My Breast Cancer Ordeal

In October 2002 I was diagnosed with breast cancer, two types in separate places, in my right breast.   They could not be felt.
I have had mammograms done for the last six years and nothing was present the previous year.
(GET YEARLY MAMMOGRAMS - THEY SAVED MY LIFE!!!)

Mitigating Factors

• I also suffer from depression and was already taking anti-depressants and seeing a therapist over the last three years, otherwise I would have made an appointment to obtain medication to calm me and help me sleep.
• I had lost my father (lung) and grandmothers (colon and breast) to cancer so I had a family history of cancer.
• Health insurance was an HMO so, I had to pick doctors from a list with no reference of their abilities.  I chose one close to home.
• I already had one bout with cancer.  I had a total hysterectomy nine months after my son was born in 1989 because of Cervical Cancer - The cancer was in very early stage (in situ) - I first attempted a conization, or cone biopsy, but it didn't get it all so then I had the hysterectomy - I did not require Chemotherapy or Radiation - They left my ovaries so I didn't need any hormones. Have had no recurrence of other problem there.

How did I react to the news?

    "Not Again!" - see mitigating factors above
    Depression - spent four days at home mostly in bed and cried a lot
    Fear - I didn't know how advanced it was and wasn't sure what I'd have to go through - didn't fear death but didn't want to leave my son yet
    Upset - Didn't want to lose my hair, be sickly, or linger, suffer, and die like my Dad
    Why Now? Things were going so good - I had just purchased a 1994 Corvette Convertible and was on cloud nine with it

How did I handle these feelings?

    Acceptance - I couldn't wish it away or ignore it - I just had to deal with it - Let's do what we need to and get it over with
    Got out of bed - I decided that being depressed wasn't helping anything so, I got out of bed and went out to visit friends.
    Told my family, closest friends, and therapist - Hard to talk about without crying since I was scared
    Researched wigs - Decided, if necessary, I would buy several and change my look as desired
    Humor - My defense mechanism for life - Started making breast jokes with friends
    Resolve - Just another setback that needed to be dealt with so I could get on with my life
    Drove my Vette - As much as possible - Driving relaxes me and lets me think things through - The car made me happy
    Kept Busy - Didn't let it engulf me and become the only thing in my life - made NO major life decisions - maintained a normal routine

What did I do first?

    Research - I searched the internet to understand the different biopsy procedure and types of breast cancer and reconstruction methods
    Asked Questions - of everyone, x-ray technicians, doctors, nurses, breast cancer survivors, etc... - made the effort to understand my x-rays
    Met with a Surgeon - to set up the appointment for the biopsy, ask questions, determine what type of biopsy I needed
    Saw my therapist more frequently - I needed to remain positive and focused - turned out she had had breast cancer and been through it all five years ago so she became a major resource of information

The Biopsy - November 19, 2002

    Due to the size and locations of the masses, an Excisional Biopsy, or Lumpectomy, was performed.  I wanted both masses removed completely in hopes of getting all the cancer.  I went into the hospital relaxed and ready to get this done. The surgery was done via outpatient procedure at Fairfax Hospital in Fairfax, Virginia.  It's a two-step process. First I went to the mammogram room where a radiologist identifies the area to be biopsied and positions wires in the abnormal breast tissue to identify the area to be cut out and removed during the surgery. I had two wire inserted for the two separate masses  (My advice - Don't look).  They give you a shot to numb the area before inserting the needle. In the operating room after being sedated, the surgeon makes a 1 to 2-inch incision in the breast and removes the localization wire and a large section of tissue, typically about the size of a golf ball. The incision in the breast is then closed with stitches and covered with a protective bandage.  You must wear a good support bra during the healing. (I hadn't worn a bra in over 20 years so, this was very uncomfortable to me.  When I tried to go without it, the bouncing caused pain. I purchased and wore sports bras for almost a month).  This procedure resulted in disfiguring of my right breast (after healing I had two dents in the side of my breast).  They say you can return to work the next day after this procedure but, I was very uncomfortable (it hurt to walk--still too much bouncing) and ended up taking off the rest of the week.

