Dec 17, 2019 Latest post:
Jan 28, 2023
Welcome to my (our) CaringBridge website. I(we) are using this platform to keep family and friends updated in one place. I(we) appreciate your support and words of hope and encouragement. Thank you in advance for visiting, praying, loving and supporting me and my family!
Where to begin my story... it's a long one and I'm afraid I might lose my readers! I never thought I'd be sharing personal information about my breast, nipple and body with so many people but here I am.
Seven months ago, in April, I saw my oncologist, Dr. Paul Zander, for some unusual breast nipple issues (crusting, scabbing, moist blood which was considered discharge and more retraction). These symptoms were on the same breast that I had DCIS (ductal carcinoma in situ - stage 0) 15 years ago and I had a lumpectomy and 7.5 weeks of radiation, so I was a tad bit concerned. I was sent for a mammogram where nothing was found and no explanation was given as to why I was enduring these symptoms. I went on living my best life with thoughts that it would heal and go away.
In October, 6 months later, I was still having the same symptoms mentioned above however, now I had warm sensation behind the nipple and some sharp stabbing pain off and on throughout the breast. While making my gynecologist appointment, I asked to speak to a nurse and didn't get to far. Basically I was told this isn't something they would deal with and I should call my oncologist office, so I did. I was scheduled within the next 2 days to see a nurse practitioner named Mandy. She was very thorough and felt the symptoms that I now had were not normal. Mandy was leaning towards radiation side effects which cause the skin to lose elasticity, cave in or retract slowly over the years, making the breast look distorted, as well as possibility of scar tissue. I was sent for another mammogram & ultra sound and an appointment was set up with a general surgeon , Dr Dawn Johnson (same doctor who took my gall bladder out 2 years ago since my surgeon from my first cancer has retired), to see what we could do about the possible scar tissue. I had the mammogram and ultra sound a week later and no abnormalities were found compared to the one in April. The Piper Breast Center staff told me they were going to cancel my appointment with Dr. Johnson since they did not see any changes or scar tissue. I am so thankful I spoke up for myself and was persistent and demanded that I was keeping that appointment. I just remember saying, "No one can tell me what to do about a sore that won't heal and hasn't healed for 6 months! This isn't normal!" So they reluctantly let me keep the appointment.
The following week I met with Dr. Dawn Johnson and her nurse Regina. Regina is an infectiously sweet, positive woman who is from Africa. She made me feel safe! Dr. Johnson did an exam and ruled out scar tissue but said the symptoms I had had her leaning towards Paget's Disease of the Nipple which is a stage 0 rare breast cancer, only 1-4% of woman who have had DCIS will get this. I was sent to have an MRI with dye to see exactly what was happening throughout the breast but especially behind the nipple. I learned a mammogram and ultra sound can not show enough of the tissue behind the nipple. So I waited another week to have the MRI done due to needing a pre-authorization.
During that week of waiting, on November 8, I started to break out in a rash - just a few bumps that looked similar to chicken pox. It slowly started to spread on my legs, then to my back, arms , foot and palms of my hand. I made an appointment to see my general doctor, Dr. Brian Post, but it was his day off so I took an appointment with one of his colleague which was a bad idea - I won't go into that! Shingles, chicken pox & measles were ruled out and I was told rashes are hard to diagnosis so I should see a dermatologist if it persists. The rash multiplied and grew into dark purple black ulcerations while I waited to get into the first available appointment with my dermatologist 3 weeks later, the end of November! I don't think the receptionist, at the dermatologist, either appreciated or got my sense of humor when I told her that by the end of November I could be dead with a skin eating rash but I would take the appointment (ha-ha-ha)! So I waited and watched the rash take over my body.
On November 12 - I had the MRI done and Dr. Johnson called to tell me they found no tumors, scar tissue or unusual spots. She asked if my nipple had healed miraculously....NOPE! Next step - a breast punch biopsy was set up for November 19.
