Paget's Disease of the Breast

kmrbailey · June 2016

Well I've been MIA for a while - have had to tend to my mother's brain/lung cancer treatment. While it has been busy, it was a good distraction leading up to my surgery. I had my left breast MX last Thursday (23 June). Had my first post-op doctor's appt today. All looks good so far. One of the two drains were removed with the second one likely to come out over the weekend. Pathology shows DCIS stage 0 and the lymph node tested negative. ER+/PR+ so follow up with the oncologist regarding ongoing treatments. All in all, so far I've been fortunate. I'm grateful for this group's support particularly when I was first diagnosed and had no idea about anything. Knowing that you all are here to share your experiences has provided me comfort. Even just reading through old posts or keeping up with the new ones - it's good to know I'm not alone. I do have one question - one of my cancer nurses indicated that I would likely talk to my oncologist about genetic testing. Is Paget's genetic or has anyone gone down this path? Just curious....

Thanks!

Kristen

Maya15 · June 2016

Welcome AnnieMae! Sounds so familiar: peeling, bleeding, almost getting better...and then the bra, the t-shirt, the shower water, etc rips the skin off and it starts all over again.

Kristen, congrats on the pathology! I had the genetic testing done, because I'm very young. Thankfully it was negative. Like other breast cancers, there can be a genetic component, but they don't test everyone. They will probably recommend it if you're young or if there's a lot of cancer in your family.

lou23 · June 2016

I was told they didn't think pagets was genetic but my grandmother had it aswell so my daughters are been very vigulant. It could have just been a coincidence. Would be interesting to know if any one else has other family members who also had pagets.

AnnieMae · June 2016

thanks everyone.

Well, I saw the oncologist today and he says I can't skip surgery. He did recommend removing just the affected area and I guess seeing how that goes, and then radiation.

He sent me to a radiation oncologist today too who told me my options were either to have a total mastectomy (which he did not recommend) or just a partial with follow-up radiation. He says the numbers were as good with that as with a total mastectomy.

The oncologist also referred me to a whole bunch of doctors. He wants me to get a new primary (I can't go back where I did before because of the program I'm in), and to have some moles removed, and to have Pap smear, and a colonoscopy, and probably some more things I'm forgetting. I've been writing everything on a large envelope and keeping papers and cards inside, but it's getting too complicated, so I went out today and got a little filer thing to keep info with me. Trying to fill out the into at the oncologist (about 7 forms) let me know just the history part is quickly needing a new management system.

I told my husband. I hope he's ok. He didn't say much.

They told me recovery from surgery is typically about 3-1/2 weeks.

It's about to be July. I love to swim, and I haven't done it at all yet this year. I'm starting to wonder if I'm going to get to - the biopsy knocked out more than a week, being sick knocked out a couple of weeks. I guess it's pointless to ask if I can swim after surgery.

Guess I still need to try to get my house in order, cook some meals in advance.

I'm not as afraid of the cancer as I am on the anesthesia.

And I don't know about pain after. Painkillers usually don't seem to work on me, but they DO make me vomit continually if I so much as move my eyes (and did you know it's impossible not to move your eyes?). So ... I haven't really adjusted to the idea that I guess I'm going to have to do this, barring some miracle.

AnnieMae · July 2016

As far as the genetic, now I'm wondering. My grandmother died of breast cancer just a few years older than I am. I spoke to my aunt last night, and she gave me more details.

My grandfather had a heart attack, and my grandmother was taking care of him (and still working, she was a nurse). I guess she got very worn down, he had another heart attack, she never went to the doctor. He had a third heart attack and died, and she showed her daughters her breast that day. My aunt said the nipple had inverted, and she had a sore instead of a nipple, and had to wear a pad inside her bra. Mine has been that way for some time (I thought it was related to a skin condition I also had).

She may have had lung cancer first. I am not sure. She had been having trouble breathing for a few years, and smoked pretty heavily. But by that point, she was in bad shape. I know she had a mastectomy, and chemo, but she didn't live very long after that. That was 33 years ago though.

I kind of wish I could get more certain details about their health. My mother also died of cancer, slightly younger, and I think it was stomach cancer.

