Breast Cancer Alert

I received an email from Grannymar yesterday asking me to forward a message which she had received, to as many people as possible.

“Women, PLEASE be alert to anything that is not normal and be persistent in getting help as soon as possible. Paget’s Disease: This is a rare form of breast cancer and is on the outside of the breast on the nipple and areola.  It appeared as a rash which later became a lesion with a crusty outer edge.  I would never have suspected it to be breast cancer but it was. If this had been diagnosed as breast cancer in the beginning, perhaps it would not have spread… “

The person who left this message wanted it to be delivered to women everywhere. This lady developed a rash on her breast similar to that of young mothers who are nursing. Because her mammogram had been clear, the doctor treated her with antibiotics for infections. She subsequently died from this rare form of breast cancer.

pagets-disease-of-breast

Paget’s Disease of the breast is an uncommon form of breast cancer which first shows as nipple changes. This type of breast cancer starts in the breast ducts and spreads to the skin of the nipple and the areola (the dark circle around the nipple).  It occurs in around 1% of all women with breast cancer. Men can also get Paget’s disease but this is very rare.

The symptoms of Paget’s disease look like other skin conditions such as eczema or psoriasis. However, there are differences.  For example, Paget’s disease affects the nipple from the start while eczema affects the areola region first and only rarely affects the nipple.  Paget’s disease usually occurs in one breast, while other skin conditions usually affect both breasts.  Approximately half of patients with Paget’s disease will also have an underlying lump. Because Paget’s disease can look like other skin conditions, it can be difficult to make a diagnosis.

One of the biggest problems with Paget’s disease of the nipple is that the symptoms appear to be harmless. It is frequently thought to be a skin inflammation or infection, leading to unfortunate delays in detection and care.

“What are the symptoms?

1.  A persistent redness, oozing and crusting of the nipple causing it to itch and burn.

2.  A sore on the nipple that will not heal.

3.  Usually only one nipple is affected.

Many women are not aware of Paget’s disease. If by passing this message around, we can make others aware of it and it’s potential danger, we are helping women everywhere. This message should be taken seriously and passed on to as many of your relatives and friends as possible; it could save someone’s life.”

Information Source:  Action Breast Cancer, a programme of the Irish Cancer Society.

22 Responses to Breast Cancer Alert

  1. Grannymar says:

    Thanks Steph.

    We all need to be aware of what is normal for us and what is not!

    • A GoodFriend says:

      hello,
      my friend came down to visit me and she told me about her brest , we we’re both pregant together and we both breastfeed.. well she asked me if my nipples look any differnt i said no y she showed me her’s … there really red and very bumply? looking i hate to say it but Deformed.. and i know when she was breastfeeding they looked like mine normal.. is it cancer?

      • Steph says:

        A GoodFriend – Hello

        I’m not qualified to give medical advice.

        If your friend has reason to be worried, then she should go to her doctor for advice. It’s better to be safe than sorry.

  2. annb says:

    My friend, and childhood partner in crime, survived Pagets – she noticed the lesion while breast feeding her 18 month old daughter, she acted immediately – and is very much enjoying life with her daughter now aged 9. I had a wonderful afternoon with both of them on New Year’s eve. Her vigilance has ensured that her 3 beautiful daughters get the chance to grow up with an amazing woman who’s kindness and spark of divilment would have been a tragic loss to the world. Amazing work as ever Steph.
    Cheers
    Annb

  3. Steph says:

    Grannymar – THANK YOU for bringing this to my attention. I had never heard of Paget’s disease of the breast before. As many women, including myself, suffer from chronic skin conditions, it’s all the more important to be informed and be extra vigilant as well.

    Annb – It’s great to hear a good news story for a change. Thank goodness your friend was vigilant and took action quickly. Your story really brings home the reality of this awful disease.

    All women (and men) should be alert to ANY changes in their breasts.

  4. ennoconn says:

    Thanks for highlighting this still little known disease. Your readers may be interested to note that this Wednesday 4 Feb is designated World Cancer Day. You can sign an international cancer declaration online and make your voice heard. If anyone is interested you can read more info here:

    http://beyondbreastcancer.wordpress.com/2009/02/02/world-cancer-day-4-february-2009/

  5. Steph says:

    Hello! ennocon

    Thanks for visiting and for bringing ‘World Cancer Day’ to my attention.

    I shall be following your blog with interest. Keep it coming!

  6. ennoconn says:

    Thanks Steph – I was excited to come across your blog and am very impressed with the breadth and quality of your postings. Keep up the good work!

  7. cool rain says:

    Hi Steph, thought it was important to bring this to the attention of your readers:
    Cancer warning on menopause drug
    http://beyondbreastcancer.wordpress.com/?p=84/trackback/

  8. Steph says:

    cool rain – Thanks! I appreciate that link.

    I would have thought that all women who’ve had breast cancer, would be very wary of any kind of hormonal treatment? I know I’d rather put up with the symptoms of menopause that run the risk of a recurrence of breast cancer.

    I’m a big fan of John Crown. He’d soon beat our health service into shape, given half a chance 😐

  9. Steph 95 says:

    Steph,
    I have an appointment on Wednesday with my OB to have my right breast examined. I’m concerned with the possibility of Paget’s Disease based on my symptoms. I have extreme itching from the nipple out past the areola in a pie slice shape, so bad that I want to just rip the skin off at times. The skin past the areola is thick and resembles orange skin. I’ve also had very sharp pains and either a burning or freezing sensation in my nipple. The itching and pain is not constant, but if I begin to itch, it gets worse. I’m afraid of being told it’s just a rash and given a prescription for a cream. I’ve tried Aveeno, Eucerine Calming body wash, oatmeal baths. Nothing seems to help.