On November 17 - I sent a picture of my rash to one of my best friends, Rana Clarke, who is a nurse and lives in Washington. She told me "Get your butt into urgent care now! That is not normal!" So my stubborn self finally, after some persuading on Jim's behave and my families, went to urgent care. Urgent care took one look at the rash and moved me into the ER where they did blood tests and urine tests etc... Hours later I was diagnosis with Erythema Nodosum, we would later find out was a misdiagnosis. The positive - the ER trip got me into the dermatologist faster!
November 19 - I had to cancel and reschedule my breast punch biopsy appointment to December 3 in order to see my dermatologist, Dr Ann Norland. I think she was shocked when she saw the rash. I have never felt more like a movie star with all the pictures her nurse took of my rash! I told them both they could not sell the photos because if anyone is going to make money off of this, it's me. I'm still trying to figure out what science/medical book might want the many pictures I've taken of every stage of this rash(ha-ha-ha)! Dr Norland took two biopsies and put a rush on it.
On November 22 I was diagnosed with SWEET SYNDROME : "a rare skin condition. It's main signs include fever (which I never had) and raised painful skin lesions that appear on your arms, neck (none for me), head (only one on my face) and trunk of the body. The exact cause of Sweet's isn't known. In some people, it is triggered by infection, illness or certain medications. Sweet's Syndrome can also occur with some types of cancer. Recurrence is common(mayo.com)." It was treated with a large dose of prednisone which slows the spread and is an amazing medication but comes with many side effects. I am also using Calendula which my friend, Jodi McKee, made for me and has given me other natural herbal items from her shop Jewelweed in Wayzata, MN.
On December 3 I went back to Piper Breast Center to have the breast punch biopsy done by Dr. Dawn Johnson. While I want to sound brave and strong, I will admit I was not looking forward to this procedure, it is extremely painful - the numbing needle being poked into one of the most sensitive areas, the nipple, on the woman's body HURTS and with that comes swelling and yellow, green and black bruising (For the men reading this, just imagine a needle poking into the foreskin of your penis). I already have a distorted "ugly" breast and now I have extra swelling and bruising! On the bright side, after the procedure I walked out of the office all numbed up and feeling like for the first time my left breast was a double D (ha-ha-ha), it left the building before me! Regina,, the bubbly sweet nurse, asked me to walk with her to drop off my biopsy at the lab, so I did. She wanted me to see where they would do the biopsy. I told the lab person to take care of that tissue and be thorough because I only get the "strange stuff"! I was told I would get the results of the biopsy within the next day or two so when I did not hear anything the next day I was sure the results were negative because everyone knows that bad results come right away and good results come later - at least that's how it has always worked for me!
December 5 I received a call early morning from Dr Dawn Johnson telling me she did not have good news. I was diagnosed with PAGET DISEASE OF THE NIPPLE stage 0, slow growing! "Paget's disease is a rare form of breast cancer, only 1 -4% get this type of cancer, that affects your nipple and usually the skin (areola) surrounding it. Possible signs and symptoms include: flaky or scaly skin on the nipple. Crusty, oozing or hardened skin resembling eczema on the nipple or areola or both. Most woman with this disease have underlying ductal breast cancer. Only in rare cases is Paget's confined to the nipple itself (mayo.com.)"
I got off the phone and I cried! I was shocked! I was pissed! I was numb! I could not believe that after 15 years of being cancer free, of being a survivor I was walking this journey AGAIN and with a second RARE diagnosis within 1 month! I feel broken. I feel like I have no control. And I have cried every single day at some point - it's healthy! I have prayed also, to open my eyes to what I am suppose to learn from this new journey and maybe just maybe I'm suppose to share my story with you so you too will be persistent with the medical community when you know something isn't right. I'm blessed this cancer is stage 0!
I am PERFECTLY IMPERFECTLY MADE! Hugs and love - Amy