Our individual stories from sisters with Stage IV and Metastatic breast cancer

Jeanne Turner

I was diagnosed with Stage 1 breast cancer in April, 1994 at the age of 53.  I was in a new marriage, less than 3 years.  We had retired and were traveling, biking, hiking and just really enjoying our retirement. 
 
I chose mastectomy, and it was a wise decision as there were 2 other areas of DCIS in the breast besides the invasive ductal tumor we'd felt.  I also had tram reconstruction at the time of the surgery.
 
I was told I was fortunate that the tumor was under 2 cm and there were no positive nodes.  I kept hearing how lucky I was, that it was a tiny cancer and my chances of recurrence when very small - perhaps 5%.  Great news.  No need for chemo, I was put on tamoxifen.  It started making me terribly depressed, so I only took it for a year and a half.  When I stopped it the depression stopped in a few days. 
 
I had the usual follow up appointments and probably minimal testing - blood work and chest x rays, thorough exams of entire body.  No one was concerned about recurrence.
 
Forward to the spring of 1999 - I received my inquiry from the hospital regarding my status after 5 years.  I was feeling fine and reported that.  At about that time I did start noticing some shortness of breath - and when I'd complain everyone said, "Well you aren't as young as you used to be"  I agreed that was a fact.  Then I started having a pain in my side.  I'd been playing more golf and attributed it to pulled muscles.  Then I started having disturbances in my vision.  Flashing lights in my right eye.  I called my optometrist who said it sounded like a medical problem, perhaps high blood pressure and recommended I see my Doctor.  I had my checkup coming in a month and agreed with that.  Then the flashing light became colorful and can only be described as like a kaleidoscope.  Then one day I closed my left eye and realized that my vision in the right eye was partially gone, just a gray area. 
 
In the meantime I got into great pain on the golf course one day and went into the walk in clinic, where fortunately my Internist was working.  I self diagnosed a pulled muscle and she examined me and said the muscles in my side did seem very tight,  So she gave me muscle relaxants and some mild pain pills.  Said if it wasn't better in two days to return.
 
It wasn't and I did.  A few days later I had already scheduled an appointment with an ophthalmologist.  I was worrying a bit about the pain being a spread of cancer, but never dreamed the eye problem could be metastatic breast cancer.  I was told I needed to see a retina specialist and arranged that.  So to me that just meant "retina problem"
 
In the meantime my Internist ordered more blood tests and from those results a Cat Scan.  Results of that showed "something" in my lungs and bones.  I didn't ask what something was, knowing full well the possibilities. 
 
We had a fishing trip to Canada planned with our oldest Grandson.  So when more tests were suggested I said they'd have to wait, I wasn't going to tell an 11 year old boy his much anticipated trip was canceled.  So they gave me tamoxifen and pain pills and away we went.  We had a good trip, I can't say I didn't think about it, but certainly not all the time.  I love fishing and can forget the worries and rush of the world on a beautiful lake in the middle of nowhere in Canada.
 
The day I got back I saw the Retina Specialist and after dilating and looking into my eye he said, "Yes, it's metastatic breast cancer, tumors on the back of each eye."  He was the first one to say the nasty C work, I didn't tell him that for a couple of years.  He had the reports from the other doctors and said that if it was decided I do chemo that should stop the eye tumors, if not radiation could be done.
 
My husband had gone to run errands, I went to the bathroom and came out and saw him in the hall.  I started to cry for the first time and hugged him and told him it was cancer. 
 
Further testing showed very extensive bone tumors, just about everywhere from my entire skull to my femurs.  The shortness of breath was from cancer in the lungs with pleural effusion.  Cat scan showed areas in spleen and liver. 
 
I'm one to do a lot of reading and what I read was not encouraging.  The Doctors told me it was not curable, but was treatable.  Gave me the statistics - median time of survival was a few months less than 2 years.  But bless his heart he drew out a line and explained that meant 50% died by that time, the other 50% were spread out over many years, at that time 13 years looked like the longest survival.
 
With so many areas of metastases, I couldn't be optimistic about being a long time survivor, what I read told me that was mostly bone only patients.
 
I was given many options for treatment.  Being ER and PR positive hormonal treatment was "something I could try since I was not in immediate danger"  I was Her-2 positive and my doctor's preference was Herceptin and Taxotere (the dreaded chemo).  Or I could try Stem Cell Transplant at one of the larger hospitals still doing them.  Or I could do nothing. 
 
I chose hormonal treatment and to make this very long story shorter, it has been a good decision.  5 1/2 years later I am better, not worse that when diagnosed in August 1999.  I've had good news, bad news and lots of "we just don't know" times.  Progression the fall of 2000 meant radiation to my hips and femurs.  I had immediately had radiation to my eyes in the fall of 99.  The in the summer of 2002 I had radiation to my right upper arm and shoulder. Other suggestions of radiation have been made and I've decided against those areas for various reasons. 
 
I have now been on Arimidex since October, 2000 - my lungs have cleared up.  My bones are basically stable, which it a success at this stage.  Eye tumor haven't grown back.  The spleen and liver tumors have remained mostly stable - minor changes.  I have monthly infusions of Zometa to strengthen my bones and prevent them from crumbling, breaking.
 
The mental part of living with this is perhaps the toughest part.  I've still not had chemo and hope to avoid it.  I still have Herceptin which works wonderfully for many women who are Her 2 positive. 
 
My life has changed a lot.  Pain and the meds I require to deal with it have limited my activities.  My vision is not as much of a problem as I'd have thought.  When one eye has a blank area, with the two eyes together vision can be near perfect.  Some things will always look crooked and wavy when I look at them now.  I feared going blind, so I'm pleased to have the vision I have.
 
Things can change for me at any time.  They tell me each treatment will eventually fail and there's no guarantee the next will work.  But I'm a "long timer" in met years and try to make the best of what I can still do and not dwell on all the things I can't.
 
It's a very difficult journey and a lonely one.  I have a lot of people who support me, but they can't have any idea what it's like and I hope they never find out.
 
I work hard at enjoying each day, finding joy in little things, whatever I can.  And my children and grandchildren, my husband and even my little Bichon Frise comfort me.
 
Jeanne Turner