Beast is Back.....

When I am dancing with NED (no evidence of disease) you may notice that I don't post very often.  While I am living my life I don't always  relay all the good things about living life to it's fullest.  Things like the warm sun on your face, the smell of fresh cut grass, the look on your dog's face when you ask if it is time for a walk, the taste of a well crafted cocktail, the thrill of an upcoming vacation, a good laugh with family and friends, good food, etc, etc,......

These are the things I love and try to experience and enjoy everyday.  Then something comes along to knock you down.  And I hate to sound like a downer but sometimes it just pisses me off.......

The Highline

My last follow up appointment with the oncologist was April 25th.  My bloodwork indicated the CA 125 marker came back elevated.  This warranted a CT Scan which was scheduled for May16th.  By the way on May 17th we headed for New York with Dylan for the long weekend.  We had a great time and although the weather did not cooperate we did not let that stop us.  Unfortunately, Corina did not come with us.  She has finished her college program and is looking for work.  Anyone know of a health administration job opening?

Freedom Tower

Near Battery Park and NJ in the background

Dylan 

On May 22nd my oncologist let me know that the cancer was back once again.  There is a 3.5 cm tumour on the upper left hand side of my abdomen and some nodules through out the peritoneum.  Next we had the discussion of treatment which she wanted to begin right away.  I also wanted to start right away because we are leaving for Europe on June 7th and I want to have some semblance of health to enjoy ourselves.

My treatment protocol has been Taxol/Carboplatin regiment.  Very common and widely used for ovarian cancer all over the world.  However, like many people the Taxol has been debilitating to my body and so it is no longer an option.  It has left me with neuropathy in my hands.  Thankfully not my feet like some people.  Having more Taxol would only ensure further nerve damage in my hands and then my feet.  Not a good thing!  The treatment of cancer involves toxic chemicals that build toxicity in the body.  Major drawback...

Another factor in the treatment discussion is the length of time since my last treatment.  Last time I had chemo was September 2012.  In the chemo world the treatment is considered ineffective if there is less than 6 months since the last treatment.  I am at the 7th month mark and my oncologist had to decide whether to give me Carboplatin alone or with something else.  In addition you may recall from my earlier post that I reacted to Carboplatin the last time.  The answer to this is an extended infusion period to mitigate any reaction.

We decided together to go with Carbo only and very next day I had a call from hospital at 2:30 pm to ask me to come around 4:00 pm to be admitted so chemo could be administered all the next day.  How to make a dull situation a little more lively?  There is not much that can be done.  When I was not passed out from the benedryl I was fully awake and able to read.  I had several room mates during my time at hospital but I know from past experience that other cancer patients are not that chatty and I was not either.  I finally got to go home @ 9:30 Friday night.  Good news is that I did not have any reaction.  Just bored out of my mind.....

Genetic Testing

I just read a news article about Angelina Jolie and how she had a double mastectomy and reconstruction surgery.  She was found to have the BRCA1 mutation.  To me this just shows how she was proactive to get the testing done and take action to protect herself from breast and ovarian cancer.  I think this is awesome!

In my situation I had genetic testing after my treatment ended after my first bout with ovarian cancer in March of 2011.  Genetic testing is very easy.  It is a simple blood test.  It is sent to a special lab and the results come back within a couple of months.  Before any testing I sat down with a genetic counsellor at the cancer centre.  We discussed my family history and all incidences of cancer within the family.  There are actually very few incidences in the family but I qualified for paid genetic testing by our provincial government because of my recent cancer and my age.  I was found to have the BRCA2 mutation.

Some background info:

90% of all breast and ovarian cancers are considered sporadic, due to a combination of factors such as age, lifestyle, environment and chance.  The average woman's lifetime risk of breast cancer is in the range of 8-12% or about 1 in 10, and the average woman's lifetime risk of ovarian cancer is about 1.5% or 1 in 70.  The remaining 10% of breast and ovarian cancers are considered hereditary, due to an inherited mutation in a cancer-related gene such as BRCA1 or BRCA2.  Mutations in the BRCA1 or BRCA2 genes are associated with a high lifetime risk of breast cancer and ovarian cancer in women, as well as male breast and prostate cancers and possible other cancers to a lesser degree.  For individuals who carry a BRCA1 or BRCA2 mutation, each of their children will have a 50% chance of inheriting this mutation and also be at increased risk for these cancers.

A POSITIVE result indicates that a mutation has been identified in BRCA1 or BRCA2 which is known to be associated with increased lifetime risk for breast (40-85%) and ovarian (20-40%) cancers, male breast and prostate cancers, and possible other cancers. Genetic testing would then be available to blood relatives.

