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It’s Not a Rash

May 3, 2007
by Nancy Bento

In November of 2005 I noticed the nipple of my breast was pink.  It appeared to have an open sore on it and it oozed some light red discharge. I used some over the counter ointment and it turned into a crust.  They happened over and over and each time I used ointment.  When I mentioned it to close friends they told me it was just a rash or something and to “get over it”.  

I worked with key words on Google in inquire about the rash on my left breast.  I used words such as: “rash on breast” breast nipple discharge” etc. I got a “hit” Google referred me to a link called “Paget’s Disease of the Breast”.  I read everything I could find about Paget’s and found pictures.  I felt I had diagnosed myself as having this form of Breast Cancer.  My inner feelings spoke to me and I knew I had diagnosed myself.  At that time, I did not realize the extent of the cancer and was preparing myself for the nipple and only part of the breast being removed.  That was the normal treatment for early stage Paget’s Disease.  

When I saw my “Primary Care” doctor in February, I told her of my findings.  She said “I do not think that is what it is, I think it is a rash” (That is exactly what the internet said Dr.’s often say and patients go many months before they realize it was not a “rash”)  She gave me a cream (also what the internet said they mistakenly do) and referred me to a Dermatologist.  I did go for some other tests and everything was fine except for the fact I had high blood pressure and she could not get it under control after three trials of medicines. She was more focused on my blood pressure and non-caring about my breast cancer concerns.  

The dermatologist also thought I had a “rash” and wanted me to use this cream he created for his patients. I told him I have already tried a cream, I read much on the internet about Paget’s Disease of the Nipple and felt I had it.  He did not fully agree but did agree to do a biopsy on my left breast.   

Six days later on March 29, 2006 I had a message on my home recorder when I returned from work.  It went like this (supper bubbly voice) “Hi Nancy this is Dr. ______ office.  We have your biopsy results, you have Paget’s disease of the nipple please call us for a referral”.  Although I knew inside I had Paget’s, I could not believe the giddiness of the phone call and the insensitively being told I had Paget’s – Breast Cancer.  I almost wish I had saved the message to play back to the Dermatologist who employed this insensitive person.  

April 2nd I saw my “Primary Care” again and gave her a copy of the report that was mailed to me. I asked her for the name of a surgeon and she gave me three.  I went home and researched them and found out that one of the three, Dr. Hashimoto was a second generation Surgeon.  His father was quite well known at the University of Utah Medical Center.  So, naturally Dr. Hashimoto was my choice.   

I saw Dr. Hashimoto on April 4th.  He was concerned at the Paget’s diagnosis and ordered a diagnostic mammogram immediately. I went across the street, the same day, to Cottonwood Hospital Women’s Medical Center. They performed the mammogram and a biopsy.  Dr. Hashimoto called me that night and wanted me to have an MRI for further analysis.  

I am told that this MRI machine is one of the newest on the West Coast. They placed an IV in my left arm and prepared me for the test.   I reclined on the board and my breasts were positioned in cup like devices.  I rested my head on a pillow and it had mirrors that gave the appearance you were right outside the machine in the room.  They provided protective head phones and tuned into my favorite radio station. With all the magnetic banging it was hard to hear but it added a lot of relaxing comfort. As I previously mentioned, all the while the test was being performed and I was inside the chamber, there was a sensation I was still in the room as I could see everything because of the mirrors. I have to add this is a wonderful invention.  At no time did I feel claustrophobic and I could not tell I was in reality inside the chamber.  When I share this story with others who have had an MRI they are amazed at the changes.  

The next day, Dr. Hashimoto said there was a serious concern with the MRI test. He showed me the MRI scans in his office and how he was suspicious of some ducal readings. They looked like spider webs crawling inside my breast.  While they had not reached the chest wall, they were close.  He told me they could do another MRI to test further to be sure they were cancer and I told him, after seeing the slides and talking with him, “lets just do the mastectomy”.  He thought it was a good call.  He then took me in for another biopsy on my right breast.  There were three nodule balls inside that were suspicious. The overall biopsy procedures each time had little pain and I was very impressed with the professionalism.  

I saw Dr. Hashimoto again on April 11th.  He agreed the mastectomy was the best way to go to be cancer free.  I opted for no reconstruction so he would take all the skin he could.  He said the right breast was benign but he wanted to remove those papalomas to be sure. I agreed. He also told me to prepare for Chemotherapy and possible radiation.  Those were words I feared but knew I had to face up to. It sounded so dark and horrid but I knew I had to face it. My surgery was to be April 20th.  Driving home I thought to myself, I indeed thank the powers that be for the internet. I could have gone on thinking it was eczema or a rash and then I would have full blown breast cancer in a short period of time;  not that the breast cancer I already have was not serious.  

When I was wheeled into the operating room, my first thought was “this loud music in here is horrid, I will go nuts” As I was being prepped, I saw Dr. Hashimoto.  I trusted him and that was the most reassuring thing as I drifted off to sleep. I must also admit I never heard the horrid music again.  I awoke in what seemed like minutes with a nurse named Mary at the foot of my bed.  She said I did very well in surgery, the breast was removed and all other procedures were performed.  She did not know any of the results.  It was not until I saw my Mother I got the results that Dr. Hashimoto relayed to her.  

I had 4 lymph nodes removed, two were positive.  The sentinel node was swollen.  I was bandaged up and had a drain in my chest that I had to empty of lymph fluid often. I did not have much pain and my spirits were high.  

