Paget Disease of the Breast

[lhalper]

I am very confused. My wife was diagnosed with Pagets disease and had a lumpectomy in September two month later they found an underling mass that was her2 positive 3+ and she had a mastectomy.

Lumpectomy September 2004 Pagets Disease
Mastectomy November 2004 underling mass 2 inches behind nipple
Her2 pos 3+
Lump node negative
Possible lymph vascular invasion
Invasive cancer
2mm clear margin
ER- PR-
Grade 3
Tumor 2.1 cm
Pet scan in December was negative
Chemo adriamycin & Cytoxan Taxol & Herceptin
Herceptin for one year
Wife age 43
Mother died of Pagets disease at age 51 after 3 ½ year battle
Father died of unknown origin caner at age 61 after 3 months


All the information I found on Pagets disease is very dated. According to what I found the survival rates for an individual with Pagets disease with a palpable mass is poor. The five year survival rate was between 20-60% and depending what you read. The ten year survival rate are even lower. I have found no studies with regard to Herceptin as it relates to this disease. Has anyone had experience with this type of cancer? Does anyone know of any recent studies with regard to this disease and the effect Herceptin has on survival?

My wife has had a total personality change that started the May 2004 before she was diagnosed. At times she is paranoid, aloof, nasty, and is always focused on death. I love my wife very much, but at times she is very difficult to be with. When she does interact with our young children she loses patients very easily and it usually ends badly. She adamantly refused to go for counseling. She consistently shows poor judgment in her action and decision and hate everone. I find this very scary. A PET scan in December showed nothing significant.

Les

Email: lhalper@hotmail.com

[Lisa]

les,

I know nothing about Paget's unfortunately. And it sounds as though you're going through a horrible time.

Has your wife had a brain MRI? I just wonder if she could have a tumor that might be causing these changes?

What has her doc said?

Love and light,

Lisa

[lhalper]

Hi Lisa,

My wife had a PET scan in December 2005 including the brain and it was all clear. I understand that does not mean much as PET Scans are not very sensitive to picking up brain metastases especially small ones. My wife is supposed to be going for a full body MRI this fall. My wife’s doctor has been very evasive regarding her prognoses. Because of my wife's paranoia she does not want me to speak with anyone regarding her health including her doctors.

Thank you for you concern and thoughts

Les

[Sandy H.]

Sounds like she is suffering from severe depression. Perhaps, she needs some anxiety medication or anti depressant. She is probably angry over what is happening to her. This is not fair to you but it does happen. The closest one she loves is the one that gets hit upon. You say she does it to others. Maybe, you should talk to her primary physican and see if they can help with some medication. Ativan is a good anxiety medication. Good luck and let us know how she does. You will hear from others on this board who maybe able to shed some light on this. Sandy

[lhalper]

Hi Sandy

My wife is taking anxiety medication and antidepressants, but her problems seem so much deeper. As I said she refuses to attend any support groups or see any specialist for psychological help.

Thanks for you support.

Les

[Lisa]

Les,

Please someone correct me if I'm wrong, but PETs start at the chin and go down. And "full body" CTs would be a series of scans showing different parts of the body. There is a new software out that takes a PET scan and a thoracic CT scan and "fuses" them on the computer to get a 3-D look at the body. But it STILL does not include the brain.

A brain MRI shows much more detail than a brain CT and of course puts out no radiation. CTs, however, are still the test of choice for looking at other body organs.

Your doctor should be upfront with you and your wife about treatment. But he/she does not really know about "longevity" if that's what you mean about prognosis. Don't ask.

Your wife obviously needs at least an anti-depressant. I hope you can talk to her doctor privately for her sake and yours.

Love and light,

Lisa

[Monica]

Les, I was wondering if she was thrown into menopause. I know for some women, the abrupt changes in hormones can have dramatic effects on their anxiety, moods and sense of well being. I am guessing she sees some of the changes in herself and feels frightened and alone. I had some serious anxiety problems and I did not feel like myself and did not like the "new" me. My friends kept telling me you're not yourself, and I didn't know what to do with those comments. Not until quite a bit later did my doctor tell me that my problems resulted from the menopause and the tamoxifen I was taking. I was quite angry she had not told me sooner. Nevertheless, it was a relief to find out much of my struggles was biological in nature. I don't know what to suggest other than trying other anti-depressants and perhaps she could talk more easily to a female friend.
Best,
Monica

[Lyn]

Hi there, I was wondering if you wife has had her thyroid checked, that really messes up your feelings of despair. It is just a blood test and more drugs. What we go through is enough to mess up our heads, I too am on anti-depressants but I still get my down days, and it actually feels good some times to just be blaaah. Just a thought , I have been like it for the last few days without any actual reason to feel that way. Hope this helps

Big hugs Lyn

[lhalper]

Hi Lisa

I was told by my wife’s doctor that the PET scan she had was a full body scan including the brain. I agree a PET scan seems a poor choose of tests to determine if the brain is affected.

I have spoken to my wife doctor regarding my wife personality changes and he feels she need psychological help and has recommended it to my wife, but she adamantly has refused.

Les

[lhalper]

Hi Lyn

My wife had half her thyroid removed in December 2004 because of a suspicious growth that turned out to be benign. Her remaining thyroid is working correctly according the blood test she has taken.

My wife personality changes started before she was actually diagnosed with Breast Cancer. I noticed them about six month before. Other people have told me about a year.

Thanks

Les

[lhalper]

Monica

Your point is well taken, but my wife personality changes started six month to a year before she was actually diagnosed with breast cancer. My wife is not taking tamoxifen. My wife self medicates with Prozac when she feel she need it. Which I think is dangerous.

Thanks for you support

Les

[cilla75]

I think the fact that your wife self medicates with prozac might be the problem. An antidepressant is a very serious medication that can really mess up your brain chemicals if not taken properly. An anti anxiety can be taken when needed, but not an antidepressant. Trust me on this, it happened to me ! Talk to her dr. about this, maybe he can advise you on what step to take next ! best of luck

[lhalper]

Thank you for the advice I agree. Unfortunately my wife will not listen to me.