This means my chances of breast cancer has greatly increased and with this information we can take preventative measures like Angelina Jolie.  We had several meetings with the genetic counsellor to discuss what this all means and you can imagine how stressful this is.  I have not chosen the same route as AJ but my screening for breast cancer has stepped up a couple of notches.  I have an annual mammogram and a MRI.  This is the standard for high risk screening.

What this also means is that I inherited this mutation from one of my parents and it was found to be my father.  It also means he is at higher risk for certain cancers.  This also means he is now screened more frequently than before.  It also means my siblings may be at risk as well. And my children......

With this information it also means that my father's siblings and their children and their children may be carrying this gene and this gives them the opportunity to have meaningful discussions with their own physicians.  But I know that even though the information is out there it does not mean that people take action.  This is why I am so impressed by what Angelina Jolie did and at her age.  It is a brave thing because it is human nature to deny and therefore delay.

Symptoms and Diagnosis

This entry is intended to provide you with an account of symptoms that alerted me that something was wrong and the progression of a diagnosis by our health care system.  It is somewhat long so grab a drink.

Early August there was a day at work where I experienced a sharp pain in my lower left side.  It was quite painful and I decided to go home at noon to lie down.  Pain was mostly gone by next day and I returned to work.  Decided to call the doctor's office anyway to ask them to book an annual checkup.  I was several months overdue and this was as good a time as any.  Appointment was booked for October 14th.  Busy office.

Life went on as usual.  The only symptoms I recall is feeling bloated much of the time and my belly was expanded somewhat.  Sometime early to mid August I recall that we played a round of golf at Puslinch and we walked the course.  It was a hot day, one of many this past summer, and I recall complaining about the heat.  Nothing out of the ordinary!

Most of the time I didn't have pain per se but I was bloated and gaseous.  I made the decision I was becoming intolerant to some sort of food item and made some effort to remove wheat from my diet to see if anything changed.  I studied up food intolerances and tried substituting for wheat. This went on for a number of days but nothing changed and I was getting larger and more uncomfortable.

On August 22nd we were scheduled to participate in a golf tournament.  By now I was experiencing heaviness in the lower belly, walking was painful and looked 4 or 5 months pregnant!   Oh joy.....There was no way I could do this even with a cart and I suddenly realized I needed to go to the doctor.  Of course, it was the weekend so I went to the clinic.  After some blood work, urine analysis, x-rays and physical examination they could not give me any diagnosis.  There appeared to be some heaviness in the pelvic area and it was probably because I was constipated.  I was given a prescription for some stool softener and an appointment for an ultrasound for August 31st, which was the next step.

We spent the following 5 days at Pat and Suzanne's cottage.  It was during this time that I really came to terms with my inability to walk very far.  We would go for walks and I would end up way behind of everyone and holding my belly.  I couldn't wait to sit down again.  Back pain began as well.

The ultrasound results were available very quickly and my own doctor called August 31st to tell me that there is a sizable tumour close to my ovaries.  She was very sorry to be delivering this news via the phone but thought that I would want to know.  She had also arranged for a CT Scan and appointment was set for September 3rd.  She also arranged an appointment at London Health Sciences Hospital with Dr. Monique Bertrand, Gynecological Oncologist upon the recommendation from the Grand River Cancer Centre.  Things started to happen very fast now.  Both David and I were stunned as you can imagine and quickly had to come to terms of what this meant.

On September 7th we met with Dr. Bertrand.  In her opinion, based on the results of all the diagnostic tests and her physical examination she was quite sure it was cancer.  In the back of our minds we were still hoping it was nothing but we knew.  However, to be 100% sure she requested a biopsy with a oncologist radiologist scheduled for September 17th in London.

She described the treatment plan for ovarian cancer which would begin as soon as possible.  Good news is that I can do this in Kitchener at the Grand River Hosp.  There would be 3 treatments of chemotherapy 3 weeks apart.  Then she will do surgery to remove as much as she can.  After this 3 more treatments to get rid of the remainder missed by surgery.

She didn't think there is one mass as originally thought but several smaller ones.  All in the area of the ovaries.  There was also a possibility of cancer on the peritoneum.  This is the lining of the abdomen.  Treatment is the same for both types of cancer.

This was all confirmed with the biopsy.

Physically, I felt fine as long as I was sitting.  My belly had expanded quite a bit because of something called ascites.  This fluid will reduce with chemotherapy.  My regular clothes do not fit around the waist.


Dr. Bertrand called me at work on September 22nd to discuss the results of the biospy.  She confirmed it was grade 3 ovarian and peritoneal cancer.  Next steps was to send all test results to Grand River Hospital who would get in touch with me for a preliminary meeting.

So on September 29th we met with Dr. Califaretti, oncologist  and my nurse coordinator, Pat to discuss my diagnosis and treatment plan in more detail.  They were wonderful and caring.  Any questions we had were encouraged and they were completely accommodating.  Appointment for first treatment was set for the very next day @ 8:30 am.  My journey is only beginning.......