My family doesn't seem to do very well. I also had a great uncle who died as a young child of cancer, and I thought that didn't happen veryoften in rural areas in the 1920s or so.

ilaam · July 2016

Hi you all,

I saw my surgeon today for 3-months post operation check-up. e. th. is OK

I asked him if I should avoid some products (deo, bra, etc) and he said "nothing at all, just continue to live as normal as you can". Wanted to share his reply with you as promised

hugs..

lou23 · July 2016

Brilliant, you can get on with your life now. Best wishes.

Pamo1999 · August 2016

Hi,

I'm going to the Doctor today and I'm hoping for a diagnosis.

I want this pain and agonizing wait to be addressed.

Has anyone else suffered from physical pain before pagets diagnosis?

Thanks

lou23 · August 2016

Hi Pamo, Sorry your in this position waiting for results, I did have pain in my breast for quite awhile before been diagnosed, I couldn't stand been touched, even my bra hurt me. I hope you have good results, my thoughts are with you.

Lou.

lou23 · August 2016

Hi Pamo, Sorry your in this position waiting for results, I did have pain in my breast for quite awhile before been diagnosed, I couldn't stand been touched, even my bra hurt me. I hope you have good results, my thoughts are with you.

Lou.

EJMsMOM · August 2016

Hi ladies! I'm new here and have found this forum very informative.

I went to the BS on Monday after having a mammo and US that came back clear. I have had itching and a rash and just felt something was off. She did a breast exam and then ask me how long my nipple has looked like this...I had NEVER heard of pagets and honestly didn't ask any questions because she had decided to do a biopsy right then and I was so worried about that damn needle that I completely forgot to ask any questions...I had to ask the nurse what she was doing the biopsy for because I couldn't remember the name. Now, two days later and this forum I'm completely convinced that's what it is. I go in Monday the 15th to have the stitches remove d and to discuss my results.

glennie19 · August 2016

EJMsMOM: Best of luck to you. We are here if you have any questions.

glennie

shrtkay · August 2016

Hello! I am new here and have read many of the posts in this discussion and thank you all for you openness as it has obviously helped many people.

My father was recently diagnosed with breast cancer. It has been determined that he has the BRCA2 gene mutation. I realize that because of that, I may also have this same gene mutation. I am just 33 years old and I have never gone for a mammogram, just a regular breast exam during my yearly gynecological exam. Just recently I have been getting this ITCH on my left breast. It feels like it is behind my nipple and cannot be reached. Perhaps about 7 years ago I also got a freckle on the same areola. The OBGYN did not seem concerned about it, and it has never bothered me. Now I am wondering though if perhaps something more. There is also a bit of redness under the nipple where the itch occurs, and some flakiness.

I suppose my question is... does anyone know if BRCA2 could cause a higher risk for Paget's? I do not know if I have this BRCA2 mutation, but I am more worried now because of the chance.

How long would you suggest I monitor the itch before I see a doctor about it?

ALSO: What doctor would you make an appointment with to get checked? I don't actually have a PCP that I see often as I am otherwise very healthy and rarely have concerns. Do I call a dermatologist or see the OB/gyn? Should I instead attempt to see a new PCP?

Thank you all for any advice you may be able to give me.

-K

glennie19 · August 2016

Hi K,

I think that if your father has the BRCA2 gene, you should get tested for it. If you are also positive, then closer monitoring would be warranted. I don't know if it puts you at a higher risk for Paget's in particular but as you know, it does put you at a higher risk for BC in general.

I think any doctor could order the test. Do you have a good relationship with your OB/GYN since you are already an established patient there? You can explain your concerns and that Dr could order the BRCA2 test, and perhaps consider a biopsy of the nipple area if it seems warranted. Remember there can be perfectly BENIGN reasons why you have itching and flakiness. Have you tried anything for it so far?

Alternately if the GYN doesn't seem like a good person to follow your requests,, then seeing a dermatologist or a new PCP is also a good idea. Derm could prescribe something for the itch/flakiness, and then follow up if things don't improve.