Twice a week for 6 weeks I had to go into Dr. Hashimoto’s office and have fluid manually removed. It was not painful and we became friends through this ordeal.  I remember one instance I was walking behind him to the office and I went “Moo”. He laughed as did I.   I felt like a cow being milked.  Humor often saved my sanity through a lot of this. The week before I saw my Oncologist, Dr. Patricia Legant, the draining all stopped.  

Dr. Legant told me I would have to have 4 rounds of A/C (adriamiacine and cytoxin) with a possibility of 4 rounds of Taxol. I was told I was a Stage IIA Grade II.  Although the tumor was very small I did have lymph node involvement, so I was classified as Stage IIA.  The good news was due to the fact I had a mastectomy and only 2 lymph nodes were positive out of the four he removed, I did not have to have radiation.  

That evening when I got home my doorbell rang and it was three “Sisters” from the Mormon Church.  The Sisters had heard about my breast cancer and one of the ladies, Shelly told me she was a two year breast cancer survivor. We all talked a while and Shelly asked if she could call on me again.  I told her that would be nice and she wanted to take me to my chemotherapy sessions. She was a true blessing to come into my life during this period of time.  

June 9th I arrived for my first chemotherapy session.  I was naturally scared.  They took me to their back file room where they had a recliner chair.  Something about the informality of this chemotherapy setting was assuring for me.  There were no other patients around and just the fact it was in a file room make it seem more relaxed and not as serious as I knew it was.  The Nurse administered an anti-nausea drug called Anzimet first then she did the A/C sequentially.  I drank a lot of lukewarm water through the ordeal and when it was over just felt a bit light headed.  Shelly and I stopped for a sandwich and I was scared as to when the nausea would hit. I was fortunate, the drugs and pills worked. I did not get sick. Deepak Chopra states in his book that lukewarm water is far better for your system.  I think this did help with the nausea. I pass this information on to anyone about to undergo Chemotherapy in the hopes it also helps them with the nausea.  

The next morning I had to return to Cottonwood Hospital for a shot called Neulasta.  This shot keeps your blood cell count up.  The side effects can be joint and muscle pain but I felt pretty good. I later learned these shots run over $3500.00 each! How could anyone afford this shot after each chemotherapy treatment?  I felt grateful for my insurance.  

That week I was fatigued. I was working full time but managed to work from 6:30 until 2-2:30.  It was hard and I was glad to get home and lie down. Twelve days later my hair started coming out.  It lost its entire luster and was just pulling out.  Since I had cut it short before the chemotherapy began, I went to Great Clips and had my head shaved.  I figured I would rather just get this hair ordeal over with.  I wore scarves – the biker style pre fitted for the head most of the time.  

When I went to my second treatment, I did wear a scarf.  It went ok but I was not as up as the first.  I guess the reality of me losing my hair and having cancer was really hitting hard.  I did not get down; I still laughed but felt more mortal than I ever have before.  The treatment went well and we went for Chinese food afterwards.  I was fortunate again, no nausea and next day I had my shot of Neulasta.  

Work was harder and I was weaker.  I felt awkward with the scarves but did not want to resort to a wig.  Overall co-workers were pretty supportive.  My best supporter was probably my cat Sammy. He would never leave my side when I decided to lie down.  I found short naps after work really did help a lot.  One of the more troublesome side effects I was starting to get sores inside my mouth.  They were spread across both sides of my cheeks and on my tongue.  Needless to say it was quite painful to eat.  

I remember asking Dr. Legant if an occasional Canadian Whiskey in the evening was ok rather than a pain pill and she said it absolutely was.  She is quite human and very down to earth.  Dr. Legant is just the doctor any woman needs, she cares, understands and has the best sense of humor.  

Probably the best thing one can do when they battle cancer is to understand it.  I found article upon article, many contradicted the other but I was learning.  Fear is still with me, yes, but I know I was fighting this disease and ultimately I hoped to beat it.

I was excited that I only had to have one more round of A/C and not the Taxol, so I prepared myself for the following week

My mouth was still bad and getting worse.  My fingernails and toe nails were thin and brittle and ached.  I had no body hair ANYWHERE on my body, everything was smooth. It was quite an experience that I call a journey.  I was even more tired and rested a lot more when I got home from work and on the weekends. My family was wonderful as were my best friends and animals.  Again, Sammy my cat seemed to understand, he was like a teddy bear all the time when I was lying down.

The week of the 5th round came quick.  I was excited to be getting it over with and nervous about yet another round of poisoning my system.  The light at the end of the tunnel was before me, however, and I knew I was on an upward path.  NOW I was anxiously awaiting my hair to re grow.  I swear I will never wear a hat or scarf again!! 

On February 9, 2007 I went to Cotton Wood Hospital for a diagnostic mammogram.  It was my one year check up; I was nervous, scared and apprehensive all in one.  While I feel the cancer is gone one can never be sure.  One microscopic cell could have escaped the attack on my system.  I suppose I will live in this fear for many years, but with my family, friends, animals and support I know I will be OK. MY final word to any woman, if you have anything on your breast that even resembles a rash-- CHECK IT OUT!!! Have your yearly mammograms, catch this disease early and be a Survivor.

I am hoping my story ends here for the rest of my life. My Mammogram was negative and I can only take each day now as a gift.

God Bless.
Nancy Bento, Pink-Link member (username: UtahNancy) 

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