What should have been easy, became a very traumatizing ordeal due to various problems at the hospital:

1. The mammogram room wasn't scheduled delaying the surgery of a few hours. I wasn't taken back until an hour after my scheduled surgery time.

2. My breast x-rays, which had been left with the surgeon at his request, were NOT at the hospital and surgeon's office said they didn't have them (they did).

3. The radiologist couldn't figure out where the larger lump was to mark it and they kept taking pictures of my breast which was getting quite sore from being mashed in the machine.

4. They decided to get the surgeon to look at the x-ray and tell them where it was.  Since I had met with the surgeon once a month ago, I felt he wouldn't remember and I began to fear they would not remove the right thing.  Up until that point I had been ok.  My fear turned into a panic attack and I had to be sedated (could not even talk about the experience for many days without reliving it and crying).

As a result, I lost all confidence in my current surgeon.  I'm still angry about what I was put through.  A cancer diagnosis is scary enough without having to deal with mistakes and incompetence, too.  (My advice -  GET A TOP-RATE BREAST SURGEON!!!!! - don't let your health plan dictate who you can see - be willing to pay out of pocket to get the best - the piece of mind is worth every penny). 

    The surgeon called me at 4pm on Friday to tell me, based on the preliminary review, both masses were cancerous (he should have waited until Monday to impart this bad news - ruined my weekend and caused more hard feelings).  I met with him a week after the surgery when the pathology report was received.  It was cancer and the "margins were dirty" meaning the surrounding tissue removed also contained cancer cells.  He went over the types of cancer I had and my options.  I could get another lumpectomy but I would have been left me very disfigured with only 1/3 of a breast on my right side.  I had already decided to get a mastectomy if the lumpectomy didn't get it all and also to have the reconstruction done at the same time.  He recommended the mastectomy and discussed the various breast reconstruction methods.  I was told I would have to see a Medical Oncologist and a Radiation Oncologist.  He gave me referrals for doctors in my area. Then I got a copy of my pathology report, my x-rays, and left him for good. 

 What kind of cancer did I have?

    Ductal carcinoma in situ (DCIS)
    Invasive Ductal Carcinoma (IDC)
    The x-rays showed an irregularly shaped calcification with many smaller calcifications spread throughout my right breast and what looked to me like a fluid filled lump. Both were on the right side of my right breast and were about 1 1/2" apart.  The mammography technicians were concerned more with the fluid filled lump whereas the surgeon was more concerned with the calcifications.  This difference in opinion raised doubts and fears in me prior to the first surgery.     

Now What?

    Via my therapist I got the name of the top breast surgeon in the area, Dr. Katherine Alley, and a top plastic surgeon, Dr. Roger Friedman, to do the reconstruction.  She also discussed with me the Tram Flap reconstruction procedure she had had.  This procedure results in a tummy tuck and a breast lift for symmetry.  I had been overweight and had a bubble belly all my life.  The thought of a flat tummy was intriguing.  I decided I deserved this as a reward for what I was going through (my silver lining).  Not everyone is a candidate for this procedure and it does require a much longer healing time than other reconstruction procedures.  I didn't care about the recovery time, I wanted my flat tummy and perky breasts!  Something good had to come from this! 
    On December 4th I met with Dr. Alley, who also recommended the mastectomy and on December 6th I saw Dr. Friedman, who explained the Tram Flap procedure after determining I was a good candidate.  Everything was settled and I was to have surgery sometime before Christmas.  I met with my Medical Oncologist the next week who gave me more good news, unless the cancer had spread to my lymph nodes, I would not require Chemotherapy.  I would be put on hormone therapy, Tamoxifin, a pill taken daily for the next five years.  No Problem!  Because I was having a mastectomy I would not receive Radiation treatments so, I did not have to see a Radiation Oncologist.  I was feeling good now!  Yes, it was cancer but I was getting so much positive information and I had so much confidence in my doctors that I was no longer afraid.  "Let's Do It!"  I got my surgery date less than a week before it was to be done.  It's hard and takes time to get two top doctor's schedules to jive.  I understood Dr. Friedman had to reschedule other surgeries to accommodate mine (including my therapist's daughter's minor surgery!).  I arranged for my Mom to come stay with me during and after the surgery.  (You MUST have someone very supportive and attentive to help you after the surgery).
    I decided to have a farewell party for my right breast and told everyone to think up breast humor.  Almost all my friends came to wish me well and to celebrate, in advance, my flat tummy and perky breasts.  There was plenty of breast humor to go around.  Everyone was amazed at how well I was handling things.  I was very upbeat, now.
    I also decided to tell everyone I know about my problem.  In the past, I kept things to myself and dealt with them internally - This caused me a great deal of hardship and worry but, I didn't want anybody's pity.  By sharing my burden with those who cared about me, it lightened the load.  I got strength from them.  I received so many emails and calls and it made me realize how truly fortunate I am.  I really felt blessed.  I let me co-workers know about my problem and had to schedule three weeks of leave to cover the surgery and recovery.  They were very supportive and understanding and I was told if I needed more time, all I had to do was call.  Another burden lifted.

