
From what I've read (documents from NIH, Mayo Clinic, Komen.org, WebMD, etc), surgery is the usual treatment but radiation or chemotherapy are also possible treatments depending on the circumstances. I haven't a clue yet what my circumstances are since I haven't yet had my first appointment with the breast surgeon so I don't want to get ahead of myself. I should know more soon.
0 -
no radiation isn't like chemo, it's Monday to Friday weekends off for however many sessions you need, my side effects were tiredness and I was very emotional, skin can be effected red looking like sunburn I didn't have any skin problems, look up radiation on this website its great for information and support.pagets is very rare
0 -
Thanks, Lorri. I will.
0 -
Nip, sorry you've been diagnosed.
The treatment will depend on what they find with the Paget's. In most cases there is an underlying DCIS or IDC. Whether or not you need chemo will depend on the pathology and size when they remove it, but it's not dependent on what surgery you choose. I've been having chemo for over a year because the underlying cancer was very aggressive and HER2 positive.
The recovery is definitely much less if you choose lumpectomy/radiation. With mastectomy the recovery will take several weeks and you may be unable to lift a baby for longer. Your breast surgeon might want to do an MRI first because it's better at showing any underlying cancer. Wish you the best of luck.
0 -
Thank you for your response, Maya. My husband and I are both retired. Although I am the primary care-giver to our grandbaby, my husband knows that IF I have to have surgery, I'm going to need him to step in and do baby lifting and carrying for a while. He's more than willing to do that. If it becomes necessary, we'll work together so that I can recover properly and still care for the baby so there's no hardship on my family. We'll at least try it to see if it's doable. I don't have a clue yet what's going to happen but I'm trying to plan ahead a little.
0 -
I had my first appointment with the breast surgeon today. She told me that in terms of appearance, my nipple is the classic example of Paget's disease. They didn't have the images from my mammograms which were done at a different facility and said they'd get them; not to make a diagnosis, but just to examine them for themselves. They made an appointment for me to have an MRI Monday morning. As soon as they complete the MRI, I'm to head back over to the breast surgeon's office and I'm assuming she'll give me the results. So, I still don't know much yet and won't till the MRI is done.
0 -
that's good that things are moving for you nip van winkle, fingers crossed you have Paget's and that's all, I had dcis as well but all clear now try not to worry.
0 -
Nip, I had Paget's and underlying DCIS that was not discovered until surgery. I had mammogram and MRI but no one picked up on it. I opted for a mastectomy cuz I didn't want to do radiation. The standard is either mastectomy or lumpectomy plus rads. No chemo, if it is Paget's and DCIS,, if something else is there, then chemo could come into the plan. Hopefully that will NOT be the case for you. DO keep us posted. We are sorry you are joining us Paget's sisters.
0 -
My MRI was this morning. It took an hour which is a bit longer than I thought it would take. By the time they pulled me out of the scanner, my shoulders were numb. Anyhow, the conclusion from the images is that there are NO underlying tumors or disease. My breast surgeon took her time reviewing the results and even though she was sure of what she was seeing, she reached out to breast radiology specialists for them to have a look as well. The diagnosis is that I have Paget's disease, but it is truly in situ, stage 0 and is confined ONLY to the nipple! In terms of breast cancer, the news couldn't be better. The breast surgeon and I discussed lumpectomy versus mastectomy and we are in agreement that a mastectomy in MY particular situation would be overkill, and that a lumpectomy is the right treatment for me. She doesn't know yet if I will require radiation. I may not need it. That won't be determined until after the pathology report following the lumpectomy. My breast surgeon is going to Africa on medical business next week but she wants to do the lumpectomy the week after she gets back which should be sometime during the last week of Feb/1st week of March. It'll be done in outpatient surgery so I'll go home the same day. She said the surgery should take about an hour. She said she'll send pain meds home with me but I probably won't need them. I'll have stitches that will dissolve on their own so I won't have to go in for stitches removal once healed.
So, that's the skinny for now. I should be hearing from hospital scheduling within the next day or two to get everything set up.
0 -
nip van wrinkle, that's fantastic news delighted for you, the surgery itself is day procedure and uncomfortable more than painful stitches willl dissolve and will be nice n neat, it's the best news.let us know how you get on best of luck
0 -
great news rip van winkle, I hope all goes well. Mine was very similar but unfortunately couldn't get a clear margin, I eventually decided on masectomy, but I wish now that I hadn't as it has left me with lymphoedema in arm hand and chest. I so wish now that I had tried again. Good luck.
0 -
> great news rip van winkle, I hope all goes well. Mine was very similar but unfortunately couldn't get a clear margin, I eventually decided on masectomy, but I wish now that I hadn't as it has left me with
> lymphoedema in arm hand and chest. I so wish now that I had tried again. Good luck.
Hopefully there will be no surprises when my lumpectomy is done. Thanks for the reply and the good wishes. By the way, my screen name is nip_van_wrinkle, not rip_van_winkle. It's my lame attempt at a play on the name "rip van winkle" with a wink and a nod to my "nipple" cancer and me being an old fart (wrinkle).
My surgery has been scheduled for 3/3/17.
0 -
My lumpectomy was done yesterday. The surgery was at 7:30 am and I was back home at 11:00 am! I was pretty sleepy for the rest of the day. The good news is that my surgeon said she didn't have to cut very deep. I am wearing a contraption that looks like a thick sports bra but she said I could take it off in a couple of days. Since the stitches are internal, my boob really doesn't look that bad. I still have a breast, it just doesn't have a nipple. They gave me a prescription for pain but the pain wasn't too bad. It kicked in a little bit last night and I did take one pain pill at bedtime but I probably won't need to take anything stronger than a tylenol today. Thankfully, I'm not as sore as I thought I'd be.
I should get the results of the final pathology report by the end of next week to determine if I'll need radiation treatments or not. I'm thinking I won't need them, but we'll see.
0 -
That is great news so pleased it has all gone well.
Hopefully you will need no more treatments.
Rest and take care x
0 -
I second Lou's sentiment! Happy for you Nip! Rest and be well.
0 -
Quick question for all - has anyone had genetic testing done? I just got my results earlier this week - negative for mutations in BRCA1 and BRCA2 (yay!) but positive for mutation in CHEK2 (boo!). I will follow up with my geneticist at the end of the month to determine next steps but I was curious if others with Paget's have tested positive for a mutation in CHEK2. Certainly BRCA1 and BRCA2 are more common but would be interested to see if there's any connection with Paget's and CHEK2.
0