    Does any of this sound similar to what you’ve experienced? Should I push for a biopsy or mammogram? Oh, I’ve tried to search for lumps, but I can’t tell if there is anything or not. I just finished nursing my son 7 months ago too.

    Thank you a bunch for any info!!

    Steph (also)

  10. Steph says:

    Hiya! Steph and welcome.

    I’m sorry to hear of your situation. I can’t advise you medically but I do think that you’re doing exactly the right thing by getting yourself checked out.

    You sound to me like you are being very rational and logical about your problem. Don’t be afraid to state your worries up front to your obstetrician so that he realises you are already well-informed. Write down your list of questions so that you can refer to it if necessary.

    I wish you the very best of luck with your appointment and if you would like to, don’t hesitate to come back and tell us how you got on.

    From one Steph to another – fingers crossed!

  11. Steph 95 says:

    I will certainly post. Appointment is tomorrow afternoon. The itching/sharp pain in my nipple is driving me nuts at the moment. Whatever it is, I just hope to get the annoyance to stop!

    Post later!
    Steph

  12. Steph says:

    Hope the appointment went well, Steph

    Don’t put yourself under pressure to write about it unless you feel it will be of help to you. Take care!

  13. marion says:

    hi, i;ve been trying to find out what is wrong with my breast. i had a mammogram and a biopsy done, all came back neg. but i still have problems. my daughter looked up breast prob and i have every systom of paget. seeing a specialist again tomorrow so i’m going to ask him about paget. its been 5 months now since i first noticed a prob and no relief, its driving me crazy, pain and itch, scales, oozing. hope to get some results started tomorrow. this site is great, thanks

  14. Steph says:

    Marion – Hello and welcome.

    Thank you for the compliment. I’m delighted to hear that my blog has helped you.

    I hope your appointment goes well tomorrow. Keep asking questions until you get the reassurance/further investigation that you deserve. Best of luck!

  15. Issy says:

    I have just had a biopsy done of my nipple after having all the symptons descibed in Paget’s disease. As others with Steph, it has been driving me crazy for at least four to five months. I have had a ultra sound, been given cream and as yet no answers. The biopsy was done on Monday and I was told it would take up to two weeks for the results. The consultant said that he was sure it would come back negative and basically said if it is a skin condition then live with it……..great if it is a skin condition, that I will be over the moon about rather than anything sinister but live with it, that I am going to find difficult. Any suggestions if this is JUST a skin condition. I just feel that I am being a pest and that it is trivial.

  16. Steph says:

    Issy – Hello!

    I’m not surprised you’re concerned. I would be too in similar circumstances. I hope very much that the tests will be able to put your mind at rest. If you continue to intuitively feel that something more serious is wrong, then don’t hesitate to request further investigation. Best of luck with the results!

  17. Vanessa says:

    Hello,

    Im 24 and have been dealing with the symptoms of pagets for over 4 years. I have done every test and tried every cream. I have been seeing a breast specialist since 2006 and have had a ductectomy with him 2 years ago, as I had A-Typical cells on my right breast. I have asked in about paget’s disease over and over but since I had itching on both breasts and I have no family history of cancer he didn’t think it was likely. Anyway, my ductectomy showed a hyperplasia and I was told to have yearly check ups. Well, since last year I realized convinced myself that my itchy nipples were perhaps psychological as I have problems with hives and rashes due to stress before. So I forced myself to control my scratching and even put bandages on to over scratching.
    Since I started this about 8 months ago the left breast has completely healed and does not bother me at all. But the right nipple, the oner I had surgery on, has continued to have the symptoms of pagets. Even progressing from scaling on the nipple to now scaling more on the areola (which I was told is a more advanced stage). Well this week I went for my yearly check up at my breast specialist and NOW he is worried about Pagets. He took a skin biopsy and is expecting it back by thursday when i see him again. I am terrified. Im 24 and have no history in the family.

    Do you think I should be worried? Please let me know of any information that can help me compare the symptoms of pagets to those of serosis or dermatitis.

    Thanks

  18. Steph says:

    Vanessa – Hello and welcome!

    I’m sorry to hear your story. I wish I could say something to ease your worry but I’m not qualified to advise you medically.

    If it were me… I would prepare myself while waiting for the appointment, with a list of questions which will cover all eventualities. Write down all your worries about Pagets. On a separate list, write down all questions which will be relevant if you’re told the biopsy is clear. That way, you’ll cover most eventualities and get most benefit from the appointment. It might also help to put your mind more at rest over the next few days.

    I wish you well with it. Regards.

  19. lene09 says:

    i have been suffering for almost four years now with the symptoms associated with the paget’s cancer of the breast…

    the first tym i had the itching sensation and scaly skin on my nipples was when i was nursing my son…it alarmed me that i got to see my ob and had my consultation…that time, both of my breast was infected…my doctor instruct me to take antibiotics and creams…after some time my right breast was treated but the other one was left untreated..now, i’m still suffering from this rare disease.

    whenever i have spare time, i browse the net and try searching for solutions to my problems through reading…with my surprise, a blog came my way, this blog contains the story of a woman which then too suffered from confused nipple dermatitis/paget’s…it was written by sister, aiming to reach as many woman as she can only to warn us of this dreaded disease…as i was reading it, tears rolled down my cheeks….that point on, i made it a point to reach every possible answers to my queries about this paget…
    is it possible that i have paget though the first time this symptoms occured on both my breast?
    so far there is no fluid coming out directly from my nipple niether blood…the only fluid on my breast was on the areola, which is clear to light yellow in color, but it is not pus..

  20. Steph says:

    lene09 – sorry not to get back to you with a reply to your comment.

    I’m in hospital at the moment but wish you all the best with the problems you face. Regards, Steph

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