The Mastectomy and Reconstructive Surgery - December 18, 2002

    My surgery was scheduled for 12:30pm at Suburban Hospital in Bethesda, Maryland.  I got up early and bathed and washed my hair.  I had been told the surgery was a 4 to 6 hour procedure with most of the time for the reconstruction and I would be in the hospital for 3-4 days.  My husband and Mom came with me to the hospital.  I didn't want them to just sit at the hospital during the operation so, they went home to wait for a call after Dr. Alley had finished and came out to talk with them.  After I was taken back and prepped for surgery, Dr. Friedman came in and marked guide lines on my breasts and stomach with a felt-tip pen.  He also told me I would be waking up with my legs raised and that I would not be able to stand up straight for two weeks and should not raise or use my arms.  Because of my last surgery experience, I became nervous.  I ask the anesthesiologist to give me something to calm me. I don't remember anything after that. Dr. Friedman called my family at 6pm to say he had just finished and I'd be sent to recovery soon.  My Mom and husband returned to the hospital and met me in the recovery room at 7:30pm.. 
    The next time I opened my eyes I was in the recovery room with my family walking toward me.  My throat was sore and I felt like I was having trouble breathing (I had had a tube down my throat during the operation).  I was very thirsty and was allowed ice chips only.  My family left at 9:30pm and I stayed in the recovery room until 12:30am before I was taken my room due to a room shortage at the hospital.
    I was given a private room which was kept very, very warm. (This helps with the healing process).  My legs were kept raised and my head was slightly raised with pillows propping up both arms.  I was on oxygen with an IV and a catheter and four drains, 2 under my right arm and 2 coming from my pelvis.  My pain killer was morphine with a self-dispenser button.  Every time I got a dose, it knocked me out so, I slept a lot that first day and didn't leave the bed.  I was on a liquid diet. All I wanted was ice chips. The oxygen dried me out.
       The next day, Friday, they removed the catheter and oxygen and got me out of bed to sit in a chair and told me to start taking walks.  Initially the walks were very short.  The more I walked, the better I felt.  I decided to have all my meals sitting in the chair and was allowed solid food of my choosing.  Dr. Alley called to tell me there was no cancer in my lymph nodes (13 were removed). Yeah!!!  Now I knew all I had to do was focus on recovering.  I was still on the morphine and would fall asleep within 10 minutes of a dose so I was still sleeping a lot.  Dr. Friedman visited and told me I would be going home tomorrow and I needed to learn how to empty and measure the output from the four drains.  I could not raise myself up and down without the hospital bed's help so I called home and had my husband rent a hospital bed (I would have used a lounge chair to sleep in instead, if we had one).   They took away the morphine that night.  I was now on oral pain killers (percacet).
        I was sent home mid-day Saturday, December 22nd, with my 4 drains, lots of tape on my scars, and bandages over my abdomen and under my arm.  I had prescriptions for Percacet (for pain) and Valium (muscle relaxant).  I had to empty and measure the output from each of the 4 drains three times a day. 