BRCA2 test is expensive,, so you want a DR who is on your side and willing to go to bat for you with the insurance company,, in case they make a fuss.

shrtkay · August 2016

Thank you so much for your reply. I guess because of the recent diagnoses of my father's condition I am being a bit paranoid. Is there something you might suggest using topically to relieve the itchiness and redness? I would be more than willing to try that and perhaps settle down some before jumping to conclusions here. If something topical would not help, then I would likely speak with my ObGYN as she is the last medical professional that I have seen regularly having given birth in February.

Thank you so much again.

glennie19 · August 2016

I would suggest seeing the doctor. It is possible that maybe a topical steroid cream might help,, but maybe you have a fungal infection. ( I know, ick,, but it happens) so it would be best if your OB checked it out. And you can ask about getting the BRCA test done.

I don't think of you as being paranoid,, I think of you being proactive. After all, a family history is a concern. Chances are, it is just a benign skin condition, and maybe a week or 2 of a cream will clear things up.

shrtkay · August 2016

Thank you again, glennie. I have recently been to a water park with the kids, so anything is possible. If the itching does not subside by weeks end, I will call the doctor and make an appointment. Very grateful for your advice.

Seraphima · September 2016

Hello all,

Trying to branch out in the forum, and sort out everything I'm learning and what's happened to me. I keep hearing how rare Paget's is.

I'm done with surgeries, planning to start rads in a few weeks. I also just found out today I'm triple-negative, which is kind of an opposite prognosis from Paget's? I am slightly worried that by disturbing a cancer that wasn't aggressive I might have to face one that is.

Something I'd really like to know, and it don't know if there is data on it, is about those who are triple-negative Paget's, and I'd really like to know how things go for several years. It would make me feel better to know a few folks who were both and never had any recurrence, even though that would just be anecdotal.

Ah, I've learned too much too recently, and haven't been able to take it all in yet. But anyway, I'm one of us

lessharp · September 2016

Seraphima,

I am only 1 year out. I had mastectomies and no other treatment. My HER2 status was never tested...but I was Neg on ER/PR. My oncologist says I have a 1% chance of getting breast cancer again....that I am virtually cured. However, I am a little confused about your diagnosis. Your status says Stage IIB...but that you have DCIS...so that confuses me. DCIS is stage 0, from what I understand...so Stage IIB indicates that it spread to the lymph nodes (or tumor was larger than 5cm), and your status says your nodes were negative.

STAGE IIA and IIB

tumor less than 2 cm and/or lymph nodes under the arm involved (IIA) OR
tumor greater than 2 cm and no lymph nodes under the arm are involved (IIA) OR
tumor greater than 2 cm but less than 5 cm and lymph nodes involved (IIB) OR
tumor greater than 5 cm but no lymph nodes involved (IIB)

As you've probably read, Paget's is very treatable and prognosis is variable depending on node involvement, etc. If your nodes are negative that puts you in a very good place....

Leslie

Seraphima · September 2016

Thank you, Leslie.

Now I'm a little confused about the stages. I've gotten different info from different doctors, but I see it doesn't seem to fit II from what I read (I don't have all of the info though). They originally said I was stage 0 and there were just cells - DCIS - and the Paget's. Nothing was showing up on any of the multiple imaging diagnostics. But when he went in to do surgery, he found a 4cm tumor and I ended up with a partial mastectomy. I was told that changed the staging. But no, there was no lymph node involvement found, and after the second surgery they tell me they are not aware of any cells left, but tell me there is a 30% chance they are there. (So that's why the radiation). But it seems they've changed the stages, and now I'm confused. I've updated my profile as I get more info. But I am wondering if there's been some mistake?

I hope the Paget's has more to do with my prognosis than triple-negative. I told myself in the beginning that it wasn't cancer, but it turned out to be. And then I comforted myself that it was Paget's and i was seeing virtually 100% survival rates. Now with the staging and the triple-neg I look online and see a much more bleak picture. I'm probably more easily alarmed about it because I lost both my mother and my grandmother when they were about ths age, and not too long ago a very dear friend who was only in her mid-40s. But I certainly don't want to have a more negative outlook than is warranted.

