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Well, I thought it was hard enough to care for my husband with Alzheimers along with seeing to my 98 year old aunt in the nursing home and to a friend in Assisted Living who I have the entire P.O.A.

Then I was diagnosed with a rare type of breast cancer called Paget's Disease. My primary care doctor determined it was a cyst. Mammogram showed no evidence of cancer, but after about at least a year and a half I had a dermotologist take a biopsy.

So on September 22 I had a mastectomy..no cancer in lymph nodes but have to start a pill soon to keep cancer from invading blood cells.

I will be 79 next month. I feel okay..still have a drainage tube in breastless area. I am thankful for what I hope turns out to leave me with a few more good healthy years.

Anyone heard of Paget's Disease or know of anyone who had this rare form of breast cancer? Marymember

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At first I was on Femara because I had already gone through menopause, but because of the side effects I was switched over to Tamoxifian. Was on that for a couple of years. Tamoxifian does the same, lowers the estrogen.

Some women can take either pill and have zero side effects, others can take it and get every side effect in the book. It all depends on your own DNA makeup and how well you tolerate other kinds of medicines. I've had a life time of issues with all types of meds, be them prescription or over the counter. I tend to be hypersensitive to the fillers, binders and coatings on pills.

It took me a long time to find a pharmaceutical manufacturer that had fillers/binders/coatings that I could live with. This year that manufacturer stopped making the Tomoxifin pill, so I tried the liquid form and that wasn't user friendly for me, so I had to stop taking it.

I never took Coumadin or xeralto for blood clots as I never had a heart issue in reference to clots.

A mammogram also didn't show anything, but my primary doctor insisted she felt something, so the doctor insisted that I have a sonogram and sure enough it was a start of a tumor which turned out to be cancer.

I never told my parents I had cancer, I didn't want to upset them since Dad was still recovering from a mild heart attack. Now I wished I did, because I looked healthy they thought I could run them all over the city driving, and this doctor appointment and that doctor appointment not realizing I have a bunch of brand new doctors I was seeing on a monthly basis myself, and I was exhausted :P
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Not on Tamoxifan (sp?), but generic Femara. It lowers the estrogen in you so that the cancer will not return in other organs (such as heart, lungs, stomach, etc.)
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How does tomoxifin work? Whar does it do to you body? Can it cause blood clots? What is best for blood clots? Coumadin or xeralto? marymember
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any more helpful news on Paget's breast cancer? I will be startinf on a pill soon to help help cancer cells from spreading in the body. Do these medicines make you sick? marymember
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Ah, sounds like Tomoxifin, isn't it wonderful all the lovely side effects.... oh those hot flashes. My elderly Mom doesn't understand what I am going through and why I can't stay to visit in their house for any more than 15 minutes... she and Dad keep there house 15 degrees warmer than I keep my house.
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I have it, too. Been in remission for 4 years, just now getting hot flashes and sweat with the daily pill. Get lots of rest, you'll need it. I had a year of 4 different chemotherapy drugs, every 3 weeks. So thankful for wigs as i lost every hair on my body. Thank goodness, its all grown back.
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Thanks for adding that, Pam. I had heard of Paget's disease of the bone, but his is the first I've heard of the breast cancer. Marymember, sending healing and coping vibes your way. It sounds like you caught it in time. I was so glad to read that your lymph nodes were clean.
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My father in law had Paget's disease of the bone. Dr. Paget discovered many diseases and they are all called "Paget's" so try not to confuse information on the many different types.
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Never heard of Paget's disease so I looked it up at the Mayo Clinic. Looks like you are going through all the right steps, and made the right choices. The fact the cancer didn't migrate into the lymph nodes is a very good sign.

The fact you have someone at home who needs your care, it will be a distraction away from worrying about the cancer.

You will find yourself being very tired for a couple of months so try not to over due it. No picking up anything more than 5 pounds for awhile. Do your post-surgery exercises as soon as you can, the finger-walking up the wall is a good one. Been there, done that, have the pink t-shirt.
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