Post-Surgery Follow-ups and the 1st few weeks

    I had visits with Dr. Friedman twice a week for the next two weeks.  The 1st visit was the day before Christmas.  He removed the abdominal bandage but left the tape on the scars.  On the way home we went to the beauty parlor to get my hair washed.  I next visited him Friday, December 27th, and he removed the scar tape and one of the drains under my arm.  I saw my scars for the 1st time.  They were big angry raised red scars.  My mind flashed on Frankenstein.  I joked and called this the Franken-Breast phase.  I had some fluid build-up under the new right breast which he removed via a needle.  The area was numb so I didn't feel much.  I also had one layer of stitches remove from around my left nipple.  I was shuffling around bent over like an old lady and got fatigued easily.  I was still sleeping a lot.  On Sunday, December 29th, my friends took me out to see one of my favorite bands.  I was very excited and the guys in the band were glad to see me (they knew about my problem).  I didn't do anything but sit and tap my toes (anything else hurt - I couldn't clap).  I literally collapsed from exhaustion when I got home.  I had my two closest friends visiting me daily.  Their visits wore me out but, I truly enjoyed them.  We watched videos and shared meals.  They helped me and my Mom with things around the house and waited on me. 
   I  received so many calls, emails and gifts from people who cared. I was feeling a little overwhelmed with having to respond to everyone now and decided to write one email/letter and thank everyone at once. I worried that some would be offended by this but, no one was. In fact a few asked if they could quote from it or forward it to others because they thought the message was so good. Of course, I said yes.

One Month since surgery - January 2003

   Am wearing my griddle all day, every day (I need the support). College started back up on 1/13/03 and since I still can't walk very far, am parking closer and using elevators instead of stairs to get around. I returned to my computer job on 1/14/03.  Saw Dr. Alley on 1/17/03. She referred me to physical therapy for my right arm which started 1/23/03. It's a weekly appointment but, I had several exercises to do daily at home. They also did some trunk exercises since I said I couldn't walk very far.  The day after the 1st therapy session I was very sore but, after that I was greatly improved in my trunk mobility.  Decided to try dancing on 1/27/03. Just stood still and wiggled gently a little bit. A week later tried more enthusiastic dancing.  Found I could do it with minimal soreness the next day.  Since I've been very sore and stressed out, decided to use dancing as my exercise/stress-reliever.  Each time I danced, I could do more and it was my 1st step towards feeling more normal.

Two months since surgery - February 2003

   Stopped wearing my griddle all day on 2/1/03.  Had my 1st monthly visit with Dr. Friedman on February 14th.  Told him about my dancing and he said "Good".  He said I looked great and to start resuming my regular activities (within reason, no high impact aerobics or volleyball yet).  He recommended I wear support garments when exercising.  I attended a Step aerobic class on 2/25/03 and taught a Step class on 2/27/03.  I could not do any power moves or do any stomach exercises. I wore a sports bra to both.  Had my last physical therapy appointment 2/27/03.  Arm is not 100% but I do have full range of motion now.  On 3/2/03 I attempted some weight lifting for the first time.  I had no problem with leg and arm exercises.  I should not have done any chest exercises.  I had extreme soreness in my upper abs and bruising around the reconstructed breast.  Decided I had pushed too hard, too soon and took the next week off from activity.  On 3/6/03, I started shooting basketball daily with my son (around the world).  I stop when I start to feel sore (doesn't take very long).
   I've been getting together with my volleyball friends for dinner Sundays.  Have been more than willing to discuss any and all aspects of my ordeal.  The weekend of 2/22/03 my drinking became very dangerous (for me).  I normally would drink 4 beers total over an evening.  I was drinking double that along with shots of liquor.  This was very out of character for me and I was very concerned about why this was happening.  After talking with my therapist on 2/24/03, we determined I was suffering from Post-traumatic Stress Syndrome and loneliness.  She said I haven't really dealt with this cancer. I've been so wrapped up in dealing with the surgery, recovery, etc, that I haven't really addressed the cancer. She was right, I was avoiding thinking about cancer.  I felt better just knowing the reason.  She also told me to stop talking about my cancer so much. Since then my behavior is back to normal.  I'm kind of glad not to be talking about the cancer/surgery so much.  I figured out all the talking was helping others but, not me.  Now when asked, I answer briefly and drop it. 