Seraphima · September 2016

Wait, I left your post and found an article. Now I see what you are saying. Tumor greater than 2cm and no lymph node involvement is IIa? So that IS what it's supposed to be? I think that's what I was told too, maybe I hit the wrong selector button to get the IIb on there. It's been such a roller coaster and the info seems to keep changing, so I am having difficulty sometimes remembering who said what when. Maybe that's what it's supposed to be?

The DCIS I was told before surgery, and I don't remember another name to change that too. I'm not sure if it's accurate or not, because they were thinking there was no tumor.

lessharp · September 2016

Seraphima, I'm sorry about the confusion. Do you have any copies of the pathology report? If you had DCIS and Paget's, it should still be stage 0. My tumor was 3.7cm....and I was still staged zero, as there was only DCIS.

http://www.breastcancer.org/symptoms

Seraphima · September 2016

I did get copies of the pathology report the other day. I'll look over them and see if I can figure that out. Tell me it's only DCIS and stage 0 and I will feel better. I have an appt with the RO tomorrow, and the surgeon Monday. I'll see if they will tell me, if I can't figure it out. Thanks - that would make me feel better!

Maya15 · September 2016

Hi Seraphima, if you look on your path report, if it says "invasive carcinoma" (either ducal or lobular) to describe the breast tumor, then it's invasive and you use the staging depending on size. If it says "in situ" then it's stage 0 even if it's large, because it cannot spread outside the breast.

Seraphima · September 2016

"Negative for invasive tumor" -so it IS DCIS then? And I can change the grade to 0? (Happy dance! Some good news to go against the triple-negative )

The oncologist did not initially get this report, so maybe that's where confusion came in. Thank you!

Maya15 · September 2016

Have your RO confirm it tomorrow, but yes, this looks like really good news!

Butterfly65 · September 2016

Hello, I am new here. I was diagnosed with Paget's Disease October 2013. I also had IDC of the left breast. During treatment I had to stop to have vascular bypass surgery in my left leg. This lengthened the time of treatment. I am happy to say as of today I am cancer free but I am having a hard time accepting that the cancer has so changed my life. I am a senior and have periods of depression and lack of energy. Is this anyway normal this long after ending treatment in December, 2014?

Moderators · September 2016

Hi Butterfly65-

Congratulations on being cancer free! That's a huge milestone. Many members who reach no evidence of disease still struggle with coming to terms with what they've been through and how cancer has changed their lives. It's a difficult adjustment, and one that takes time. Depression is normal, you've been through a lot, physically and emotionally. Have you spoken to your doctor about how you're feeling? Some members find medication helpful, while others use therapy, meditation, and other techniques to help manage the lasting effects of their diagnosis. It's a process, and having a good support system helps as well.

We hope you'll find support and other members to connect with here in this community, and that you're able to start healing and adjusting to the changes you've been through. We're all here for you!

The Mods

Butterfly65 · September 2016

Thank you for the warm welcome. I would like to share a little more of the past 3 years since I was diagnosed with the breast cancer.

Just 11 months before my husband was diagnosed with bladder cancer. Fortunate it had not broken through the wall. A laser treatment

was all he needed at that time. It since has come back 4 times with needing the same treatment.

Also during this time he needed vascular surgery from his stomach down both legs--this was found due to having xrays for his cancer.

I had vascular bypass surgery for behind my left knee--found while having my toe nails trimmed due to diabetes.

One month after my left breast surgery I also came down with 2 blood clots 2 times in my right lung along with pneumonia and empyema.

Due to these 3 things I had to have a chest tube put in and after 10 days in the hospital was sent home to have the chest tube in for still

another 6 weeks. Along with the "old age ailments the body has been through 1/2 a war.

It really has been a rough 3 years but I sit here today thankful to the good Lord for my husband-my life.

I know that there are many worse than us.

Moderators · September 2016

Butterfliy, you and your husband have certainly been through it! We're glad to hear you're both on the mend though.

Please come back often, ask lots of questions, and you're sure to find the support here gratifying. Thanks again for joining and sharing!

--The Mods

Paget's Disease of the Breast

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