Three months since surgery - March 2003

    Decided to try a step class. Wore sports bra and removed all risers. Was able to do most moves but with minimal propulsion. Could not do abdominal exercises. Subbed for a step class two days later with same results. Still going dancing. Attempted volleyball for 1st time on March 24th. Had slight discomfort under arm when back-setting and hitting. Everything else was ok. Starting teaching a Pilates Stretch class once a week. Saw surgeon on March 28th. Told him about problems at volleyball. He said I just needed to stretch more before playing. He also said I was ready for the next step, shaping the breast (new one is too large) and making a nipple. I did seriously consider not having any more surgeries. But I decided to go ahead and I'm going to get a neck and facelift at the same time (cost $8000). This surgery is scheduled for May 21st. The resumption of my old activities has picked up my mood greatly. I'm not feeling as stressed. My right breast feels more normal than it has since the mastectomy. Of course, it will never have the same sensations as a real breast.

Four months since surgery - April 2003

    Based on what my doctors have said I've decided to stop babying myself. Although I am apprehensive about a possible hit in the chest or abs. Played volleyball again (stretched 1st). Did fine. Told my teammates I was ready to return to my volleyball league. They were glad to hear this and have me back. League play started April 21st and is once a week. Am back to playing Volleyball every Sundays (still am not playing doubles). Feeling very normal. The scars aren't as red and the sight of myself naked isn't as shocking. Decided to take out a $5000 loan though my credit union with the Vette as collateral to pay for the facelift. I also cashed in a small IRA($3000). The surgeon requires full payment two weeks before the scheduled surgery or it's cancelled. We had our house painted inside and out this month (Boy, I'm glad that's over!). I've been lifting and moving things around. No pain. My breast is no longer the 1st thing I think of before attempting any physical activity. I feels quite natural to the touch but I still have numbness on my side under the arm. Part of me is looking forward to the upcoming surgery and part of me never wants to have surgery again.

Five months since surgery - May 2003

    Busy preparing myself for the next surgery.

Things to know/do before the surgery

1. Buy button up shirts and pajamas. You will not be able to raise the arm from which lymph nodes are removed.  You will need physical therapy to regain it's use.

2. If you choose the Tram Flap reconstruction procedure you will need to buy a high-waisted griddle to wear for a month after the surgery.

3. Go Grocery Shopping. Buy supplies for at least two-three weeks.  Get easy to prepare foods.  You won't feel like cooking.

4. You will not be able to lift anything more than 5 pounds for at least a month.

5. Stock up on books and videos to watch during the recovery period.

6. Schedule three weeks off work (at least for Tram Flap).

7. Get cocoa butter lotion to rub on scars daily to aid in healing.

8. You will not be allowed to drive until you are off pain killers (and can twist to check blind spot)

9. Limit us of stairs to once a day until stronger.

10. Be aware you will fatigue easily. Don't overdo anything. Take naps or rest.

11. Use lots of pillows in the bed to make yourself more comfortable.

Other things I've learned

1. The reconstruction process is multi-step: create the breast, create the nipple, resize the new breast to match (liposuction), tattoo the nipple.  You must be completely healed before the nipple construction will be done (3+ months). 

2. Since I do not wear bras and wear tight shirts occasionally, I constructed a nipple using medical tape (cut in a circle) and the eraser tip from a pencil. It looks very real through clothes. 

3. Breast fat is different from stomach fat.  Stomach fat grows faster. Therefore when reconstruction is via Tram Flap, you need to manage your weight because weight gain will cause a faster increase in the reconstructed breasts size than in a natural breast.  You will end up asymmetrical.

4. You will probably experience post-traumatic stress syndrome.  Mine manifest itself with wild dreams and self-destructive behavior. Others experience increased startle reflex, nightmares, and sensitivity to light.

5. Side-effects from Tamoxifin that I've experienced:
   Menopausal symptoms - hot flashes, night sweats, irritability
   Headaches
   Bloating and weight gain
   Vaginal discharge
   Nausea
   Is it worth it? I haven't determined yet.  Want to give it more time to see if the symptoms diminish.
    

Breast Cancer and Breast Reconstruction Information

• http://www.royalmarsden.org/patientinfo/booklets/breast_reconstruction/breast.asp

• http://imaginis.com/index.asp